Ben's Video Tributes

Ben in the News

Praise You in this Storm



Always our Big Ben.


Benjamin David Bowen

Big Ben

November 14, 2002 - February 25, 2005

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Ben's Videos

Memorial service video slideshows and more...

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Ben in the News

Road naming ceremony and more...

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Ben's "Memory Spot"

Our oldest son, Elijah likes to refer to the place Ben is buried as his "memory spot".  Recently, we had this monument installed to celebrate Ben's life (and his love for Mickey :)  Ben's monument overlooks a beautiful wooded landscape and pond.

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Elijah turning on Disney's Dancing Lights
A VERY special Disney Magical Moment
Elijah and Minnie
Nate enjoying Animal Kingdom


2/25/2010 9:29 a.m.

2/27/09 9:13 a.m.  I continued thoughts from Wednesday below...  kind of a part 2 to the last post.  Just scroll down...

2/25/09  8:22 a.m. The perfect storm.

It amazes me that even in this age of technology and great understanding that devastating storms appear with little warning.  The details and depth of impact are not realized until we experience it first hand, in real time.  It seems the only thing you can predict is that human response will be remarkable.  We often see the very best of and very worst of people in the wake of a great storm.  In recent history, Hurricane Katrina demonstrated this well.  No one will forget the painful images of men and women unnecessarily looting, vandalizing and assaulting one another after that great storm.  On the other hand, the powerful videos of “average joes” risking their own lives to save a neighbor, opening homes and businesses to strangers needing shelter, and leaving stable careers to launch rebuilding programs for the thousands of refugees.  Either extreme is remarkable in and of itself and leaves a wake of great impact.

Sometimes storms are not made up of rain, wind and lightening – sometimes storms are made up of circumstances that are very personal – and today is a pointed reminder of a storm that my family faced when our son, Ben died of cancer.  It has been four years since we laid beside him in our bed, listening to Disney lullaby music , taking in every scent, touch and sound that he made.  The ugliness of the cancer in his body was extreme – pain so great that we began to pray for the worst thing a parent could fathom – that God take him away.  Those who share in our faith might wonder why that is the “worst thing” – that Heaven is a better place – but something inside me still longs for my son to be here with Jennifer and I.  This is a difficult thing to explain – because without hesitation, I know Ben is enjoying things we can only imagine.  The conditioned Christian response that he is in a better place doesn’t connect with the daddy in me that hungers to care and provide for my children.  I know that someday, when I am there with him, that innate hunger will be satisfied and I will finally “get it”.  God promised it.

Personal storms may have a lot of spectators, but few experience it.  The things that we saw, lives that were changed and impact of each bumpy step of Ben’s journey was carefully connected and orchestrated by God.  I mean it.  I know this because of the outcome – the evidences that something much bigger was happening through our journey.  At times, Jennifer and I were amazed by the way God was using our hurt to accomplish incredible things.  This does not mean we were happy about it.  This does not mean we were not heartbroken.  It does not always make sense, but you know what I’m talking about.  After the great loss on 9/11, incredible stories of heroism and hope emerged that inspired a nation like never before.  I was there – a part of the horrific recovery work and saw the reality of that day.  It was ugly.  The things that happened within the boundaries of “ground zero” would eat away at you the rest of your life if you only knew.  As great a loss as it was, somehow it drew in a nation and sparked “goodness” like never seen before. 

Throughout history, there are examples of how incredible “storms” have accomplished great things.  For those who experience it first hand, you taste something impossible to explain.   You pray for strength to survive the heartache and wisdom to connect the dots and serve God well.  For those who were spectators, great inspiration is born.  You  pray that inspiration sparks change and that you will live life differently because of it.  [to be continued...]

Part 2

As I reflect over the past few years, I see bits and pieces of the “wake” from the storm we faced with Ben.   Indeed, it has been impactful – but costly.  Lessons emerge that shape perspective and initiate change.  The first “ah-ha” moment for us was the importance to seek the truth about our faith.  You see, our story wasn’t all that remarkable.  Like you, we spent much of our time working and doing what we thought “needed to be done”.  We would (from time to time) complain about how time is slipping by – pledge to spend more quality time together as a family… you probably know the routine.  I was struggling with guilt because for the past year or so, I had withdrawn from my family and missed out on a lot.  [I allowed struggles from 9/11 to wreck my time at home.  Thankfully, a good friend pointed me to truths about my faith.  Those truths changed my life and behavior.] 

Jennifer and I are passionate about identifying the lessons from our journey and becoming what God has intended for us to be.  I have learned that through our storm we can accomplish great things – not for ourselves but for one much greater.  Ultimately, when we embrace this and make it our practice, many are served – way beyond our own capabilities.    I don’t quite understand it all – but catch glimpses of it in the random stories we hear about of lives changed because of our loss and response to it.  Tens of thousands of letters and email have flooded our home with powerful examples of this.  From medical professionals to politicians, corporate CEO’s to Hollywood stars and all of us “regular” people, we hear of something special that stands out about this journey that impacts hearts from every walk of life.  Many have commented on our strength.  While we are encouraged by the inference, we realize that it is less about our strength and more about our dependence.  At no point has our strength gotten us anywhere.  Quite frankly, this has been the weakest time of our lives – full of hurt, pain, disappointment and frustration.  Still, we are blessed beyond words and have found great joy in serving through this pain. 

There is so much I want to share about this – but find my mind and heart distracted.  We have been honored to serve many families over the past few years that are experiencing childhood cancer – and many who are caring for a child approaching end of life.  It has been a challenging journey as we have set course to organize this effort and help families across the country.  We given everything we have to this and in light of the economy have grown a bit discouraged.  Then I met Hannah.

A few weeks ago, a friend of mine introduced me to a family from Arkansas on Facebook.  I learned that this family has two beautiful teen daughters – one of which was diagnosed with brain cancer.  We reached out to her family, and quickly discovered that they were very special people!  As I learned more about this family, I read a story of how their oldest daughter, Hannah experienced a life-changing time at a church youth conference a little more than a year ago.  The speaker shared that God uses storms in our life to bring us close to Him and others closer to God.  She prayed that she would experience a storm to do just that.  Not long after, she was diagnosed with glioblastoma – a very difficult and deadly brain cancer.  Hannah’s approach to her diagnosis was one of clear focus.  She had the grace to realize that her battle was scary and painful while at the same time riddled with opportunity to serve God.  She seized the opportunities with courage.  Her family too has a mindset that recognizes that while personal storms cost us greatly, they can also return great things. 

A few hours ago, Hannah passed away – not to worry though, she is better now.  And while her parents begin to take this new part of the journey in, I sense they realize that the wake of Hannah’s storm is just beginning to reach shore.   Good for you, Hannah.  Good for you!

Tom, Jennifer and the kids

9/11/08  1:49 p.m.  It has been a while.  We certainly apprecicate the kind email and guestbook entries that continue to flow in.  It means the world to us!

There is much to catch up on - and I am going to launch a blog later today that will "fill in the blanks".  I will post a link here once it is up. 

We have been busy with the Childhood Cancer Network, the kiddos (Elijah, Nate and Samuel) and looking forward to Baby Bowen #5!  Yes, SHE is due this December around Christmas!  After four boys, a baby girl is quite a shock to us!  We are very excited and look forward to her arrival. 

I really hoped to share more - but I find my mind and heart so overwhelmed with thoughts and emotions that I struggle to assemble words.  Today marks year 7 since the attacks, and while the heaviness of heart is not held to one single day - it seems sobered by the mark in time.  Please remember the many who lost family during the attacks.

Check in later for the link to my blog.


So, here it is -  Check it out when you get a minute.

2/25/08  9:18 p.m.  I can't believe it...  three years since we last held our little guy.  We decided to stay here - rather than travel back home...  which evokes a heaviness we did not anticipate.  (I suppose the activity of traveling and being busy with visiting family and friends is a distraction from what we really think and feel.)

We are going to head out to shake it off a bit - do some things together as a family and have some fun doing things we did with Ben while he was here in Memphis at St. Jude.  We plan to run a few toys to the hospital to pass along to kids that are inpatient - please pray that we serve as an encouragement to these families (we don't even know who we will meet yet).

It would be easier to cry than to have this kind of heartache.  All we know is that God loves us, loves Ben and His grace is what really brings us peace. 

We certainly appreciate the encouraging emails and guestbook entries - it brings a smile to hear from you all.  We will post again later...


Tom for Jennifer and the boys.

12/31/07  7:19 a.m.  First, Jennifer and I want to thank you for helping us get the word out on the Home Depot contest.  The opportunity was literally dropped in our lap, and with only a few days to go before the deadline we posted our "what would we do with a HD $25,000 gift card" You Tube video entry.  Our hope is to add on an office space for the Childhood Cancer Network we organized.  While we did not win the Grand Prize, we did win a $200 Home Depot gift card.  Pretty cool!  Over 6,700 people viewed the video (part of the judging criteria) during the last four days of the contest.  Wow!  Our video is still posted on the Ben's home page.

We had a great Christmas - enjoying the boys and having fun playing with new toys :)  Even as I write those words, I feel some hesitancy because with each moment of fun, Jennifer and I think about what would Ben have done, how would he have laughed - all memories we constantly wish for.  Our minds and hearts are in two places now, and those around us (rightfully so) don't get it - so it is a struggle we hold to privately.

Building the Childhood Cancer Network is really exciting!  We are working hard - delicately balancing serving families and raising start up money.  We are about 20% to our budget goal - and pressing forward.  We sent out a Christmas mailing explaining more about the network and our needs - if you did not receive one email me your mailing address and I will send you one.  If you have not done so already, visit to make a secure, online check or credit pledge. 

We are tossing around some ideas that we really need input on - so I am working on a message board for this site to facilitate it.  One thing is for sure - whether you have a child with cancer or not, the lessons from knowing a family that does seems to deeply impact the world around them in ways no book, video or speech can.  We have seen this with Ben and the children we know that have shared in our battle with cancer.  Somehow, I want to leverage this to make a larger impact with our efforts.

We will keep you posted...

Meanwhile, have a happy new year!


Tom for Jennifer and the boys

11/27/07 1:25 p.m.  This past Sunday, our pastor was speaking on how God communicates with us.  Many think that when He speaks it is a loud, thunderous voice (like on TV:) others try to read God's voice into everything that happens (like when a traffic light turns green it means God said yes).  While I am far from expert in the matter, I can speak to my experience.

I believe God communicates to us in a lot of different ways.  Different theologies debate many of these ways and complicate the matter in such a way that it's no wonder most of us are confused.  To keep the battle to a minimum, I will speak to one way He communicated with us during some of the most challenging and stressful days - through people.  People like you!  So many of you consistently encouraged us through letters, email, Ben's Guestbook, visits...  the list goes on.  Somehow, God uses people to communicate love, compassion and support to others when they need to hear from Him.  Mind you, sometimes we didn't feel like paying attention - but all the same, God used them anyway.

Many have commented about our strength throughout this journey.  I promptly point out that it is the weakness they are struck by.  We depend on God and He works through people to help meet needs and get us through tough times. 

Even in the most difficult moments, God showed us He loves us through people.  Tammy (Hanna's mommy), drove 10 hours one-way on six occasions to help us with Ben's ugly end-of-life care - just 5 months after Hanna died.  One time she drove through a snow storm and it took her 17 hours (not to mention we had to use a four-wheeler to get to our home.)  Jennifer and I were deeply impacted by her selflessness and courage - but more than anything her willingness to let God use her to teach us so many things.

During time spent at the WTC, I helped recover a man that for a number of reasons impacted me tremendously.  A few years later, his wife and I connected.  I was drawn to her spirit and love for her children.  On the morning of 9/11, she was on the phone with Matthew - set the phone down to turn on the TV - and returned to silence.  I can not imagine such tragedy - yet her focus on honoring her husband by caring for her kids is remarkable.  When Ben was diagnosed, I was not surprised to experience incredible support from her and her children.  Her youngest, (then a 9 year old) organized her class to send patriotic supplies to us so we could decorate Ben's hospital room for July 4th.  A few months later, when we were told Ben would soon die, they gave up their Disney hotel spot so we could go, enjoy and create some lasting memories.  What's more, God used them to teach us many things about family and reaching out - no matter what.

I could share stories like this all day long and still run short on time - but suffice it to say that if God can communicate with us through circumstances and people like that, He can - and will do the same with every situation we encounter.  I suppose being mindful is what makes the difference between getting it or not.  I suppose the most important thing is to keep our eyes wide open.

Recently, we began the first phase of the Childhood Cancer Network - a network of people like Jennifer and I who have experienced childhood cancer first hand.  We are compiling the best and most relevant information for families that face childhood cancer so that they are informed and well equipped to make the tough and critical decisions.  I plan to post an information PDF by tomorrow about the organization.  We are committed to passing on the lessons we learned to those who need it most.  This is so much bigger than paying it forward  - it is life changing for everyone involved.  We want to invite you be a part - so we are outlining areas of focus so you can look for ways to help out and make a difference.  Mind you, it is not all about you helping others - through the experience they help you too!  I am sure Matthew's wife never dreamed that through her tragedy she would help a family like ours, but she did!  Thousands pitched in to help us through Ben's difficult journey - and in turn empowered us to help thousands more.

Sorry for babbling on...  it is hard to put "pen to paper" these thoughts and lessons.  More soon... 


Tom for Jennifer and the boys

11/22/07 6:35 p.m.  This morning, I was thinking through things I am thankful for - something that really needs to become a daily practice for me.  My mind went straight to life - not just physical, but to the life I live.  From the lessons and experiences that have shaped me (and our family) to the opportunities to live them out.

When I was young, our family lived a simple life.  My parents were hippies (thus my middle name is Zeppelin:)  I guess they were "right on" in their time (and I might add, had a nice taste in music:)  When I was a toddler, they discovered a relationship with God.  I believe that faith and life experience combined to shape their perspective on lots of things.  When I was 9, my dad died - leaving us three boys and my mom to navigate a very difficult time.  We were poverty poor, yet mom did not seek out assistance - rather focused on what's important and spent her time on those things.  God, family and self ranked at the top I am sure.

Needless to say, many very difficult years followed yet were embedded with incredible moments of truth that shaped my perspective on life, faith and family.  Often my brothers and I would see my mom privately reading the Bible, praying and seeking truth.  She invested her time in us and spent less on things that make life 'seem' nice.  While friends had more things, they were less engaged in life and family and even today, I see the unfortunate results from that.  I am sure that was not an easy decision for her as I struggle with working more to make more to give my kids more (does that make sense?).  Reality is, sometimes more is less when it comes to family.

In 2001, I served on a difficult recovery team at the World Trade Center.  I can speak freely about parts of this and have closed out other parts.  Through this time, I tried to keep and open mind and learn from the experience (as I was taught before) and hard, but incredible things came out of it.  New relationships, painful growing with Jennifer and the boys and lots of personal time with God. 

In 2004, Jennifer commented on how "we made it".  So many 9/11 workers marriages broke up from stress and the like that for us to have started down a healing path was a miracle.  Three weeks later, Ben was diagnosed with brain cancer.  After watching him battle an ugly, painful monster for a year, he died.

People who know me well often approach me with some degree of pity.  They know of my life journey and think (and sometimes say) "how terrible", never paying attention to the whole story.  Just like you, my story is not defined my circumstances - it is defined my response to those circumstances.  I have been blessed with wonderful people in my life that help me learn from every moment so that when I am called to task, I am ready. 

I am thankful for life - not so much the living and breathing, but what comes with it - the journey.  And without this journey, I would be lost.  To my family both here and there, I am thankful for you - we are in this together.

There is much to this story - I hope to share more over the next few weeks.



PS - Some pictures from the recent Disney trip for Ben's birthday are posted above. 

PPS - Some more information about the Network (exciting stuff!) will be posted later this week.

11/13/07  7:52 p.m.  (From Orlando, FL)  Tonight, while on a hunt for baby wipes in a Disney store, I watched a Jacksonville, FL mom patiently guide five young children (solo, I might add) through the store full of Disney wow - candy, toys and everything in-between.  Either she is insane or incredibly brave - probably a little bit of both.  :)

I suppose our journey has created a heightened awareness of how parents interact with their children - so I was tuned in as she carefully harnessed their "enthusiasm" without missing a teachable moment or choking out the innocent fun that every kid seeks out.  I took a moment to compliment her efforts and give each child some "Disney dollars" in honor of Ben's birthday.  We exchanged a few kind words and went about our way.

On a night that Jennifer and I should be putting the final touches on gift wrapping Ben's favorite toys or decorating a super-complicated birthday cake design (that we should have just paid a baker to do :) we find ourselves humbled.  We can't do anything for our little boy - we find that the only gift giving is from him to us.

We are different parents - we see things much more clearly than ever before.  Some things really matter and some things don't.  We constantly learn from our experiences, our children and each other - growing our family in new ways every day. 

As I spend time with families who face crisis - especially childhood medical crisis - I have discovered that there is extraordinary power involved.  God often uses these incredible life events to touch others in deep and lasting ways - accomplishing much in very little time. 

As we build the Childhood Cancer Network, we see that this incredible attribute will become a powerful component for those "on the outside looking in".  Imagine what impact thousands of children and their families can have across the world...

Even so, I stop to think about what brought this all about and my heart sinks - I miss my little boy.  Jennifer and I go to bed tonight with deep heartache and powerful pride in our little boy ---  Ben. 

We miss you son...

Mommy and Daddy

PS - A big thank you to the mother I mentioned earlier...  she reminded me in a random moment of the great gift Ben left us - to seize every moment.  Enjoy your time at Disney!

PPS - A BIG thank you to the Disney/MGM team for allowing Elijah to turn on the Christmas lights in honor of Ben tonight!  WoW!  We will try to post a picture of the lighting ceremony tomorrow.

11/01/07  9:41 p.m.  I am sorry for the delay in posting.  I just spent the past hour and a half posting and update only to have the session time out and delete everything I wrote :(

I am tired, struggling to think clearly - so I will recap briefly.

I miss my son.


  Click here for more information. 

(9/4/07)  9:33 p.m.  Whew!  It has been a long day!  (I know I promised an update this morning, but the launch of the network is demanding a lot of time :)  The response and encouragement regarding the Childhood Cancer Network is tremendous!  Thank you for your kind encouragement!  The email launch piece is almost complete and will go out soon - I will keep you posted here as the launch develops.

Jennifer shared a story that I wanted to share with you tonight - something that brought a smile to my heart.  She was talking with Elijah a little earlier about Ben - he has randomly brought Ben up with friends at school and such - and she asked him if it made him feel sad.  He thought for a minute and said that thinking of Ben didn't make him want to cry.  (He senses most people expect tears or overwhelming sadness when Ben is brought up.)  Instead, he said he felt like his heart was a jack-in-the-box.  When he thought about Ben his heart would "pop out" with a big smile and make him feel good.  He did not understand why people didn't get this.

I think Elijah is right on.  And I, too wonder why some people don't get it.  I have discovered that you can miss someone so much, be broken-hearted they are not here and still have a heart that "pops out" with happiness when you think of them.  I guess our jack-in-the-box heart is what keeps us going!

Meanwhile, it is pedal to the floor getting things together for the network.  I must get back to the work at hand.  Please pray for us as long hours are on order for the next week as we get this off the ground.  Jennifer is carrying a big load managing the boys (and providing critical input) while I put in the office time.  Our good friend, Karen Harris has been on the front line with us organizing the details and Hanna's mommy has invested many hours in planning.  

More to come... 

Believing God,

Tom for Jennifer and the boys

(8/26/07) 8:07 a.m.
  We are up and running again!  So much to catch up on...  Things here are well - the baby (Samuel) is healthy and growing.  While he was our smallest little guy at birth, he quickly caught up to his brothers - busting the charts on all fronts!  Jennifer is recovering great (easy for me to say), and Elijah and Nathanael can't get enough of him (this is good and bad:)  One thing is for sure... Samuel will be a rough and tough kid - by default!

As I shared a couple of months ago, some very exciting things are happening - a new journey that pulls together our story and keeps it interesting!  The ah-ha moment started on our way to bury Ben.  We were pulling into the cemetery - not paralyzed with grief, rather reinforced with a sense of commission or charge to do something different with our lives.  I remember saying to Jennifer when we pulled in the main gate of the cemetery, "We have a job to do."  She agreed.

After Ben's death, it didn't take long for calls to start coming in from other families who were new to the journey - with a child just diagnosed with cancer.  Some were reaching out to us within a couple of hours of "the discovery", others along the journey and some - facing end of life issues.  Most of what they were looking for was real, honest answers about the practical steps in the journey. 

As time pressed on, Jennifer and I were moved by the number of moms, dads, grandparents and friends connecting with us looking for support and direction.  We were (and remain) humbled by this.  We decided to wait, pray and heal a bit before acting on what seems like a calling.  I accepted a position with ALSAC/St. Jude and really felt honored to help the people who helped us and our friends so much.  Families from around the country continued to contact us - and we, along with the help of some friends found ways to help meet their needs.  Meanwhile, we kept our hearts and minds open to what was ahead and how we can be a part of something bigger.

Late last year, we identified key areas of need and specific ways to address those needs for families who face childhood cancer.  We discovered a niche - something desperately needed.  I tendered my resignation to ALSAC/St.Jude and began to formally explore the next steps in addressing this need.  (I continue to volunteer my time with St. Jude by speaking and assisting with fundraising events - something I will always be honored to do.)

The name of our effort is the Childhood Cancer Network - because it is built on a network of families like us - people who have walked in these shoes coming together from across the U.S. to create a core of relevant information that new (to the journey) families can access.  Initially, the mode of communication will be a comprehensive website that will house a variety of informational pieces addressing the core areas of need our team has identified.

We are excited about this initiative!  We want to multiply our ability to field questions from families nationwide by assembling an experienced team and creating a great website.  Response has been fantastic - actually better than expected.  In order to keep up with demand, we need to get busy with implementation

This week, I will share more about the launch - including ways to help.  Expect several updates this week.  Please pray for us as we prepare a national web based fundraising campaign this week - a lot to get done on top of a very busy work load.  (This interactive/visual campaign will go out via email...  If you have not provided (or are not sure if you have) your email address via guestbook entry (there is a line for that when you sign the guestbook), please do so now - even if you just sign your name and email address.  We will weed out any duplicates.  We want to include everyone!  Click here to sign Ben's Guestbook.

Ben - we are proud of you son!  You inspired us to do something bigger than ourselves.  You brought people together - new friends - to help others.  Way to go!

Believing together,

Tom for Jennifer and all of the boys!

(6/14/07) 5:49 a.m.  Samuel David Bowen is here!  Baby Samuel was born at 10:14 p.m. last night - he and Jennifer are doing great.  He weighed in at 7lbs 15oz and is 20 1/2 inches long (our smallest guy yet by 1 1/2 lbs:)

Jennifer handled delivery with grace - never complaining and kindly putting up with me :)  She is such a good mommy!

We see a lot of Ben and Nate in Samuel (except for size) and he has light colored hair (what little there is).

We are in Huntington (WV) at present preparing for the House that Ben Built Giveaway this coming Sunday.  Be sure to tune in Sunday from 2-4 p.m. on WCHS TV8 (WV) because Samuel will make his big debut on the show :)

We are so happy to welcome this little man into our life!  What a gift!!!


PS - Pics to be posted this afternoon/evening.

(6/13/07) 7:33 a.m. It has been a difficult week. I was out of town in Miami when I received a call from Ronell's mommy that she had taken a fast, bad turn. (Ronell came to St. Jude from Trinidad about a week after Ben did in 2004.)

Honestly, spending the week in the hospital caring for Ronell has been one of the most powerful weeks of my life. Her end of life was not easy -- suffering was great. Still, she continued to be a conduit from God to us revealing some of the greatest truths in life. I look forward to sharing some of these times with you. Meanwhile, please continue to visit and encourage Ronell's mommy, Camy at

I am working on very limited sleep at the moment - about 15 hours of sleep over 7 nights - so forgive the brievity of this update... I will post more about the upcoming Childhood Cancer Network very soon. Please pray for my friends that joined me in caring for Ronell - they have given a lot of time with little rest to care for her. They experienced things that most will never experience in a lifetime - with very little sleep. Specifically, Karen Harris, Karen Reeves, Josh Reeves, Krista York and Nicole Mitchell. They are tired and broken right now.

Another one of our friends, Rayley (, RAYLEYROSE is her ID) died this past week. She had just turned one and like Ben, had ATRT (brain cancer). Our hearts are broken for them - they are great people.

Please pray for Jennifer - she is in labor with contractions every 4-7 minutes apart. The doctors say she isn't quite ready to give birth and advised her to keep moving/walking to help "encourage" our little one along. We meet with the doctor this morning to see if things have changed and HOPEFULLY we will be in the hospital soon. She has been experiencing contractions every 4-7 minutes since Sunday which does not allow for good rest :( We will keep you posted...


Tom for Jennifer and the boys

(6/5/07) 5:08 a.m. This is from a friend, Karen Harris. Tom was about to update and then got called to something else. We need your prayers for one of Ben's friends Ronell Ragbir. Tom is in Memphis with her at St. Jude. She is at the end of her life- please pray for every aspect of this process- for Ronell and for the family and friends that are surrounding her during this time. The struggles are numerous. Please visit Ronell's website is . We are checking it regularly and it has been giving all those involved encouragment to know that people are united in prayer on her behalf.

(6/1/07) 8:14 a.m. Greetings fr

(5/29/07) 8:38 a.m. Jennifer and I so appreciate the continued encouragement from you all... the daily stream of emails remind us that God loves us and has a purpose for this journey.

We are doing well... (easy for me to say - I am not the one 36 weeks pregnant :) So let me begin by sharing about Bowen BOY number four. Samuel David is expected sometime mid-June and is doing well. Jennifer is doing great - but is ready to have this baby! We have traveled back to WV so that she can settle in (and so I wouldn't have to deliver a child on the side of the highway) before the big St. Jude Dream Home giveaway June 17th (see link above). If things go as planned, she will deliver sometime early the week of the 10th and be "ready to go" for the giveway later in the week. She is a trooper - preganant, caring for a 17 month old, 6 year old and a 35 year old :) - with a smile on her face and never one complaint. She is one very special woman.

Elijah and Nate are doing great - Elijah just completed kindergarten and Nate is walking, talking and getting into everything. It will be interesting to see what Baby #4 brings to the table! Elijah often speaks of Ben. We wonder what must be going through his mind - and then he blurts out some of the most profound things about Ben, heaven and what lies ahead for all of us. A child's perspective is pure and (usually) right on.

Some very exciting things are going on with Jennifer and I regarding career moves. Tonight, (when the boys are asleep) I will post an update to fill you all in. (Nate is calling me to wrestle with him and I can't turn him down!) Meanwhile, take a minute to do something simple for your kids today that invloves your time - you will never get that opportunity again!


Tom for Jennifer and the boys (all of them!)

(5/28/07) 11:54 a.m. It is great to be up and running again! Jennifer and I will post an update later this evening - after the family get together. So much to share...


(2/25/07) 9:33 p.m. EST Mommy and Daddy miss you Ben...

(2/24/07) Be sure to check out The House That Ben Built link above... WCHS and FOX 11 assembled a fantastic series about Ben, St. Jude and the WV Dream Home - The House That Ben Built! More to come!

The Bowen's will post an update later tonight or tomorrow.

(2/19/07) 4:02 p.m. It has been a while. I think of this site constantly - vising it several time a day. I feel like there is a part of Ben living and breathing in these pages but when I look up, I realize the hard truth - he's gone. The feeling is the same to day as it was yesterday, last month and last year. Lost and wondering best describes it.

Each day is a new day and with it new opportunities. God continues to use Ben's life (and death) to touch many lives. Countless emails stream in with powerful stories of lives changed. Moms, dads, and students from every walk of life seem to find a way to connect with Ben's story and make it their own. Jennifer and I equally find ourselves challenged by the great things we learn throughout this journey.

One of the greatest challenges I experienced recently was the importance of awareness of God's purpose for my life. This purpose is, after all, something that was designed just for me, something that I was prepared and well equipped for. (This is true for all of us.) Often, education, experience, others and circumstances dictate our perceived purpose. After having front row seats to God's purpose for Ben's life, I am convinced that (while preparation is good), nothing beats living the greatest dream of all - God's.

Jennifer and I have often wondered why Ben's end of life was so especially difficult. For a child to have endured what he did remarkably, it didn't seem logical (or humane) that he suffer so terribly. The full scope of his last months is only fully realized by a few. The picture found at the top of this page could only remind us of our Ben as within a month he began to look and feel horrible. The last couple of months were round the clock care, a mini-lab in our bedroom with a cocktail of pain meds. The dosage of morphine exceeded what our hospice team gives adults and yet didn't begin to control pain. He gnashed his teeth till the wore down, would regurgitate fecal matter and more than tripled his body size. The neuropathic pain became so bad we could not touch his skin - not even to hold him in our arms.

Why? He is such a warrior... this could not be happening. For a long time I have wrestled with this. (I still wrestle with this.) Yet, as Jennifer and I reflect on two years of heartbreak, we realize that God's purpose did not cease to exist the day the pain began for Ben. Even in the ugliness, purpose can be found.

Over the past two years, word of Ben's story - including those very difficult last months trickled about. Families of children new to this journey began to reach out to us - through this very website - and ask for help. We found ourselves moving along side mommy's and daddy's wanting help with end of life matters. How to keep their child comfortable, "best practices" and the like. Sometimes just talking with another person who has walked this path is all that is required. Somehow, the torture of those last months turned into a way to help ease the pain of others. Something that is so "Ben". There is always something bigger going on and no real explanation but God's grace.

This week , I will share what Jennifer and I feel that God is leading us to do with all of this... and we hope that many of you will join us. Later this week we will travel home to visit Ben's "memory spot" and spend time with family. While in town, we will spend time with WCHS/FOX 11 launching the WV Dream House (for St. Jude). It is called "The House that Ben Built." Also, our friends with The Wolf radio station will have us join them for the St. Jude Country Cares Radiothon.

Each night this week, WCHS/FOX 11 will air a series about Ben's journey and the impact he made. Tune in at 6 PM and 10 PM each night Monday through Thursday. More information about this special house will follow this week.


Tom for Jennifer and the boys.

(12/24/06) 9:42 p.m. Nights like this never seem the same. Holidays, special events or a daddy's day out with the boys seem to be suspended in a different time when everyone was present. It is Christmas Eve and everything and everybody is moving about according to the plan at hand, but though smiles and light heartedness don our faces, we are distracted, heartbroken and out of place.

I am not sure what to say or what will fix these feelings now, I only know that Jennifer and I share these thoughts and are walking this journey together only by the grace of God. Without a doubt, it is that grace that brings us together to celebrate this holiday and recognize God's great gift for each of us. It is the same grace that enables Jennifer and I to put one foot in front of the other when we feel so broken and have confidence in the hope God has promised us.

So while we ache beyond words we will rest easy tonight - reminded that Christ's birth brought Ben (and the rest of us :) to a place where the ache is all gone and a new life is much sweeter than all of the Christmas get togethers combined!

Merry Christmas, sweet Ben. Your mommy and daddy and bothers miss you!


Tom for Jennifer and the boys.

PS - I guess it is OK to make this a "PS"... We recently learned that we are expecting "Bowen Baby #4"... He or She is due sometime next June. Here we go again :)

7:30 p.m.


What a day! We spent the day running around the Magic Kingdom having fun and remembering you. Every turn, every smell, every sound would bring to mind something about you and the fantastic time we spent here with you. The Disney staff still remember the time spent with you and even took time to do some nice things with us to remember your special day.

We met a little boy in line at Chef Mickey's who is celebrating his birthday today with you, so we gave him a little gift in your memory and had a great talk with his mommy and daddy. They seemed like nice people. I am sure he is going to have fun with his Disney Dollars!

Here it is - the day is nearly over, your brothers are in bed and another year has passed. Your mommy and I think about all of the fun Disney brings us - and how all of the Disney magic in the world can not cover up the hurt our hearts feel missing you. We want to see you around every turn, smell your skin and hear your funny little laugh. To be able to sit on the bench on that bridge again and hold you on our lap watching the Mickey's Spectromagic parade pass by would be priceless. Nevertheless, our pain is too deep and too wide to ever be filled - at least in this life. I know you are well cared for now -that God's plan for your life has been and continues to be a bright, shining light to all who pay attention. Even today, we are amazed by how many lives we encountered whose life has been touched by yours... something that reinforces our belief that your every step was ordered by God to accomplish such things and that our steps should be considered to be equally valued by Him.

Ben, we will are so proud of you and want to let you know that tonight, we are in the front of the line of thousands - if not millions of people - saying Happy Birthday and thank you for everything your life has done to make us better people. We will not allow our pain to cloud the lessons God teaches us through your life.

We hurt, we laugh and we press on. Most importantly we continue to believe God's promises. We will see you there, son. Goodnight our sweet boy. We love you.

Mommy and Daddy

(11/14/06) 7:26 a.m. Happy Birthday Ben! Today we are celebrating Ben's life from Disney - a place that holds many great memories for us. This evening (when the boys are asleep), we will post an update. Until then, have a great day!

We love you and miss you son!

Still believing,

Mommy, Daddy, Elijah and Nate

We are updating this website... some links, etc. may not work correctly and things may be a little out of order - please be patient. Thank you! Update will be posted soon.

(8/7/06) 9:28 p.m. Jennifer and I find ourselves tremendously encouraged by the continued outpouring of support and care. At times, I wonder about what God has in store for us - that this journey and all that is a part of it is the essence of a great plan.

Indeed, as I reflect on the past couple of years (for that matter, since September 2001) and recognize that what felt like isolated challenges, hurts and pains were in reality, something much bigger and all together intentional. I am cautious to say bigger and better because I find it hard to say that the horrors I witnessed at the WTC site, the toll it took on my family and the toll it has taken on so many can be associated with any good. (At least within my understanding.)

I certainly don't want to ever soften Ben's experience with rhetoric proclaiming all of the good that came from his suffering and death. My son ground his teeth in pain till they wore down - something that all of the good in the world will never reconcile in my heart. I will never simplify tragedy with such thinking. I will place my hope in God's plan for our life (and Ben's) and acknowledge that it is OK to be hurt deeply without it tasting good and making a lot of sense. I will recognize that God has used (and still is) such hurt for things much greater than this man will ever understand. Once again, I am drawn to the lyrics of the song mentioned below.

It seems to me that (especially in circles of faith) we feel that we must always make sense of difficult times. My experience leads me to believe that sometimes it is better to not make sense of it all (or encourage others to do the same) because at the end of the day such words do little to comfort. It is my faith in God - and knowing that He keeps his promises that eases my heart. It is the kind reminders from friends and family that yes, this stinks - but remember the promises that encourage and lift our hearts. The reminders of how our tragedies have impacted the lives of others in positive ways (even though it doesn't make it alright now) help keep us comforted and looking forward to what lies ahead.

I suppose my musings have rambled on enough now - but I must leave with this... while my understanding can't connect all of the dots right now I am confident that God already has. I will do my best to trust Him and rest easy tonight.


Tom for Jennifer and the boys.

PS - Please remember Hanna's family this Wednesday (August 9) - It will be the 2nd anniversary of her death. David, Tammy and their entire family are among our dearest friends. God has used - and continues to do so - Hanna's life to impact people from all walks of life. She certainly holds a very special place in our heart. Elijah has a very special place in his heart for Hanna - seldom does a day go by that he doesn't thank God for taking good care of her now and making her "all better". We miss you princess Hanna! Please take a minute to send a note of encouragement to her family.

(7/9/06) 8:43 p.m. So sorry for the lull... so many times I would try to gather my thoughts to share only to find that most of them are too desperate. It takes my breath away when I stop to think that it has been a year and a half since I last touched my little boy. Jennifer and I both share these struggles together - something that I believe brings some level of peace and comfort. That matched with (not only the belief, but) our experiences with God is what keeps us sane.

I have posted a song that I have found to be the best representation of our heart over the past few months. I encourage you to listen to it and if appropriate, experience it. Click here to go to the song page.

Many thanks to you all for continuing to visit Ben's website and sign his Guestbook and email us notes of encouragement. Many times a day, Jennifer and I check the Guestbook entries and the web counter to find some evidence that Ben is still touching lives. Even when we can't "speak" you have been faithful to encourage and bless us beyond words.

Please pray that I have the courage to share what should be shared and not stifle Ben's story from continuing to touch lives worldwide. I am still working on the new pages... more to follow.

As for our family, we are all well... Nathanael is a BIG boy and looks just like Ben :) Elijah is doing great. He has started asking questions about Ben's end of life time that is difficult to navigate. Jennifer and I are very proud of him - a very compassionate child with much wisdom. The other day he told me he couldn't wait to grow up. I asked him why (thinking he would say something like so he could "stay up late" or watch Pirates of the Caribbean). Instead, he said "So I can get to Heaven and see God, Ben and Hanna (and he really meant it!) What a perspective - so pure and simple.

Jennifer and I are doing well... just finding our way through this, leaning in and looking up. We meet other parents along the way facing much of the same we did with Ben. We find great encouragement in helping them along the journey.

Again, we truly value your prayers and encouragement. We will talk soon...

Believing - even when I my heart is broken,

Tom for Jennifer and the boys.

PS - Some exciting news from our home state - West Virginia. Governor Manchin has decided to name a major roadway the "Big Ben" Bowen Highway to honor Ben's life and legacy. More to come soon - we understand the signs are ready and we are waiting to set a date. We may try to tie the ceremony in to the 2nd Annual Big Ben 5K for Kids. Also, Ben's monument should be ready very soon. We plan to have a special service when it is ready. We will keep you posted.

(5/18/06) 7:42 a.m. This week, while on the "It's a Small World Ride" at Disney, Elijah demonstrated wisdom far beyond his years. Sitting on the edge of his seat, with bright eyes and an open-mouthed smile, his face represented his wonderment and awe. He didn't say a thing the whole time - the delightful shock was too much.

About half way through the ride, he said "Daddy, Ben sees this everyday." He paused a moment and he said, "This must be what it's like in Heaven!"

What a thought! I suppose that in a lot of ways, he's right. A perfect world, no hurt, no pain - lots of singing and having fun and people from every walk of life together without prejudice. A guess that once we get there, it will be a "small world after all"!

Ben, you keep singing and dancing!


Tom for Elijah and the family.

(5/15/06) 7:25 a.m. Sorry for the update delay and interruption - we have experienced some problems with our web service. All is well now. It is good to be back!

Greetings from DISNEY! We are on vacation at Walt Disney World in Orlando - one of our favorite places! The fact that I have used three exclamation marks in the past few sentences should be a sign that this trip is much needed :) We have so much fun here as a family and have such vivid memories of time spent here with Ben. Every turn we make is packed with a clear and powerful memory of Ben (and our family together). It is incredibly encouraging to run into Disney staff - some we know and some we don't - that remember Ben and his infectious smile and personality. They come up to us and reflect on Ben's impact on their life.

I have to run and play pirates with Elijah (he is running around the room with a pirate map and hat) - so I must cut this short. Jennifer and I are going to add a few new pages to this site that we think you will enjoy and find challenging. It looks like we are all set on this end, so the pages will be out very soon. (Although it may have to wait until we are home:)

As for the family, everyone is doing great. Nathanael is our biggest boy yet - doing fantastic! Elijah is - well, a pirate at the moment (doing great) and Jennifer and I continue to take this one day at a time. With each "magical" moment here at Disney, our hearts are heavy realizing that Mickey's pal, Ben is not with us. (Although we rest our heads at night knowing he is with One much greater.)

Though it is a day late, HAPPY MOTHER'S DAY! Jennifer is a fantastic mommy and should be an example to all. Grace, strength and dependence on God set her apart and is the anchor of this family. Remember to pray for the many mom's out there fighting for their child's life...


Tom for Jennifer and the boys.

(4/22/06) See the link to the Marlo Thomas Special for St. Jude above... features a segment about Ben! Update to follow this weekend.

(4/10/06) 9:14 p.m. The St. Jude Remembrance Day was nice but has taken a toll. We are spent - emotionally and physically. We saw many good friends - people we miss dearly. We have posted a couple of photos of Ben's tribute wall above - his stood right next to Hanna's ( .

We will post a few more pictures later this week - and plan to post Ben's St. Jude TV special segment - a very powerful piece.

Please pray for our hearts to experience some rest tonight...


Tom and Jennifer for the boys.

(4/6/06) 7:17 a.m. This Friday evening and Saturday, St. Jude will host Remembrance Day - an annual event that honors St. Jude children who did not survive their battle with cancer or other catastrophic childhood disease. Please pray for our family and the many families who will travel to Memphis... hearts are heavy while yet proud of what these children have accomplished for others that will walk in their shoes.

As a St. Jude family, often powerful friendships are forged between families. You live, play, eat and fight for your child's life together. Many times, the news that treatment is failing and it is time to "go home" comes as a total surprise to everyone. People that you love are often stripped away to deal with the most challenging times with little or no notice. How can this be?

This weekend, we will see some of these same friends - for the first time since we parted ways with stunned and broken hearts. We are not sure what to expect - but we look forward to it because (as he always does), God will use this time to build and heal hearts.

We will update you and post pictures from Remembrance Day this weekend... meanwhile we all would value your prayers.


Tom and Jennifer for the boys.

(3/31/06) 11:42 p.m. It has been a little while since I last shared on these pages. Even so, many of you have been kind to continue to encourage us through letters, email and Guestbook entries... thank you. Many times your kind words are just what is needed at just the right time. Jennifer and I are grateful and find comfort in each thoughtful word.

I have really struggled with what to say on these pages over the past year. I suppose the words would reflect a brokenness that would be too raw and too painful. I notice how when death happens, there is much attention for a short while, and then an expectation to move on and "get better". I think that for many who have walked this path, that very feeling causes some level of separation or withdraw.

A couple of weeks ago, I met a kind man from California who only recently learned of Ben. He was deeply moved by Ben's impact. He took the time to visit St. Jude to see for himself where Ben was treated, but more importantly, from where he touch so many lives around the world. His sincerity and kind encouragement reminded me that my fears can't (and shouldn't) outweigh the powerful message and impact of Ben's story. As shared in the cover letter of this website, "...(his) story is so much bigger than this..." Thank God.

I recognize that there are opportunities for us to heal, lives to be touched and cures to be found by simply keeping the story book open. We will begin to make some changes to the website over the next few weeks help accomplish this. We may need some help, and will keep you posted. Meanwhile, we value your prayers - we feel like crawling in a hole and not coming out right now. God help us to keep moving forward.

I will post an journal entry Sunday or Monday night..

Believing (even when we don't feel like it),

Tom for Jennifer and the boys.

PS - Please keep some dear St. Jude friends in your prayers.

Jay Gaskins died earlier today. He and his family are such an encouragement to so many and we are heart broken for them. You can pass along a word of encouragement to his family by visiting Jay's website.

Hayden Moore is not doing well. He and his family are facing some very difficult days. Please encourage them by visiting . (Hayden and Ben are on the St. Jude commercial and the Marlo Thomas special together.)

Taylor Watson - From our home state and has the same cancer Ben did. They have received very challenging news and are praying for a miracle. Visit Taylor's website.

(3/30/06) 8:47 p.m. I attempted to post an update this evening and something malfunctioned with the web service and I lost everything. I am tired and my heart is heavy - I will repost tomorrow night.


(2/25/06)  7:43 p.m. EST    I find myself at a loss for words this evening - not because my mind or heart is blank, but because I realize words fall short.  I suppose that is the truest reflection of my heart this evening...  words fall short

When I was a fireman, I would train and prepare myself for that "moment" when our department was called to action.  Often, we would train in conditions that were very similiar to the real deal...  yet always in an controlled environment.  We would suit up, strap on and respond to these exercises as if lives were on the line.  However, when the real alarm would sound and details about a crisis emerged my heart would pound - I could feel the blood pumping through my body.  However, nothing compared to the feeling I would get just moments before I would enter a burning house or arrive on an accident scene.  A disciplined focus and personal challenge began to rise up within.  An ability to see through the obvious and look forward to what needs to be done wells up.  Nothing can stop you - you will do what needs to be done.

That same spirit is what I feel this evening.  Though my heart pounds realizing the obvious significance of this day, I see through that and have a strong sense of personal challenge - to live life differently.  I look forward to what lies ahead.  As I remember Ben's life here, it was more than one chapter.  He was a fun, go get it type of kid - always determined.  Jennifer and I bought him a ride-on fire truck a few months before he was diagnosed and instead of riding it, he always lined it up against the back of the couch and used it as a ladder to climb over it, tumbling down the other side.  Daring and resourceful, Jennifer and I knew he would be a handful :)  Once we learned that he had cancer, his strong (yet sweet) spirit and endearing smile would warm our hearts and the hearts of those who encountered him.  Regardless of challenge, pain or circumstance, Ben never cried - only smiled (even when he cringed in pain).  At times, we wondered why he was like this...  he was extraordinarily different and he stood out.  Our wondering turned to wonder as we  watched Ben's story reached far and wide impacting millions around the world.  It was June 2004 when Jennifer and I realized that he had a special mission and quite frankly our fear of losing him was settled.  We did not share this with anyone because we didn't want people to misunderstand us and think we had given up.  Quite the opposite... we had given in to exploring God's plan for Ben (and our family).  We would do whatever it takes to save our son, but we would not allow our pursuit to blind us of the miracles God was performing with his life in that moment.  It was then that I realized that I was in the presence of a real man of God.

We enjoyed the best year of our lives as a family, exploring a level of closeness that few experience in a life time.  Even in the fun, Ben was set apart -  at Disney he reached far and wide among the cast (staff) and made a profound impact on the company.  Everywhere he went, there was an uncommon level of favor and a trail of changed lives along the way. 

As Ben's body began to deteriorate, his spirit and impact only grew.  It was during these months that most people began to see the big picture and realize what Ben's story was all about.  Life is much bigger than this.  God designed it to be that way.  Our focus can't be on the here and now - it must be fixed on that unique "charge" that God has for each of us. 

That brings me back to where I started tonight.  Words fall short.  It is not enough to say we are different people because of Ben's life and legacy - we must be different people.  What do you do differently?  Things we value will be obvious in our observable behavior. What does your behavior tell your wife, husband or kids?  What does your behavior tell your coworkers and friends?  As for me, my schedule no longer dictates my life.  I take time to wrestle Eli and hang out with Jennifer.  We created a room in Ben's honor in our new home - a hearth room with no TV - only board games, family photo albums and Mickey Mouse :)  I will not dishonor my son by talking and not doing.  I will not turn my back on the lessons God has taught me along this journey.  I will live life differently.

Just like my time in the fire service, you can train and prepare with the best tools in the world, but it is not until you are called to action and "on scene" do you really get focused and rise to the challenge.  That is where I am tonight...  broken hearted and devastated that my little boy is not here with us.  Yet I am overwhelmed with focus and personal challenge to be different... live different.

I am confident that God chose a very special boy for a very special task.  Ben executed it well and was called back home.  I am thankful for his life and look forward to living the challenge he presented me.  How about you?

With a broken heart,

Tom for Jennifer and the boys.

(2/19/06)  10:03 p.m.  We miss you Ben.

Mommy and Daddy.

(2/13/06)  7:25 p.m.  How can it be?  Each day carries a weight that does not lift, heartbreak that does not mend.  I am quick to realize that I have nothing to complain about - for each thought is matched with the knowledge of what Ben endured - especially during these last months.  I suppose I am frustrated that we could not fix things and ease his suffering...  or maybe it is the realization that he's not coming back - that they are not going to call our name over the PA system,  "Would the parents of Ben Bowen please report to recovery..."  I am not sure that I can articulate the feelings adequately.

We replay these last months with such precision - as if it was digitally mastered.  Much like the way certain family memories from many years past are quickly recalled as if it happened yesterday - especially those times spent together around holidays, weddings or other life events.  So real - you can almost lose track of the here and now.  Each day since December 26 carries with it that level of memory because of the extreme nature of things Ben faced.  I find myself frustrated because I can not so readily remember the moments of fun spent right after we returned from St. Jude - the good times, void of medicines and needles...  at home again.

We have learned how to adapt this journey to our new life - career, family and friends.  Still, I feel that I walk a tight rope of feelings and sanity.  I put on my game face for work each day, my smiles and place face with the boys and Jennifer - only God's grace is keeping me from falling.  (What else could it be?)

Jennifer and I were talking recently about this feeling and noticed that our attachment to "things" of this world is pretty shallow.  If we were stripped of everything right now I am not sure it would phase us.  It reminds me of the disconnect you feel with something or someone you know longer care about.  I really think that our measure of success is not tied to this world.  Our eyes are fixed on the promises of God and the place where we will no longer walk the tight rope.  Reality is, we are homesick - and I am not talking about WV :)

I will share more soon - and we are working on something special to share with you to honor Ben this February 25th.  For now, please pray that we experience God's grace fully, trust him and remain faithful to God and each other as a family.  We are grateful for your kind encouragement during these days in the Guestbook and email.  Jennifier and I were talking last night about how fortunate we are to have so many kind people loving and encouraging us through this journey.  We will never forget.

Believing with a heavy heart,

Tom for Jennifer and the boys (except for Ben whose heart is free of this stuff :)



(2/11/06)  6:33 p.m.  We will update later this weekend...  It has been tough lately - we value your prayers.  We wanted to take a minute to share something fun - Elijah was disappointed that it does not snow here in the south...  until a surprise snow "storm" (as they call it down here:) came in this afternoon.  Be sure to check out the picture above.

(1/17/06)  9:05 p.m.  What to say...  where to start?  It is hard to explain a heart that is hurt yet peaceful, content yet homesick.  Each day since our last update is packed with long difficult memories - not for us but for our precious little boy.  It was around Christmas that everything changed for Ben - and there was no going back.  Each night (while we could still touch him and not cause him pain) he would lay in our bed aware often saying mommy or daddy and cracking a small smile.  I would curl up by his side and latch on to his arm in the same manner he did with me as an infant - as if to rest in the strong one.  

I miss those moments - there was no way to realize the value other than to experience each moment fully, learn from it and live life differently.  I wonder how many read these pages and are deeply moved - yet do not see the value and fail to move the lesson from this page to their life? 

Jennifer and I don't spend time asking why...  quite frankly, we are consumed with missing him that the why, should have and could have's don't seem to really matter.  I believe that each step of Ben's journey carried with it distinct purpose and a measure of grace that I don't fully understand (yet).  Though our heart aches with each difficult remembrance we are stirred to learn from the moment and live differently.  There is no doubt Ben was given a special gift. Honestly, I consider him a Saint because his time here was uniquely appointed with extraordinary results.  God help me to see through the immediate hurt and do what needs to be done to live life differently.  God help us all.

I am praying about ways we can encourage people to apply the powerful message of Ben's story - that those who hear it are moved to experience God's unique plan for their life.  I would value your prayers and suggestions - feel free to email me.

As for our family, all is well.  Nathanael is a calm child, easy going a joy to be around.  Eli is loving his new role and is doing a great job!  I will share more about my work with St. Jude and how things are going in Memphis soon.  I will strive to journal/update here more often... 

Believing God loves us, is taking care of Ben and has a great plan,

Tom for Jennifer and the boys.

(12/21/05)  5:14 p.m.  We wanted to share a couple of pictures we took of the boys the other day...  all geared up for Christmas!  Nathanael is doing great - is a very easy going child.  Rarely cries, always sleeping and a great big joy!  Big brother Elijah is certainly loving every moment.  Jennifer is doing really well - just very tired.

We value your prayers and God's grace as we navigate the next few days and weeks...  I will post a Christmas update Sunday - so much to share.


Tom for Jennifer and the boys.

(12/12/05)  4:32 p.m.  Pictures of Nathanael are posted above - handsome guy, isn't he?  Update to be posted soon - once we get a grip on things here :)  More photos to follow soon...

(12/10/05)  5:00 p.m. Nathanael - Gift of God.  Today, we experience one of God's greatest gifts as Nathanael Benjamin Bowen was born around 10:25 this morning.  Mommy and baby are doing fantastic...  and daddy stands amazed at a wife who has been up more than 36 hours without even a nap, was in labor for more than 12 hours and delivered a beautiful baby boy (did I say BIG boy - 9 lb 2 oz and 21 inches long) without a single complaint or wimper - only enthusiasm and smiles. 

We chose the name Nathanael because of its meaning.  After learning we were expecting a child shortly after Ben's death and that the due date was Christmas eve we realized that his life should serve as a reminder to us that God's greatest gifts can be found in the "rough".  Something we have tasted first hand over the past few years - and know is true.

I am off to love on my family...  I will post pictures and more tomorrow...  until then,


Tom for Jennifer and the boys :)

(11/21/05)  8:04 p.m.  Our time with Disney was (once again) magical...  the cast went out of their way to make our time very special, relaxing and fun.  On Ben's birthday, Disney arranged for us to eat breakfast in the castle and dinner at Ben's favorite restaurant - Chef Mickey's.  Mickey Mouse (Ben's favorite) distinctly remembered Ben - even pointed to the very spot Ben sat the year before on his birthday...  WOW!  A gourmet chef from the Grand Floridian Resort created a special cake to honor Ben's life.  One evening Pooh (and some friends) came to our table with a special certificate honoring Ben - a very moving moment.  The cast from the Festival of the Lion King show took time after their performance to meet us and love on Eli (this show was the boy's favorite).  The list goes on...    For Jennifer and I, we were reminded of how powerfully God is using Ben's life to impact others... we are so proud of you Ben (and in total awe of God's goodness).

One of our favorite times was dinner with Easton and his family ( .  He and Ben underwent treatment (almost the same protocol) together at the same time (at St. Jude).  Easton and Ben share the same birthday - and are the same age.  It is precious to see and touch Easton - and to know he is going to beat this thing.  I see his little fingers, watch him climb on everything and hear his voice and feel very close to Ben.  It is good to spend time with he and his family - they are dear friends.  We are proud of you, Easton...  happy birthday!

Many wonder and ask about us as we approach this "time of year".  Ben's birthday, Thanksgiving and Christmas cause many to assume that our level of hurt is more profoud.  Reality is "special days" hold snapshots in time that remind of us great times - nothing bad.  Being at Disney was more meaningful that sad - not a bitter thing at all.  Jennifer and I talked about the perception that many share about having a child die.  It is often compared to losing a mom or dad, grandparent or sibling.  The death of anyone close is painful and difficult to describe.  In our experience (and with many we know well), the death of a child carries a few distinctives.  I have struggled about sharing these things - but feel that it may help some help others through their loss.

Many parents have (even if for a few seconds) felt the panic and fear of losing their child in a busy mall or grocery store.  If you have been there, recall the feeling...  I can think of few things that evoke that kind of instinctive response.  The range of feelings come from somewhere deeper than just panic and fear.  Some instinctive, almost animal-like behavior to protect at all costs takes over.  You abandon all reasonable behavior, will drop anything no matter the cost and do anything to find them.  Nothing matters until then.  Even as I write these words, I feel they are far to inadequate to accurately describe the emotion.

Imagine having that feeling suspended indefinately.  Nothing else matters, your heart races and your breathing becomes heavy.  It does not go away and as time passes, you find yourself in a lonely fog.  You learn to function with these feelings - but they do not change.  You hear of the "stages of grief", but for us there are no stages.  We don't find ourselves angry or bitter, depressed or asking "why?".  Rather the feelings of loss supercedes these stages and the parental instict to have my baby back consumes our thoughts.  For us, being angry right now doesn't seem worthy of wasting our time with - we just want to have our Ben back.  Whatever it takes... 

So, for now, we must try to bring that instict in to check.  Death is final...  for now.  Along the way, we must (all) keep our eyes and hearts wide open to the powerful life-changing things that God is teaching us through these precious children.  I am exploring practical ways for us to explore this through Ben's life and story.  More to come.

Jennifer and Baby 3 are doing very well...  (no name yet:)  She is at that "ughhh" point and looking forward to having him here with us.  The nursery is all set and ready for him to come home.  Eli is really excited and can't wait to meet his new brother.  All else is well...  we will keep you posted.

Ben, mommy and daddy miss you and love you so much.  We thank God for sharing you with us!

Believing (when I don't feel like it),

Tom for Jennifer.

(11/20/05)  8:16 a.m.  Happy Birthday Princess Hanna!  We miss you!  Eli says hi...

Please be sure to visit Hanna's website and encourage her mommy and daddy today... .

We will post an update this evening...


(11/15/05)  9:47 p.m.  Fast update - Our time at Disney was fantastic!  Disney made some incredible "magic" happen to honor Ben and support our family while there.  I will post more late this week once I return from a business trip in Boston.  Can't wait!

We just wanted to let you all know how much your kind notes, emails and Guestbook entries have meant to us - especially this week.  Thank you!

Miss you Ben!

Mommy and Daddy.

(11/9/05)  4:13 p.m. CST  We are safely on the ground and (relatively) functional now.  I look forward to the opportunity to share more frequently now that we have internet service and a place to think "out loud" with each of you.  Thank you so much for the continued encouragement through email and the Guestbook - it means much more than you realize.

This week brings to mind so many powerful thoughts and feelings - it was about this time 3 years ago that Dr. Meadows told Jennifer and I that if Ben didn't come on his own in 48 hours, he would induce labor.  That night, Ben "came on his own" - defiantly as if to say I'm doing this my way.  The following year - his first birthday - things seemed so normal...  so "just right".  His personality was really shining - all smiles, very determined and infectiously engaging.  All of which served as a snapshot of a gift that would impact the world.  We had no idea that while we celebrated his first year of life, a monster was growing inside him and a countdown had begun.

His second birthday was a unique celebration of life.  The typical thoughts of what he will become - hopes and dreams, baseball games or down time together on the front porch were erased.  Instead we had a different kind of celebration - one based more in the moment, yet full of retrospectful awe of what Ben's life brought us, our family and the world.

I will share more about this when we return next week - for now, I must go help Jennifer finish packing...  speaking of packing...

Tonight, we travel to Orlando to enjoy a little down time together at Disney.  Ben's third birthday would be Monday.  We will celebrate by doing many of the same things we did with him that day last year.  One (of the many) very special times will be Monday night at Chef Mickey's (one of Ben's favorite places at Disney).  Disney arranged for us to have the same seating time as we did with him last year...  5:40 p.m.  We encourage you to join us in offering a prayer of thanks at that time for a wonderful gift...  Ben.

Talk with you next week...  probably Wednesday evening.  


Tom for Jennifer and the boys. 

(10/20/05)  8:30 p.m. EST  We are in WV tonight...  packing and preparing for the "big move" to Memphis.  By Wednesday next week, we should be unpacking and calling a new place "home".

As I sit here (on a break from boxes, tape and chaos:)  I find myself a little stunned.  While a moving company has been contracted by St. Jude to handle the move, we needed to button up a few things on our own this evening.  Several things have been left untouched since Ben's death - from the medicine chart hanging on the kitchen cabinet to the viles of medicine lined up across the counter - we had to disturb the things that (for whatever reason) seemed to connect us to Ben.  In our bedroom, the things that we once used as decorations are still lined along the wall under the window to make room for the mini-lab that we feverishly worked from during Ben's last weeks.  The leads that monitored his heart and respirations, his tubing (with meds still in them) and used port connectors are in my nightstand just as I left them February 25 at 5:35 p.m. 

Make no mistake - in no way do these things represent Ben...  they are just things that are from a moment in time when I last heard my little boys heart beat and felt his breath on my hand.  I knew the time would come that I would have to move these things - but not so soon.  I must say, however, I can think of no better circumstances to take this step...  to take the things I have learned from him and carry them on in my faith, family and career.  Indeed, God is good.

While I have been on the job for four weeks now, Jennifer and I see this as a major step...  to move out of one home and create another.  There have been many great memories here, yet God has given us so many incredible and happy memories in Memphis as a family that we can turn no corner in that town and not feel "at home". 

I must get back to the task at hand...  but look forward to resuming updates once we are on the ground in Memphis later next week.  I have so much to share...  we are learning much from this journey...

Tom for Jennifer, Eli, Ben and Baby #3  (no name yet :)

(10/10/05)  3:35 p.m.  Because of some internet issues at the hotel we are using for temporary housing, we have not been able to post an update.  We should be in our new home the week of October 24th - with a steady internet connection.  Meanwhile, I will work with Mike Emerson to post a regular update soon.

Things are going great...  Jennifer and the baby are doing perfect, Eli is loving Memphis and my new job with St. Jude is exciting!  Still, our hearts are heavier than ever and it seems that no matter what we do, that never changes. 

Thanks for your patience...  soon, things should be "stable" enough to resume our normal time here with you.


Tom for Jennifer, Eli, Ben and Baby #3

(9/26/05)  3:55 p.m.  Next to our "House for Sale" sign, we have posted another that reads, "Gone Looking for a Cure".  Beginning today, I begin a new journey - working with ALSAC/ St. Jude Children's Research Hospital in Memphis, TN.  I am excited about this opportunity to help find a cure and save lives...  at Ben's old stomping ground. 

I am sure he is smiling extra big today!   

I will post a regular update in a few days...  thanks for the patience.  Recovery from last surgery was a bit more demanding.



PS - Please be sure to eat out tonight at Chili's... 100% of their profits from today's sales go directly to St. Jude. 

(9/6/05) 10:31 p.m.  We truly appreciate your patience - the update delay was unexpected.  My surgery set me back further than expected...  I was not able to type because one of my hands/arm was in a temporary cast.  After seeing one of our dear St. Jude friends invoking the "mandatory update requirement" in Ben's guestbook (something only a patient family can enforce:)  I felt I better step up this evening.

We are doing well - but sorting through a mound of decisions.  ALSAC/St. Jude Children's Research Hospital formally made an offer for me to serve with their Marketing and Development Division.  Jennifer and I are working through the process right now and will share more as soon as possible.  Needless to say, we are thrilled about an opportunity to find a cures and save lives...  and honored to be considered.  This will unfold quickly - more to come.

Jennifer and baby #3 are doing great!  We are working on names...  will keep you posted.  Eli is fine - active and enthusiastic about his new brother.  He really misses Ben, often thanking God for taking care of his little brother - but lonely for Ben to be here with him.  One day, Eli...  one day.

I will have a follow up surgery next Tuesday...  please pray for a successful procedure and speedy recovery.  These surgeries are to repair a crush injury I sustained while working at the WTC in 10/2001.  Hopefully, a little more pain now will lead to less pain later.

Earlier today, Jennifer and I were working with a close friend, Sarah Poe-Rawlings (the photographer that took so many of Ben's photographs - like the one at the top of this page) on a very special story book/album about Ben's life and impact.  It is truly breath-taking.  I was asked to write a "snapshot" about Ben's life.  A copy of my musings follow...

Every time a child is born, a very unique and personal experience occurs with the parents that can not be adequately described.  Incredible hopes and dreams overwhelm us and this child – a part of us – becomes our mission.  To hold, to love, to lead and direct we will do whatever it takes to prepare them for what lies ahead.

When Ben came into this world, we shared these feelings and looked forward to the journey ahead.  Along the way, we loved and nurtured him - excited about his future.  As he grew we began to see his determined personality develop and his engaging smile penetrated hearts.  These qualities were more than they appeared – they were the essence of a gift that we had not opened yet.

On February 28, 2004 our seemingly healthy baby boy was rushed to the hospital.  After a CT scan we were told that our son was dying.  He had a tumor in his brain that would be difficult to treat.  His treatment would be brutal, surgeries would be challenging and he would suffer.  Through this, Ben’s gift began to unwrap. 

It began with doctors and nurses (after subjecting Ben to extraordinarily painful procedures) becoming visibly moved by Ben’s spirit and unbelievable smile.  Visitors would come by expecting to encourage Ben when in fact they would leave receiving so much more.  On one occasion, a nurse had Ben (16 months old at the time) lay absolutely still in awkward positions on a special X-ray machine for 49 minutes.  Without sedation he complied, only starring into our eyes for encouragement.  Just before the scan was complete, the nurse quickly left the room in tears.  She said she felt like she was in the presence of God in that room.

As word of Ben’s story began to spread, his gift began to emerge.  In the course of a year, millions of people from around the world heard of his unique spirit and message.  Tens of thousands of letters, cards and email messages flooded in with powerful stories of lessons learned and lives changed.  Hundreds of thousands of dollars were given to St. Jude Children’s Research Hospital in Ben’s honor to help find a cure.  From the White House and Fortune 100 companies to third world countries, we learn everyday of how far and wide Ben’s gift has reached.

For us, this impact does not ease the pain.  What we would give to see him again…  to hold him and kiss him one more time.  Our comfort is experienced in something much greater – our faith in God.  With every remembrance of our Ben we are reminded of the greatest gift Ben gave us…  a reason to believe.

Thank you Ben!


Mommy and Daddy.


PS - I will update again before surgery - and will ask Mike Emerson to post updates on our behalf while I recover.


(8/21/05)  7:22 p.m.  Thank you for the continued encouragement.  We constantly check the guestbook and email for your thoughts and prayers - always a breath of fresh air! 

I intend on picking up where I left off with the last entry very soon...  however, tonight I need to share with you a few "new" things that our family is facing.

First, I will undergo an outpatient surgery Tuesday to address an injury that I sustained to my wrists a few years ago while working at the WTC.  I value your prayers as we navigate this "hiccup" in the road.  Timing of this is a little aggravating as we are working overtime to get our house ready. 

Speaking of getting the house "ready", Jennifer and I are actively considering some job opportunities...  something that we should make a decision on this week.  Please pray about this very important time.  That being said, we are going to list our home for sell immediately.  Before we list it with a real estate agent, we are going to list it privately for the next week - so if anyone is interested :) please let us know.  Email us (click here) for more information.   A brief summary can be found here

We look forward to this new chapter in our life...  more to come very soon!



(8/15/05)  11:11 p.m.  So many times I have sat down to update, only to walk away at a loss.  (Yet my musings could fill this page twice.)  Jennifer and I have enjoyed the freedom of being transparent with these entries - painting a picture of each moment's reality. 

This loss is in our ability to know what to say about this moment - one that is full of vivid memories of the last few weeks and months and realizations about life, God and how the two work together.  We did not share much (about Ben's difficulties) at that time, mostly because we had a job to do...  love on Ben.  God graced us with an ability to see through those issues and focus on loving Ben and meeting his needs.  Now, we are facing the reality of those days head on and it is ugly.  Sometimes we feel that dealing with Ben's death is not nearly as hard as the torture that we know he endured in those last couple of months.

I have been reluctant to share much of this because it is not easy to hear.  Those who know seem to withdraw because it is too much.  Please pray about this - because Jennifer and I both draw so much encouragement from the incredible flow of traffic to this site and the emails, guestbook entries and cards you send.  We so appreciate each of you...

As for the new baby Bowen :)  Everything is right on track.  He is measuring a little big (just like his brothers) so we expect he may come a little early.  Eli and Ben were both 9 or more days early and weighed well over 9 pounds!  We have not picked out a name yet... 

Eli is doing well.  He wants this new addition to be a toddler at birth so he can have a brother to play with again.  While we understand his reasoning, Jennifer is not endorsing this :)  We appreciate Aimee (a friend we met through Ben's story) for the amazing things she does each week to encourage Eli personally. 

We are still communicating with St. Jude regarding the opportunity to work with them in Memphis.  We should have clear direction with this very soon.  Please continue to pray for us as we look forward to God's best for our family.

Though we are worn on every front our belief has not changed. 

Tom and Jennifer.

Miss you Ben...

Mommy and Daddy


(8/8/05  8:17 p.m.  Many of you know of our friends, David and Tammy (Hanna's parents -  Tuesday (August 9) will be one year since Hanna's death, something incredibly hard to believe.  Yesterday, I was cleaning out a storage area in our house and came across a water gun that Hanna and I were playing with this same week last year.  Everytime I would fill it up in her kiddie pool, she would say "bubbles" with a smile :)  Of course, she would then let me have it!

Tomorrow (Tuesday), people from around the U.S. and 7 countries will release a balloon at 5PM CST to celebrate her "Heavenly Birthday".  We need your help...  we need representatives from the following states to release a balloon -- Hawaii, Nevada, New Hampsire, North Dakota, Rhode Island, Utah, Vermont, Washington, Wisconsin and Wyoming.  If you are from one of these states or know someone who is that can help with this special project please let Hanna's parents know through their website (listed above) ASAP.

This balloon release will be a trememdous encouragement to David and Tammy - if you are able to participate by releasing a balloon or offering a prayer, please let her family know through their guestbook. 

I will update more a little later...


(8/1/05)  6:35 p.m.  Jennifer and I truly value your visits to this site and guestbook entries...  we draw tremendous encouragement from this.  We will return to regular updating soon - meanwhile we appreciate your prayers.  We deeply miss Ben.

Right now, we are in Tampa, FL where last night, at the Youth for Christ Staff Conference we presented the Benjamin David Bowen Courage Award.  This was a very moving experience as we reflected on the courage of our son and how it has impacted so many. 

My plan is to update again this week.  This is so much to share...


Tom for Jennifer and the boys.

PS - A couple of weeks ago, another kind family gave birth to a baby boy, named Benjamin in Big Ben's honor.  We will post the details when we return home.  May God bless this new life!

(7/19/05)  9:07 p.m.  IT'S A BOY!  Today we learned that the newest member of our family is a little boy...  due December 24th.  He looks great - everything is right on schedule.  Eli is excited and really enjoyed seeing the pictures from the sonogram.  (He did ask that the baby be about his age when he is born because he wants a brother he can play with again.) 

We are EXCITED about this news and can't wait to meet him!  As we learn more, we will share it with you...  for now, pray for continued good health for mommy and baby.

Many have enjoyed the video clip posted yesterday - thanks for the encouraging comments.  I am not sure that I can leave it up much longer due to bandwidth restrictions.  If anyone is experienced in web-based video, please get in touch with me.  I really need to downsize the video so that we can keep it up.  I have other, longer clips that are equally powerful that we used for Ben's funeral but I am holding off posting them until I can get some advice.

More to share later - until then,



(7/17/05)  4:38 p.m.  Sorry for the inconsistent updates...  it is hard to adequately share with you in words the brokenness of our hearts.  I suppose our emotions are beginning to catch up with what our mind and bodies experienced.  We realize that we functioned appropriately in order to help Ben but (God graciously) guarded our hearts so that we could survive the moment.  Now, as we "catch up" to reality we realize a level of loss that no other experience could prepare us for.  We are sticking close together - not really leaving each others sight for very long and resting in the safety of family.  I am sure that as we work through this I will find the words to share the journey on these pages.  Please keep us in your prayers.

One of our very good friends, Cole died this week after a long battle with ATRT (same cancer as Ben).  Please rememeber to encourage them at  Lacy and Rick are wonderful people and fought hard...

Over the weekend, the first Big Ben 5K was held in Huntington.  More than 300 came out to support our family and remember Ben.  It was certainly the right thing at the right time for Jennifer and me.  It was powerful to see hundreds gather in the streets of our hometown to love on us and remember Ben.  A BIG thank you to Erin Mishoe who organized the event with help from Tassy and Sharon with Marshall University's Recreational Sports Dept. and Angie from River Cities Church.  We know that many people and businesses donated finances, goods and services to make the race perfect.  Thanks to everyone for being a huge encouragement to our family!  Photos from the race will be posted soon.  Plans are already under way for next year's event - the BIG BEN 5K FOR KIDS will raise money to help other family's that need financial assistance while they care for their sick child.

Jennifer is feeling well, and the baby is doing great.  (She even raced in the Big Ben 5K.)  She is about 19 weeks right now... so we MAY know what the baby is going to be very soon :)  Just keep praying!  We want to congratulate Hilton and Sarah Hastings (and the Sheils family) on the birth of their twin sons, Ben and Jake.  Their baby Ben was named in honor of our Ben...  something that means a lot to us.  May God bless these two precious babies!

More to share later -

Believing God,

Tom, Jennifer and Eli for Ben and Baby Bowen 3

(7/10/05)  10:02 p.m.  It has been a hard week for us...  even though this update is short, each word is powerfully felt.  We miss our Ben.

Tom and Jennifer.

(7/9/05)  8:18 a.m.  I plan to give a full update Sunday evening - I just wanted to sign in and ask that you remember the Hardeman family in your prayers.  Today, they will say goodbye to Justin, their 2 year old son, after a brave battle with AT/RT brain cancer (same cancer Ben fought). 

His mom and dad (Mark and Sherry) decided to allow doctors to perform an autopsy so that researchers can learn more about this devastating cancer.  Even in their greatest hour of pain, they are choosing to reach out to others.  This is one more example of how broken people are the strongest people.

Justin was one of those very special children that inspired and motivated so many people - and a dear reminder for all of us to see our children for the gift they truly are.

His funeral is at 10AM PST today...   you can send his family a note by visiting .

I have much to share on Sunday - until then...

Believing God's promises,

Tom for Jennifer and the boys.

(6/26/05)  10:34 a.m.  Last night, Jennifer and I attended the Angels Among Us - A Celebration of Life Honoring Ben Bowen benefit dinner for St. Jude in Charleston (WV).  It was a fantastic success!  Everything came together perfectly as $10,000 was raised for St. Jude Children's Research Hospital in Ben's honor. 

Leslie Monk worked hard to organize and see the first annual event through - an effort that Jennifer and I will never forget.  She "met" Ben through this website and was motivated to do something to help others in Ben's honor.  Thank you Leslie (and your team)!

The first annual Benjamin David Bowen Distinguished Humanitarium Award was presented to Governor Joe Manchin (WV) for clearing the way for St. Jude to establish a WV field office after visiting Ben shortly before his death.  It is one thing to be moved emotionally about something, another thing all together to be motivated and actually act on it.  Governor Manchin, thanks for "acting on it" and taking time to make a difference in the life of a child.

Many of you have been asking about Rachel - our young cousin who was hit by a car last Christmas.  She is home now, continuing to improve.  It will be a year or so before she reaches her maximum recovery - so they value your prayers as they walk this long road.  It is just great to see her smiling, talking and having fun with her family and friends again.

Jennifer continues to feel pretty good (she does a great job taking care of herself and baby).  Please continue to pray for Jennifer and this little one...  more to come.

Remember Cole (see next entry) in your prayers.  This is a very difficult time for he and his family.


Tom, Jennifer and Eli for Ben and Baby #3

(6/24/05)  2:55 p.m.  Please rally around Cole and his family...  he is not doing well and his family is faced with heart-breaking decisions.  They are always a source of encouragement to everyone at St. Jude...  now they need to be loved on.  Please visit them at .

Jennifer and I are so thankful that so many of you remain steadfast in supporting our friends.  Thank you!



(6/23/05)  3:08 p.m.  Jennifer and I are so encouraged by the constant  flood of encouragement from many of you...  thank you all so much.

Jennifer is feeling well - and the new baby looks very healthy.  We are growing more and more excited about Baby Bowen #3!  Eli is confident it is a baby girl... but the verdict is still out :)

We face many life-changing decisions over the next few weeks - including an opportunity to work with St. Jude in Memphis.  Jennifer and I value your prayers throughout this process...  we will keep you posted once we have more to share.


(6/20/05)  8:52 a.m.  People often ask if holidays are especially hard - like Mother's Day or Father's Day.  Before I stood in these shoes, I would have asked the same.  So far, my take on this matter is simple...  it seems no different than any other day. 

Everyday is the same for us - we long to see our little boy again.  Some days are a little more emotional than other, but that longing never changes.  Actually, yesterday was sort of encouraging to me as I thought of "my big day".

Right before bed, I looked up at Ben's picture and down at Eli sleeping and felt an overwhelming since of gratitude.  I thanked both boys for that feeling I get everytime I see them...  what a gift!  It was kind of like the feeling you get the first time you see your child in the delivery room... difficult to explain but true joy to experience.  I think for now on, Father's Day will be "their big day" - not with cakes and gifts, bur rather with time and appreciation from a daddy who loves them very much.   Ben - thank you for causing me to see what this day is all about.  I love you son.


PS - I thought I would share last years Father's Day update...

(6/19/04) 10:59 p.m. Father's Day... the first of its kind for me. Many thoughts run through my mind... many too difficult to express. However, I feel compelled to share with you a recent experience.

A few weeks ago, the camera crew filming Ben for the Marlo Thomas/St. Jude Special captured a unique exchange. We were at the zoo celebrating good news after a difficult week. After we finished looking at Ben's favorite animal, the elephant, Jennifer, Ben and Eli walked ahead while I wrapped up a few pictures for the scrapbook.

As I caught up to them, Ben spontaniously reached out to me, grabbed my hand and after a brief blink or two, looked up to me. (Because of the tumor, Ben can not use his eyes to look up, he is learning to raise his head, then refocus his eyes.) This action, in and of itself is not profound - yet the exchange between my little Ben and I was. It was trust, belief, joy, kindness - and so much more wrapped up into one.

Shortly after this happened, the producer of the TV show mentioned that he caught this entire moment on film. Something that happened in a split second, with no planning, no announcement - something that just happened.

He commented on how simple, yet moving the whole thing was and asked me how it made me feel. Honestly, I was so caught up in recalling the moment that I must have froze. "How would it make you feel?" I thought. Being a father himself, the tears in his eyes let me know that he "got it".

Looking back, another insight comes to mind -- that some things never change. No matter how difficult the circumstances and challenging the situation may be, that Ben and Eli are my boys and I am their daddy. This is as true today as it was when they came into this world. It is easy to lose sight of these truths when things get out of whack... yet God is gracious enough to allow me such "intimate moments" and kind reminders.

My heart is heavy this Father's Day. I need not explain. Yet, regardless of how I feel, I am still daddy. There is nothing like it and I wouldn't trade places with any man in the world. To Eli and Ben - I love you boys. I am the luckiest dad in the world.

I continue to believe.


(6/16/05)  9:08 p.m.  EST  We are back in Huntington now - after a busy trip to Memphis.  After visiting friends, we attended Dick Shadyac's (the CEO of St. Jude) retirement party and met with ALSAC/St. Jude leadership.

We visited Cole, another one of Ben's friends battling the same cancer (Rhabdoid).  He and his family have been fighting this a long time, with one set back after another.  He is not doing well right now and needs your prayers.  His mommy, Lacy is tired and worn and needs your encouragement.  You can send them notes by signing their guestbook,

As I mentioned in our last update, Bradley Campbell died last Thursday.  Please pray for his family as they navigate this new reality.  I was on the phone with his mommy when he died - she said that she felt like Ben was there with him showing him around his new home.  Our heart is broken Sherri, Robbie and the kids - please take a moment to encourage them at

With the heartbreak, came hope as we attended Dick Shadyac's retirement party.  He has been a part of the St. Jude organization since 1963...  and most recently served as CEO.  It was inspiring to see a man who is so committed to the mission of St. Jude and loves the children like his own.  Godspeed, Mr. Shadyac!

I spent some time meeting with St. Jude leadership, discussing ways to best serve the hospital and mission.  Please pray for us (and them) as we consider opportunities to be a part of their team.  More to come soon...

Jennifer and I are doing well but missing Ben more than ever.  It seems that as time passes the worse this gets.  All we want is to hold him one more time.  Jennifer said it best the other day while we were pulling out from the cemetery...  "the only way to live through this is to know that we have hope...  we are one day closer (to seeing him again.)" 

We understand that is very hard to know what to say to us (or to anyone who has a child die).  Most don't say anything at all...  maybe it is because it (death) is hard to accept or a fear that we might get upset.  We understand that this is very common.  One dad wrote us before Ben died and said he is the "loneliest man on earth".  Indeed, the awkwardness and disconnect is very real.  Trying to build new friendships is challenging because we are emotionally spent.  This is a process that I don't understand, yet wish I could fix.

As for our pregnancy, everything is going great.  We have learned that the due date is December 24th.  What a gift!  In a few weeks, we should know what we are having (boy or girl) - and we will keep you posted.  We value your prayers for Jennifer, baby #3 and our entire family. 

We are really looking forward to this new life.  We do, however want to say that it is not about us "moving on".  We will never move on (past Ben).  We will move forward to new things, however we never want to fill our life with things that help us forget.  For some reason, death is seen as a bad thing that we should put behind us...  I disagree.  Death isn't the end (thank God).  We certainly hurt beyond words, but value every memory of Ben.  To us, every memory, every thought, every hint of him causes a sense of pride, joy and hope to fill our hearts.  This child is a gift from God, not a replacement or distraction...  and we are so grateful that God has entrusted us with him (or her :)

Finally, there is a couple of events coming up soon that you should be aware of.  The BIG BEN 5K and the Angels Among Us Benefit (for St. Jude in Ben's memory) is coming very soon.  Details will posted above.

Again, thank you for keeping in touch, it has encouraged us greatly. 

Believing whole-heartedly,

Tom for Jennifer and the boys (and Baby #3)

(6/9/05 b.)  9:34 p.m.  CDT Just spoke with Bradley's mom again, we learned that Bradley died about and hour ago.  Please pray for his family - Sherri, Robbie, Marissa and Dustin.  A link to their site is below.

(6/9/05)  8:35 p.m. CDT  We arrive in Mempis a few hours ago after a long (and stormy) drive.  We plan to visit with some friends at the hospital, attend the retirement party for Mr. Shadyac (the President of St. Jude and one of the original founders with Danny Thomas) and attend a meeting with some St. Jude administrators.  I will share more about our time here later.

Tonight, our hearts are heavy for Bradley and his family.  I just got off the phone with his mommy and she said things are really bad right now.  They don't think he will make it through the night.  The call was sobering.

Please pray for Bradley and his family.  You can sign his guestbook at

I will update more from Memphis...  until then.

Believing that God has a perfect plan for Bradley (and his family),

Tom for Jennifer.

We are working to retrieve the updates from 6/1/05 to 6/8/05.  Thank you.

(6/1/05)  10:30 p.m.  Thank you all for being faithful to support our friends...  especially Bradley and Cole.  These two children and their families are facing a very difficult time right now.  Please continue to encourage and pray for them.

Many of you ask about Eli - how he is doing after a very hard year.  In the beginning of this journey, Jennifer and I were pulled from home in the middle of the night - leaving him behind with family...  no notice, no goodbye.  After a few weeks, he was brought to the hospital to see us and his little brother.  It was apparent that he was concerned about us leaving him again - and it took some time to reassure him that we were together as a family again - for good.

Over the next 12 months, Eli would live in a bubble of sorts, rarely experiencing normal kid things.  We had to be extremely cautious of exposures so that Ben could stay safe.  Jennifer and I disciplined ourselves to balancing our time with the boys - something that was difficult at times.  No matter the circumstance...  whether Ben was in-patient or not, we would take turns staying with Eli doing normal things in our apartment (the St. Jude Target House).  This was really hard at times since Ben would face critical circumstances and we both wanted to be with him.  Still, it was critical to invest in Eli and demonstrate our love to him as well.  

Eli met several good friends while at St. Jude - everyone of them were patients except one.  Most were bald and had tubes hanging from their bodies, many would not be recognizable from week to week.  He would see children vomit outside the hospital on their way to treatment or be too weak to walk.  Many spoke foreign languages (which was fun to watch him deal with:) and practiced things unique to their culture.  Some died.  As I type these words it "sounds" like this is a recipe for disaster in a young boys life, yet I see the opposite.  I am confident that God is using this life-changing experience to shape his character and build his story.  I see a little boy that can express (in words) much more about his thoughts than many adults I know.  I see a little boy who acts on his compassion for others rather than feels sorry for them.  I see a little boy who understands more about heaven than I probably do. 

As for Ben's death - Eli talks about it often.  The wonderful Child Life Team at St. Jude has given valuable counsel about this subject.  One of the greatest things we learned is to be very honest with Eli about what is going on.  Children his age need honest, simple and concrete information.  He knows that Ben had a tumor that made his body not work right.  When things were very hard on Ben we allowed Eli to ask about it and we complemented his question, reiterated that the tumor is what is causing this and let him help with making Ben feel better.  (Eli would get creative with ideas to get rid of the tumor:)  One time he asked Jennifer to open Ben's mouth so that he could yell at the tumor and tell it to go away.  Another time, he wanted to put a fan in Ben's mouth to "blow it away".  We always allowed Eli to "take in" what he wanted to take in - even when Ben died.  Shortly after Ben died, he came in to say goodbye, helped us dress Ben and then went back to playing with a family friend.

Eli, like us, asks "what's next" all of the time.  We know Ben is with Jesus - but trying to understand what it all means is challenging at best.  I suppose that is why we call it faith - believing something we can't completely wrap our mind around.

Over the past few months, we have taken a lot of time to reassure Eli that things are "stable" in our home.  (The last few months of Ben's life was extraordinarily hard and graphic - it was very scary for Eli - and all of us.)  Now we are looking to the future - where to go from here.

I look forward to sharing about what is next for our family in the next update.  Please continue to pray for us...  I plan to post some specifics to pray about soon.  Thank God for taking care of us, for having a plan that is bigger than this and for taking care of Big Ben till we get to see him again...  can't wait!

Believing these things,

Tom and Jennifer for the boys (and baby #3).

PS - Ben was named one of WV's 55 greatest things by the State Journal and CBS.  The television special aired Tuesday night and the article will appear in the State Journal.  See this link...  we will post the article as soon as we have a copy.

Also, another of our close friends at St. Jude, Emma Grace is having a very hard time.  Our heart is broken for her family.  Pray for and visit Emma Grace at .

(5/27/05)  8:49 a.m. URGENT PRAYER NEEDED...  One of our closest friends at St. Jude, the Walker family needs our prayers.  Cole (another AT/RT brain cancer baby) is in the Intensive Care Unit because of a devastating infection that they can not control.  If you remember, Ben's counts would often drop to critical levels during treatment, making him vulnerable to life-threatening infection.  We know all to well that this is one of the terrible "casualties" of treatment...  so let's pray that St. Jude can find a way to fight the infections and get Cole back on the frontlines of treatment soon.

The Walker's are probably some of the kindest people to walk the halls of St. Jude.  Always smiling and doing for others -  they are very special people.  You can visit their website at .  Please sign their Guestbook and let them know you support them.

(5/26/05)  8:27 p.m.  URGENT PRAYER NEEDED...  Bradley (the 3 year old boy mentioned in our last update) was rushed to the hospital this evening due to pain management problems.  His local medical team has not been able to treat the extreme pain that Bradley is in, so he was referred to the hospital for care.  Outside of a miracle, Bradley has very limited time left, so we are praying that God make his days comfortable and peaceful.

His parents, Robbie and Sherri and brother and sister, Marissa and Dustin are concerned and heartbroken.  Please pray for them and encourage them at .

We will post an update tomorrow.


(5/22/05)  9:37 p.m.  So much to catch up on - every time I start to update this page, I find myself at a loss for words.  We have been transparent with you - no matter what we faced as a family.  Each day, we experience a new depth of Ben's death - words seem to fail in representing our thoughts adequately.  Even so, there is (it seems) more to share than ever...  life-changing truths extracted from this challenging time in our lives. 

I will continue to keep sharing our journey on these pages - and ask that you pray for our family as we sift through this and try to make sense of it all.  The good news is, as stunned and helpless as we feel, we believe that God loves us and is working things together for our good.  I am reminded of that long drive to Cincinnati Children's Hospital after learning that a tumor was stealing Ben's life.  We were told that he would probably not survive that day.  Jennifer and I were just playing with him days earlier - there were no signs.  Now, we are thrust into a new life where all bets were off...  we would do anything to save our little boy.  We discussed our faith and agreed that either God is or isn't who He says He is...  and we better decide now what we really believe.  Is our faith a lot of hype and emotion or is it the real deal? 

We chose to believe God - whole heartedly.  Believe His promises no matter what.  Push had come to shove and we were desperate.  Now, we find ourselves at a very similar crossroads.  With a pain that seems to rob us of our life, we ask, "Is God really who He says He is?"  Are His promises the real deal?  Truth is, we only have to look up at one of the many pictures of Big Ben hanging on our walls or read the thousands of emails about Ben's impact to be reminded of the truth that is embedded in our hearts.  We know He is.

Even so, we are walking wounded and value your prayers and support.  Thank you for continuing to visit this site and sign our Guestbook.  We gain so much from your encouragement.

Jennifer and I would like to ask that you pray and encourage a very special boys and his family.  Bradley is a 3 year old boy from southeast WV who was diagnosed with AT/RT (the same cancer Ben had).  Bradley is home under hospice care and is hurting badly.  Today, we traveled to their home to visit and were heartbroken for he and his family.  The level of pain and suffering is horribly obvious.   His mom and dad, Sherri and Robbie, are doing a fantastic job but lacks support.  Another family from MN flew in this weekend to be with them (this family's son died due to AT/RT as well).  This is a very difficult time for Bradley and we need to support he and his family now.  Please make a point to check in on them frequently and sign their Guestbook.  His website is

Jennifer and I would like to share some very exciting news with you - a very special Mother's Day gift (that we all really enjoyed).  Sometime late this year we are expecting Baby Bowen number three!  We were really looking forward to more children and feel blessed to have another on the way.   Eli is excited and we are confident that Big Ben is smiling (as always!) on his little brother or sister.  It is still very early, so we don't have "details" to share - but more on this matter will come! 

We are now switched over to the new web hosting package, so we will be able to add the (much requested:) videos from Ben's funeral.  They are fantastic video shows of Ben's life set to his favorite Disney music.  Keep an eye out for them.

Again, thank you for continuing to encourage our family...  this website has become the best source of encouragement for us and we are grateful to each of you.  Keep praying and believing...

Tom for Jennifer and the boys (and baby #3)!

(5/11/05)  8:51 a.m. Sorry for the delay...  between the internet service outage in our region and exceeding the bandwidth with our webhost, we have been unable to make the upgrades and updates we hoped to do.  Thank you for remaining faithful to sign the Guestbook and encourage our family - it has been felt and is certainly needed.

On a technical note, they have upgraded our webhosting package so that we won't have down time (so many people are coming here that it has been maxing our site's capabilites).  There are a few tweeks that will occur over the next 3 days that should not be noticed - but please be aware in case they are.  We will begin to make the updates (photos and videos) we hoped to ASAP.

As for our family, it is impossible to describe "how we are doing".  On one hand we navigate each day with some normalcy, yet on the other hand we do so with a stunned heart. For a year, they told us Ben had a 10% chance of beating this disease.  From time to time, our minds would wonder what it would be like if he died.  From where we are now, we realize everything we imagined was wrong.  The pain is from a part of your heart that has never been touched, the lonliness is (indescribable) and the desire to honor Ben by helping others is extraordinary.  From talking with many other family's who have experienced this kind of loss, our feelings are not uncommon.

We look forward to taking the next week to honestly describe each of these feelings - I am sure it will help us to share our thoughts and hopefully you will gain something from hearing it first hand. 

Meanwhile, please remember to pray for the many friends who have children suffering from a catastrophic illness.  In every case, they lived a "normal" life like you until they woke up one morning and everything changed.  Pray for the siblings who are confused and need for things to be stable again.  Pray for the marriages of the parents.  Pray that these children are healed.  We have highlited a few children here ...  with many more to be posted soon.

Again, thanks for the incredible encouragement - these are the days that it goes a long way.  A special thanks to Aimee and Michael from MI, your steadfast encouragement for our entire family has been incredible.


Tom and Jennifer for Eli and Ben.

(5/9/05)  11:30 a.m. EDT  Tom and Jennifer's internet service is temporarily out of order. A new update will be posted as soon as the problem is resolved. 

(5/2/05)  10:08 p.m. CDT  Things are going well here in Memphis.  Meeting with friends - some doing well, others struggling, all hopeful.  It has been very a very demanding day, so I will update more later.  Please continue to pray for our time here...  much more to come.

Tom for Jennifer and the boys.

(4/30/05)  10:15 p.m. CDT  We are on the ground in Memphis... spending some great time with friends and enjoying time together.  Memphis is a very special place for us - for so many reasons.

When we first made this trek, we came with our hands full - a very sick little boy, a desperate family and a whole bunch of hope.  Many wonder why we return (now twice since Ben's death). Part of it is the friends that continue to fight, part the friends who can not and part the fond memories of Ben we have here.  Some think we returned empty handed - speculating how we feel about Ben "losing the battle". 

Though we are heart-broken and miss Ben deeply, we do not feel completely "empty handed" when we walk through these doors.  We bring a "whole bunch of hope" that a cure is on the way and some will walk away to live a long, happy life.  The hope we share with everyone at St. Jude is larger than the burdens we bear.  This hope is something we can embrace, knowing that cures and answers will be found.  This hope is something that no person or circumstance can rob.  Hope is free here.

Please pray for our time here with old friends and new.  Please pray for us as we explore ways we can help St. Jude advance their mission to find cures and save lives.

Jennifer and I want to thank you for continuing to support and encourage us.  We realize that it is difficult to know what to say at times, but the kind words of encouragement have helped us tremendously.  The days ahead can be especially challenging - and we look forward to God's guidance and your encouragement to see us through.

When we return from Memphis in a few days, we will post a few new videos and such (we can't get them to load from here).  We will update again from Memphis Monday evening.

Still believing that God keeps his promises,

Tom and Jennifer for the boys.

(4/28/05)  11:02 p.m.  We will travel to St. Jude (in Memphis) Friday to see friends and meet with hospital officials.  We are excited to get to spend some time with David and Tammy (Hanna's parents) - they are such good friends and a great source of support.  Don't forget to visit Hanna's website and show them you care...

We know a few friends are really struggling at St. Jude - we look forward to loving on them.  Please pray for this time.

We will update from Memphis Friday evening - and hope to post a video slideshow or two from Ben's funeral.  They really capture Ben's life and legacy...  more to come.


(4/26/05)  9:57 p.m.  After enjoying some fun time with Eli at Disney, we are back on the ground - looking forward to what lies ahead.  The extended Florida vacation was nice - yet Jennifer and I are far from relaxed (this is OK - Eli really needed this time.)  Once again, our hats are off to the incredible sensitivity and kindness the Walt Disney World cast demonstrated to our family.  We were greeted in our room with cards and gifts expressing support and thanks in Ben's memory.  It was not long before we realized the depth of the impact of Ben's story on the Disney community.  Everywhere we went, Disney staff and managagement went the extra mile to make our trip special and express their gratitude and condolences. 

Jennifer and I really enjoyed our time together with Eli.  Wonderful memories were around every corner...  from Ben's favorite ride (Peter Pan's Flight) to the special times with the boss (Mickey Mouse) himself.  Jennifer created an incredible photo album with pictures of Ben with each of the Disney characters.  Beside each photo, the character signed a kind message to Ben - something we will treasure. 

We realized that this was the last place we saw Ben like himself.  Just three days after we left Disney last November, Ben's body began to deteriorate.  For us, Disney is a special place that warms our heart - full of our best memories of a fun, smiling little boy.

Eli was king...  celebrating his birthday there and receiving lots of special attention from characters and cast.  We will post pictures from this trip on the DISNEY! page by weeks end.

Jennifer and I are spent...  mentally, physically and emotionally.  We have been in a triage mode for the past 14 months - addressing the critical issues first - no matter the cost.  Many have asked if we are taking time for ourselves.  When you face circumstances like this, you do what must be done first and everything else takes a back seat.  Fortunately, God has given us grace to stick together and lean in through every step.  Now, reassuring Eli is the critical issue at hand...  as that stabilizes we will look for some down time together. 

Nearly two months have passed and the feeling of loss is deepening.  Relationships with people are awkward, at best.  No one knows whether to speak Ben's name or avoid it, fearing we might "lose it".  Reality is, most parents in our shoes long to speak of their child.  Losing it sometimes is a good thing -- never speaking of him is bad.  Trust me, there is nothing any man or woman could say that would make us feel worse than the pain we have in our heart for missing Ben.  I hear of many parents feeling very lonely as time passes - I can see where this comes from.

Please remember to pray for our friends - especially Hanna's parents, David and Tammy.  They are such good friends and they know the pain I speak of.  They miss her dearly.  Everyday, Eli prays and thanks God for taking care of Ben and his dear friend Hanna. Indeed, thank you God.

I have some thoughts to share about this journey - please pray that God give me the words to use that best express them.  More to come very soon.  Over the next week, we plan to update the site (in pieces) - so look out for these changes.  If you have any suggestions, feel free to email us with them.  

We are off to bed - this time of the day is always the hardest.  Things are quiet, Eli is asleep and we miss our Ben.   Goodnight, little buddy.


Tom, Jennifer and Eli for Big Ben.

4/24/05  11:42 p.m.    The Bowen's are home from an extended vacation (yes they returned from 80 and sun to 30's and snow).  They faced a very challenging (and long) flight home and are catching up on much needed rest.  Tom will resume updates and will add new photos by Monday evening. 

04/20/05 Orlando Florida.  The Bowens are still enjoying the warm sunny days that seem so different from the cold wet months of home.  They will be returning to Huntington late on Friday.  The time in Florida has been good, allowing time to focus on Eli and each other and just have some fun.  However, Disney holds such vivid memories of time with Ben that it is both bitter and sweet because they miss him so much.  We need to continue to pray for the right balance between the two.  The Lord continues to provide opportunities for Tom and Jennifer to share their lives and the Lord with people they come in contact with each day.  It seems the Lord has given them real insight so they see the opportunities to share their story with others.  And they are being obedient to speak to those the Lord brings them.  We should be just as active, obedient, and ready to tell our story.

Somehow Eli developed a corneal (eye) abrasion that caused them to visit the emergency room but it is not serious at this point, it just requires eye drops throughout the day.  Still an issue for prayer.

For Tom, Jennifer, Eli, and Big Ben



4/10/05 Sunday 1:00 p.m.  The Bowen family arrived at Disneyworld in Florida on Friday and will be there until April 22 when they will return home.  Tom just called to let everyone know where they were and that this time away from home is both healthy and good.  It allows Tom and Jennifer to focus some real attention on Eli and gives them time alone to reflect on the past and contemplate where God wants them in the future.  Tom has kept in touch with the Disney people and they are being very kind on this trip.  When things get worked out on internet access Tom will post an update, but until then, please pray for the family.  The time will be filled with memories of Ben, particularly after Eli goes to bed.  Evenings are a great time to pray for Tom and Jennifer because that is when it is the hardest, they miss him so much.
For the Bowens,


(4/2/05)  11:03 a.m.  Many ask about Eli - wondering how he is doing with everything he has experienced.  For more than a quarter of his life, every child he played with was battling some devastating illness.  Many had tubes protruding from their bodies, bald heads with ratcheting scars and devices attached to them everywhere they went.  Watching another child play, then vomit and play again was not uncommon. 

Each day, he witnessed first hand the havoc this life brings with demanding schedules, difficult procedures and many tears.  He watched us insert needles and horrid tasting medicines in Ben regularly.  In the last couple of months, he watched his brother double in size, gnash his teeth in pain and experience things far too graphic to describe here.  Ben's death was more than ugly.

Interestingly, these events have not defined his life.  Most (not knowing the full extent of what he's seen and experienced) feel like he must be traumatized.  We have noticed that he is less traumatized and more impacted.  Impacted in ways that seem to build his character, highlight his gifts and encourage others.  Those close to him agree that he is remarkable.

Eli may have experienced a lot, but he embraced it all.  No child was a stranger, regardless of appearance or issue.  He could see right through the circumstance and carry on like nothing was wrong.  Sure, he had many questions - and we answered each of them honestly.  His very best friend, Hanna, lived near St. Jude so we visited their home often.  Hanna was the only St. Jude child that Eli viewed as healthy (most of her treatment was complete when they met, so her hair, etc. was "normal").  However, when Hanna's tumor began to grow quickly and devastated her body Eli never missed a beat.  He saw right through the issues she faced and knew Hanna was "in there".  Indeed, she was.

In addition to seeing through the issues, he had compassion.  He was moved by what he saw and acted on it.  Just last week for Easter, he decided to collect some Rescue Heroes (action figures he loves) to give to St. Jude for the waiting room.  He spoke of how the toys made him feel good and wanted to make another little boy feel good too.  Often, he is moved by or for someone and will spontaneously stop to pray for that person.  I will not forget the night that we were packing for (our last trip to St. Jude with Ben) and I overheard him pleading with someone in another room.  I spoke up and asked him who he was talking to and he came to the doorway and said, "I'm talking to God, daddy."  After a few moments I peeked around the door and saw him on his knees begging God to take Ben's tumor away...  with Ben standing there listening intently.  Eli, said "Amen", got up and went back to playing - not missing a beat.  Not long after that, we were in church when he looked up to the giant screen that displayed the lyrics to a song with an image of Christ behind the words.  He leaned over and asked if "that" was God, then expectantly said, "Do you see Hanna up there?"

We believe that tough experiences don't have to rob us of life.  How quickly we forget how God used Ben's life so powerfully - under excruciating circumstances.  Don't worry too much for Eli - just thank God for building him through this and pray that he becomes everything God wants for him in life.  Pray that we parent him in a way that positions him best for the incredible life that's in store.

Broken hearted and thankful,

Tom and Jennifer.

(3/28/05)  11:55 p.m.  What now?  Here it is, nearly midnight and my mind is racing.  Most days, Jennifer and I get by OK...  none of the obvious things you would expect for someone dealing with the loss of a child.  Not really depressed - not moody or emotionally distraught - it is hard to describe.  But most evenings, we find ourselves deeply pained, noticing the incredible void left in our lives.  Ben is not here.  My mind races to the last time we wrestled after a line dressing change, the last Ben belly laugh or to the striking way he said "daddy" to get my attention.  From where I sit right now, I see the place he climbed over the couch back (using his fire truck peddle car as a prop) over and over - giggling the whole way.

The conflict that rages is unique.  On one hand, I recognize the powerful way God is using Ben's story to reach people and cause them to live life differently - yet I want him back so desperately.  I know there will be a time I will see him again, yet in this moment my heart is not satisfied with the wait.  All of the religious rhetoric in the world can not ease this man's pain.  I am so glad there is something more than words to allow us to learn to cope with this.  I am glad that tonight, when I rest my head I can sleep with confidence that God loves Ben, God loves Jennifer, God loves Eli and God loves me.  For now, that will have to do.

This journey has taught us many things.  As we move forward, we will implement these "lessons" to reach out even further.  Right now, we face many decisions about "what's next". Over the past year, many of you have prayed with us for wisdom in the decisions we make. Many times, the decisions were life and death, spur of the moment and very gut-wrenching.  Even so, Jennifer and I were blessed with extraordinary confidence in each decision we made and never felt confused or worried that we made the wrong choice.  

I am asking that you consider praying for our wisdom in the many decisions we face in the coming days and weeks.  As there is more to share, we will do so on these pages.  Ben's story is just getting started and I am honored to be a part of it!

Before I sign off, I ask that you keep a dear family (from St. Jude) in your prayers and encourage them as you can.  Bret Brady, a handsome 3 1/2 year old boy died of brain cancer (Ependymoma) this morning.  Our hearts are broken for them tonight.  You may visit their website at .  This is one more reason why places like St. Jude Children's Research Hospital is so important to all of us. 


Tom for Jennifer, Eli and Big Ben.

(3/23/05)  11:44 p.m.   While in Memphis, a television reporter asked me why we would return to St. Jude - especially so soon after Ben's death.  I thought about it for a moment and realized one of the great distinctives of St. Jude Children's Research Hospital.

From day one, we were struck by the way St. Jude is different.  If I had all of the time in the world, I truly don't think I could explain it appropriately.  This week, as we walked the halls (for the first time since Ben's death) the extraordinary sense of community -- no, family was evident.  Doctors and nurses migrated to the halls to greet us and share the burden of walking alone.  [Ben had this way about independently strutting through the halls that brightened everyone's day.  They looked for it.]  Families embraced us and gave us a look of brokenness and hope - all in one - that encouraged us along the way.  As we looked around us, we noticed new faces.  Our section, "E-Clinic" was full of a new class of little bodies waiting for their opportunity to fight and win the battle.  I clearly remember the concerned but determined look on each parent's face...  "game on".

After several weeks of feeling a little hopeless, my heart was warmed by the hope that sets this place apart.  From the administration, medical team and researchers to the parents and most importantly, the patients there is hope.  It is an active part of life here and I like it. 

Certainly, this trip was emotional.  This city is where Ben lived his life - from laughing and playing to loving on his family - this is where he "grew up".  This trip was not hard...  it was actually the easiest thing we have done in a while.  As I shared with the reporter, "Where else would we want to be?  At St. Jude, we are among the best people in the world.  You experience the best of humanity in this hospital." 

Still believing,

Tom for Jennifer, Eli and Big Ben.

(3/19/05)  11:12 p.m. CST  This evening, we are in Memphis to spend a few days with David and Tammy and to visit some dear friends (still) on the front lines fighting for their child's life.  It was almost one year ago that we first drove into this city - desperate to find a cure for Ben.  Tonight, our focus shifts. 

The fourth chair.

Along the road to Memphis this week, we found ourselves constantly reminded of the void in our lives.  We remember the first trip here - full of hope.  Our hearts, mind and eyes were wide open to the potentials for Ben to survive this monster.  Each time we stopped to get a meal, we realized the new reality again and again.  The fourth chair at the dinner table sat empty each time - something that no matter how distracted by the "moment" we were, we could never avoid.  We miss our Ben.

As we approach the next few days in Memphis (and St. Jude), our hearts are heavy.  This is where Ben became "Big" and our new family was founded.  To walk the halls of the hospital without Ben seems "wrong".  How will we face the rest of our 'family' without him?  Please pray for this time - we don't know what is ahead of us over the next few days, but we do know that we want to encourage others to understand the hope that we so deeply experienced while here.  Though this trip is much different than the first one, the hope we share is no less.  We pray for a cure - on so many fronts.

We want to ask that you pray for a new friend, Bradley (from WV) who has ATRT (the same brain cancer Ben had.)  His mother recently contacted us after finding this website.  They face many very difficult decisions right now and really need wisdom.  Please pray for them.  You can learn more about Bradley at

There is much to share...  Jennifer and I have really been thinking about "what's next".  We look forward to sharing our thoughts with you and value your prayers.  For now, I am off to get some rest...  more to come.


Tom, Jennifer and Eli for Big Ben.

(3/16/05)  11:51 p.m.  Tonight, like every night, I find myself looking at the many portraits of our family that cover our walls wondering "what just happened?"  It is a difficult thing to describe (having a child die) and quite frankly I think it is best that I can't. 

Jennifer, Eli and I have spent a lot of time together this week - even made a quick trip to Cincinnati to visit Rachel (and family) and see Ben's nurses and medical team at Children's Hospital.  We plan to take several small trips to focus on Eli and are planning a trip to Disney with him very soon. 

As a family, we feel lost - not sure what to do next.  For one year, every minute of every day was carefully calculated to keep Ben alive and our family together.  Disciplined daily routines to prevent infection or illness, central line care, medicines and therapies only started the day.  Now, we wake up instinctively at 7AM to give the morning meds only to find ourselves cringing at the fact that it is another day without our Ben. 

The good news is that after our eyes adjust, we look into the mirror (over the dresser that faces our bed) and see a reflection of a photo of Ben smiling at us... seeming to say so much.  (It is the same picture of Ben looking over our shoulders at the very top of this page.)  We hung that portrait above our bed the night before Ben died, as he slept peacefully.  When we woke up the day after he died, we realized that his image was "looking down" on us from above.  In Big Ben style, his eyes seem to remind us of so many of the incredible things we have learned this year.  Never give up.  Believe God.  Love family.  Live life.

Live life.  I find that when I lose track of that truth, I have to look no further than that picture to be reminded that Ben set an incredible example of living life.  Often, people refer to Ben's death as a life cut short.  I disagree.  Indeed, I (and Jennifer), more than anyone wished he could have lived a long life.  Yet, a long life doesn't mean that it is a full life.  Many will live to be 80 and not live half of the life Ben did.  This is unfortunate because God has a plan for each life and opportunities to live out that plan abound.  Often, we miss them because of distractions. 

Jennifer and I have learned so many incredible things from our son.  One of those things is to live life well.  Our prayer is that as we set this new course, we strive to live life well - as God intended for us to.  We will hurt and stumble at times, but that is only a part of the grand life God has in store for us.  Please pray that we not lose sight of this.


Tom, Jennifer and Eli for Ben.

(3/10/05)  Tom and Jennifer will post regular updates very soon...  probably in a few days.  They are investing some time in Eli (and each other) right now.  They check the guestbook several times a day and appreciate your faithful support.  Keep checking in...  the story isn't over yet!

(3/6/05)  8:03 p.m.  It is impossible to describe the way we feel.  We miss Ben so much...  trying desperately to remember the last time he said our names, laughed "Ben-style", even smiled.  To touch him once more...

Jennifer and I are taking a few days to pay special attention to Eli, so our updates will be briefly interrupted.  Please pray for him, things are especially hard for him. 

These pages will be the outline for the rest of the story - and we look forward to sharing them with you.  Your prayers, support and connectivity will mean volumes to us. 

Believing (and hurting deeply), 

Tom, Jennifer and Eli for Big Ben.

(3/3/05) 8:03 p.m.  Shortly after we arrived in Cincinnati (Children's Hospital) with Ben to begin this journey, we were "introduced" to an incredible dessert from Uno's - a giant peanut butter cup with ice cream and the works.  It seemed to ease the tension after a long day of worry and hard work.  As hard as I may try to describe this (probably sinful) dessert, it just wouldn't be the same unless you tasted it - for yourself.

As Jennifer and I have reflected over the past few days, we are shocked about the extraordinary peace we felt throughout Ben's funeral services.  We know Ben is with God, tumor free and pain free.  We have noticed that some don't appear to be as peaceful - and came to a realization that gives us all hope for the future.

We have "tasted it" for ourselves...  tasted the grace that God gives us when we open our hearts to Him.  For twelve months we have experienced the calm eye in the center of a storm.  This is not to say that our hearts are light or numb - quite the opposite.  We have tried to imagine what it would feel like to lose Ben many times over the past year (knowing it was medically likely), only to grossly miss the mark.  The heartache is beyond imagination or words.  Still, the calm is there - we have tasted it and know what it is.

For many reading these words, me describing this makes little sense.  Possibly, it is because you are only hearing about it - not tasting it for yourself.  Maybe you are reluctant, wondering if we are latching on to any brain washing that might make us feel better.  Truth is, you can not walk in these shoes with a fad-like remedy or feel-good lingo and rest your head at night.  We are experiencing something much deeper, more personal and most practical - God's love.

Today, I was out with Jennifer taking care of some business.  While driving through town, we noticed my high school track coach walking down the sidewalk.  I honked the horn at him, waved hello and rolled down the window as we passed.  Coach (Curtis) smiled reassuringly and said two words to us,  "Carry on."  Coach has always been a man of few words, but a kind and Godly man who knew what to say and when to say it.  Indeed, "carry on" is what we will do.  To honor Ben and serve God...  "carry on".


Tom, Jennifer and Eli for Big Ben.

(3/1/05)  11:16 p.m.  It was one year ago tonight that Jennifer and I spent our first night in the hospital with Ben.  We had no idea that what seemed like the flu would lead to the heartache we feel tonight.

Jennifer and I want to thank you for helping us honor our son today through your words, prayers and presence.  We have gained a great deal of encouragement from you.

As our journey continues, we will keep up with these journal entries...  and hope it will continue to keep the story alive.

Good night,

Tom, Jennifer and Eli for Big Ben.


(2/28/05)  7:34 a.m.   Today, our hearts are broken beyond words.  The tears you see do not come close to expressing the heartache we feel.  We don’t know what to do or what to say or how to act.  At times, we wonder the limits of our ability to absorb all of this and move forward.  Our little boy, who depended on us, is gone.

Over the past year, many have commented on our strength.  While we are encouraged by the inference, we realize that it is less about our strength and more about our dependence.  At no point has our strength gotten us anywhere.  Quite frankly, this has been the weakest year of our lives – full of hurt, pain, disappointment and frustration.  Like Ben, we became dependent on someone more able than us.   We had to turn to one who is stronger than the circumstances we encounter.  We turned to God.  We depended on Him.

This dependence has lead to perspective.  Often, we sign off these entries with the word “believing”.   We have come to understand what it means to believe God.  If we truly understood what we believe, we wouldn’t be so absorbed with physical healing.  There came a clear point during this journey that we realized this.  We learned that God has a clear plan for our life – for Ben’s life.   Many well-intentioned people consumed so much time worrying about healing that they missed the real beauty of Ben’s story – his life – and the incredible plan God had for him.  Healing is meant for God’s purpose, not ours.  Ben, though young, seemed to understand this.  Many have faced the terrible road Ben did, but few lived it like him.  His life brought people to a place that few could have – to Jesus.  This is the miracle we have all been waiting for.

We are honored to be Ben’s parents.  We caught a glimpse of God through his life in ways that you will never know.  It is clear to us that he was chosen for a special mission and he executed it well.  We were among a great man of God.

We are sure that Ben’s story will continue to impact the world.  From finding cures for childhood disease to reminding us to believe, Ben’s legacy is in motion.  Much, much more to come…


Tom, Jennifer and Eli for Big Ben.

(2/26/05) 1:07 a.m.  Jennifer and I would like to ask that you consider praying for a special friend, Noah Gallegos, another ATRT patient from St. Jude.   Noah was recently sent home by his doctors, facing a very difficult prognosis.  This Saturday (2/26) there is an international prayer time for Noah and his dear family (from 7AM to 7PM).  You can learn more about Noah at  This is a wonderful family who loves God and is hurting for their son.

We plan to post an update very soon...  until then, we too value your prayers.


(2/25/05) 7:30 p.m.  Tom & Jennifer wanted you to know that Ben has finished his race and is no longer suffering any pain; he passed away at 5:32 this evening.  Both Tom & Jennifer were with Ben when he died and they were able to spend some quiet together as a family.  Tom will put another update soon, when he is able.  Please pray for the family, especially little Eli.  

The Lord has powerfully used Big Ben to change lives for Jesus and that is not over. 

Still Believing; for Tom, Jennifer, Eli and Ben.



(2/22/05)  11:39 p.m.  The past 36 hours have been agonizing.  There is no way that I can adequately share the depth of the pain and intensity of the care for Ben over the past few days.  The medical professionals remain astounded by Ben's persistence and tolerance for pain medications.  Jennifer and I have slept only a few hours since Saturday, only adding to the fatigue of the past month of intense care.  Add that to 11 months of battle at St. Jude and we are simply beat.  Family, friends and our incredible Hospice Team are providing us a great deal of needed support - for which we are grateful.  The Guestbook entries and email notes have given us an additional measure of support and encouragement.  Thank you!

Ben's physical condition is very hard for us to take in.  Each day seems to bring a change that aches our heart.  Ben became so conditioned to the pain meds he was on that his dose was consistently increased until it became toxic for his little body.  Our Hospice doctor, Dr. Conjura and nurse, Carolyn have been fighting hard to keep Ben comfortable hour to hour.  We know their hearts ache too. 

Jennifer and I ask that you please pray that our medical team and us be granted incredible wisdom in handling Ben's needs.  Much of Ben's care is extending into unchartered waters.  Please pray that Ben experience incredible peacefulness and comfort.  Please pray that he be pain free.  Pray for Eli - this is stretching him and building him into quite a young man.  Pray for Jennifer and I - we are responsible for administering drugs that demand focus and great care.  Pray for yourself - and the thousands who visit these pages every day - that you will take from this something very special and apply it to your life in a very real way.  (It is one thing to be emotionally moved by Ben's story, something else entirely to be changed.)

On a very encouraging note, Ben has inspired many to help children worldwide through supporting St. Jude Children's Research Hospital.  At this time, we know of more than $109,000 raised in his honor for the hospital to fight childhood disease.  Many of these funds are (being) raised through the BIG BEN Wristband Project.  

It is time for more meds...  thank you for your prayers.

Tom and Jennifer. 

(2/19/05)  LATE UPDATE: Pain is back tonight... please pray for comfort for Ben.

(2/19/05)  9:47p.m.  Ben's pain has been managed for 24 hours - thank God for hearing our prayers.  We monitor it hour to hour and will keep you posted regarding his needs.  It is very distrurbing to watch Ben deteriorate - his arms and legs are cold, change colors and don't work.  Many things are too much to share here. 

When this journey began, an old friend, Lee shared with us a moment he had with his daughter when her time on earth looked short.  He said he told her that if she "saw Jesus to run to him and not look back".  We knew the time may come that we would have to say those same words to Ben but really struggled with letting them leave our mouth.  Interestingly they were the most difficult words to say but the most reassuring words to know...  if you see Jesus...  run to him.

Another reason we believe,

Tom and Jennifer.

UPDATE:  We learned that last night at the 2005 Regions Morgan Keegan and the Cellular South Cup in Memphis they had a special on court ceremony to present a check to St. Jude Children's Research Hospital in Ben's honor.  A special video honoring Ben was played and a large photo was displayed.  Many of the players chose to wear their BIG BEN wristbands to show their support for Ben in these days.  The tournament was deeply moved by Ben's story and the impact of his life. 

It is difficult to publicly share our life and Ben's journey - but instances like this cause us to realize it is well worth it.  To think that more people are aware of the need and giving to stop this disease is something that gives us a great deal of comfort and demonstrates astounding appreciation of Ben's life. 

Special thanks to Alan Morrison, his son - Pro Tennis Player Jeff Morrison, the tournament staff, tennis players, WOWK TV Huntington and WREG TV Memphis who understood the need and responded to it. 

(2/17/05)  11:18 p.m.  "Glimpses of God."  Today, our pastor, Larry Greene shared in a prayer his thankfulness for the glimpses of God that each of us experience as we watch Ben's story unfold.  I can think of no better way of describing it... 

Though Ben's body is failing, his story is bolstering.  His legacy is forming.  A legacy that is not about him, but about bringing people to a better understanding of God's purpose for life.  As God gives us strength, we will share these glimpses with you... much more to come, I'm sure.

Tonight, Ben is resting peacefully after a very difficult morning of pain.  Jennifer and I really struggle with this - why does God allow him to hurt so much?  If you only knew what Ben's little body is going through right now...  it is ugly, devastating and unimaginable.  The level of pain he is experiencing is extraordinary.  All of this after a grueling year of treatment, surgeries and procedures.   Why?!  Those directly involoved in Ben's care are equally frustrated and really searching for answers.  Jennifer and I choose to look back over Ben's life and see the glimpses of God in Ben's life that seem to "jump off the page" and remind us that He is always working something bigger.  Still we are disgusted and hurt for our little boy. 

Eli is very scared right now.  Ben looks very bad - and is suffering often.  This is very hard for Eli to come to grips with.  He seems scared to get near Ben - to touch him or even look at him.  Please pray for Eli.

The BIG BEN Wristband project is a huge success!  We chose to go forward with this project because it really reflects Ben's life - BIG and helping others.    This project has gained a lot of attention - and we hope it has properly reflected our intentions... to honor Big Ben's life and help St. Jude Children's Research Hospital fight childhood diseases.  We understand that orders are shipping in the order they were placed and that the local Hallmark Stores should have their stock very soon.  Together, we have raised a LOT more money than we could have on our own.  Thanks for being a part of the team!  Let's pray that this money goes a long way in finding a cure.

We are so thankful for the kind encouragement and prayers - so many are rallying togther to help Big Ben and our family get through this.


Tom and Jennifer.

PS - Speaking of glimpses...  on top of everything going on right now, our septic system failed (suddenly) and had to be replaced and our hot water tank began to fail.  While installing our septic system, our power and phone lines were cut. 

But intertwined in all of these "issues" were wonderful glimpses of God - from calling the power company's 800#  hotline and getting a representative who knew of Ben and got us help fast, to an incredible response from the Health Department and Miller's Septic Service.  At one point, our driveway and road were filled with construction vehicles and the like - all working tirelessly to help get things just right.  More importantly, the personal connection that everyone involved had because of Ben's story was priceless.  Jennifer and I never found ourselves stressed - only aware of opportunties.  Opportunities to prove that Ben has changed our lives forever.

(2/14/05)  10:38 p.m.  Brief update...  Ben is near comatose tonight - barely responding to our voice and not eating or drinking.  Tonight, his respirations are very low - at a concerning point.  We think that Ben was near death several weekends ago - after his pain was controlled.  Pain is a strong stimulus, thus keeping his heart beating and his breathing in check.  Ben has experienced a great deal of uncontrolled pain over the past few weeks - keeping him alive.  His pain seems to be under control at the moment, so we are seeing the actual results of the disease - slowing heartrate and low respirations.  This is ugly - breaking our heart and strongly reinforcing our frustration with this disease.

We appreciate the kind encouragement and prayers - it brings to mind the faith we share that God is doing much more with Ben's story than we realize.  I would ask that the (many) comments regarding us needing to have a stronger belief or faith that Ben be healed stop.  We do not need to perform better for God to make Ben "better" - because He already has.  Quite frankly, if this earth is the best God has to offer us then we are all in a lot of trouble.  The best is yet to come.  This is where our faith lies.

Believing God's promises.

Tom for Jennifer, Eli and Big Ben.

PS - The visit with Governor and First Lady Manchin was very special.  We thank them for taking time to visit Saturday.  Their sincerity and concern for Ben was obvious and heart-felt.  We appreciate Julie Janes with St. Jude for making time to see Ben and make his "wish" come true... to help keep other kids out of his shoes. 

UPDATE - Ben's check to St. Jude has now surpassed $41,000! 

(2/11/05) 11:14 p.m. This morning brought a new reality for our family.  Ben is barely responsive and losing many of his normal body functions.  Today, he opened his eyes (about a quarter to half way) a few times.  He even muttered "mommy" and "daddy" once - something we will forever cherish.  Eli continues to come up with ideas to "get rid of Ben's tumor" and articulates his thoughts so well. 

We are grateful for the incredible encouragement and support that many of you have provided our family lately.  One example, the BIG BEN Wristband Project for St. Jude has raised more than $37,500 in two weeks.  This project has moved so many people and businesses around the country to get involed in the fight on childhood diseases. 

We have learned that the 2005 Regions Morgan Keegan and the Cellular South Cup Tennis Tournament in Memphis will honor Ben by presenting a check to St. Jude in Ben's honor this week (on court) on national television.  Professional tennis players from around the world will wear the Big Ben Wristband during the tournament to honor Ben's life and some are offering their winnings to St. Jude in Ben's honor.  More about this to be announced this week.

Today, Ben received a Citation from the Governor of West Virginia (a copy is shown above).  The citation from Governor Machin reads:

"On behalf of the citizens of West Virginia, I ackknowledge the remarkable spirit of "Big Ben" Bowen.  I am inspired by his courage and determination.  He is battling his illness with amazing fortitude.

Ben serves as a shining example of extraordinary character to all who have been touched by his strength and perseverance.  The wealth of people who have been irrevocably moved by Ben's will and personality is an indeniable gift.  There is no greater way to measure one's time here on Earth than by the number of lives he or she influences.  In this regard, Ben is truly rich.

As a symbol of the high esteem of all West Virginians, my staff and I will wear a special lapel pin for a period of sixty days in honor of "Big Ben" Bowen.  This pin will always remind us of Ben, who is an outstanding "Mountaineer"."  [Signed, Governor Joe Manchin III, WV]

Tomorrow, Governor Manchin will visit Ben in our home to thank him personally for his life and honor him.  We look forward to his visit. 

A St. Jude Children's Hospital representative will join us in our home tomorrow to receive the first installment of our fundraising efforts for the hosptial.  A special check presentation will take place and will be reported by a number of news agencies.  The $37,500 check is just the start... with more than $100,000 expected.

One boy.  One life.  How can it be that he can reach so far and wide?  Only God knows the full extent of Ben's impact - but what we are blessed to see should be evidence enough that each of us has a story and it has such potential!

Mommy and daddy are proud of you, Ben! 

Believing with a peaceful heart,

Tom and Jennifer.

(2/9/05)  10:03 p.m.  Very little improvement for Ben - however he seems to be resting relatively peacefully right now.  There is no doubt that the level and duration of Ben's pain has been (and still is) devastating.  One of our doctors referred to this as a "worst case scenerio". 

How do I describe how we feel?  Jennifer and I are shell shocked - yet full of an unexplainable grace to get through each moment of day with peace.  I will not belittle this gift by trying to explain it, just know that it is everything we need right now.  As our pastor reminds us often - "God is good...  all the time."  We not only agree, but know this.

Tammy ( is here with us - helping on so many fronts.  She and David are such good friends.  Thanks to Elaine and our friends at Delta for getting Tammy here so quickly.

Eli is his compassionate self - truly God's man for the job.  Anyone that spends much time with him can see that he is a very special little boy.  He is able to discern peoples needs and react in an appropriate way.  This week, he was visiting with his young friend, Halee.  She shut her finger in a door, so her mommy put some ice on it.  A while later, Eli told her that he was going to tell his daddy to put some ice on Ben's tumor.  "That will make it better."  Yesterday, he told Jennifer that he wanted to put a fan in Ben's mouth so that he could "blow the tumor away".

Eli has spent a quarter of his life with children that face a difficult future.  Many have died.  He rarely saw a peer with hair.  Still, he played with no reservation - never questioning or judging.  Often he would look for ways to make them feel better.  At times, we would sense his deep concern for his new friends.  Jennifer and I plan to take him to Disney in the near future to spend some quality time together with him.  He is excited about the trip - but insists that we all go...  Oh, how I wish that were true.  Eli - mommy and daddy are so proud of you!  We all have much to learn from you.

Ben is stirring and I must go...  be sure to read the latest good news regarding the BIG BEN Wristband Project...Believing.

Tom for Jennifer and the boys.


(2/7/05)  12:35 a.m.  The past 48 hours have been a nightmare.  Bens pain has been mostly uncontrolled - and the worst we have seen.  His left arm and hand are swollen and he is experiencing some very obvious neuropathic pain in his hands, arms, legs and feet.  (This type of pain is very difficult to treat.)  He can no longer hold his head up on his own and is having a very difficult time speaking.  The way this cancer is destroying his body is too graphic to describe here.

Right now, Jennifer and Ben are sleeping together in the recliner as I keep a night watch to ensure his pain does not get out of "reach".  (I give him extra doses of morphine via his IV - on top of his hourly rate.)  Eli is peacefully sleeping in our bed.

Many of you ask what you can do for Ben and our family...  please continue to lift our arms through prayers and encouragement.  God gives the grace to continue each moment and we (though it is hard right now) have comfort and peace. 

On an encouraging note, many have responded to the Big Ben Wristband Project for St. Jude with incredible support.  We really hope that Ben can present the check to St. Jude himself, later this week.  More of the wristbands are coming - so order up - we really want to reach our goal of $37,500.  As of Sunday afternoon, we have nearly raised $20,000!  WOW!  All of this money will go to St. Jude in Ben's honor - and at a very fitting time.  Many have asked about honoring Ben with their monthly donations to St. Jude.  You may write "In honor of Ben Bowen" on your financial gift.  I do not have to tell you how important this is - to think that you will have to read and follow another child's story facing this terrible disease is motivation enough to support this cause.

Thank you all for your support and prayers.  Please remember to pray for the many that face this monster...  Good night,

Tom for Jennifer, Eli and Big Ben.

(2/4/05)  12:28 a.m.  It was one year ago - about this time that we wondered what kind of flu strand Ben might have...  occasional vomiting, otherwise seeming to feel well.  He was playing and having fun climbing a fire truck ride on toy (trying to maneuver his way over the back of the sofa.)

Tonight, Jennifer asks me what we should tell him...  how much should we tell him?  It simply breaks my heart more than words can reveal.

The (breathing) alarm is sounding (again)...  must go for now...  just keep praying.


(2/2/05)  7:40 p.m.  Forgive my brievity, the days seem to run together and we are very tired. 

It is difficult to describe how we feel right now...  I suppose it is because we are in the "fighting" mode again.  Similiar to the early days when we fought to keep Ben alive, we are fighting to keep him comfortable.  To identify feelings during the fight is difficult - mostly because we can't go there - we have to remain focused on the job.  Those of you who have been there understand.  Still, there are times that the burden is too much and impossible to share on these pages.

This has been a hard day on Ben - with more pain than usual (the past 3-4 days have been improved).  Ben has suffered so much for about 3 weeks - we would do anything to take it on ourselves and allow him a break from this monster.  Please continue to pray for Ben in this area.  We have been encouraged by several parents of other children who have been taken by this disease.  Their counsel and support is something we value and need at this time.

Allow me to say that I love Ben and I am proud of him.  He is teaching me so much.  As the days unfold, I look forward to sharing many of these "teachable moments" with you.  I am equally proud of Eli, as he has demonstrated some of the most profound truths of our faith.  As for Jennifer - I am not surprised - she is walking through this journey in a way that reflects her faith in God and love for family. 

I will share more as time allows - just keep praying for wisdom and comfort.  We are humbled by the consistent support from so many people around the world.  It really helps.


Tom for Jennifer.

PS - Jennifer and I want to share this Guestbook entry (from earlier today) - it really articulates the way we feel...

name: Elizabeth
Home Page:
City: Powellton
State: WV
comments: Ben, you sure do have a lot of friends. That's just because you are so special. As I have followed your story, I have learned so much.
I have learned that rather than seeking the healing, we must seek the Healer, which is exactly what your mommy and daddy are doing. I will continue to seek God and to pray for your miracle.
time: 2005-02-02 08:06:29

(1/30/05)  8:56 p.m.  We continue to enjoy time as a family - each day is a gift.  Honestly, I am too tired to post much right now - so I will do more later.  Ben sleeps much of the day (and night) and is not eating very much.  He has a difficult time clearing the "terminal secretions" in his throat because he is so weak.  He can not walk or support his weight, so he remains perched in Jennifer's lap much of the day.  Still, Ben's personality peeks through and we are given permanent snapshots of our little boy that will never be forgotten.

The BIG BEN Wristband Project has become a family commitment to (even in the face of death) do our part to keep another child from going through this.  What we are living (right now) reminds us as to how important St. Jude Children's Research Hospital really is to us all.  St. Jude's founder, Danny Thomas said, "No child should die in the dawn of life."  We agree and will do everything we can to fight this disease and be a part of a team doing something about it.  Please join us...  learn more.

More to come soon. 

Believing God's promises,

Tom and Jennifer.

(1/27/05)  11:01 p.m.  Ben is resting peacefully tonight.  The pain meds seem to be effective at this point - after 2 very difficult weeks of pain.  In spite of his deteriorating body, his Big Ben personality shines through from time to time. 

He sleeps most of the day and is sedated or lethargic when he wakes, yet we see glimmers of our little boy in a smile or whispered "mommy" or "daddy".  These days are indescribable. 

Jennifer and I are broken hearted but focused.  Focused on loving on him, Eli and each other.  Focused on enjoying every touch, smell and sight of our little boy.  We are not beaten, we are not mourning or depressed.  What does that do for Ben?  We are relatively upbeat, doing what we can to help Ben (and Eli) enjoy life.  We want to give Ben our very best - with a smile and warm heart. 

Tammy has been with us much of the past two weeks, providing support and encouragment.  We really appreciate she and David giving so much of their time to Ben and our family.  I can only hope that many of you enjoy such friendship.  Our family and friends maintain a steady stream of "ground support" - meals, help around the house and giving Eli much needed attention. 

The weather has eased (for now) - after a rough week.  After using an ATV or walking a half mile each way to get off our propery we have had our fill of snow and ice.  Getting oxygen, medicines, supplies and our help to the house was very challenging.  (Our Hospice Team was trapped for several hours one day due to our slick/snowy road.)  Everyone worked together and never complained - all to keep Ben comfortable.

We want to thank Kris, Tammy, Janet & Harry for staying up around the clock for days to help monitor Ben's breathing so we could rest without worry. 

Speaking of rest... I am on my way.  Please keep praying for wisdom.


Tom and Jennifer.

PS - The wristbands are on their way...   there was a delay in production but we understand the first batches should be here Monday.  Keep up to date via this page.

(1/25/05) 8:25 p.m.  The past 24 hours have been up and down.  Ben began to experience more pain (probably due to lowering the morphine the night before), so we had to increase it again.  It is like walking a tight rope to find the right balance of pain meds - something our doctors and nurses are working very hard to accomplish.  Please pray for wisdom for those involved - Dr. Conjura and the Hospice Team, Dr. Gibbs and the St. Jude team (Dr. Fouladi, Dr. Weiss and Elizabeth).  This is a very tough situation.

Ben is holding steady right now...  respirations are up and down and he remains fairly lethargic.  He has good moments when he is interactive - especially at breakfast. 

He just woke up (he has been asleep for a long time), so I must run for now...  I know you understand...

Tom and Jennifer.

(1/23/05)  11:45 p.m.  Ben is resting peacefully right now with Jennifer.  He continues to have long periods with very low respirations...  even after reducing the morphine.  It is fairly clear that the tumor is causing this change.  We expected this (to some degree) as the scans indicated (last month) that the tumor had invaded his brain stem.  The specific areas affected is the part that controls breathing and heart rate.

Jennifer and I have received great help from family and friends...  many are helping us get much needed sleep by watching/monitoring Ben while we rest overnight.  Someone is always watching Ben's breathing around the clock.  We will not take extraordinary measures... only make him comfortable and remind him that we love him.

For two weeks, he has experienced significant pain.  Today, we saw a reprieve in this - although he was very lethargic.  Even though, last night (around 4 AM), Ben leaned in to Jennifer and I and said (with a faint voice and bobbling head) "tickle tickle".  He smiled (with a smirk) and went back to sleep. 

Tammy has been particlutiarly helpful on many fronts...  she is able to speak directly to the issues we face with compassion and experience.  We are grateful to David and she for taking the time to be with us during this time. 

It feels like we have crossed another line last night...  the feeling that death was immenent is stunning.  I can not articulate the details here.  Please pray for the range of decisions we face over the next few days - this is certainly beyond us. 

Also, pray for the weather to cooperate with us...  we live "off the beaten path" and travel can be difficult.  Last night, Hospice could not make it to our house with needed supplies, so we had to send for them via an ATV.  Our help is (often) walking a half mile to get to us or taking the ATV.  It is cold and icy - so pray for safety with everyone involved. 

I am off to get some rest...  will keep you closely posted.  Mike Emerson will post in my stead should I not be available or should things change rapidly. 

Don't forget to buy your BIG BEN wrist band...  they are on sale (see above) and will ship in the next week.  We are excited about honoring Ben this way and raising money to fight this terrible disease.


Tom for Jennifer.


(1/22/05)  11:33 p.m.  It has been a very difficult evening.  A few hours ago, Ben's breathing slowed to a very low point...  we had to begin oxygen and reduce the morphine.  We are taking hourly shifts watching Ben closely - and praying for no pain and much peace. 

For a moment, we were sure Ben was leaving us.  Our hearts went to a place that is impossible to describe.  Please pray for Ben right now... he is a warrior that needs a break.

For now, his mommy and I are holding him close - wondering what's next.  Sure of only a few things and believing God's promises.


(1/20/05)  11:32 p.m.  The past few days have been particularly challenging.  Ben's pain has been extraordinary and hard to treat.  Our doctors and Hospice team have been working with us to find the right balance of medicines to keep Ben comfortable.  We want to thank our Hospice team - Dr. Conjura, Jo and Carolyn; St. Jude team - Dr. Weiss, Dr. Gajjar, Elizbeth and Andrea and our family doctor, Mike Gibbs.  They have all been working tirelessly.

For the past few weeks, Ben's pain has increased steadily - only today have we felt that we might be ahead of the pain (at a tremendous cost).  We are heart broken, frustrated and angry.  Cancer has certainly picked a fight with the wrong people.  

Jennifer and I are spending all of our time loving on Ben and Eli - and responding to Ben's symptoms in order to help him feel safe and comfortable.  This has become a round the clock challenge and is very demanding.  The days seem to run together and sleep, showers and the like are hit and miss.  Still, we find ourselves with enough grace to do what needs to be done - evidence of the faith we share.  Do not underestimate the value of your prayers for our family at this time...  God is answering them.

Eli is doing OK - he has experience with such things and has some (limited) understanding of what is happening.  The St. Jude staff continue to support and encourage him and have proven to be the best in so many ways.  Eli is an example of this and we are especially grateful to Angie (with Child Life) for helping him (and us) through this.  A big thanks to our family and friends who help with Eli every day - we couldn't do it without you.

Tammy (Hanna's mommy) has come back to help us during this time... we are so grateful for she and David's encouragement and support.  They have walked in these shoes and know.  They are good friends.  (Tammy is a little shell shocked by the snow we received today...  she is from Mississippi... yikes!)

We also want to say thanks to the many parents who have children that have died and have written us...  their kind words and counsel have been a great encouragement to us.  God help us to be that strong for others some day.

As I wrap this up this evening, I want to share with you that Jennifer and I have a steady belief that Ben's physical healing is not outside of God's ability.  We believe that God's success with Ben's life is not tied to life or death - it is much bigger than that.  Some insist that we must believe harder so that Ben can be healed.  Trust me, we believe hard enough...  it is our son facing this battle and there is nothing we wouldn't do to save him.  We just don't believe that we have to perform a certain way to see God do miraculous things...  we only have to open our eyes... he already has.

Believing this,

Tom and Jennifer.

PS -  Several of you have sent (or are sending) chocolate chip cookies from around the US - Ben loves them!  (So does mommy, daddy and Eli:)  Thank you all for the smiles - a priceless and rare thing for Ben right now.

(1/18/05)  10:42 p.m.  "Dear God...  give us wisdom."  These were the words of our doctor, Mike Gibbs tonight as we prayed together during his house call.

Enough said.

Tom and Jennifer.

PS - Oh, and by the way...  Do any of you know who makes the BEST chocolate chip cookies?  It is the only thing that Ben is smiling about right now :)

(1/16/05)  9:23 p.m.  I am not sure whether I am more angry than sad.  Angry with a disease that can devastate a child so horribly - sad to lose a son to it. 

This has been a very bad day.  Ben is very uncomfortable most of the day.  Last night, he didn't get to sleep until 4 AM due to the restlessness caused by the pain medicine.  He experiences random episodes of pain that is gut wrenching to watch.   The details of his experience is too difficult to describe here.  Our heart is broken for Ben and wish we could take it all away...  if I could only trade places with him.

Jennifer and I spend every moment trying to meet his needs and make him comfortable.  We are very tired, worn and scared.  Please pray for us.  Eli is doing relatively well - we arrange visits with his friends about every other day so that he has an opportunity to get out and have fun.  The team at St. Jude keeps in touch with Eli - encouraging him with notes and such - they are such wonderful people.  Our Hospice team is very kind and is great with him too.  In the next few days, we will launch a very special page that shares how we deal with this time in our life with Eli.  This information may be very helpful for many of you who share this journey with your (young) children. 

Forgive my rambling...  I am beat and can hardly think. 

In a few days, we hope to announce a very special project that honors Ben (and his friends) and supports St. Jude Children's Research Hospital.  I am sure you will love it!  Stay tuned...



(1/15/05) Saturday night late.  This was a very difficult day because Ben was in a lot of pain.  He was able to take a small nap this morning (thanks for praying!) but he was up shortly because the morning dose of pain medication was just not doing the job.  Tom and Jennifer have started giving Ben more frequent doses of Morphine, down to every three hours instead of the regular four.  Please pray that Ben’s pain can be controlled better.  It is so hard for his parents to watch him suffer and to try and judge what is the right amount of medication to give him and at the right time.  Tom said he could almost handle the daily care needs if he knew Ben was not suffering from the pain caused by the tumor.  Tom asked that I let people know what was going on so we could all pray for God’s soothing touch for Ben.  I want to remind us to also pray for Tom, Jennifer, and Eli as they watch Big Ben go through this latest battle.
During the early days of Ben’s battle with this brain cancer, Tom and I talked and wondered how God would receive glory through these events.  We have seen miracle after miracle and one answered prayer after another.  Ben still has the tumor, but hundreds; even thousands of people all over the world have been praying and talking to God about Big Ben Bowen for months.  We do it because we believe.  Tom and Jennifer believe as well.  Keep it up.


It's been one of those days...  With all that is going on right now, our new van has broken down (second time this month) and one of our German Shepherds (Joey) suddenly died last night (very unexpected).  Ughh...  Just keep praying...

(11/13/05)  9:21 a.m.  Thank you for you constant support and encouragement.  Our days are fairly demanding - on a lot of fronts.  Right now, our biggest challenge is finding the right balance of pain medicine that will keep him pain free and comfortable.  It seems like we are doing well with keeping Ben pain free, however Ben's reaction to the meds keep him restless and not himself.  He remains incredibly happy and carefree in spite of these affects.  Ben is Ben.

The restlessness presents with no (much needed) naps during the day and not knowing whether he wants up or down (Jennifer counted picking him up 53 times in one hour yesterday).  Ben is not yielding to the sedating side effects because the narcotics make him feel "different".  After all, he is a fighter.  The only medicine that does not make him feel this way is not strong enough to keep the pain in check, so we face quite a challenge.  Our doctors, hospice team and pharmacist is working hard to find the right balance for Ben.  Please pray for them (and us) regarding this area of treatment.

For Jennifer and I, it is difficult to get good rest.  The schedule is very intense and when we do finally go to bed we are shell shocked for a while.  Still, we are making it through each day with strength beyond ourselves.

Eli is doing remarkably well.  He is communicating his thoughts with us consistently and has a great understanding of what is happening.  Having gone through this with his friend Hanna, he has faced these issues (and death) before.  Even so, the pain of this journey is something that no one or no thing can prepare you for. 

We have cut down on visits and the like - mostly for Ben's comfort.  Lots of noise and confusion seem to really bother him.  Family and close friends have helped us tremendously with needs around the house - so the bases are covered.  The notes and prayers continue to be the best way to do something for our family right now.  I know how frustrating it is to not be able to do something or fix this.  Our nature is to rush in and fix things - but many times in our rush we miss the simple things God wants for us to do.  Prayer and encouragement go much further than you think for families who face these circumstances.  Jennifer and I have learned this lesson intimately.  We had to understand early on that we can not focus on fixing Ben...  rather focus on exploring what God gives us to do for Ben.  We can't control the situation or it will control us.  We still struggle with this truth - but always find it true.  Ben is the apple of God's eye.  We all are.

Please remember to check in on our friends, they need your support too.  Also, Ben (and our family) is a big part of some St. Jude campaigns coming out very soon.  Details to come.  Many of you have chosen to support children through giving to St. Jude Children's Research Hospital.  You can do this in Ben's honor - which means every dollar goes to the hospital directly and in time, a plaque honoring Ben's life will be placed at the hospital.  We will post more about this soon.

For now, I am off to being daddy...  praying each step of the way.

Still believing,


(1/11/05) Last night around 9:00 p.m. I stopped by the Bowen’s house to drop something off and found that Tom and Jennifer had gone through a tough week and a half and a particularly difficult last 48 hours with Ben.  Tom had not even had enough time to take a shower that day because they had been trying to manage Ben’s pain without major side affects.  They have used four or five different types of pain medication, but until today, all of them have resulted in Ben not sleeping (normally he should be taking two naps per day plus sleeping through the night) and being very uncomfortable – wanting to be up in their arms and then down on the floor.  This sleep deprivation has been so hard on him and especially on Tom & Jennifer.  Please pray for better control of his pain and that he can sleep without having to lay on Jennifer.
The Bowens have been so busy taking care of Ben that they have gotten behind in returning phone calls and emails.  Please be patient, these are difficult days, but know that your emails and guestbook entries have been a great encouragement to them.  Tom will put another update on soon.
For Tom, Jennifer, Eli and Ben - still believing.


(01/07/05)  11:00 p.m.  I find myself wondering...  what just happened?  I look at pictures of Ben just a few weeks ago - and hardly recognize him now.  The medicines (to keep him comfortable) have imacted his weight as the tumor causes him to lose steam right before our eyes.  I am desperate to go back.

If I think more than five minutes ahead about this I lose my breath. 

It is so good to have Tammy (Hanna's mommy) here with us a few days.  She and David are good friends who offer an appropriate balance of good counsel, encouragement and a listening ear.  They have been in these shoes and know of the grace that we often speak of.  They know of the confidence in things yet to come.  They know of the deep pain that is unmatched but cared for.  They know God in ways many do not.

We continue to deal with pain management hour to hour.  For the most part, I think we have been successful.  Unfortunatley, the agressive meds cause Ben to be restless.  One of Ben's doctors said that Ben's spirit is a fighter (as demonstrated over the past year).  This fighting spirit makes it hard when dealing with the things we have to face now.  Instead of relaxing and taking much needed naps during the day, he fights them because of the pain meds make him feel a little out of control.  Many take these meds and rest easy - but Ben keeps going.  He needs rest.  He has fallen several times due to fatigue and constantly wants up and down in our laps, not knowing what to do.  He walks around with his eyes half open.  Let's pray that some new pain meds we give him (starting tomorrow) will allow him the pain relief he needs while allowing him to feel comfortable enough to rest.

Eli has been exceptional.  We are convinced he is God's man for the job (being our son and Ben's big brother).  He is so full of compassion and is sensitive and tuned in to the needs of people around him.  Jennifer and I are very proud of him.

Before I go to bed tonight, I remind myself that Ben's best days are yet to come.  Pray that truth becomes more real to us everyday.

Still believing,


(01/04/05)  11:04 p.m.  We enjoy incredible days together...  very difficult to describe.  The quality of our time is like nothing I have ever known.  Just a few minutes ago, I sat on our couch with Jennifer and Ben - as he was nodding off to sleep.  Weak and tired, he called my name - almost a whisper and said "hold hand" (his way of saying I want to hold your hand.)  He looked at me with eyes half open and nodded his head - very confidently and reassuring.  (I remember this assuring nod when he was undergoing painful procedures - we would lock eyes and exchange nods until the procdure was over - seldom a word exchanged.  I used to initiate it to encourage him...  now he initiates it to encourage me

[Even while writing this, he called for me.  He said "kiss daddy" and pulled my face down to kiss me.  Priceless.]

Yesterday, we were watching family videos from our recent Disney trip.  We didn't know is then, but that was the last time Ben enjoyed "good days".  I want to go back to those moments so badly.  It appears that Ben's best days have come and gone - something hard to accept for many reasons.

On the other hand, I am full of hope and confidence because I know that Ben's story IS much bigger than this.  After prayer, careful thought and some intimate moments with Ben, I realize that Ben's best days have not come and gone - but they are on the way.  I know this because God has promised it.  One day, I will know this because I will experience it for myself and that will be a good day.

So for now, I rest my head a little easier and look forward to tomorrow with a hopeful (but heavy) heart.  Thank you for praying for our family and encouraging us along this journey.  God is answering your prayers!

I will post specific ways you can pray for Ben and our family at the top of this page.  Ben is awake most of the day - and interactive most of the time.  He is wanting to play and do things, but his body will not let him so he is up and down (in our laps) all day.  He stays on a steady schedule of morphine for pain - which seems to really help.  He is not hurting.  He loves to gather his favorite things and hold them in his lap - which looks pretty funny when it piles high!  Tonight, my mom brought over some cookies in a zip-lock bag - he snatched them and added them to his stash.  Needless to say, it is one big bag of crumbs (and still in his lap:) 

He is very sweet right now - loving on us all the time.  He is very peaceful and sure.  Indeed, God has His hand on this child.


Tom for Jennifer, Eli and Ben.

(01/01/05)  10:42 p.m.  Happy New Year!  Updates are a little sporatic because our schedule is more demanding (with Ben) right now.  The meds and the tumor are causing him to have a very erratic scedule.  He sleeps a lot with no consistency and staying on top of pain meds is a challenge.  When we have "normal time" we soak up the minutes...

Tonight, we made a pizza from scratch...  Ben and Eli had a blast.  (See picture above.)  Ben especially loved sneaking the pepperoni off the top - just like his daddy :)

We are doing well.  Jennifer and I love loving on the boys and are learning more about parenting every day.  Close friends and family have been helping us with the day to day things that need to be done.  Hanna's parents have been very encouraging to us...  their friendship is a gift.

I still wonder why this is happening.  I know with my mind, but my heart has a hard time keeping up.  I thank God for giving us the grace we need to deal with every aspect of this...

We spoke with Rachel's mommy and daddy this evening.  Rachel is holding her own...  she is showing signs of improvement after a very hard week.  Please continue to pray for her lungs to heal so that she can breathe on her own and for her brain to recover from the swelling.  Shari and Aaron are facing a long journey - your encouragement and prayers will help them tremendously.  I am forwarding your email notes - feel free to keep them coming.

Back to enjoying the moments.  God is good.

Tom for Jennifer and the boys.

(12/30/04)  11:52 a.m.  Quick update...  Ben is having a great morning.  It seems we are "figuring out" a pain mangagement routine that works well for him.  Our hospice team visited this morning and he was very interactive and fun...  cancer may be impacting his physical body - but that is all.  His spirit and smiles are all Ben.    After every dose of medicine - no matter how bitter or bad tasting it is - he says thank you and smiles.  (He's always been big on manners:) 

Jennifer and I truly appreciate the kind emails and guestbook entries many of you send us.  True, no words can fix this, but the knowledge that thousands are praying, loving and supporting us is exactly what we need right now. 

Many of you have expressed deep concern for Rachel and her family.  If you want to send them a note of encouragement, or a simple hello, email your message to us at .  We will forward it to them promptly.  Mark the subject line "For Rachel".  One day, her mommy and daddy will show these messages to her to demonstrate how so many loved her and prayed for her healing. 

Back to being daddy... more to come soon.

Believing, no matter what.


PS - Please check on Noah's family...  he has the same tumor as Ben and just received very hard news.  Please encourage them at .  Thanks.

(12/28/04)  10:39 p.m.  Recent days have been long and challenging... on many fronts.  We are simply worn out.  Ben continues to tire easily and is not very active.    He is on a steady dose of pain meds to keep him comfortable - they seem to be working well for him - he doesn't seem to be hurting at all.  He smiles a lot and loves being with us. 

Tonight, our hearts are heavy for Rachel and her family... she faces a very challenging day ahead.  Please pray for a miracle tonight.

Right now, there is much I want to share, but I am exhausted and can not think clearly.  I look forward to sharing more with you very soon.  We maintain hope for Ben, Rachel and all of our friends facing difficult times.  I plan to update very regularly - if things with Ben change quickly, Mike Emerson will post an appropriate update immediately. 

Please pray for rest and wisdom.  There are many decisions that Jennifer and I must make every day that are not easy and have no "right" answer.  I know that Shari and Aaron (Rachel's parents) are facing the same type of issues tonight.  God... we need you!

Good night - talk with you soon. 



(12/23/04)  8:32 p.m.  It seems like each day is a mixed bag.  On one hand, Ben's condition is worsening -- on the other hand, we are having wonderful days together as a family. 

People often comment on how difficult this must be - at Christmas.  They can't imagine how "bad" it must be.  Yet, Jennifer and I feel like the luckiest people in the world - we are really experiencing one of the best Christmases ever.  We see things more clearly now, know how to value our children and enjoy family.  So many can only nod their heads in agreement (as if they understand), but never get it.  Ben's impact on our life is inmeasurable.

Tonight, I learned that my little cousin, Rachel, was seriously injured in a sleigh riding accident.  She is in intensive care now - and her parents are in a place few know.  My heart seemed to stop when I heard the news - I just walked in from working in the yard.  I remember....

It is often easy to "settle in" to thinking that certain days are designated for gifts...  Christmas, birthdays, etc.  I hope we change this thinking and realize that each day is packed full of gifts - all of which are right under our nose. 

Ben is not doing very well.  He is on meds for pain management continuously and is growing much more sleepy.  His eyes don't open as wide anymore - something that is particuliarly hard to accept.  He still smiles and loves on us - in "Big Ben" style.  Please pray for us to use wisdom in treating Ben's symptoms and that he remain comfortable. 

We are broken and scared.  I am not sure what else to say about that right now.  Tammy (Hanna's mommy) visited with us for a few days - something that encouraged us greatly. She, too is broken and misses Hanna deeply.  God has drawn our families together - something we are grateful for.  We love you, David and Tammy!

I will keep you posted on Rachel and Ben... 


Tom for Jennifer and the boys.

PS - I have to share this with you... an email from a good friend that says it all.





Hey Tom,
Thanks for the Christmas card...It looks great!  Also wanted to say thanks for letting me come see Ben the other night.  I have to confess I felt "sorry" for you and Jennifer until I saw you with Ben.  You really soak up every hug, handshake and look from the little guy.  It was so amazing to see the bond you two that not even cancer can take away.  I guess I have prayed so many "O.K God fix this prayers" for your family that I could'nt see how He is truly working in your lives.  God has given your family a gift.....He must be so thrilled that you have opened it.  I know that in my life I have left alot of them wrapped.  Just wanted you to know I learned more about the grace of God in 45 minutes at your house than I did in any Bible College or Seminary.  Keep unwapping gifts brother.........they are all around you! 
Have a WONDERFUL Christmas,

(12/21/04)  10:36 p.m.  It has been a very long day...  I will update further tomorrow.  I wanted to pass along that Ben had a pretty good day - however we have began to administer pain meds on a regular basis.  At this point, tylenol and motrin are meeting his needs (which is good).  Tammy ( is here with us now - a great encouragement and help - it is so good to see her.  (We miss David, though:)

I should be able to share more tomorrow... thank you for praying and providing a constant stream of encouragement.  It really helps.


(12/20/04)  9:21 p.m.  It was a nice weekend...  a good friend, Kaaren (works with Youth for Christ/USA as the National Prayer Director) drove 6 hours to pray with us and spend time with our family.  God always send the right people at the right time to meet our needs.

Ben is not feeling real well right now...  and is becoming less active.  Please pray that we are able to discern when Ben is in pain and respond with the right medicines to help him.  He has gained about 4 pounds in 12 days (from the steroids he is on) - most likely this makes him feel a little uncomfortable as well.  It is very difficult to watch him "slow down" like this. 

We maintain our hope and pray for a miracle.  We believe that the "success" of Ben's story does not hinge on life or death...  or even a miracle.  The success is in the stories of tens of thousands people who are now different because of him.  Still, this is sickening.

Please pray for Ben's comfort.  Pray for our hearts.  I will post an update tomorrow evening - until then, we continue to believe.

Also, remember our pastor's wife, Mary.  Her father passed away over the weekend from brain cancer.  He is with Jesus now.

Tom and Jennifer.

PS - Tammy (Hanna's mommy) is driving in to be with us today.  She has a 10 hour drive ahead of her - please pray for safe travels.  We really look forard to seeing her.  (Pray for David too, he is on his own back home... yikes!)

(12//16/04)  9:49 p.m.  The response to our last posting is overwhelming.  Hundreds have written letters to Ben over the past 48 hours, sharing how his life is impacting their own.  Many have been personal emails that are absolutely incredible - it really reinforces the fact that our story is bigger than this and that we all have one to share.

We are really enjoying time as a family.  Today, Ben and I kicked back and watched a typical guy show, MacGyver.  It may be a corny, dated show, but every guy needs to spend time learning how to save the world with duct tape and a swiss army knife. 

This evening, we went to dinner and a movie (The Polar Express) with some friends.  The boys really liked the movie - especially the SnoCaps that I introduced to them.  When we got home, I turned on the TV to a Salsa music channel and had fun dancing with the boys and entertaining/scaring mommy.   Needless to say, we are doing our best to live life and be normal. 

Please continue to pray for us.  Yesterday, the Hospice team spent time with us reviewing new medicines that we might need to use with Ben.  It was a very sobering time.  It is difficult to balance the reality of the situation and not giving an inch of hope up. 

Ben tires very easy and is less active.  His spirit is high and does not seem to be experiencing any pain.  It is difficult to discern when he is in pain (because he typically handles it very well).  Please pray that we know when to use the medicines that will keep him comfortable.

Eli is doing well.  He knows that things are difficult for Ben.  He often asks for Hanna and is frustrated that he can't see her and play.  Now that Ben demands more of our time (for many reasons) we must be sensitive to his needs.  Pray for wisdom in this area and that he be confident that we love him. 

Remember our St. Jude (and other childhood cancer friends) that are hurting this season too.  Our FRIENDS page will link you to many of them.

I look forward to sharing more soon...  still believing God...

Tom for Jennifer and the boys.

(12/14/04)  10:17 p.m.  Every so often, we meet someone who leaves a special mark in our life.  They aren't always rich or famous, educated or publicly esteemed - most of the time they come from the most unusual places.

One year ago, none of us would have dreamed that the life of one little boy could leave a mark in the lives of tens of thousands of people from all around the world.  A mark that has caused a ripple effect for many of the same.  One year ago, this little boy was barely a one year old and beginning to get into everything.  I can see his "First Christmas" ornament from where I write and share these thoughts.  Things were different then.

Tonight, I type these words with a heavy heart.  Our family spent the day searching for a cemetery - something that words will never adequately describe.  I was just rocking Ben in my recliner, sharing with him so many things that should take a lifetime to impart.  It becomes too overwhelming, so I retreat to prayer and ask God for help.  I am not sure what else to do at this point. 
Maybe it is an answer to my prayer...  I am reminded of the powerful impact of Ben's story.  I am reminded of the thousands of emails, guestbook entries and phone calls with stories of lives changed because of Ben's story (really it's God's story punctuated by Ben's life).  I am reminded that this isn't over.  I am reminded of hope.
Tonight, my prayer is that we as a family experience these constant reminders and know a peace that is beyond understanding.  Tonight, Ben remains happy and alert - but obviously affected by the rapid tumor growth.  He is much less active now.  Tomorrow, Hospice will deliver "precautionary" meds to help with pain management, etc. should we need them.  Our burden is heavy and we value your prayers.  We continue to believe that God is a promise keeper and pray for a miracle that shocks the world. 
As mentioned before, we would like for you to share in our Christmas this year.  It may seem simple, but will be a gift that we treasure for a long, long time.  I looked up the word honor in the dictionary - the meaning (in part) is "to highly regard or respect... with distinction".  I have noticed that we often honor people after they die with ceremonies and dedications.  
I would like to ask that we honor Ben now by sharing some insight or life change you have experienced as a result of his life.   It may be a word or two, it may be a paragraph or more...  it does not matter.  I will share your comments with Ben each day and honor him for his brave fight and incredible spirit.  We will thank God for using his story to make yours better.  You can post your comments in the guestbook or email them to me directly (which is not made public).  My email is .  We will collect your thoughts and have them bound in a book that we will keep as a reminder of Ben's incredible life. 
It may be awkward or you may not know what to say - that's OK.  This is not meant to be works of literary genius but rather a way to honor a little boy with a big life.  Please consider this opportunity and take time to send your comments to us. 
I look forward to sharing more with you very soon...  until then,


Tom for Jennifer, Eli and Big Ben.

(12/12/04)  11:37 p.m.  Today has been a good day.  We enjoyed some great time as a family and had a surprise visit from Santa.  WOW!  We hoped to travel to NYC this week and meet the real Santa at Macy's (right Petrina?), but our travel plans changed.  It was so good of him to run down here to visit with the boys.

Ben is feeling pretty well... however, the steroids have caused him to swell up significantly and possibly making him feel a little uncomfortable.  He continues to tire easily, but it has not worsened since Thursday or Friday. 

We are really enjoying time together.  I shared with some friends at my old home church that this Christmas isn't one we are fretting.  We are experiencing more of our children than most families will in a lifetime.  What a gift! 

Our heart breaks for some very dear friends who are facing this Christmas without their children...  please pray for them.  I try to imagine what it is like, but the pain is too harsh. 

In the next day or two we plan to ask you to share in our Christmas plans - especially honoring Ben's life.  More information should be posted very soon.  Meanwhile, I encourage you to visit our FRIENDS page and take a minute to visit their websites.  I know it may be a little awkward to sign their guestbooks, but the incredible encouragement we all gain from your comments are priceless.  Even if you only say hello and Merry Christmas - you will brighten their day.  Hanna, Karley, Aaron and Helen have recently went to be with Jesus...  please take some time to support their families through this holiday season.

We also want to thank Haley, a young lady from our church who gave us some very special Christmas gifts this morning.  We are impressed with her compassionate heart for Ben and our family.  Thank you, Haley!

Much more to come...

Tom and Jennifer.

(12/11/04)  12:36 p.m.  We needed to pass along that another of our dear friends, Helen went to be with Jesus yesterday evening.  She had the same cancer as Ben.  We are truly at a loss of words.

Please support them by signing a word of encouragement at

Also, remember Aaron's family...  you can read more about them below.

Thank you,

Tom and Jennifer

(12/10/04)  7:13 a.m.  Good morning all...  and thank you for being so encouraging over the past few days through your emails, guestbook entries and calls.  It has certainly been challenging for us.

First, we want to ask you to love on Aaron's family, he went to be with Jesus last night.  Words can not describe how we feel about this.  You may want to visit their website and read the past few updates and sign the guestbook.  I know his mom really likes reading the postings that many of you leave.  Our hearts are heavy, yet confident that this is not the end of his story.

We are home now, enjoying time as a family.  We have noticed Ben's activity level deteriorating, especially over the past week.  The MRI results confirm that this is deifinitely a result of tumor growth.  This is the first time since this began that we have noticed Ben getting worse instead of better.  I can not tell you how difficult it is to say that.

This deterioration is expected to continue as the tumor and swelling grows.  Over the past four weeks, the tumor has doubled in size and appears to be growing quickly.  Please continue to pray for "spontaneous remission" (doctors term for miracle). 

Jennifer and I are very hurt right now.  We wonder if Ben's very best day has come and gone and we didn't realize it.  It seems like we can't touch or smell him enough.  We appreciate your prayers and kind words and know that we will get through this with God's grace and your support.

Ben is feeling great right now... lots of smiles and fun time with family and friends.  We know this is such a gift!  We will forever see these days as the greatest gift God has given us this Christmas. 

We will post again very soon.  Still believing...

Tom and Jennifer.

The Bowen's have arrived safely from Memphis.  They will most likely update this evening.  Please continue to pray for them and their friend, Aaron who has very little time left with his family.  You can encourage Aaron's family at

(12/07/04)  8:02 p.m.  I know a hero.  Every day I watch as Ben takes on the day - all day - with an enduring smile.  Four surgeries, hundreds of painful procedures, chemotherapy drugs, radiation and medicines that taste terrible only begin to paint the picture of his life.  All this said, he never cries or fusses - only smiles.  His smile has become his trademark and his spirit is inspiring for thousands who have met him. 

But one thing strikes me - especially tonight as I write these words - his courage.  In spite of everything Ben has endured, he continues to smile and inspire without fail.  It would seem to me that after a time or two of vomiting or being poked with needles, I would have enough.  At the very least I would complain or feel sorry for myself. 

For (what is now an obvious reason), God has given this little boy the grace to embrace each day with courage beyond the ordinary.  I believe many people are better for it.  Now, I find myself asking God for such courage - to face some very difficult days and decisions.

Today's news is devastating.  Ben's MRI showed substantial tumor growth since the last scan 4 weeks ago.  It appears that the tumor has actually doubled in size and has certainly envaded his brain stem.  Jennifer and I have noticed Ben's activity level dropping over the past few days - a sign of this rapid growth.  The doctors feel like Ben's situation will worsen each day.

We continue to pray for a miracle.  We still believe.  We are hurt beyond words and quite frankly don't know what to do next.  We plan to travel home Wednesday and will spend a lot of time working through these things during drive. 

Please pray that we are granted wisdom through difficult decisions, sensitivity with Ben and Eli (and each other) and courage to face each day as we should.   We will not be able to post an update Wednesday (we will be traveling), however we will on Thursday.  We hope to share more specifically about ways to pray for us during this time.

Ben, you are our hero.  We love you, son!

Tom and Jennifer.

(12/06/04)  8:55 p.m. CDT  Greetings from Memphis...  we are back "home" (in Memphis at St. Jude).  We arrived Friday to support the St. Jude Marathon (especially Hanna's, Louie's and Alex's parents).  It was a beautiful day and they all did well - our hats off to the thousands that participated (we understand about 5000).  Big money was raised to help St. Jude fight childhood cancer and disease - way to go!

We have enjoyed spending some time with David and Tammy (Hanna's parents)... they are such good friends - we miss not seeing them more often.  So far, we have been able to catch up with many of our St. Jude friends...  Easton, Helen, Carson and many others...  they are all a part of our family and it is so good to see them! 

Earlier today, Ben and Eli were selected as the Grand Marshal for the Peabody Hotel Duck March - a huge tradition that has gained international attention in Memphis.  What an honor! 

Later this afternoon, Sheriff Luttrell named today "Ben Bowen Day" and named our entire family "Honorary Deputy Sheriff".  The ceremony was held in the Sheriff's office and was covered by all of the local media...  one of the TV news stations has already posted the story on their website - click here to read it.  The boys (including daddy) loved it!  Thank you Sheriff Luttrell!

Tomorrow is the big scan day...  we should have information sometime around noon.  We will do our best to post the results shortly thereafter.  I am not sure what to say other than we continue to pray and believe that God is able. 

Until tomorrow,

Tom for Jennifer and the boys.

(12/03/04)  7:32 a.m.  We will soon be on the road - heading back to St. Jude for an MRI to see what is happening with Ben's tumor sites.  We are leaving a little earlier so that we can support David and Tammy as they run the St. Jude Marathon in Hanna's memory.  We can't wait to see them!

We are approaching this weekend with much peace... although the situation is grave.  Nearly four weeks ago, there was concern that we would not see Ben live through the Disney trip.  This morning, he is having fun and playing.  We are thrilled that God is giving us these daily gifts (which we are really enjoying). 

Jennifer and I have really come to understand that faith, hope and belief is not tied to us getting everything we want in life. God is not a spectator in our life waiting to be pleased by our performance so that he can give us every desire.  There is something much bigger than life and death.

The incredible blessings that God has given us through this journey has provided Ben and our family opportunities to touch peoples lives in big ways.  It is not just for us to enjoy. After watching Ben at Disney connect with so many people in life changing ways, I am convinced that God is not done with Ben yet.  Until He is, Ben is not going anywhere.  We have often said that we believe that God has a plan for each of us... and it is nice to see that unfold in the life of our little boy.

Our faith is in things bigger than life.  Of course, part of that faith is in the fact that God can bring our son home to us healthy and whole.  For now, we will pray for that miracle... and that we remain open to the incredible ways that God will use Ben and our family in the lives of the people we encounter.  Friends in the battle, the Gaskins, recently learned very bad news about their son, Jay.  She said it best, "I believe that God still peforms miraculous miracles and that Dr. Gajjar one day may be writing “spontaneous remission” (medical term for miracle) on Jay’s file." 

Let's pray for "spontaneous remission" for Jay (, Ben and all of our little friends fighting this terrible disease. 


Tom and Jennifer.

(11/30/04)  8:50 p.m.  Ben continues to do very well...  only packing on a few pounds (thanks to the steroids).  He is playing a lot and is having lots of fun - what a gift!  We look forward to the tests at St. Jude next week - especially the MRI on Tuesday. 

This weekend, Hanna's parents will run in the St. Jude Marathon in Memphis - in her memory.  They have (with the help of many) raised more than $4000 for St. Jude Children's Research Hospital.  We are very proud of them - they have worked very hard preparing for this race.  Remember to go to Hanna's website and cheer them on...

A new friend with Michael W. Smith's team posted some thoughts about meeting Ben on Michael's website.  It' funny -- some folks in Memphis arranged for us to go to the MWS Christmas concert while we were still at St. Jude.  This arrangement included some back-stage passes.  Through our meeting with Michael, we met this kind man who shares our journey and interest in St. Jude.  God is good.  Now many more are praying for Ben and looking forward to how God uses Ben's story.  You can visit Michael W. Smith's website at .

We will post some new pictures very soon...  so check back for them - they are great!  Until then, we continue to believe.

Tom for Jennifer, Eli and Ben.

(11/28/04)  9:27 p.m.  Our family is home from an incredible Disney vacation - something that we will never forget!  Some very good friends, the Sheils family decorated our home for Christmas - so we returned home to quite a treat!  Thanks guys! 

Ben is feeling great - playing and doing "normal" things.  The Tuesday before we left for Disney there was concern that he would live through the trip.  Jennifer and I did not know what to expect.  We packed documents - prepared for the unimaginable - and moved forward.  I suppose the inclination is to tuck your head and allow the circumstances to control you.  Many ask how we do it...  especially lately.  Going through this just about robs you of everything.  Everything except hope. 

As a fireman, I have witnessed many terrible things in my life. I have never seen anything as terrible as what I have seen Ben go through - if I were to articulate it all here you would be too overwhelmed.  To see your own son experience these things with no way to intervene is torturous.  I wonder if I will ever be able to come to grips with that. 

We have been stripped of all control.  We can't do anything to fix this - except to enjoy hope. While at Disney, we had to decide that to have hope means that we have to enjoy hope.  We accept each day as a gift.  It is no longer about life or death - these are things we all face.  This is about accepting God's gift to this family - Ben - and looking forward to what He does with his life.  If we have 7 days or 70 years we will embrace each day with hope - and enjoy it as a gift from a God.

Some days seem harder than others - we appreciate the encouragement each of you share with us through this site.  You help us remain steady in a very difficult time.  God bless each of you!

Next week, we travel back to St. Jude for another MRI and tests to find out what is happening with Ben's tumor sites.  Pray that we gain some clarity as to what is going on.


Tom and Jennifer.


(11/12/04)  8:05 p.m.  God is good.  Today, we enjoyed another wonderful day with our boys!  Ben is feeling well - but he is still a little sleepy from the increased pressure inside his head.   The steroids should start to help the swelling go down by Sunday - please continue to pray that this happens. 

We spent time with some family and friends today - and finished up packing for Disney.  Tomorrow morning, we fly out in style with several of our closest friends to the Magic Kingdom.  For Ben's birthday (Sunday), Disney is rolling out the red carpet!  We should learn more about this once we are on the ground - but it sounds like they are really working hard to make this a memorable experience for our entire family. 

We will update from the ground at Disney (probably not until Sunday night) and keep you in the loop.  Keep checking in!

Please pray that Ben's pressure issue is resolved quickly.  As for our family, just trying to refocus will be a challenge.  Please pray that we will relax and enjoy every moment.  Also, pray for some dear friends (still at St. Jude) who recently learned that they have very little time left with their little boy.  They are from Mexico City and left behind everything to fight for Ian's life.  They have nothing to go back to... no home, no job, no car.  They are some of the most grateful people I have ever met.  They are suffering deeply, yet take the time to make Ben a priority and check in on us. Let's pray that they experience peace as they encounter some very tough days.

Well, I am off to finish packing...  talk with you soon!


(11/11/04)  9:38 p.m.  We are back from Memphis - and packing for Orlando - gearing up for our big Disney trip.  We can't wait!
As Mike shared, the past couple of days have been very difficult.  The news is hard to understand - so I will do my best to outline it here.
Monday, the MRI results indicated a large mass in the same area as Ben's initial tumor site.  This mass was huge.  It certainly explains why Ben has been more sleepy lately - the pressure resulting from this is causing pressure within his brain.  It appeared to be rapid tumor growth - something that is not uncommon with ATRT.  What surprised everyone was Ben's presentation was great - alert and very active.  This contradicts the data from the scan.  Still, the doctors felt that if this is tumor, we will have very little time with Ben.  They have briefed a doctor on the ground in Orlando "just in case". 
They asked if we would allow Ben to undergo another (unplanned) test yesterday morning.  This meant we would stay an extra day.  Needless to say, we were so shocked and overwhelmed by the MRI results that we felt that driving home right away wasn't wise anyway.  This other test is not something they have experience with ATRT, so they were not even sure we would gain anything significant from it.  We were to leave immediately after the test and go home.  However, once the test was over, we were held up (mostly from concerned St. Jude parents and staff).  During this time, they read the results and called for us to come back to the clinic. 
They made it very clear that we are facing difficult circumstances.  This new test did show, however that the timeline with Ben may not be as short (a few weeks or less) as indicated earlier.  Because this test is not designed for this type of cancer, they can not be certain.  One of our doctors (a very experienced one) told us that this is one of the "strangest things he's ever seen".  They are not sure about what this mass is - if it is an immediate threat or not.  I asked them if we were watching a miracle happen - only to hear one person say, "...everyday with Ben is a miracle with this cancer."  Indeed, it is.
Jennifer and I have been crushed by this news.  I am so tired and emotionally spent that I am not able to adequately express my thoughts now.  We are not sure what to think right now - other than we will commit ourselves to living each day like we ought to, trusting God, one moment at a time.  We know that every time Ben takes a nap that we may not see him wake up the same again.  Equally, we would not be shocked to go back for a scan and hear "it is gone" by the doctors.
What it boils down to is a very basic concept that God addresses in the Bible... to not worry about what tomorrow holds...  but rather shift our attention on what He has given us that moment.  And at this moment, it is quite a gift!
Please pray with us that the pressure in Ben's brain from "whatever" is causing it subsides quickly.  Please pray for Ben's healing from this terrible disease.
Tomorrow, I will update further and share more about the Disney trip and Ben's big birthday plans...  you are not going to believe this!  Also, a kind man from Lebanon suggested that we name a day of prayer for Ben, and ask/organize people and groups around the world that follow Ben's story to pray for him that day.  Details to come...

Hear me when I say, BELIEVING.  Tom for Jennifer, Eli and Ben.

11/10/04 5:30 p.m.  Tom called to request prayer and say things are extremely stressful and really confusing right now.  They just left Memphis after some tests and lots of discussions with the expanding medical team at St. Jude so they will be driving tonight and tomorrow morning to get home.  The medical team is evaluating Ben’s condition and the different test results but it is not clear exactly what is going on.  The part that is understood is that Ben’s brain is under pressure from swelling and or tumor so we need to pray specifically for the swelling to go down.  They have started him on a treatment of steroids to reduce the swelling but if it continues this pressure could be life threatening.  The team has told Tom and Jennifer that each day, each hour, is precious so they need to view life that way.  That is true, and a good word for all of us, but it also builds up a huge amount of stress and strain on them.
Tom was quick to say that they still have peace in the midst of all this, but stress is still hard to take because every time Ben goes down for a nap or nods off to sleep he could wake up and be unable to move as a result of the swelling.

The Disney trip is still on and they are traveling with Ben’s recent records and scans just in case.  Tom will give an update tomorrow after returning to Huntington.

We don’t know what God’s plan is for big Ben, but it isn’t over yet.  Still Believing, for Tom, Jennifer, Eli, and Ben.


11/09/04 – 3:00 p.m.  Tom called to update everyone on what the medical team found from the two days of testing this week.  The news is hard to take so please pray for the Bowen family. 


The tests show that the tumor has been growing extensively for the last two months and that the radiation had less impact than originally expected or hoped.  The confusing issue is that based on the growth rate and current size of the tumor Ben should be lethargic and near death but at the hospital he is acting like a regular two year old, laughing and playing.  The team told Tom & Jennifer that time with Ben like this is precious and short and that they have put one of their St. Jude specialists who lives in Orlando on alert so that when the Bowens travel to Disney they will have someone close who knows Ben’s condition. 


The additional hearing tests completed today showed that Ben's hearing is normal which is a miracle in itself because the treatment he went through normally causes sever hearing loss.


This is very difficult news to handle, but Tom and Jennifer Still Believe!  We need to believe with them and pray for them as they drive home tomorrow.
For Tom,


(11/08/04)  9:54 a.m.  We arrived last night - a strange feeling overwhelmed us as we saw the hospital from the interstate.  Kind of like being home.

This morning, Ben had labs drawn and we wait for a hearing test around 1:30 this afternoon.  Everyone at St. Jude welcomed Big Ben with great, big open arms - many smiles and a few tears.  Ben, who has been "dragging" a little over the past few weeks lit up when he walked through the hospital doors.  We have not seen him this excited in quite a while!  He walked through the halls like he owns the place, greeting everyone.  (I told him the elections were over and that he was a little too young to run for office:) 

It says a lot about a place when a child goes through what Ben has and sees it as a safe, fun place.  Even Eli was begging us to go see his Child Life Specialist, Angie.  St. Jude has to be one of the great wonders of the world - if not for the building and what happens here then for the people who make it what it is.

Jennifer and I are aware of what we are facing over the next 24 hours, yet find ourselves really calm and settled.  Thank you for praying for us through this - and we praise God for answering.  We take it one moment at a time, God gives us just enough grace to handled that.

Tammy will meet us at the hospital in a little while, then we will join she and David for dinner tonight.  Can't wait!  Remember, they are running the St. Jude Marathon in Hanna's memory this December - so let's support them and St. Jude.  Follow the link next to Hanna's picture at the top of this page.

For now, we are off to visit friends.  Believing,  Tom for Jennifer, Eli and Ben.

(11/06/04)  7:09 p.m.  I just had to share this with you.  A few minutes ago, I heard Eli pleading with someone in our entryway - I was packing for our trip in the next room.  I asked Eli who he was talking to, and he ran to the door to the room I was in and said, "I'm just praying for Ben and Hanna."

I was a little concerned because he sounded as if he was with someone trying to persuade them.  I went back to packing, and heard him at it again.  This time, I went to the doorway quietly and saw him on his knees, in the middle of the room, praying.  He was "pleading" with such intention that I (am still) speechless.  He said, "Please take Ben and Hanna's tumor away.  You just have to do it.  Thank you very much."

The whole time, Ben was standing there, sipping on his drink, watching Eli go before God on his behalf.  What a moment.

We had not been talking about this - it was completely spontaneous (and obviously sincere).  I just remained silent - and watched Eli get up and go back to playing with his Superman costume. 

Thanks, Eli for reminding us of Who can take all of this away.


(11/06/04)  5:51 p.m.  Just wrapped up the first of many birthday parties for Ben - lots of smiles here!  We are truly grateful for 2 great years with our Ben! 

I must keep this short...  much packing to do for both our trip to St. Jude (tomorrow) and our trip to Disney (next weekend).  There will be about one day at home between trips, so it will be a challenging week :) 

I want to bring to your attention that Ben's next few days will be pretty demanding on him, and ask that you keep him in your prayers.  He will undergo a series of tests to evaluate the affects of past treatment and the status of his tumor sites.  On Monday and Tuesday he will not be able to eat or drink anything most of the time and will be under anetheisa at least twice.  He has (recently) had issues with bradycardia (slow heart rate - especially during and after procedures.)  Ben has not felt real well the past few days, partly the after-effects of radiation and 8 months of chemo and surgeries, and seems to be struggling with allergies.  He seems a little more sleepy and not himself - which raises concerns in our hearts and minds.  Maybe it is normal, maybe it is tumor, maybe Ben just doesn't feel good this week - we just can't worry these things and take it one moment at a time.

On that note, I am off to sneak in a wrestling match with the boys before more packing...  I will post an update from St. Jude...  until then, firmly believing.  Tom and Jennifer.

(11/05/04)  9:02 p.m.  Up and running!  (Internet service, anyway.)  After a lot of hard work, we have internet service in our home.  A big thanks to Dan, Brian, Larry and Jeff at Adelphia Communications for going the extra mile to help make this happen.  Thanks to our friend, Mike Emerson and his team for seeing that the 2300 feet of cable was buried (through the woods).  Thanks guys!

Eight days till Disney!  We are all very excited about this trip...  Ben can't wait to see "Mick-mee" and Eli wants to meet Donald Duck and ask him why he talks so funny :)

Many great things are in store for us while at Disney - thanks to some very good friends.  Some great friends from a great company in Memphis are flying us on a private jet roundtrip to the Magic Kingdom.  This is very cool. :) 

A very dear family from the NYC area is taking care of our housing needs (at the Grand Floridian... WOW!)  If you read the Promise Magaizine article, this is the first WTC family mentioned in the article.  Matthew lost his life in the attacks on 9/11 - and our lives intersected when I worked with the team to recover him.  I will never forget praying for this family that day.  We have built a relationship with them (and many of Matthew's friends) that will last a lifetime.  This family goes to Disney to remember and celebrate his life and decided to send us this year -  to celebrate Ben's life.   I say a prayer for this family every day - they are very special people.  Won't you join me in praying for them tonight?

Needless to say, this trip is very meaningful for a lot of reasons.  We will update from Disney (including pictures) - so keep checking in.

Before we leave, we must make a quick trip to St. Jude for tests and an MRI to evaluate Ben's tumor sites.  This is the first scan since the "news" changed in August.  They expect to paint a better picture of Ben's prognosis after this test.  I maintain my prayer that God will eliminate this horrible disease and shock the world.  You know, He can do it! 

Tomorrow, we celebrate Ben's 2nd birthday with family members (his birthday is November 14 and we will be at Disney then).  HAPPY BIRTHDAY BEN! 

As for Jennifer and I, we are steady.  It is a constant battle to not become overwhelmed with the emotional toll this is taking.  We are very hurt, yet  very excited because we know that we have another day with (one of ) the best little boys in the whole world.  What a gift. 


Tom and Jennifer.

(10/31/04)  8:38 p.m.  Ben is doing very well - he tires very easy - something we hope will improve soon.  One thing will always light up Ben's eyes --   talk of Disney.  Everyday, while eating breakfast, I say,  "Wer'e one day closer to..." and the boys cheer "Disney!"  Ben always follows up with "And Mick-mee Mouse!".  Our big trip is just around the corner... we can't wait!

First things first, we leave for St. Jude next weekend to undergo some tests to see how much impact radiation had on Ben's tumor sites.  We know it has had some effect - the simple fact that Ben is alive demonstrates that.  This series of tests should paint some kind of better picture of what we are facing right now.  We maintain that this is only a picture and the "artist" has control of what it looks like in the end.  We continue to believe that God is creating quite a masterpiece!

The waterline project and slip project progressed quite a bit last week - should be complete in 2 weeks.  Over 2300 feet of waterline had to be ran through the woods, over steep terrain and to a booster station that we must build.  A 3-4 foot deep trench was cut the entire distance.  Many good people are working together to make this happen.  Adlephia Communications is assisting with cable (ran underground with the waterline) and we should have service in a week or so (making updates much easier and more consistent).  Please pray for the safety of the many people working together to help us with these projects.

Thank you for your continued encouragement - these are certainly some of our more challenging days.  I find it hard to sit still very long - my mind wonders too much.  I just wish we could wake up from this whole thing - invite Hanna over to Ben's birthday party and be normal again.  This is very hard.


(10/27/04)  10:02 p.m.  Tonight, I approached Eli's room to say goodnight (he was already in bed) and heard him praying outloud (by himself).  He was praying for Hanna - asking God to make her better so he could play with her again.  I leaned over his bed and he said to me that he missed her very much. 

I am at a loss on what to say.  He knows the truth of the matter, yet thinks death is something she can come home from.  As I type these words, the profoundness of his thinking sinks in.  He looks forward to seeing her again with such confidence and hope that it's said as if its already planned... like a playdate.  Reality is, we will see her again - and it is already planned - something that is going to happen.  I suppose that most of us spend so much time worrying about what we are missing right now when we lose someone close that we miss the joy of knowing what's ahead.  Oh, what we learn from our kids...

Believing a "playdate" with Hanna is on the way,

Tom and Jennifer.

(10/25/04)  11:21 p.m.  Interesting day.  We enjoyed a great day together - still working tirelessly on the house projects :)  and took some time to venture out in the real world for dinner and some shopping.  We chose to eat out at Chili's - they were active in the national effort to raise money for St. Jude.  It was nice to meet the folks behind the effort here locally.  Braunson (sp?) and his team treated us to a wonderful dinner - thanks guys!

Later, we made a brief Walmart visit.  On our way in, we ran into an old friend, Marsha Chastain.  We spoke briefly and parted ways.  It was, however, long enough to catch the attention of the Walmart greeter.  On our way out, this greeter stopped us to say that she will be praying for us and with an unusual confidence, said "God can do anything."  She had this way about her - partly her smile and a presence that is difficult to describe.  The way she said it was with such intention - as if to make more than the obvious point.

Then, she shared with us that her daughter, Candice died last year from leukemia at the age of 16.  It was very obvious that this "confidence" was from experience and God given.  She just kept repeating "God can do anything..." then talked a little more about Candice.  With tears in her (and our) eyes, we said goodbye and went out the door.  She put on her smile, and went back to work.

For us to hear this from a mommy who has been down this path, with such joy and assurance, confirms (once again) that we have place our faith in the right place.  Only God can give such peace.  Thank you, Virginia for reminding us that He can do anything - it's one more glimpse of how your little girl's life has touched another.

Hey guys, we believe...  God can do anything!

Tom and Jennifer.

(10/24/04)  9:37 p.m.  Thank you for your continued patience, the difficult weather has delayed all work projects (including our internet service).  It looks like we are facing a great week of weather - so much should be accompished.  (If you are available to lend a hand this week, please email me at  We mostly need manual labor working with us on the water line project.)  Thanks!

Ben continues to feel good.  He is playful and having fun - a little tired from the after effects of radiation.  Please pray that his counts contiue to rise and that he get all the rest he needs to recover from his treatments.  Disney is around the corner and he and Eli (and mommy and daddy) are so excited!  Only 20 days till Disney!

As for Jennifer and I, the transition home proves to be more challenging each day.  Friends and family are great...  it is the mental transition from fighting to living that is especially hard.  I find myself thinking more and doing less (than when we were at St. Jude).  Maybe this is good, but it us much more painful because your mind (can't help but) wonder down very hard paths.  I just want to keep my little boy forever.

I am grateful, though to have what few parents ever experience with their children.  Many go a "lifetime" never valuing their children.  It has been said that what you value will demonstrate in your observable behavior.  For many, their behavior does not say I value you to their kids.  Work, hobbies and TV interfere with the one thing they all want most.  Time.  My time may be limited - but it is good.  What about you?

I am off to bed - a busy and hard week is ahead.  Please pray for Jennifer and I - we really miss our St. Jude friends.  I look forward to talking with you tomorrow.

Still believing,  Tom and Jennifer.

(10/21/04)  8:27 p.m.  Today was a very mixed bag.  We learned that Ben's counts have improved some - so he continues to move forward.  He is still very vulnerable to infections, colds and the like, so we remain careful.  Thanks to everyone who has honored our requests to use caution around Ben - together, we can make it through this delicate time.

Over the past 24 hours or so, two local TV stations have featured Ben's story.  They did an excellent job communicating a very difficult subject.  Special thanks to Deanne Stein at WOWK and Penny Moss and Grover Tadlock at WSAZ.  It was difficult to watch - but very similar to the way we feel most days - that this is not really happening and it's just a bad TV show.

This afternoon, the Hospice team visited our home for the first time.  They are wonderful and compassionate people - and Ben seems to really enjoy playing with them :)  We had several paperwork matters to take care of - one of which is a "DNR" (Do Not Resicitate) form.  I remember when Hanna's mommy and daddy had to sign theirs - a very sobering reminder of our new reality. 

We were blessed tonight to hear from some dear friends from the NYC area (folks I met from 9/11).  They lost a loved one at the WTC and can empathize with us.  I stand amazed at God's grace to send encouragement when needed.  Thank you, Carol.

Jennifer and I value your kind words through email and the Guestbook.  Thank you for remaining faithful through this transition.  I truly look forward to having our internet issues resolved - being able to regularly connect with you throught this site is good for us, to say the least.  (Adelphia Communications is being very helpful in helping us establish new internet service.  We have to run about 2600 feet of cable (with the waterline) through the woods to our home.  This project is in the works, however has been hampered by the heavy rains.)  We can't wait to be up and running again!

As I sit here, I find myself broken and wondering about so many of our good friends from St. Jude and around the world fighting this battle.  Please join me in praying for them...  you can learn more about many of them by visiting our FRIENDS page.

For now, we remain steady -- focusing on today -- on what God has given us.  And what a pleasure that is!

We believe,

Tom, Jennifer, Eli and Ben.

(10/19/04)  9:38 a.m.  We enjoyed a great weekend together - and a great church service celebrating what God is doing in Big Ben's life.  I will take time this evening to update you further, we are knee deep in work on the house and I must go for now. 

We learned this morning that word is out that our Ben passed away - this is NOT true.  Actually, he is annoying his big brother this morning - a great (but frustrating:) sign.  I do however, want to let you know that our good friend, Ben Reed, did go to be with the Lord yesterday morning.  We are heartbroken over this loss but overjoyed that he is healed and perfect now.  Please visit his website to let his mommy and daddy know you care.


Tom and Jennifer.

(10/16/04)  9:14 p.m.  We are enjoying a great weekend together.  Ben is a little more tired than usual - most likely due to radiation after effects.  The doctors told us to expect him to become more tired for weeks or months following treatment - yet we can't help but feel anxious when tiredness is also a sign the tumor is taking off again.  It is hard to accept there is nothing else that can be done - we are so used to posturing ourselves to fight when the symptoms occur - it is hard to just sit back and wait. 

Tomorrow is going to be very special for our family - our home church is hosting a special service to thank God for the many great things that He is doing with Ben's life.  I will be sharing the message - something I ask you pray with me about.  I am sure many good things will come from this time.

Tonight, Tammy (Hanna's mommy) drove in to visit with us for several days.  (She will be with us at the service tomorrow.)   We really miss she and David.  If you are at the church tomorrow, be sure to encourage her and say hello.  We are so glad she is here with us!

I am off to help with the boys (bed time) - hope to see many of you tomorrow...  Tom.  

(10/14/04)  10:19 p.m.  Just wrapped up some prayer time with the boys - before bed.  We enjoyed a nice conversation about thanking God for good time as a family today with Eli and Ben.  It served as a great reminder that we must take one day at a time - not try to abosrb what we think the next days, weeks or months hold.  Ben just nodded his head a lot and said "love you", turned over and went to sleep.

As complicated as all of this seems, my boys have it right...  take it one day at a time, love others and rest knowing you are loved.  Once again, straight from the mouths of babes.

Believing, Tom and Jennifer.

(10/13/04)  9:00 p.m.  So very sorry for the lapse in entires...  we are experiencing some trouble with our internet service.  It has been down since Tuesday morning.

We are beginning to make a dent in the mound of boxes - soon, we should have our house in some form of order (except for the two little boys and daddy that constantly clutters everything:)  Our meeting with Dr. Gibbs was wonderful - he is our new local doctor that will coordinate Ben's medical services with the St. Jude team.  This is a kind, Godly man who is doing a wonderful job helping us through this transition.  We also met with the Hospice team - I am at a loss of words about this.  They were very kind and sensitive... 

We continue to work on the house projects, with the water line being our priority.  Our old water supply (a cisterin) sustained sigificant damage after recent storms and is not safe to use.  We are one-half mile from the nearest water line supply, so we are dozing our way through the woods and working hard to fix the problem.  For now, we take Ben to my moms for baths, etc. and haul in safe drinking and cooking water.  This is a big and expensive project that we did not want to embark on (especially at this time), but it is necessary.  Please pray about this matter with us. 

As I shared in our last update, we have a very special "request" that we would like to share.  We have heard so many powerful stories of how Ben's story has touched lives.  Many seem to connect with our honest feelings and candid updates.  We have tried to capture the essence of our day to day feelings on these pages - and pray that somehow, God will use them in your life.  Many of you have written us, complimenting our strength and steadfastness...  while we appreciate the kind words, I must admit they are misplaced.  The strength you see is far beyond us.  It is why I often sign off with the word "believing" each day.  This strength transcends our feelings (because feelings often roll with the circumstances) to something much deeper - our relationship with God.

This weekend, our family will share more about this part of our story during church services at River Cities Community Church.  Ben's story is much bigger than this - and we look forward to sharing it with you.

I know that many of you feel really far from God - life circumstances, arguements, hurtful words, embarrassment... the list goes on.  We know this feeling.  Often, I feel that God is nowhere to be found in my life.  Where is He when Ben is suffering through another painful procedure?  Yet, I know that my feelings do not change the fact that God loves me and has purpose in all things.  Feelings often get in the way of the truth - and interupt our ability to experience everything good that God has for us. 

I want to challenge you to consider joining us for church this Sunday morning.  Regardless of what has kept you from going in the past - pain, disappointment, fear, frustration - whatever - make a committment to go to church with Big Ben this Sunday.  I am confident that you will find that like Ben, your story is much bigger than "this".

If you don't live in our area, find a local church and visit them Sunday.  It may take going with a forgiving heart or a humble heart - but it is worth it to learn more about God's plan for you. 

See you there?

Tom, Jennifer, Eli and Ben.

PS - This special church service will be at River Cities Community Church on Route 60 between Huntington and Barboursville (next to Eastern Heights Shopping Center - the big round church).  Services are at 9 and 11 this Sunday.  The entire service will be used to celebrate Ben's life and story.  You can phone them at 304-736-8197 for more info.


(10/11/04)  9:33 p.m.  We are STILL unpacking things...  trying to settle into our home after being away since March.  I am not sure how to describe the feeling Jennifer and I share about this - we feel very disconnected.  We feel like we should be back "on the job" with Ben - fighting this thing.  For now, we remain busy dealing with the house repairs and unpacking - partially distracting us from the obvious.  At night, when everything is quiet we find ourselves stunned from this new reality - there is nothing more we can do. 

This leads me to what I want (but don't feel like saying) tonight - it is an excerpt from an earlier update...

"The past six months [now 8 months] have been the most painful and challenging we have ever faced. Our son, Ben has endured extraordinary pain that very few will ever know. Four aggressive brain surgeries that have (only temporarily) devastated his motor skills and lead to challenging therapies, procedures and tests. Dozens of lumbar punctures - many without sedation that cause Ben incredible pain. Five different chemotherapies and countless other medications that offset the devastation. Long tests, periods of fasting and being frightened by bulky machines and teams of medical staff have become common for our little guy. This only scratches the surface of what Ben faces every day of his life. There are good times - but only within the context of the bad.

As parents, we hurt with a pain that only a few have experienced. We share these burdens with dear friends that are on the same journey... a fight for a life. Our child's life. For many, watching this unfold (especially on these pages), seems overwhelming.  Many wonder - "How do we keep believing?" 

Throughout this journey, Jennifer and I have chosen to believe God. We believe His promises (found in the Bible.) Because we chose to do this, we are not moved by the things we see and feel. Sure, we see and feel everything happening - and it certainly hurts. We are not numb to all of this. Yet there is a balance - our hurt matched to the confidence that God is a promise keeper. We know He loves our family. We know He understands our hurt. We are moved by His love for us and stand firm through the circumstances. 

This week was full of the most difficult decisions we have ever had to make. Every option they presented to us results in Ben's death. The details are too difficult to express here. However, we maintain that God can heal Ben and do the "impossible". Please continue to pray with us for his complete healing. Believe that God can do it.

This all said, we feel strongly that we should take some "time out" to praise God for the good things He has done with Ben and his story.


"O Lord, I will praise you with all my heart and tell everyone about the marvelous things you do." - The Bible, Psalm 9:1


In spite of the difficult things Ben has faced, he has been given extraordinary grace to handle it. Always smiling, rarely crying (maybe a couple of times over 6 months) and maintaining a sweet spirit that has mesmerized everyone he encounters. Our family has been cared for, we have been given great relationships with new friends and God has used Ben's story to reach tens of thousands of people around the world. There is so much to praise God for! We believe that in spite of the recent "news", God is not done with Ben yet. I have to wonder if God is (sort of) tapping His toe, waiting for us to thank and praise Him for what he has done for Ben, our family, our community, our country and the world through this difficult time. There are many things to be discouraged about, but from where I am sitting, there is much more to praise God about. And I am sitting pretty close.

Much more about this to come... our plan is to post specific things for you to thank God for - He hears our prayers and has been answering them!  Let’s give credit where credit is due."


From the beginning, Jennifer and I have maintained that Ben's story is so much bigger than this.  Throughout this journey, we have seen evidences of this...  mommy's and daddy's around the world emailing us sharing of the impact Ben's story has on their family relationships; numbers of individuals facing dire circumstances, who have learned that God has a purpose for each of us and that life is a precious gift not to be underestimated.  Thousands of people have placed their trust in God and His grace to rescue them - wherever they are and whatever the circumstances.  Life changing instances of one little boys obvious purpose in this world. 


Tomorrow, we are going to post an interesting challenge to each of you.  Find some time over the next few days to read these updates... and keep Sunday morning open for us, OK?

Thanks!  Tom and Jennifer

(10/08/04)  NOTE:  Tom and his family will begin their daily journal on Monday.  They are unpacking right now and will set up their computer and internet service - should be up by then.  It sounds like they have some interesting things to share.

  Tom and his family will begin their daily journal on Monday.  They are unpacking right now and will set up their computer and internet service - should be up by then.  It sounds like they have some interesting things to share.

(10/07/04)  We are home!  We left St. Jude later than expected, so we didn't make it in until 2:30 EDT.  Thanks for the prayers for safe travels and well wishes!

I am off to help Jennifer with the boys - it is a little dangerous for them to being running around the house with everything boxed and laying about.  I will post more later.  Tom.

(10/06/04)  6:12 a.m.  Ben completes his radiation therapy this morning!  Way to go Big Ben!  So far, Ben has experience very little of the side effects of the treatment - so he will hit the ground running toward the next step in his journey.  We are very proud of him!

I will post more, probably tomorrow, after we return home - so check back soon!   Right now, we have to finish packing the small stuff and get out the door :)

One important note:  Many people back home have expressed interest in visiting Ben and our family when we return.  This really encourages us!  There are some very important things to consider, so we ask your help regarding this matter.

Ben is not returning home "better".  Under ideal circumstances, he would not be released to come home (we would complete his treatment plan).  Because his treatment failed and there are no medical opportunites to help him, the doctors (and us) have decided that Ben's quality of life is paramount.  This means spending lots of time at home and away from the hospital.  His spirit is high and he is very playful which can disguise the serious nature of his medical condition.  His counts (as of yesterday) were dangerously low.  A cold, the chicken pox, etc. would be catastrophic for him.  We must take extraordinary precautions.  We will coach those around us so that Ben (and the rest of us) remain healthy and safe.

To help us keep Ben safe, please call or email us prior to visiting (no spontaneous visits).  Remember, please do not approach Ben if you are (even slightly or unsure) sick/cold symptoms.  If you have been exposed to any sickness (flu, etc.) please avoid contact.  Most people, (including us prior to this new learning curve) have not had to think in this way, and we understand that.  We will carefully screen visitors and remain diligent on this matter until his counts are higher - so please understand our strong position on this matter.  Ben's road is hard enough, we do not want to make it harder.

We do want to see everyone - we just have to be very careful for a while.

It looks like we are going to have a very special community church service (at River Cities Community Church) on October 17th - more to come. 

To the rest of our friends around the US and world...  we really value your kind words and encouragement in our Guestbook - we look forward to hearing from you - as always!  Thank you for remaining constant through this time in our life. 

Finally, WELCOME HOME BEN!  xxoo Mommy and Daddy



(10/04/04)  11:12 p.m.  The weekend was productive...  packed and loaded almost everything and sent it home to WV.  My brother and one of his friends drove the moving truck round trip to save us the worry and hastle this week...  thanks guys!  Big thanks to Watts Brothers Moving and Storage in Huntington for providing the truck and to our church, River Cities Community Church for unloading everything safely.

Sunday, we enjoyed some down time at the zoo - it was a beautiful day!  This is always a great trip for us - and easy on the nerves regarding Ben's counts (open air).  We enjoyed a great dinner with David and Tammy, Hanna's parents.  I think leaving Memphis will be especially hard because we will have to say goodbye to them (in a way).  We really value their friendship.

So much to say - but not sure how to say it.  We are leaving a safe place and for all of the wrong reasons (it seems).  We have fought so hard...  The only way that I go to sleep tonight is knowing that God is still orchestrating every moment of this - not caught off guard or wringing his hands in worry.  I imagine Him broken for our pain, yet confident and steady - sure that all of these things will work together in a perfect way.  So, I am off to rest...  believing, Tom.

(10/03/04)  7:34 a.m.  Tammy, Hanna's mommy shared this recent guestbook entry from Hanna's website with us...  it puts everything in perspective.

Tammy, just thought you would like to know that Savannah is so proud for Hanna, one of the kids at my aunt's house was bragging about meeting Elmo recently and Savannah (not to be outdone) put her hands on her hips and told him, "That's okay, my friend Hanna met Jesus". Our prayers and thoughts are with all of you daily.
Rhonda Thomas
- Friday, October 1, 2004 6:25 PM CDT

Way to go Hanna!

Tom and Jennifer

(10/01/04)  11:23 p.m.  Much going on right now - we are packing up our things so that my brother and a friend can load them for us Saturday and take them home.  The boys have enjoyed the day together, wrestling and chasing each other through the boxes.   

I will update more later - have to go for now - much work to do!


PS - If you have a minute, please visit and sign note to Karley's family at .  Today would have been her 2nd birthday.  Many of you may remember her, she had the same type of brain cancer (AT/RT) as Ben.  She went to be with Jesus in June.

(9/30/04)  8:54 p.m.  Enjoyed a great day!  Ben handled his radiation and sedation very well this morning.  We are thankful that he has made it (nearly) through radiation treatment with very few immediate side effects.  His appetite is still hit and miss (although he enjoyed the cake at FedEx this afternoon) and his burns still bother him - yet he remains fun and playful.  This morning, we did notice that the dry mouth issue is worse.  Jennifer gave him a Cheerio after treatment this morning and he held it in his mouth for 20 minutes before spitting it out - still completely dry.  By afternoon, he seemed to be back to himself.

We have some very exciting news to share about our Disney trip (in November).  Some wonderful folks at FedEx Corporate HQ set up some INCREDIBLE things for Ben and our family.  We will share more about this over the next day or so. 

We enjoyed a great time at FedEx HQ this afternoon - Dave Bronczek, the President/CEO, his wife and FedEx staff hosted a fun farewell party for our family.  Ben (for the first time in a long while) at some cake and had a great time chasing Eli through his office.   The boys even managed to stage a takeover and comandere his desk!  (See above picture.  Sorry Dave, but our guys are just too charming!) Big thanks to Dave and his wife, Judy as well as Flynn, David and Judy Hooks for putting this together.  We had a great time! 

More to come soon...  off to bed for now.  Believing, Tom and Jennifer.

Update...   Davin Scites will run Ben's picture on the rear quarter panels during his NASCAR Craftsman Truck Series debut at Martinsville Speedway (VA) on Oct. 23rd.  Visit the SS Racing website for more.  Davin is a WV native and recently starred on the CMT show The Drive.

(9/28/04)  11:40 p.m.  We enjoyed another great day together - something we really treasure.  With only one week to go, Ben continues to be protected from the harsh affects of radiation treatment... other than the burns and loss of appetite, Ben is on game and loving life. 

You may have noticed that next to Hanna's picture (above), we have added a link to support her parents with the St. Jude Marathon (this December).  David and Tammy are training for this marathon to raise money for St. Jude in Hanna's memory.  Big Ben made a donation of $100 today, so I challenge you to consider matching him - let's support St. Jude and remember Hanna in this special way!  St. Jude is a gift from God to this world... Ben would not be here now if it were not for this incredible place!

As a family, we are doing well.  We remain a little apprehensive about our journey home - outside of this safe place.  I will think about how to articulate this better, but for now, pray for us during this transition.  We really enjoy our time together - but with each day we feel a heaviness that never eases.  Without reason or real cause, we become overwhelmed with emotion - hoping for Ben's life.  We have been through much over the past few years.  After my return from NY in 2001, harsh dreams and images scrolled through my mind regularly.  Trying to reconnect with my "real life" was nearly impossible.  Friends, church, family and the like seemed very distant.  Somehow, Jennifer, the boys and I held together and made it.  Just a month or so before Ben was diagnosed, Jennifer commented on how we had "made it" (when many others I worked with after 9/11 had not.)   We had no idea.

Now, we face another challenge.  Something that once again will demand our absolute resolve.  I sense (at times) the same disconnect - and feel reluctant about coming home.  Can we do this?  I am not sure.  Being sure about anything at this point is a luxury. However, we are sure that our faith is properly placed in the One who has led us this far.  If ever a moment I wondered if there was a God, I now know - He is who He says He is - I have seen it first hand.  This is why am so sure that we will make it; this is why I believe.


(9/27/04)  11:07 p.m.  Sorry for the interuption in updates...  time and energy is short.  Ben (once again) did a great job today, and was given a 'thumbs up' from his radiation doctor.  Dr. Merchant said that we are on target to complete treatment one week from Wednesday...  it is time to "go home".  I am still not sure how to process this. 

Today, I took Eli out for a trip to Target (store) and while I was loading him up in the van, he said, "Daddy, I am sad that Ben has a tumor."  And then he went on about his business.  Simply put - profoundly taken.  Today, Eli speaks for our entire family. 

Enough said.


(9/24/04)  9:37 p.m.  This has been a tough day.  Ben's was up at 6:00 and ready for treatment/hospital routine (wanting to eat, of course:(     Radiation and labwork went well, however he needed a platelet transfusion due to low counts.  There was limited bed space at the hospital, so we waited 7 hours for a room for the (2 1/2 hour) transfusion.  It was longer than usual (for platelets) because they increased the amount given considerably.  Jennifer braved the day with Ben so that I could watch Eli and take care of some business.  (She just walked in the door.)  The weekend will be savored!

On a fun note, things are coming together for our trip to Disney.  Ben does not qualify for Make-A-Wish because he is 6 months too young, so we are putting together our own trip.  Some very kind friends have been pitching in to make this trip memorable.  We will share more about this later - I will say, however that these special donations have been coming from some very special people...  making this trip extra special. Ben is absolutely pumped about going to Disney.  Everytime we log onto the Disney website and he hears the theme song, he starts yelling "Did-ney" (from wherever he is in the apartment).  His trusty Mickey Mouse (AKA Mick-mee) is with him everywhere he goes.  Last week, this plush friend received radiation marks and a patch just like Ben.  Our plan is to be in Disney on Ben's birthday to celebrate his life - year 2.  We can't wait!

Tomorrow night, we will join some new friends (from Memphis) for dinner.  It will be a nice break from the routine!  Ben's counts remain low, so we will be extra careful for a while - please continue to pray for his protection.  Several of you have contacted Mike about helping with projects at our home - thank you very much.  They have posted specifics about these projects here.

Finally, we say goodbye to more friends - Aaron Hunter and his family.  His mother has been such an encouragement to us and an excellent example of commitment.  She has braved this battle as a single mom with 3 kids - a very challenging feat.  Aaron's prognosis is not good, they face some very difficult days.  Please encourage them at  Marilyn and boys - we love you and will miss you dearly.

Believing God's promises... for Ben, Aaron and all of our St. Jude friends... 

Tom and Jennifer.

(9/23/04) 3:44 p.m.  Quick update - Ben's hemoglobin count has dropped, so they are giving him another 3 hour blood transfusion.  His platelets are very low too, and they expect to give him a platelet transfusion tomorrow. 

Other than that, Ben feels good - yeah!  The dry heaves have stopped and the (radiation) burns are stable.  Less than two weeks to go...

Tom (with Eli at the Target House).

(9/22/04)  10:59 p.m.  I thought Ben would be in bed right now, instead he is begging for our attention/wanting to play.  This is a good thing.  So I am off to answer the daddy call - have a good night!  Tom.

(9/21/04)  4:17 p.m.  Ben did very well today...  seems to be tolerating the daily anesthesia and radiation.  Each day, he must fast until recovery which is a little confusing for him, I'm sure.  On one hand, we say no food or drink (before radiation) - then we try convince him to eat up (after radiation). 

Yesterday, he ran a fever for a short while, so we did not venture out to Chili's for the national St. Jude fundraiser.  A fever is something every parent of a cancer child with low counts dreads.  We are happy to report though, that he has not maintained this fever and appears not to have an infection.  God is good.

Please continue to pray for Ben - they are hitting him pretty hard right now with treatment and it is taking a toll.  The loss of appetite, burns and daily fast is hard on him. 

I have noticed that Ben seems to enjoy looking into our eyes for a while - a very meaningful stare.  It is like he is saying things to Jennifer and I that he is not able to otherwise communicate.  What is going on in that little mind of his?  There is so much I want to say and do with him - I pray to God that those times will come.  For now, we seize each moment of each day (like we all should do).  For now, we remain hopeful and believe God can do for Ben what we can not. 

Only two weeks (here) left - so we are preparing to move back to our other home (WV).  This gives us a strange, uneasy feel - please pray about this.  I suppose it is safe here - friends on the same journey, the hospital, etc. 

A page has been added to this site outlining the needs we have back home before Ben returns.  Many of you have contacted us about these needs, so please take a minute to visit this page.  Thank you!

Off to love on the boys (Jennifer is out grocery shopping:)  I see a wrestling match coming on!  Wish me luck! 


(9/20/04)  7:04 a.m.  Don't forget to visit your local Chili's today for lunch or dinner...  100% of all profits nationwide will go directly to St. Jude today (Monday)!  If you live in the Huntington, WV area, the Barboursville Chilis will display Ben's photo with a big thank you.  (Thanks Bahnson and Tina and the Chillis team!)

Ben really enjoyed this weekend...  he repeated "mommy" and daddy" so much (but never enough).  Some very good friends invited us over for the evening Saturday (thanks Jan) it was really nice to do something "normal".  His counts remain low, so we take extra precautions and will monitor his labs closely this week.  Blisters from radiation line his ears and burn marks stretch from his head down his torso, causing him pain.  His appetite has been impacted as well, so pray that he remain nourished.  At night, we prop him up considerably due to congestion problems that cause him to dry heave (numerous times) throughout the night.  All of this is a result of radiation - and should dissipate in time.

I am happy to report though, that with all of this said, you would never know by observing Ben's behavior.  He compensates well, then runs, plays and laughs his way through each day.  No tears - ever. 

Thank you, God for being so gracious to our little boy.  We believe, Tom and Jennifer.

(9/17/04)  8:45 p.m.  As I journal these thoughts, a group of people in WV are meeting for a special service to thank God for what He has done in and with Ben's life.  It is easy to keep asking God for things when the news isn't good because that is all we see.  But with Ben's story, we see so much more.  Coutless lives changed through the life of one small boy is only the beginning of this story.  God has answered so many of our prayers - protecting Ben and our family from so much over the past 6 months.  If you read back over these entries, you will see that God is certainly worthy of much praise and thanks.

Today was a longer day than expected.  Ben's counts have dropped low, and a blood platelet transfusion was necessary.  Radiation was delayed, so Ben had to fast much longer which was difficult on him.  Still, he maintained his fun, smiling disposition and charmed all that he encountered.  I enjoyed hearing him repeat "daddy" (with a great big grin) about 1000 times in the lobby while we waited.  It doesn't get any better than this.  I realize the outlook seems bad, but with the "news" comes a level of awareness that many parents never experience.  I really enjoy getting to know my son.

Tonight, we went out to eat at a local Chili's.  The owner/operator is a WV native and really loved on Ben.  (Chuck) treated our family to dinner and invited us back on Monday to celebrate Chili's new partnership with St. Jude Children's Research Hospital.  I encourage everyone (around the US) to "join us" at your local Chili's on Monday - they are contributing 100% of their profits to St. Jude that day.  They expect to raise millions for St. Jude through this special one-day event.  Back home, be sure to ask for the manager and tell them that Big Ben sent you - and look for his picture on the way in.  This is a great thing to get behind - a great meal supporting a great cause!

This weekend looks like a lot of fun (we will have to limit exposure because Ben's counts are so low), but being together is a good thing (a real good thing!)  Remember to thank God for His goodness to Ben (and our family) and for how He is impacting so many with this powerful story.  Again, this is why we believe.  Tom and Jennifer.

PS - If you have not read the new Promise Magazine article on Ben and our family, click here to read it.  The print version is available upon request.

(9/16/04)  8:11 a.m.  Only 15 doses left!  (Do you get the feel that we are counting them down?)  It is hard to believe that in a few short weeks, Ben will be treatment free...  we can not wait to see him "cut those strings" and enjoy his life doing normal things.

Yesterday was a bit challenging (and long) - yet Ben didn't seem phased.  I am proud of him for remaining steady and not giving in to this stuff.  His spirit is not wounded, his attitude seems resolved and his smile never ends - who of us could keep this up?  Indeed, God is good to this little guy.

A few issues have come up, and we ask for your prayers regarding them.  First, Ben's counts have begun to drop to a concerning level.  This is not terribly unexpected, however it is unnerving.  Specifically, his ANC (ability to fight infection, etc.) is near the critical mark.  If it falls much more, he will have to wear his mask and we will have to limit his exposure to the outsiders.  Also, his platelets are low (making him very vulnerable to bleeding - internally or externally).  They may have to give him another transfusion before the weekend.

Ben has also received some burns on his torso, neck, head, ears, eyes and throat from the radiation.   This makes him uncomfortable to touch and line dressing changes hard.  We were told that during the last few weeks of radiation the children suffer from some upper-respiratory conjestion.  These affects may continue for months after radiation treatment ends, another thing to pray about.  He does feel very good right now, and should continue to do so, yet these issues frustrate him.

Later today/tonight, the HOW to HELP page is going to be revamped to list things that need attention back home prior to our trip home.  Many have asked about how they can help through this transition - and much help is needed - so look for that update.

Ben will be on his way to the hospital soon, so I am off to help Jennifer with the routine.  Thank you for checking in and believing God can do the impossible!  Tom for Jennifer, Eli and Big Ben.

(9/14/04)  3:10 p.m.  Ben continues to do very well with radiation...  only 16 doses left!  It looks like we will return home (in WV) for good on or around October 7th - something that brings mixed feelings.

Last night, after returning from NYC, the boys and I engaged in a wrestling match (my apologies to our neighbor downstairs:)  We had a great time!  It was another evidence of God's grace in our lives - being able to romp around with both of my boys is such a gift!  I really appreciate Jennifer taking on this weekend by herself so that I could be away.  I know it was not easy, yet she encouraged me to go so that I could continue to heal through my experience there. 

My time with the President was great, it was nice to speak with him and share/reflect of our time at the WTC following 9/11.  It was an honor to speak before him - and share my thoughts before my community and nation. 

My time in NYC was deeply moving.  I spent time with fellow rescue workers, FDNY buddies and victims families that I have grown to love over the past 3 years.  I was able to spend some time with a family that has become very close to us - they are teaching us much about this journey.  I am still working through it all in my mind...  much is too personal to share here and now.  I am grateful for the thousands who prayed for me (and my family) during my time in NYC. 

For now, we continue to move forward.  I am off to play with the boys, more to come later. 


(9/11/04) After giving a strong message at the Presidential rally yesterday in front of 10,000 people, Tom met with The President face to face and talked about 9/11 and how they were both at ground zero on the same day, 9/14.  Later, as President Bush gave his remarks to the crowd he talked about his discussion with Tom backstage.  I don’t know how Tom Bowen gets in these situations, but clearly God has His hand on him and is using him in so many different ways.
Tom had to leave the rally just as President Bush started to speak so he could rush to the airport and fly to New York City where he will spend this weekend with dear friends and families who lost loved ones.  It is GOOD for Tom to be there but it is not an easy thing.  Regular street corners bring a flood of memories from three years ago and the agonizing events of that time so we need to lift him up in prayer.  Jennifer has always been incredibly supportive of Tom’s visits to New York because she knows it is important for him to be there, but it is not easy for either of them, so we need to continue to pray for her as well.
This time away from Memphis came about because Ben is feeling better, but we cannot forget that he still battles for his life.  God is able, and as Eli said, “God is bigger”.
For Tom,


(9/9/04) UPDATE regarding Tom's time with President Bush.  He will speak at an event for the President on Friday in WV.  President Bush will be in attendance.  More to come.

(9/8/04)  10:38 p.m.  "No Mo Chemo" was the song of the day for the man of the day...  Big Ben.  Today, Ben's St. Jude medical team and a few friends joined us in a St. Jude tradition - the No More Chemo Party.  It was a lot of fun watching Ben react to everyone cheering him on, confetti and the famous chemo song.  Way to go Ben!

The Marlo Thomas filming crew was with us - and spent some time afterwards interviewing and filming Ben and our family.  It was very difficult to stare into a camera and share what we know about Ben's condition.  To actually say there is little time is so hard...  especially when I could hear him playing in the hall with his brother during the interview.  How can this be?

As for the next few days, our updates may be a little sporatic due to upcoming travel - I will travel to Huntington to participate in the Presidential Rally for George W. Bush.  They continue to work on the details...  I am awaiting word regarding my involvement and will try to post the details as soon as I get them.  Immediately following the rally, I will fly to NYC to participate in the 9/11 ceremony at the WTC.  I will spend time with some dear friends that lost loved ones that day.  Please pray for the tens of thousands that are hurting especially bad this week; let's never forget.  To Matthew's and Stephen's families - our prayers and love continue for your family.

For now, I am off to bed.  Much on my mind.  Please pray for my family as I travel - and remember to encourage Jennifer while I am gone, she will read the guestbook faithfully.


(9/7/04)  7:16 p.m.  Wow!  What a day...  First, Ben continues to do extremely well with radiation.  He (occaisionally) dry heaves, but doesn't miss a beat.  (Sometimes he even laughs after he does it - wierd, I know.)  We thank God for giving us such great time with Big Ben and Eli - we treasure every moment.  Speaking of Eli, he and Ben are having a LOT of fun together.  For the first time in 6 months, they are playing together, wrestling around and being brothers.   

Today, St. Jude released an online version ( of a publication set to release later this fall.  It is certainly a powerful story about our family.  The printed version will include a few more pictures and comments, be sure to ask about getting on St. Jude's mailing list for Promise.   We are honored that they chose to share it with the world...  we hope that it inspires many and glorifies God.

President Bush will be in our hometown Friday and I have been invited to be a part of the event.  The specifics are still "raw", but may be substantial.  As a part of the rally, a prayer will be offered for Ben and our family in front of thousands of people and to a listening God.  You may want to check in with us via the updates in the next 24-36 hours to learn of the final "plan".  What an honor!  I would value your prayers as I approach this important time.

I must say, however, that none of this brings me more joy than when I hear Ben say "daddy" (about 50 times a day).  Nothing can bring a bigger smile than watching Ben play with his big brother.  Nothing can make me happier than to know that my family is together, enjoying life.  I am a blessed man.

Believing, Tom for Jennifer, Eli and Big Ben.


(9/5/04)  8:27 p.m.  "I have a boo boo (on my knee)...  but God is bigger.  Ben has a tumor...  but God is bigger." 

Eli spoke these words, very matter of factly yesterday.  Simple, unprovoked, spontanious and true.  Out of the mouths of babes.

Believing that God is bigger, Tom and Jennifer.

PS - Eli is still trying to understand where his friend Hanna is...  tonight he had many more questions.  We can use all of the right words, yet how do you help him understand that which you don't understand?  Please pray for him (and us).

(9/4/04)  10:07 p.m.  So many visit these pages to learn about our Big Ben.  Hopefully, you have met Hanna and her family - very dear friends of ours.  Tonight, we feel strongly about asking you to take a minute to visit her website to encourage David and Tammy (Hanna's parents).

It has almost been a month since Hanna left this world - something that is still unbelievable.  As much as many of her friends miss and mourn her death, it can not compare to the pain that David and Tammy feel now.  For them, the days seem to get harder.

I want to ask you to visit her site and encourage David and Tammy as they continue on this journey.  They love the Lord, know Hanna is with God now and realize God's grace everyday.  Still, they are a mommy and daddy that miss their little girl.  I believe that times like this demand that we step up to encourage them on a regular basis.  If it takes making a note or sending a reminder to ourselves via email to check in on them, then let's do it.

They seem to gain a lot of encouragement from the postings on her website (  They read them often and really enjoy hearing from everyone. 

They have been very supportive of us through recent difficult news and continue to do so.  We are grateful for their friendship.  Their example in faith, marriage and friendship is one many should take note of. 

Thanks for considering this - I know many of you don't know them, but trust me, it is worth the momentary awkwardness to love on such a special family.

Tom and Jennifer.

(9/2/04)  10:25 p.m.  Another great day...  Ben seems to feel great.  We have finished the evening med and bath routine, so I am off to take advantage of needed sleep (early!).  Talk with you tomorrow...  Tom.

(9/2/04)  9:11 a.m.  Ben was a lot of fun Wednesday - laughing and playing, chasing Eli (and annoying him) and being Ben.  Our appointments went well, he recovered from sedation with no problems and even got the nod to remove the sutures from his recent surgery.

The boys and I spent the evening together while Jennifer and Tammy went out to dinner and shopping.  (Daddy Note:  I am thankful the Target Store staff planned activities and dinner for the families - you guys saved me!) 

We have met a new family with a son recently diagnosed with the same cancer Ben has.  They live in California and are new to the fight.  Their son, Justin is the same age Ben was when he was diagnosed.  We know the hurt, the rush and the long road they face.  Please pray for these good people.  I will post their website as soon as it is available.

Last night, we received a GREAT phone call from Huntington Floor Sanding - they have offered to repair/refinish our flooring before Ben comes home to make it clean and safe for him.  It is a gift to our family with well wishes to Big Ben...  thank you Mr. Wellman and HFS!

There are other necessary home projects that need to be addressed before Ben returns.  Some good friends and family are working quickly to compile a list to post on this website. Many of you are asking about ways you can help - thank you for wanting to help us make this transition smooth and safe Ben and our family.  More to come.

Ben just came in from radiation, better go for now.  That smile is one more reason we believe God can...   Tom and Jennifer.

(8/31/04)  10:22 p.m.  Big Ben is back!  Ben has really turned a corner today...  he appears to feel pretty good.  We have not seen Ben this active and climbing on EVERYTHING since before he became sick (last March).  This is good, but unnerving.  Climbing on and in everything is scary since we only are exposed to hard floors.  (He is only a few weeks post surgical  :-O   Oh well, boys will be boys!  It is just nice to have our Ben back.

Fittingly, Ben becomes St. Jude's Patient of the Month for September tomorrow morning.  He, and a brief story will be featured on St. Jude's website ( and in a nationwide mailing that has already gone out.  In a week, Promise, a  nationally distributed St. Jude publication features our family story.  It is the fall edition, due out November, but will be online around 9/8.  The hospital intentionally timed these events to coincide with the 9/11 anniversary - something that means a lot to our family.   Also, I will be a guest on the 700 Club (CBN) on September 10th...  reflecting on 9/11 and sharing our family's story.  Please pray for this time - that what needs to be said be said. 

It is obvious that God is using Ben's story to touch many lives.  Jennifer and I are moved by the thousands of people that have responded through this website.  Yet, we are so broken.  Tonight, Jennifer said that she is sad to think that this "fun" time with Ben is so limited.  We still believe that God can do the "impossible" with Ben - heal him completely.  Do we know He will?  No.  It is not a guarantee. I wish there was more we could do for Ben - both physically and spiritually, but I can not (at this time) find it.  One of the St. Jude staff reminded me that if we could earn God's healing touch, His love or His grace it would make Him a spectator in our lives, not God. 

So, for now, we continue to pray, love and care for Ben as best as we can. We demonstrate compassion to those we encounter every day and love others.  We press on because we know there is much, much more to this story.

Believing, Tom and Jennifer.

(8/30/04)  10:34 p.m.  We were up and at 'em early this morning...  which is good for Ben since he has to fast before treatment each day.  Radiation treatment continues to go well (however there is no way to know how it is affecting the tumors).  Dr. Merchant met with us this morning and felt that all is well for Big Ben at this time.  So we march on...

It was tough to say goodbye to "Little Ben" (Benjamin Reed) today, he and his family were told that he has a few weeks and that they should go home to enjoy the time he has.  Gina and Brad (Little Ben's parents) are wonderful people that we have grown to love.  Please take a minute to encourage them at .  We love you and will miss you dearly.

I am slowly catching up on things around here from the last few chaotic weeks, so I expect to share some thoughts with you soon... 

For now, we remain focused on family time, our faith and getting Ben through radiation.  I suppose it is a form of survival of the fittest (family version:)  Not a day goes by that we don't think about Hanna, wonder what is next for us and ask why is all of this happening.  Still, we believe God's promises and look forward to the time where we won't worry about such things anymore.  Until then, we must simply believe.  Tom and Jennifer.

(8/28/04)  9:37 p.m.  We enjoyed a great day together - running around, napping, running around again :)  This morning, we painted pottery with the boys, what fun!  The boys placed their hand and foot prints on picture frames - something we will enjoy for many years.  This afternoon, we visited with Ronell (mentioned in previous updates).  She continues to do well.  It was interesting to learn about her culture.  For them to be from a third world country, we (Americans) have much to learn from them.  Emphasis on character instead of credentials is the rule of success.  Please continue to pray for her recovery.

Tonight, we went to dinner with David and Tammy (Hanna's mommy and daddy) - we hope that we are as much encouragement to them as they are to us.  We had a lot of fun with them...  it is good to laugh. 

Last night, a clerk at a local store asked Eli who his girlfriend is, he replied, "Hanna is my girl."  Tonight he gathered many of his favorite toys and presented them to Tammy and said they were for Hanna so she would feel better.  Jennifer and I can only pray for wisdom on how to handle this.  Angie, a St. Jude Child Life staff member is a great resource for us - yet explaining such things is, at times, is beyond all of us. 

There are many thoughts to share with you, I hope to share them very soon.  For now, we value your support via the Guestbook.  Rememeber Hanna's family and take time to love on them through .

Tom and Jennifer.


(8/26/04)  10:46 p.m.  Much better day overall...  We spent less time in the hospital and more together and with friends.  Radiation went well, he wakes up fairly easy and is up and at 'em in no time.  Looks like next weeks schedule is much better - we will go in early (around 7:30 AM and be released by 10:00 AM or 11:00 AM).  This means Ben will not have to fast so long before the sedation = :)

This evening, we spent time with Laura and Eric, close friends from home.  We really enjoyed being with them!  They will be here until Saturday...  it is great to have reinforcements "on the ground" with us.

Ronell, our St. Jude friend mentioned in yesterday's update has improved today.  She is able to speak now.  The doctors feel that she had a drastic reaction to the chemotherapy she is on.  It is uncertain at this point of the long term affects this event may have on her.  Please continue to pray for her.

Tomorrow, we say goodbye to very good friends (Easton and his family) that are leaving Target House to return to home (in Orlando).  We are happy to see them move forward on good terms - God has blessed them with continued great reports regarding his cancer.  However, they are extraordinary friends that we will miss dearly.  Easton, Julie, Gary and Jamie - we love you guys and are happy that you will enjoy being a "whole" family again!  Have a safe trip home!

More to come this weekend...  check back soon.  For now, I am off to get some much needed sleep...  Tom.

(8/25/04)  9:52 p.m.  Ben handled today very well... very proud of him!  He had a very demanding schedule (most of which without food), yet he did not complain or cry.  Thank you God for giving him the "stuff" to make it through another day.  They decided to go ahead and give Ben his first radiation treatment this morning ( a day AHEAD of schedule)  - so we are moving forward again.  The plan is to treat with radiation for 6 weeks then go home to enjoy life.  Can't wait! 

The ommaya tap showed no pressure in Ben's brain - so they will not have to surgically implant a shunt.  They are unclear as to why Ben is a little more sleepy than usual.  It may be from tumor growth in the brain stem area.  Hopefully, radiation will improve this issue.

Remember to pray for Dr. Merchant and his team...  they are absolutley the best in the field and we are blessed to have them on Ben's team now.  

Today, a very good friend of ours, Ronell (from Trinidad) was admitted into the hospital for stroke-like symptoms.  She was to leave (Thursday) with her mother for a brief trip home to visit friends and family.  Yesterday, we took them out to the airport to get tickets, enjoyed dinner together (their first time in a restaurant) and made a Target store trip.  Everything was going great for them.  Ronell (age 18) even stopped by late yesterday evening to show off a new evening gown she deisgned and her mother crafted.  This morning, her mother found her on the floor, unable to talk or use her arms, etc.  (She is undergoing chemotherapy for an agressive bone cancer that required one leg to be amputated.)  She is one of the most articulate and wonderful people we have ever met.  Being from a third world country poses many challenged for her on many fronts, yet she and her mother make the best of everything they face.  Her mother, Cammie, often fixes native meals for people as a random act of kindness.  Recently, while Ben was in LeBonheur Children's Hospital, they both made the trek to the hospital (with no transportation) to bring us dinner and visit.  This is especially challenging for Ronell.  They are kind, Chrisitian people who constantly remind us that "God is able".  Tonight I spent some time with them and promised to ask each of you to pray for her health and for encouragement.  They so looked forward to seeing family and friends again.  Her treatment will last through the middle of next year, and opportunities like this are rare.  Phone conversations are so expensive that it is prohibitive to communicate that way.  For every $5 US it takes $60 of their money.  Our heart goes out to them right now...  please join us in prayer during this difficult time.  I plan to post some ways we can rally around them very soon.

Also, please remember to support Hanna's mommy and daddy.  Tammy and David have remained a faithful (daily) support to us.  Still, we know their hurt is deep and difficult to heal.  Their website is listed above, next to Hanna's picture.  Take some time to sign their Guestbook and remind them you care.

We are off to bed... a little ealier thanks to Laura Thomas, our very good friend from home (visiting us now) who helped us out a lot today.  Thanks Laura!

More to come very soon...  keep believing He can.  Tom and Jennifer.

(8/24/04)  11:59 p.m.  Long, busy day.  It is very late now, so I will be brief...  Ben's scan showed that the tumor has grown since surgery.  The good news is the growth is not as rapid as it was the week or so before surgery...  so it looks like radiation is still on the table.  We will be able to confirm this Wednesday after we meet with the medical team. 

Wednesday will be especially demanding.  Ben will be NPO (fasting prior to sedation) from 2 AM through his procedure.  Because he has been a little sleepy lately, they want to rule out swelling by checking his CSF pressure by tapping his ommaya reservoir (the port in his head that links directly to the area of his tumor.)  Additionally, we will have meetings with many doctors throughout the day, making it a very hard day on Ben and Eli.

Once I get a little more rest, I will post more.  For now, I must go and sleep :)  Tom.

PS - 1:36 a.m.  Not able to sleep.  Thinking much about Hanna.  Miss her very much.  Thinking much about Ben.  Wish I could freeze time.  Tom.

(8/23/04)  5:55 p.m.  After enjoying really good weekend as a family (Ben felt great!), today was another sobering reminder of how mean this cancer is.  Ben was sleepy/borderline lethargic and less "himself".  The concern is the rapid growth of his cancer...  is it bigger?  Ben was required to fast before the Radiation Simulation (due to general anesthesia) from 4:30 AM until 3:00 PM.  He handled that exceptionally well (thank you God!).  Ben seems to be feeling better this evening...  it's up and down...   (still wondering, "Why Ben, God?")

Because of the sudden change in Ben's disposition, they have ordered a CT scan for Tuesday morning...  as long as the cancer has not grown too much he can continue with radiation.  Radiation is scheduled to begin Thursday.  From that point, Ben will be radiated 5 days a week for six weeks.  After that, he will go through one week of evaluation and be realeased to come home. 

Mike mentioned in his update a few days ago that there are a some needs back home that we really should address before Ben returns home.  Many of you have graciously offered to help.  In the next couple of days, a needs list will be posted for you to review.  Jennifer and I are moved by the kindness of so many - thank you all for standing with us through this entire journey.

Again, I want to emphasize that God is worthy of much praise - He has been very gracious to Ben and our entire family.  We feel strongly about taking time to thank Him and praise Him for all that He has done (and will do!).  Stay focused...  Ben's story IS much bigger than this and God is the author.  Don't be distracted by this latest chapter because the story is NOT finished yet!

Believing,  Tom and Jennifer.

(8/22/04) 9:11 a.m. The past six months have been the most painful and challenging we have ever faced. Our son, Ben has endured extraordinary pain that very few will ever know. Four aggressive brain surgeries that have (only temporarily) devastated his motor skills and lead to challenging therapies, procedures and tests. Dozens of lumbar punctures - many without sedation that cause Ben incredible pain. Five different chemotherapies and countless other medications that offset the devastation. Long tests, periods of fasting and being frightened by bulky machines and teams of medical staff have become common for our little guy. This only scratches the surface of what Ben faces every day of his life. There are good times - but only within the context of the bad.

As parents, we hurt with a pain that only a few have experienced. We share these burdens with dear friends that are on the same journey... a fight for a life. Our child's life. For many, watching this unfold (especially on these pages), seems overwhelming.  Many wonder - "How do we keep believing?" 

Throughout this journey, Jennifer and I have chosen to believe God. We believe His promises (found in the Bible.) Because we chose to do this, we are not moved by the things we see and feel. Sure, we see and feel everything happening - and it certainly hurts. We are not numb to all of this. Yet there is a balance - our hurt matched to the confidence that God is a promise keeper. We know He loves our family. We know He understands our hurt. We are moved by His love for us and stand firm through the circumstances. 

This week was full of the most difficult decisions we have ever had to make. Every option they presented to us results in Ben's death. The details are too difficult to express here. However, we maintain that God can heal Ben and do the "impossible". Please continue to pray with us for his complete healing. Believe that God can do it.

This all said, we feel strongly that we should take some "time out" to praise God for the good things He has done with Ben and his story.


"O Lord, I will praise you with all my heart and tell everyone about the marvelous things you do." - The Bible, Psalm 9:1


In spite of the difficult things Ben has faced, he has been given extraordinary grace to handle it. Always smiling, rarely crying (maybe a couple of times over 6 months) and maintaining a sweet spirit that has mesmerized everyone he encounters. Our family has been cared for, we have been given great relationships with new friends and God has used Ben's story to reach tens of thousands of people around the world. There is so much to praise God for! We believe that in spite of the recent "news", God is not done with Ben yet. I have to wonder if God is (sort of) tapping His toe, waiting for us to thank and praise Him for what he has done for Ben, our family, our community, our country and the world through this difficult time. There are many things to be discouraged about, but from where I am sitting, there is much more to praise God about. And I am sitting pretty close.
Much more about this to come... our plan is to post specific things for you to thank God for - He hears our prayers and has been answering them!  Let’s give credit where credit is due.
Unshakably believing, Tom and Jennifer.

(8/19/04)  8:13 a.m.  There are many things to say - but our schedule this morning is tight.  Jennifer and I want to (again) thank you for the extra encouragement lately.  We are very heartbroken after yesterday's news.  Dr. Fouladi reminded us that God has been gracious to us throughout this journey - He will not abandon now.

With all that has happened over the past few weeks, I can't help but wonder if God is clearing His throat - as if to get our attention before He makes His point.  I am listening, are you?

Believing,  Tom and Jennifer.

(8/18) 10:00 p.m.  For those that prayed specifically for Wisdom (lack of confusion) for Tom, Jennifer, and the team, the Lord answered your prayer.  God provided that clear direction with the Bowen’s and the team at St. Jude selecting a treatment plan for Ben.  Starting on Monday Ben will undergo radiation treatments (for six weeks) on the whole head and spine areas using a newer technique of reduced power radiation that will minimize the side affects on Ben and give short term relief from the rapid tumor growth.  The doctors feel that with this treatment the cancer growth will be stunted for about a year before it returns.  Therefore the doctors have designated Ben’s case as terminal since no other major treatment would be planned after this radiation dosage is completed.  This would let Ben and the family return home to Huntington so they can enjoy his time left with friends and family here.  Tom reminds us that he and Jennifer still believe that God can heal Ben; that is what God calls us to believe, that He can.

Based on this treatment plan the Bowens will come back to Huntington around October 1, 2004 and in preparation for their return there will be a number of specific things we can do which we will list on future updates and web posts.  Also, once we get them here they will have specific needs we can take care of.  For those who have been moved by Ben’s situation and wanted to do something but have been frustrated because of lack of opportunities, your time is coming soon!  For starters the Bowens will need a new water line/pump system and a new heating/air conditioning system to keep the air and water clean and pure for Ben at their house.  Also there will be significant financial requirements since they will no longer be under the care of St. Jude Hospital so we will need to build up Ben’s trust fund at the bank (see How you can Help elsewhere on this site).

Prayer continues to be the major need for Ben, Tom, Jennifer, and Eli because this battle is more than just physical.  These incredibly hard decisions and seeing Ben in so much pain is emotionally wearing on his parents.  We need to be diligent to pray for them each day this week as Ben goes through daily procedures in preparation for the radiation on Monday.  In addition, Tom takes opportunities every day to love and comfort the mom’s and dad’s he meets at St. Jude’s Children’s Hospital.  We need to pray for him so he can be used by God to show compassion to people who are hurting.  We also need to start thinking about how we can show compassion on the Bowens who are hurting.  Mike.


(8/18) 7:00 a.m.  Today will be a big day for the team treating Ben.  All the doctors from each area will be getting together to evaluate the next step for Ben and then presenting the options and their recommendations to Tom and Jennifer so we need to lift them up in prayer today.  As you can imagine it will be difficult on Tom and Jennifer to make the choices for Ben, but we have prayed for wisdom for them in the past and God has provided it.  Tom has described wisdom as “the lack of confusion” and that is what I would ask you to pray for them today.
By last night Ben’s pulse had gotten steadier and not so low, but it had also spiked too high some of the time so it is still a concern.  They seem to have the pain under better control most of the time so Ben is back to his smiling and giggling when the pain is controlled.  Every night Jennifer and Tom split up and one stays with Ben and the other stays with Eli which is great for the kids but it is lousy for the parents which is another area of prayer concern.
A few weeks ago in another update Tom described another “spot of interest” that showed up on the MRI.  This spot could be any number of things, but it could potentially be another cancer location if the original tumor had started to metastasize.  It could also be just a blood vessel that showed an odd color on the MRI or something else equally unimportant and the team will be discussing the options for that site as well since that could impact the treatment for Ben so please pray for wisdom for the team.


(8/16/04)  7:29 p.m.  Ben is feeling some better this evening... they are giving him pain meds to keep him comfortable.  His pulse is still questionable - he is being closely monitored.  Meanwhile, Ben is more "himself" today, talking and smiling.  Jennifer and I savor such times.

Today, Ben was transferred via ambulance to St. Jude from Le Bonheur so that they can get a jump on radiation treatment.  He will remain inpatient so that he recover from the recent surgery.  We want to thank the Le Bonheur team for taking extraordinary care of our son - and us.  We will not forget you guys!

Ben underwent an MRI today to monitor the tumor.  They reported that the tumor site has not grown since Friday!  We thank God for this news!  The doctors reminded us of the gravity of Ben's condition - something that crushes our heart over and over again.  They encourage us to pray and stay positive for Ben.  This we will do by God's grace alone.

Tammy and Karen (a good friend of Tammy's and ours) spent time with us awaiting the MRI test.  I thank God for the relationship He has given us with them.  Tammy and David posted a wonderful letter to all on Hanna's site, please take time to read it.

Tonight, I will spend time with Eli - I miss him very much.  We are going to catch a Disney movie and wrestle a while.  Later, I hope to get some much needed rest.  (Last night I did not sleep so that I could keep an eye on Ben's pulse.  The monitor alarmed about every 2-3 minutes all night long, so I had to stimulate him to "stir his pulse".  They performed two very painful procedures by inserting a needle into Ben's head to draw off CSF - having to hold Ben through this is devastating.  Our nurse, Jennifer was kind and compassionate throughout the night, making our time a little easier.)  My wife will spend the night with Ben tonight with my mother... please pray for them.  It will be a long night for them.

The week is full and challenging.  Wednesday they will finalize the game plan and set a course.  Please pray for the team that Mike mentioned below as they submit their thoughts regarding Ben's treatment. 

I am too tired now to say much more... my heart is heavy and there is much I want to say.  As time allows, I will share more...  for now, thank you for your prayers and encouragement.  I want to recognize God's kind hand of mercy on our family as we deal with this new journey.  I could never imagine being able to pull through times like this, yet He is giving us what we need to do just that. 

Believing with a heavy heart, Tom.

(8/16) 10:00 a.m. Ben had a terrible night last night because he is enduring an extreme amount of pain and his pulse rate is dramatically low. Normally his pulse should be around 90-105 and now it is running around 55-65 which is dangerously low. This may be from the tumor or more likely it is just the response to the surgery. Please pray that Ben's pulse stabilizes at a higher, safe rate and that his pain comes under control. This is an urgent need for prayer this morning.  Mike.



(8/15) 7:00 p.m.  This morning was another tough one on Ben.  From 7:00 to 10:00 a.m. Ben was lethargic and sleepy which would be the symptoms if there was swelling or bleeding around the tumor since it is attached to the brain stem.  This pushed the medical team to do a CAT scan which thankfully showed no swelling or bleeding at the site.  For many patients, the second day after surgery is worse than the first which was the case with Ben.  He is in a great deal of pain, to the point that his leg trembles because he hurts so much.  This is a result of the surgery not the tumor (we think), so we need to pray that Ben recovers from the surgery quickly and that the pain goes away.  Also we need to pray for Ben’s stability so he is able to go through the many procedures this week in preparation for the radiation treatments starting Monday the 23rd.  When I asked Tom how he and Jennifer were sleeping he said they are getting about an hour at a time, kind of a power nap, and then they get up and go at it again.  They are really experiencing energy beyond human ability as a result of God’s provision of care for them.  We have the opportunity to participate in this journey with them by praying for them regularly.  God receives honor when people glorify Him and praise Him.  Humbling ourselves by praying on the Bowens behalf (and others like Hannah's parents and others listed on this site) gives the Lord honor.  You can either sit on the side lines and watch what God will do, or you can participate in the battle and pray for Ben and the rest of the Bowen family. 

There is a large contingent of physicians that will be working diligently this week on Ben’s case who will be making big decisions starting on Monday 8/16.  We need to pray for them specifically since each physician is responsible for different parts of Ben’s care.  Dr. Sanford (male) was his surgeon who led the operation last week; Dr. Fouladi (female) is the head of Oncology; Dr. Weisf and Dr. Merchant are Radiation Oncology experts who will be directing that therapy next week.  This week will see Ben being moved daily between the two hospitals since St. Jude is extremely busy and in short supply of hospital beds. 

Tom and Jennifer believe God knows what He is doing in Ben’s case.  We need to believe with them.  Mike.


(8/14/04)  9:19 a.m.  I am happy to report that my son is doing great this morning!  His recovery from this surgery is absolutely incredible.  He is like the old Ben - smiling and blowing kisses, singing and talking to us and using his sign language.  This surgery was equally demanding and more risky that the past ones (it took him months to walk again), yet he was up and at it less than 24 hours after this surgery.  The concern about his post-operative condition has turned to amazement as he appears to have no real problems.
God is good.
As Mike has mentioned in the past few updates, the news is catastrophic.  Treatment has failed and Ben's tumor has been growing rapidly over the past few weeks.  With Ben's type of cancer, this is not unusual.  It will "lay low" and then spontaneously explode in growth. 
Jennifer and I are crushed by all of this.  Time may be very limited and there is so much we want to do with Ben and Eli.  I can't believe I am typing these words.  On Wednesday, we said goodbye for now to Hanna...  we are so broken over Hanna's death and the suffering David and Tammy face each day without their little girl.  We miss Hanna!  Eli is really having a hard time with all of this - especially not seeing Hanna.  He is very angry at times.
Tammy (Hanna's mommy) was the first one by our side and the last one to leave (18 hours) after the surgery.  Fourteen hours after she buried her baby, she was back in a painful place full of memories, loving on us.  The next morning, she and David were back with us - wondering with us - "Is this really happening?"  Missing Hanna, hurting for Ben and completely broken.  There is so much more to say - but Eli is sitting near me and I must stay strong for now... 
The hope we have right now is not in the upcoming radiation.  It is in God.  The doctors felt that a large piece of the tumor was left behind in Ben (they thought they only had 2/3 of it) - meaning his time here with us was very short.  To learn that actually they got a very large piece of it and that we are a candidate for radiation is miraculous.   A gift from God.  To see the St. Jude team (the best in the world) pull together and make things happen so quickly is a gift.  To have Ben recovered enough to take this treatment on right now is a gift.  To be in a hospital (Le Bonheur Children's Hospital), where the best doctors in the country can help Ben is a gift.  To have a group of friends - some hurting so deeply - with us is a gift.  Too many impossible things orchestrated at one time to put our hope in man's ability.  So we place our hope in God, Who has brought us this far. 
I believe God can do for Ben what everyone says is impossible - even now.  Ben's story is bigger than this - it is (in part) about what you are witnessing right now.  It is about what you are going to experience over the next few weeks and months.  I encourage you to pray for the things Mike outlined below for Ben's needs, and for the thousands who are watching this miracle unfold.  Who knows what's next :) ?
We (or Mike) will keep you closely posted on what is happening here - and any needs that we may have.  We appreciate your kind support, love and offerings to help us in any way.  For this moment we pray...  more to come.
David and Tammy - we love you guys.  Eli wants me to tell Hanna that he hopes her body is working better now. 

With hope, we believe God can.  Tom for Jennifer, Eli and Ben.

(8/13) 8:00 p.m. Tom called with an update and a specific prayer request for Ben.  It was determined that St. Jude will be doing the radiation treatment starting Monday, August 23.  There is a huge amount of work to be done this coming week to be able to precisely set the laser that will be applying the radiation.  Normally it would take weeks to set up for the treatment but the St. Jude staff is working overtime to make it happen quickly.  The concern is that with the rapid growth Ben’s tumor has had over the last two weeks, it might grow so large in the next 10 days that the radiation treatment would no longer be practical.  Therefore our specific prayer this week is that the tumor would not grow between now and the 23rd.  Ben has continued to improve from the surgery which is the primary prayer focus right now.  The projected radiation treatment could last up to 6 weeks with a heavy dose 5 days per week under heavy anesthesia.  Also remember Eli because he has to deal with some of the same things the adults are dealing with, which is a tough thing on the little guy. 
Tom and Jennifer’s faith and courage are strong because the God they serve is faithful.  


(8/13) 4:00 p.m.  Good news from Memphis.  Ben is recovering so well from the surgery that he is sitting up, smiling, and even singing to the nurses.  He is in a lot of pain, but that subsides after he has been given a shot of pain medication.  The doctors and nurses are amazed (again) that Ben has improved in such a dramatic way.  Other positive news is that the MRI has been reviewed and the surgeon was able to remove more of the tumor than originally thought.  The next step is to determine if St. Jude can start a program of radiation and what the results would be.  Even though Ben is out of the “program” they may be able to do radiation therapy at St. Jude. 
Tom reminds us that God still has a plan for Benjamin and we don’t really know what that plan is.  Right now the long term (one or two months) does not look good but the short term IS good.
(8/13/04) 1:00 p.m.  Last night was a long one for Tom and Jennifer as they stayed up to watch over Ben.  The Dr’s were concerned about a number of things including a low and sporadic pulse so Tom and Jennifer stayed in intensive care all night.  This morning Ben’s pulse had balanced out so they performed an MRI which has not been reviewed yet.  The doctors said this morning that over the last two weeks the tumor had been growing at an accelerated pace, increasing 20% every two or three days and it is unknown if the tumor will continue to grow at that pace.
Tom wanted to remind everyone that this latest development does not change the fact that God has a plan for Ben.  He had a plan for Ben in January before this whole thing started and He has a plan for him tomorrow.  We need to be faithful to pray for Ben’s recovery from the surgery so he can enjoy his time family and friends, hopefully going on a family vacation soon to Disney World.  Also please pray for Jennifer and Tom because they are worn out and for Eli who misses his friend Hannah.


(8/12) 8:45 p.m.  Tom called to give the following update.  Ben remains in critical condition from the major surgery today and we need to pray that he heals quickly so we can get him home to enjoy family and friends.  He appears to be in better condition after this surgery than after his last one but it is a little too early to tell for sure how he is doing.  He has opened his eyes and looked around and also moved both arms and both legs which are positive signs.  The next step is to have another MRI done Friday which will show the results of the surgery.  All chemo therapy has stopped permanently and the only potential treatment for the cancer is radiation.  The MRI will show how much of the tumor remains and if it is small enough for radiation to be a treatment.  Since chemo is not an option Ben is no longer eligible to be in the program at St. Jude which was confirmed this afternoon.  The staff at St. Jude has really been great and Benjamin has touched a number of hearts there.  A number of them came over on their own time to give encouragement.
We need to pray for Ben to recover quickly from the surgery so he can come home.  Tonight and tomorrow will be very tough on Tom and Jennifer so please don’t phone them.  Prayer and the guest book entries are the best options for encouragement for them.  Also please remember Tammy, Hannah’s mom, she needs God’s comforting touch.
For Tom and Jennifer,


(8/12) 6:45 p.m. EST.  Benjamin has stabilized and there is no additional bleeding.  The surgical team was able to remove two thirds of the tumor but it was too dangerous to remove the remaining portion.  The family and doctors were greatly encouraged that Ben opened his eyes already!  This is an early sign that the surgical procedure went well.  Please continue to pray for Ben and the whole family.

(8/12) 3:30 P.M. EST.  We just received a call from Danny, one of Tom’s friends visiting in the hospital with them with very bad news.  The “bleeding” the doctors thought they saw on the MRI’s has actually been tumor growth.  When the surgical team got to the tumor they realized that it had actually been growing very rapidly and that the chemo therapy had not been affective in slowing or stopping the growth of the cancer.  The tumor had increased in size approximately 20% since last Friday and has grown into the brain wall and could not be completely removed.  The surgeon did not say how much was removed or how much remains but it appears that the cancer was not affected much by the treatment they have been going through.  The surgeon did not provide any time line on what would happen next.

Please pray for Tom, Jennifer, Ben, Eli and the family there because this is very difficult news to handle.  Believing is hard, especially now, so we need to lift up our firends in prayer and encouragement.  Let them see our care on the guest book.

For Tom,


(8/12/04) About 9:30 (central time) this morning Ben went under anesthesia and was given a “Stealth” MRI that would help pinpoint precisely the location of the tumor for the surgeons.  After the MRI he was rolled into surgery and his head was “locked down” to keep him extremely still and then the table is locked down as well.  The surgery started around 10:45 and after two (2) hours the surgeons got to the tumor site without any major problems.  Now we are praying (and asking for prayer) that they are able to remove 100% of the tumor.  The surgery is expected to last until 6:30 CT, so please continue to pray.  This waiting stage is tough on Tom and Jennifer but the God we serve is with them.

Yesterday afternoon was Hannah’s funeral and today her mother is there with Tom and Jennifer, doing what friends do.  Eli has been close friends with Hannah and has watched her battle this cancer.  Last night was tough on little Eli and he is struggling to understand.  He is hurt, mad, and lonely so we need to continue to pray for him as well.

For Tom and Jennifer

(8/11/04)  9:04 p.m.  Jennifer and I want to thank each of you for the incredible support you have demonstrated throughout this difficult week.  We are encouraged! 

I am not able to express how I feel right now - so much to take in.  I will say that Jennifer and I are confident in God's ability to give us what we need, when we need it.  It is far too challenging to think ahead and stress tomorrow.  After all, this is not what God wants according to the Bible.  Hanna's daddy, David and I were talking about this yesterday, realizing the truth in this.  David said it best - "If right now we could know everything the future holds, we would not be able to handle it."   That is evidence of God's grace - that He sustains us moment to moment, not all at once. 

I am about to lay my little Ben down to bed.  He will rest because he knows his mommy and daddy are with him and love him very much.  He is safe.  Jennifer and I will rest because we know that our Father, God is with us and loves us very much.  We are safe.

Believing He can. 

Tom and Jennifer.

PS - Ben's surgery is 8AM CST.  We expect the surgery will last 6-8 hours.  Either Mike Emerson or Tom's mom will update you during the day.  Pray for Ben.

(8/11/04)  11:44 a.m.  We are preparing to say goodbye (for now) to Hanna - it is still unbelievable.  Thank you for being such a great support to her family...  I know they appreciate it as well. 

Ben had labwork and a brief clinic visit this morning, and was given many hugs and prayers from his medical team at St. Jude.  We will temporarily be outside of their care until Ben is out of Le Bonheur Children's Hospital (but not out of their hearts!).  One of Ben's doctors said to us this morning that he is amazed by Ben's presentation this morning.  He is "himself" - strong, smiling and playing as usual.  It is hard to believe that he is facing something so challenging.

We will update more this evening.  He will be admitted at 5:30 AM tomorrow morning, with surgery at 8:00 AM CST.  His surgeon is Dr. Sanford - ranked as one of the very best pediatric brain surgeons in the world.  More to come...  for now, we must go do the unimaginable.  Tom.

(8/10/04)  12:13 p.m. Jennifer and I feel confident that the surgical option is best for Ben.  We have notified the doctors of our decision and they are working on the details.  The surgery will be early Thursday morning - we will post more specifics later.

We are on our way to love on Hanna's family - please continue to pray for these dear friends.  We will enjoy family time - maybe even run out to Cold Stone Creamery (incredible icecream :) for a little down time.  I must go for now...  will post again tonight.  Tom.

(8/9/04)  7:36 p.m.  My mind is absolutely overwhelmed right now...  We just met with the surgeon and oncologist to discuss Ben's current situation (tumor bleeds).  They feel like the risk of leaving this alone much longer is too great.  Ben's tumor has bled at least twice in as many weeks, and our surgeon told us that he has never had a child bleed 3 times and survive. 

They have recommended Ben have surgery this Thursday morning to remove more (if not all) tumor and the bleed risk.  They have indicated that this procedure is very risky.  Because there appears to be no "right" answer, the doctors submited the options and asked us to let them know by tomorrow (Tuesday) morning what we chose to do.  Tonight will be a long night.

Right now, Ben is sitting with me, eating his dinner.  He looks so fine.  For us to submit him to this, knowing the significant risks is disturbing.  How can this be?

Someone will keep this site updated each day - please check back.  As always, we value your encouragement via the Guestbook or email (for more privacy). 

Tomorrow, we will spend some time with Hanna's family and prepare for the visitation tomorrow night.  Her funeral is Wednesday at 2PM.  We are absolutely devastated by Hanna's death - we will miss her very much.  And Eli...  today we met with a specialist at St. Jude (while waiting for the doctors) to help him understand what happened to Hanna this morning.  She did an outstanding job explaining things to him... it was so hard though. 

Should we move forward with the surgical option, we will probably check in LeBonheur Children's Hospital sometime after Hanna's funeral. (I still can't believe this is real.)  I ask that you pray for Ben's protection over the next few days.  Pray for Eli's heart.  Pray for Jennifer and I to remain focused and confident in God's ability to carry us through this.  We know He can. 

Tired, Sad, Worn and Believing,

Tom and Jennifer.

(8/9/04)  4:01 p.m.  Ben's bleed has worsened - the area of his tumor has grown 20% since Friday.  He seems to feel pretty good, however the doctors have expressed deep concern.  The area of concern is against his brain stem.  We are to meet with the surgeon early this evening to get his opinion.  With all that is going on, I am not able to elaborate. We have spoken with Hanna's mommy and daddy several times today - they are doing well enough.  Many hard days ahead...

Pray.  Believe He can.  I do.


(8/9/04)  8:58 a.m.  Our hearts are broken this morning.  Hanna passed away earlier this morning - peaceful and pain free.  There are no more words.  Tom.

(8/8/04)  8:33 p.m.  Another demanding day.  We had to make an emergency trip to the hopsital after an episode this morning.  He became unusally tired and off balance.  (We were concerned that a bleed had occured again.)  He quickly bounced back - and was released back to Target House.  They have scheduled a CT scan for Monday morning and have asked us to monitor him closely due to recent events.  We have cancelled all non-essential appointments this week to give him a breather from the hospital routine...  we will only go in for appointments pertaining to the bleed issue.  Right now, Ben is smiling and enjoying time with Eli.  They are buddies.
Please continue to support Hanna and her family.  I am encouraged by their faith.  Yesterday, we spent time with them, loving on Hanna.  After our time there, I read a story in the Bible about a man with a very sick son.  It is a story that many have shared with us, encouraging us to "believe harder" so that our Ben will be healed.  After reading this for myself (and living it), I have to share a few observations.
This father brought his son to Jesus and said, "... if you can do anything, take pity on us and help us!"
Jesus responded, "If you can?!  All things are possible to him who believes."
The boy's father immediately said, "I do believe, help my unbelief."
I noticed the man approached Jesus and said "...if you can..."   As for me and this household, we know He can!  We believe He can.  Jesus responded by saying all things are possible - not guaranteed.  I don't know (or understand) why He doesn't heal everyone, everytime, but He wants us to believe that He can.

As I sit here and write these very words, a call just came in from Hanna's mommy.  She told me that things are very bad right now - Hanna's body is shutting down.  It has been a very hard and painful few days on little Hanna.  Still, I know that she believes God can.  What kind of faith is this?  Again, I am encouraged by their faith.

We know that this terrible disease is not a blessing - however we know that God is working through it in our lives and the lives of tens of thousands of men, women and children from around the world.  Do not underestimate what God is doing through this.  God does not guarantee a pain free ride through this life with no trials.  He only guarntees we can make it through them with Him.
I am not sharing hollow words or religious rhetoric, but heartfelt and real life experience.  God is gracious to give us the tools to get through this life.  We don't have to earn the right or do the right thing to receive them.  Only accept this gift He has for each of us.  Strange, isn't it?

This is why I believe.       Tom for Jennifer, Eli and Ben.

Reference:  Mark 9:20-24

PS - Hanna's website has just been updated - please visit

(8/7/04)  9:04 p.m.  Please pray for Hanna and her family. 

(8/6/04)  9:00 p.m.  Thanks to all of you praying for Big Ben and our family...  it has been a long day in a lot of ways.  As mentioned in Mike's update earlier, Ben experienced another bleed in his tumor.  He is doing OK - a little more tired than usual - and not quite himself.  He maintains his smile (even the Target House staff said it was hard to believe anything was wrong.) 

At this point, the doctors want to wait and see.  We have been told to watch him carefully (for developing symptoms that might indicate the bleeding is severe).  This puts us on heighened alert for a while, day and night.  This bleed is strictly inside the tumor due to the inferior nature of the tumor's vessels (tumors typically form so fast, the vessels that supply their blood have weak walls).  The cause of the bleeds may be that the tumor is dying (good) or growing (bad).  Either way, the doctors won't know what is really going on for some time now. 

We just learned yesterday that a trip home was OK for this week.  Recent developments have changed that plan...  so we will enjoy our break here in Memphis :)  Other than necessary doctor appointments, we will keep his schedule clear so that we can stay out of the hospital as much as possible.  We will work in a few "field trips" - who knows, we might even go to Graceland!  God has a plan for us here - so we accept this change gratefully.

It is hard to know how to explain what is happening with Ben right now.  Very mysterious, in a way.  I do know that God protected this little boy today.  We would have left early this morning (and not found the bleed until we were long gone) had it not been for an oversight made yesterday at the hospital.  They did not order the necessary prehydration, so they had to postpone Ben's last intrathecal procedure.  That postponement forced us to be in the hospital this morning, thus we noticed the symptoms and acted accordingly.  Ben is being looked out for, we just need to look out for it.  We thank God for his protection and you for your prayers.  He listens! 

Tom and Jennifer.

PS - Thanks to Mike Emerson for covering the update earlier...  we appreciate you buddy!

(8/6/04) 1:30 P.M. Urgent prayer is needed for Ben right now. Tom called to say that Ben woke up this morning not feeling his normal self. He seemed lethargic and uncomfortable. The family had been released by the doctors to head back to Huntington for a one week break but Tom did not feel good about taking off with Ben not feeling well. They performed an on-demand CAT Scan and found that Ben's tumor had started bleeding again. One of the main oncology doctors will be coming back to the office within the hour to review the results of the scan. Please pray for the doctor and for Ben. Also please pray for Tom and Jennifer who were looking forward to a break at home with family and friends.

(8/5/04) 9:54 p.m. Just in from the hospital - hooking Ben up to fluids for tomorrow's procedure. They decided to hold off on Ben's last inrathecal treatment because of concerns that he was not hydrated enough for the spinal tap. This is not a real big deal... so we will try again tomorrow morning.

Tonight, he began his 2nd cycle of oral chemotherapy (VP16), which lasts 21 days. After that, we have the evaluation period (with the "big" MRI), followed by either surgery and radiation or radiation only. When radiation is complete, we have a small break (sometime late October or early November). After our break, we start the chemotherapy treatments from "scratch", which will extend into spring of next year. We will press on...

Good news! Our good friend Louie (many of you have been praying for this little guy), learned that his 1st evaluation/MRI was "all clear". Pass along your encouragement at .

I am off to give Ben his meds for tonight... keep believing! Tom and Jennifer.

(8/4/04) 9:53 p.m. Today, we met with Ben's surgeon to discuss his surgical options. At this point, there are too many variables to say what is next, so we will wait until Ben's next MRI (to see what, if any tumor is remaining). His last "benchmark" MRI showed his tumor to be about 7mm in diameter. The recent emergency MRI showed it to be about 1.5 cm (the change in size is possibly swelling from the recent bleed). If his tumor is still that large in 4 weeks, they will most likely attempt surgery. If it is smaller, we may go directly to focal radiation. The bottom line is we MUST eliminate this tumor very soon.

If we have surgery, we were advised that the risk involved is significant. Because they will have to cut into scar tissue, there is a greater risk of cutting a vessel (vs. new surgery or recent surgical sites) and causing a catastrophic event. They were very direct about this. Dr. Sanford felt like they would have no problem getting the tumor as long as they could get to it successfully. We have committed oursleves to not stress these things and keep pressing forward. After all, God is able, right?

Ben remains his smiling, fun self - and we are enjoying time with him as a family. So many of you have raised money, awareness, etc. to enable us to stay together through this. Thank you all!

Tomorrow, Ben will receive his LAST intrathecal cheomtherapy treatment (the chemo injection into his brain and spine). Yeah! This treatment caused him a lot of pain, so it is nice to strike it off of our "list". Regular chemotherapy treatments will continue well into next year. He will begin (tomorrow) a new round of VP16, an oral chemotherapy that will last for 3 weeks. Last time, his counts dropped so low that they were going to stop this medication however, many rallied around him in prayer and Ben had a miraculous turn around! Please continue to pray for this issue.

On a lighter note, Eli was on the Ashlee Simpson show (on MTV) tonight. Ashlee recently visited Target House and spent some time with the kids here. Also, he was included in a local kids magazine, Jabberblabber. Way to go Eli!

Thank you for remaining faithful to encourage us and our friends. It has been (and continues to be) very rough around here. Your kind words, prayers and love impact all of our lives more than you know. Thanks for believing WITH us, Tom and Jennifer.

PS - Hanna's mommy updated her website today, please check in with them and remind them of your support. They are facing many decisions, sometimes hourly - please pray for them on this front. Pray for good rest for Tammy and David and comfort for Hanna.

Also, Louie ( and his family will learn the results of their MRI tomorrow morning. They are very good friends of ours - please encourage them and pray for their sweet little Lou!

(8/3/04) 10:16 p.m. I am absolutely spent right now... please forgive the direct nature of this update. If only I could upload my thoughts to this computer right now...

We just got in from dinner with some new friends from WV, the Kirkendolls, whose daughter is receiving treatment at St. Jude. What an (much needed) encouragement! They are leaving for home tomorrow and will be back every three weeks. God knew we needed this tonight and we are grateful for our time together.

It seems like everyday (lately), another of our close friends is receiving very difficult news. Today, we spent some time with Hanna and her family - our heart is broken for them. (If only I could take this away from her.) Please ask all to join us in praying for this special friend and family.

When we got home from dinner this evening, I learned that another family friend, the Reeds, received bad news from the doctors just a short while ago. They are wonderful people that we have grown to love. They are faced with the most difficult decision and really need our prayer and support. Please love on this family... . Take a minute to sign their Guestbook to show them they have an army of people praying and pulling for their precious baby boy.

This is the fifth friend in the past week to receive very hard news. I find myself stunned - unable to take all of this in. I feel that we are in a battle, unaware of where the enemy lies. There are no options - only a need to keep marching forward, believing that God has a purpose in all of this.

Tom (for Jennifer, Eli and Ben)

PS - Tomorrow (Wednesday) is a very long and hard day. We will meet with various doctors to explore surgical options for Big Ben. From 3:00 to 4:30, the entire medical team meets to discuss specific patient cases and formulate possible options for families to consider. They will discuss Ben during tomorrow's meeting. Please pray for these men and women. After the meeting, they will present their opinions to us for consideration. We will keep you posted.

(8/2/04) 10:15 a.m. SPECIAL PRAYER NEEDED... Just got off of the phone with Dr. Fouladi (Ben's primary oncology doctor). They have noticed a "place of interest" on Ben's last MRT - in a seperate area from his tumor site. They can not say with certainty what this area is. The two most likely reasons are a type of scarring caused from the intrathecal chemo they give him or a second tumor. They do not have evidence to say this is tumor - only that they can not rule it out.

With ATRT, a second tumor site is often catastrophic. If it is scarring, it often goes away in a few months. They are going to discuss this issue more on Wednesday as well as monitor it closely. His next MRI is scheduled for the end of August - they will wait and see if there is any change (and hope to be able to discern what this is).

It is hard to describe what runs through our minds everytime something like this happens - fear matched equally with peace - obviously God's gift in time of immediate need. Please continue to pray for us to cling to His promises and not waiver. I have discovered that we are in the best place to receive His strength when we are admitedly the weakest. We are feeling pretty weak today.

Believing, Tom, Jennifer, Eli and Ben.

PS - The boys really enjoyed the Christmas in July package someone sent them this week. We don't know who sent it (we threw out the box with the return address). If you (or someone you know) sent it, let us know via email - we have some fun pics of the boys opening their gifts and want to send them to you.

(7/31/04) 11:56 p.m. We enjoyed a nice day together as a family... had a fun visit with some new friends, Step and Courtney. They brought by some gifts for the boys (and mommy and daddy too!) Step works with Hewlett-Packard and her office sent toys and well wishes to Ben and Eli. Big thanks to the HP team! (However, the boys did not get a nap in from all of the excitement :)

We spent time hanging out with Hanna and her mommy and daddy - dinner and some down time at their house. They have become really good friends. They are facing some very difficult times right now with Hanna, yet they are focused and enjoying time with their little girl. We know they are very tired, Hanna is needing more attention and care, so please remember to pray for David and Tammy and encourage them often. They really are great parents!

Tonight, we learned that folks from Wayne County, WV pulled together and raised money to help our family. We don't know any of them, yet heard of incredible acts of kindness for Big Ben and our family. The Meadows family coordinated so much of this - and we are grateful. I spoke with them briefly on the phone and one of their young children picked up the phone to tell me that he prays for Ben every night. To hear a sweet childs voice say such simple, yet profound things is incredible. I heard the eagerness to see God help Ben through this and was deeply moved. Once again, out of the mouths of babes...

We continue to press forward, scared and tired. Still, we rest in God's ability to handle everything. Believing, Tom and Jennifer.

(7/29/04) 3:46 p.m. MRI results are in... looks like the tumor and bleed area is stable. Actually, the ballooning effect with the tumor (as a result of the bleed) has already deflated some. We have definitely noticed improvement with Ben's balance, eyes and vomiting. We thank God for this great news! Interestingly, between CT scans last week (Wednesday and Friday), Ben's symptoms continued to worsen. Friday night we attended the Promise Keepers event (see update from last weekend) where Ben's story was a part of the program (unplanned). Thousands of men gathered around and prayed for Ben (see picture above) - I am not sure that I can describe it, but it was powerful. The next morning, Ben's symptoms completely reversed. Not some - but all! He has been a different boy this week (as noticed by everyone). God used Big Ben to impact the lives of many men there that night - and they obviously were used to impact his life too!

It has been a long day, so we are off to do something fun now... a more detailed report regarding Ben's MRI will be available tomorrow. We will keep you posted. Tom and Jennifer.

PS - Just in from the monthly birthday party for all of the kids in Target House - it was a full house. Some of our good friends (from various places in South America) approached me and asked about Ben's MRI. They went to a special mass last night at a Spanish speaking church and brought Ben before the people there. He was added to a 24 hour prayer vigil that they launched last night. (They are still praying even as I write this update!) Though we can not carry on a conversation because of a language barrier, we are able to communicate so effectively through hugs (often given :), kind deeds or simply giving an encouraging look. Tonight when they eagerly asked about the MRI, I said "no bleed" and they all cheered. Many hugs and kisses followed. Everyone made a "prayer sign" with their hands and pointed up - acknowledging that God had answered our prayers. A beautiful reminder that God does not require a complex or "well put" prayer with details - only open hearts with "the basics".

Jennifer and I have found a few new things that we can do to support our foreign friends while they are far removed from family, etc. We will keep you in the loop and pass along ways you can help. Stay tuned...


(7/28/04) 8:35 p.m. Not quite sure how to open this update... our time today was relatively easy, yet some of our close friends are suffering deeply as they have very little time left with their precious children. I will share with you the email of a friend of ours who learned today that their sons cancer has returned fiercely.
Hello everyone.

Sorry to have to talk to everyone like this. I was hopeing to report good news to you, but unfortionantly this email is the farthest from good news ever. We are going home to Oklahoma on Monday because they can not do anymore for our child. We decided along with the doctors it would be best for him to be at home in his environment when he is taken away from this world. We are sad to report that they have given Taigen less than 2 months to live. Its hard on all of us right now. You can not imagine the tears that have been cried or the hearts that have been touched by our child. He is sweet and innocent and he will soon be with jesus. I am saddened to see my son go, but i know that he will be in heaven with my daddy. If you want you can still mail letters to him at home. Our address at home is:

We do not have a phone but i will try to get to the computer at the library when i can to give reports. I really do appreciate all of you praying for our family. We still need your prayers to help keep us strong. Its so emotionally hard on all of us and i am sure this will break your hearts when you read. Please know that he is going to heaven where there is no pain. Please pray for my daughter, god, i don't even know how to tell her that her best friend/brother won't be with her any more. I love you all and thank you for everything.


Little Taigen has the same tumor as Ben and was actually doing much better than Ben overall. They were able to resect 100% of his tumor, but as it often goes with ATRT, it came back so quickly they were left with no options. After speaking with Taigen's mommy and daddy today, I am left broken and angry. Taigen's dad asked me to keep fighting hard for Ben and not let this get me down. I agreed and we parted ways.

Tomorrow, we go on - physical therapy, occupational therapy, sedation, MRI, recovery, chemotherapy and clinic. (His MRI is the "highlight" of the day to evaluate what is going on with Ben's tumor. After last weeks bleed, it has swollen, making the tumor appear larger. This MRI will confirm this and let us know how if the tumor is responding to treatment and provide the surgeon with information needed regarding a possible surgical approach.) They will have the results of Ben's MRI by tomorrow afternoon. We will post the news as soon as we can.

Taigen's dad left me a challenge as we parted ways today - "Go love on Ben for us tonight, you don't know what tomorrow holds." I think this is a fitting challenge for all of us. For Taigen and his family, go love on your kids tonight.

Confused but believing, Tom and Jennifer.

PS - If you would like, send this family a word of encouragement (even if it is to say that you followed through on his challenge.) You may email us at and mark the subject "Taigen", we will forward your message to them. I know this has been very hard on them financially, and I will be happy to forward any donations you or your church, office, etc may have for them as well. (They have not had much support/fundraisers, etc.) These are truly good people - let's rally around them and show them we care.

(7/27/04) 6:57 p.m. If you have been following Ben's story the past week or so, you know it has been an interesting time. Very difficult circumstances met with incredible demonstrations of God's grace.

Ben is doing well - he seems to not be as affected by the bleed as he was last week. He is scheduled to have an MRI Thursday to evaluate the tumor and bleed area. We will keep you posted. Tomorrow, we will meet the surgeon (Dr. Sanford) to discuss Ben's surgical options. Our next evaluation period is in a few weeks, and we know there may be several options presented regarding Ben's continued treatment. Depending on what the evalaution period shows, they may suggest surgery, high-dose chemo (with stem cell rescue) or both followed by focal radiation. If we keep on "schedule", Ben will go straight from chemo to focal radation for 6 weeks. After that, we begin the process all over again (chemotherapy).

To us, this seems like an intense and confusing time. However, we believe God has a plan for Ben through this - regardless the circumstances. We know He is not wringing His hands wondering what to do next. Still, we feel strongly about asking you to pray with us as we approach the upcoming decisions. The Bible says "...The prayer of a righteous man is powerful and effective." (James 5:16 NIV) We expect to see some powerful and effective things in coming days (as we have already). Let's keep praying for Ben - that he will be healed of this cancer and live to share with the world his powerful story!

Remember Hanna - pray for God's touch in her life. It has been very difficult for Hanna and her family lately. As much as we want to share their burden, there is no way to take away the pain they have right now. That is why we must pray for them and ask God to give them comfort and peace. Believing, Tom and Jennifer.

(7/25/04) 11:20 a.m. You may want to read the past few updates... it is encouraging to see what God is doing in Ben's life right now. We don't have a lot of time - this will be brief. Ben's counts dropped significantly (this is expected). We just learned that Ben will need a blood platelet transfusion this afternoon... so we will be out of pocket a while. Please pray for Ben's protection from infections, etc. during this critical time. Low platelets can cause bleeding, so we are especially careful considering the recent bleed in his brain.

Jennifer and Eli are hoping to visit Hanna this evening for a little (much needed) play time. Keep praying for Hanna and her family - this is a really tough time for them. They are "handling" the recent challenges so well (if there is such a thing) - it is obvious that as badly as they hurt, God is giving them strength.

We continue to learn of the impact Ben's life has made on men at the Promise Keepers conference (mentioned below). Trust me, it's good stuff! Keep believing! Tom and Jennifer.

(7/23/04) 10:28 p.m. MUCH PRAISE REQUIRED. Today, Ben had another CT scan to see if there is any change with the bleed in his brain. The report indicated that the tumor/bleed area is stable. We will continue to monitor this very carefully - an MRI is scheduled for next week to identify the specifics of the bleed. We will meet with the surgeon Wednesday to discuss surgical options regarding the tumor and (if needed) the bleed. They hope to leave the bleed area alone and allow the brain to reabsorb the blood naturally. They have started Ben on steroids to help with irritation and have raised the minimum platelet level (for transfusion) considerably. The doctors told us that it may take weeks or months to reabsorb the blood. This is disappointing because this blood swollen tumor is causing Ben symptoms that mimic his prediagnosis presentation. (Vomiting, dry heaves, lethergy, balance problems and visual impairment.) We are praying that this reabsortion is quick and painless for Ben. The situation remains volatile and we will remain diligent in our careful watch over Ben and our prayers for his protection.

I am not sure how to address this next item - I am careful not to proselytize, but I must share with you one of the most incredible demonstrations of our faith in action tonight. The other evening, I mentioned that we attempted to have dinner out with some friends when the line to the restaurant was too long. We opted to say goodbye and run across the street where there was no wait at a Friday's. While there, a group of men sat next to us - one of which was wearing a Promise Keepers shirt (ended up they were with PK national office). As we were leaving, we spoke briefly, exchanged numbers and went our seperate ways. As a result, we were invited to attend the Promise Keepers event held here in Memphis. Unsure as to whether we could make it due to Ben's situation, we waited until the last moment to go. As today progressed, we were given the green light to enjoy our evening - so we went as a family to the event. I will not (nor can not) begin to describe the happenings of the evening... other than God was kind to meet some very real needs that our family was experiencing. Many of the PK staff spent time with us this evening - praying, encouraging and loving on us. Joe White was the speaker for the evening and as he was wrapping up his talk, he referred to God being our lifeline - regardless of circumstances, He loves us and will meet us wherever we are. He took a moment to speak of our journey as a family and thousands of men stood to their feet, turned to Big Ben and poured out their hearts for him and our family. Moments later men from around the arena stormed forward to commit their lives to God. It was an obvious display that God is using this little boys story to impact lives everywhere.

I wish it didn't have to be this way. I still find myself shaking my fist at God asking... why?! I can not wrap my mind around why these things happen, yet my heart tells me that God does love me and He will meet me wherever I am. Even when it's by the bed of a sick little boy.

So, tonight I leave you with a heavy heart for my little boy. Indeed, "urgent prayer is needed", but equally "much praise is required" for a God who is meeting this family's needs every moment of every day. Believing, Tom (for Jennifer, Eli and Ben).

PS - BIG thank you to Julie (Easton's mom) and Kerin (Louie's mom). Unexpectantly, we were in meetings with our doctors that demanded our undivided attention. They stuck around (with their kids) after their appointments to help watch Eli. This is the kind of "family" that makes St. Jude what it is! Thanks guys!

(7/22/04) 10:07 p.m. URGENT PRAYER NEEDED. You may need to read the past few updates to catch up. Tonight, Ben is feeling OK. He vomited his dinner, thus adding to our concern for him. We will take him to the hospital in the morning for a CT scan to "compare notes" with the last scan. We (or Mike Emerson) will update you as soon as we have more information.

We continue to hold steady, praying and believing. We are not strong or superhero parents -- God does not expect that of us. The strength in these moments is beyond us, only confirming our faith in a most high God. I think He works best in our weakness. Please pray that we keep the faith and not waiver.

Ben is still smiling and being himself... has a particuliar liking for Stephanie (one of the Target House staff) and was loving on her just a few hours ago. (That's MY boy!) God is surely giving this little man the "stuff".

We truly value the encouragement and prayers... keep it coming! Tomorrow is a new day. Until then... Tom and Jennifer.

(7/22/04) 12:25 p.m. URGENT PRAYER NEEDED. It was a very long night. Ben was up from 2:30 a.m. - very restless. He did not want to lay down. This morning, he received his chemotherapy as scheduled and had a visit in his clinic. We reported last nights happenings - they took this seriously and are working on an MRI time for Ben. (Ben requires a special sedation team to have an MRI). They told us that if we did not have one Friday or we felt something new was presenting, we can have an CT immediately.

Other than being a little more tired, loss of balance and eye/focus issues Ben is his fun, smiling self. We think he is experiencing some bad headaches from the bleed in his head, thus he is on Codeine to help with pain.

Our hearts remain broken for Hanna and her family... they were encouraged to contact Hospice yesterday. They are not giving up - Hospice will help them manage Hanna's treatment and monitor any issues she might face. Tonight, we hoped to have dinner at Cracker Barrel with David, Tammy and Hanna (Hanna's favorite restaurant), but we just received a call that they had to take Hanna to the hospital due to a fever. We know many of you follow Hanna closely and pray for her often. Jennifer and I would like to encourage you to pass Hanna's website along to friends and family, ask your church to pray for her and take a moment to sign her Guestbook. ( Remind Hanna that she is the prettiest Princess on campus! :) Three weeks ago she was running around playing with Eli and Ben...

Anyway, it is obviously an intense time around here. We really appreciate the comments you all have posted (especially since last evening). It really does help. As I type this Ben is sitting beside me and just started saying "da--ddy" over and over with a big smile. That really helps too :)

Still, nothing replaces the knowledge that God is not shaken by this and that all is working together for our good. We can rest in that. Tom and Jennifer.

PS - Many of you have shared that Big Ben has inspired you... We challenge you to do something with that inspiration - do a random act of kindness today. Tell them Big Ben sent you!

(7/21/04) 5:54 p.m. URGENT PRAYER NEEDED. As we have mentioned lately, Ben seems to be more tired and nautious than usual. His eyes are "sundowning" more and he seems to struggle focusing when he wakes up. After carefully watching these symptoms, the doctors decided to conduct a CT scan of Ben's head this afternoon (unexpected procedure) and scheduled an MRI ASAP (probably in the next couple of days.)

We just returned from the CT scan and the doctors found that Ben has experienced a bleed in his brain at the site of the tumor. It is unknown if it is still bleeding - more tests are needed to determine this. It is bleeding from within, therefore the tumor is balooning out and appears larger. This is obviously a great concern to us. The doctors will monitor this closely and instructed us to keep a close eye on him.

Very interesting thing happened just before we left for the CT scan - a group a students from Pea Ridge Baptist Church (from our hometown) "just so happened" to stop by as we were preparing to leave. We had a nice time of prayer together and received a great deal of encouragement and focus before going to the "battlefield". As our pastor back home reminds us often... "God is good --- all the time." Indeed He is. We are grateful these young men and women chose to stop by when they did. Timing is everything!

At this point we wait and see. The surgeon evaluated Ben's scan this afternoon as well and felt that surgery is not recommended "at this time". He wants to see how things develop. We are unclear as to the ramifications of all of this right now... so we will do what we know to do... pray, love on Ben, be a family and believe God.

My mind is too cluttered to go on, so I leave you with this - pray for Ben and believe God's promises. We (or someone) will keep you closely posted. Tom.

PS - The upcoming (to be scheduled very soon) MRI should provide insight regarding this latest situation. As we understand it, the doctors are fairly confident that this is a bleed and not tumor growth. We are not sure how to process this... other than this upcoming MRI is significant.

Tonight, we were to have dinner with the students that visited us today, but the line was too long and the building was too hot, so we opted to part ways and go to another restaurant. Interestingly, the men at the table next to us were national Promise Keepers staff. We had an encouraging conversation with them and learned that there is a PK event at the Pyramid in Memphis this weekend. They have invited us to attend as a family and will have prayer for Big Ben at the event.

This is the God we have been talking about. Keep believing, Tom and Jennifer.

(7/20/04) 8:37 p.m. Good day - Ben's schedule was light so we enjoyed family time! Just a few minutes ago, we posted two new video messages. One is Ben greeting his new stuffed Mickey Mouse... listen carefully, he calls him Mick-mee. "Mick-mee" is Ben's favorite thing - can't get enough of him. Ben's eyes light up everytime he sees or hears of Mickey Mouse! On the second video, our family is together... complete with Eli climbing on his daddy (what else is new?!) Ben says "thank you" and even signs it.

Medically, Ben is still moving forward - diet is bad, but this is normal. Counts will drop to the lowest this weekend... so we will try to enjoy some time out the next few days before isolation.

St. Jude releases an impressive publication quarterly, Promise, and will feature Ben and our family in the fall installment. We previewed the rough draft today and it was incredible! We understand this may be a four page spread about Big Ben. Also, we learned that Ben will be named "Patient of the Month" in September. The timing was intentional to coincide with the anniversary of September 11th - a very kind gesture by the St. Jude team. We will keep you posted. (The Marlo Thomas telethon special with Ben will be released sometime next year. Many of you ask about this - and we will be sure to keep you in the know as more information comes.)

We have been fortunate to have good friends in the area this week... yesterday, one of our old YFC kids (not a kid anymore:) stopped by with her children and sister. What a treat! Tomorrow, the youth of Pea Ridge Baptist (from WV) are stopping by Target House to visit our family. How kind!

Kind of feeling like we can catch our breath for a few days... yet our hearts never seem to ease. The battle continues... and we will win. Another one of God's promises :) Keep praying, keep visiting, keep signing in - it all means so much and reinforces us to keep going. We really enjoy the prayers, laughs, weather reports (especially from Spencer Adkins), Bible verses, and kind thoughts that you sign to show your support.

Some of the most challenging days are ahead of us. We maintain that either God is or He isn't who He says He is. We choose to believe that He is. Tom and Jennifer.

(7/19/04) 9:41 p.m. Just in from an evening with friends from Target House - enjoying pizza and company. If one ever has to fight this battle, you would want these people with you. It is obvious that even though everyone has their own hurts, they share yours as well.

Say a special prayer today for these families, who stand with us in the fight to beat this horrible monster. For Ian, Carson, Easton, Louie, Hanna, Taylor, Aaron, Cole, Jonathon, Mariselis, Matt, Haden, Claire, Alex, Fernando, Little Ben, Tagen, Kyle and the hundreds of new friends at St. Jude - we believe and pray... Tom and Jennifer.

PS - Aaron and his family received some difficult news Friday... visit them at . Thanks.

(7/19/04) 4:12 p.m. We are back online (for now) they still are having trouble with the internet - either Tom's mom or Mike Emerson will post updates in our stead if the problem persists.

Ben is doing well today... the vomiting has stopped. His spirits remain HIGH and smiles long - keeping us energized! He took a few bites this afternoon (first food in several days) and is off the IV bag (for post chemo hydration). This morning, he took his G-shot and gave us the "ain't no thing" look (well, sort of :) Kidding aside, he didn't shed a tear, didn't flinch and went on like nothing happened. Many of you are praying about this matter - and we are grateful. Moreso, we thank God for giving Ben the "stuff" to get through this painful procedure.

What's next? Ben's counts are going to fall, so we will keep a close eye on him and lay low to avoid exposures. Most likely, they will be critical by the weekend. This time, however, the doctors advised us that it may take a while longer for his counts to recover. We will wait and see then do whatever it takes. This week holds therapy sessions, clinic visits and chemotherapy as well as the routine home based care. The G-shots will continue for the next week or so. Please pray for his protection from infections while his body is extremely vulnerable. Also, his diet has been significantly impacted by all of the chemo/meds that he has been given. Please pray for Big Ben's diet and overall strength.

Very soon, we will be making some changes to the website. We are looking in to hiring a web developer to help us make this best of this incredible tool. We have been given a couple of leads and hope to have a few more. If you know someone that is web savvy and may be able to consider this project, please email us at .

Once again, we want to THANK everyone for continuing to encourage and support us during this time. The Guestbook and watching the counter climb remains one of our greatest encouragements. Remember our friends at St. Jude - they appreciated your visiting and signing their Guestbook too! (Special note - Hanna is really facing some tough things right now. Please bookmark her page or make a note to encourage Hanna and her family on a regular basis.)

More to come... Still believing, Tom and Jennifer.

(7/18/04) 9:30 p.m. Due to some difficulties with their internet service, Tom has asked me (his Mom) to post the update this evening. Ben is home from the hospital ... out a day early ... only because Tom and Jennifer are experienced with caring for an IV at home. Tom and Jennifer are very TIRED! Pray for a restful night. Ben has not eaten for several days. He was vomiting all day on Saturday. All of this is expected due to the cumulative effect of the chemo. Those painful G-shots began this evening, again, and will continue until his ANC counts maintain a suitable level. (Ben's counts are expected to drop later in the week.) Tomorrow they will be 'hitting it hard again'--back to St. Jude for blood work, clinics, therapies, etc. It will be a difficult week. Continue to pray for God's hand upon Ben, which has been so evident. Ben continues to smiles, even through a yucky stay in the hospital ... no whimpering or crying.

Please remember to check Hanna's website for the newest update. She and her parents returned home from Disney a day early due to some concerns for her.

Hopefully Tom will be able to post an update on Monday. Janet

(7/16/04) 11:57 a.m. You may want to read the past few entries to understand... I have just returned from the night shift with Ben, up about every 30-45 minutes... very tired now. Jennifer swapped out kids with me and Eli and I hope to get a little rest. Ben began his chemo around midnight and is hanging tough. This morning, he received the intrathecal chemotherapy (via the port on his head that delivers activated chemo straight into his brain). This combined with the other meds has made him very sick. He was vomiting and looking pretty bad when I left him, BUT he smiles on! Evidence of God's grace.

Things can become very hard on him over the next few days - a lot of the "bad" chemo with strong side effects. I am out of words except to say pray for my son. Believing, Tom.

PS - As I left the hospital a little while ago, I passed room after room - full of Ben's buddies. We have come to know and love this people dearly. When you pass them in the hall you see the concern in their eyes... please remember these special friends too.

(7/15/04) 4:39 p.m. UPDATE... Please read last nights update for details... Ben completed his blood transfusion a little while ago and should be admited around 6:30 CST. It will be a long night, so we won't be able to update until tomorrow. Keep praying for Ben and all of his friends at St. Jude. Tom.

(7/14/04) 8:23 p.m. Just in from a nice dinner with a great couple from Memphis that have been great friends - Randall and Jan Carrier. It was our last night out for a little while.

PRAYER NEEDED - Due to low counts, Ben will require another blood transfusion. In order for him to begin the next doses of chemo (scheduled for Thursday), his counts must be at a certain level. The transfusion should boost his hemoglobin counts, but his ANC (ability to fight infection) is near the "borderline". If they drop much overnight, they will suspend his treatment.

If things go as planned, Ben will get his blood transfusion in the morning (and possibly have phyical and occupational therapies during the transfusion). Soon thereafter, he will be admitted into the hospital to receive his chemotherapy treatments. Because the combination of chemo drugs given over the next few days is so harsh, he must be inpatient. Our goal is to be out by Monday morning. During this hospital stay, they will administer the regular chemo drugs and the intrathecal (via his brain) chemotherapy. The intrathecal chemotherapy alone causes him to become very sick. This will be one of Ben's more demanding chemo schedules thus far.

Today, one of our doctors prepared us for a longer "counts recovery" this time because the combination of chemotherapy drugs as well as number of doses is cumulatively impacting his body's ability to bounce back. The counts we are especially concerned with are: ANC (ability to fight infection, etc.), hemoglobin and platelets. When his ANC counts are low, we resort to staying isolated from others in order to protect Ben from simple illnesses that can be devastating on him because he can not "fight" it. When his platelets are low, he can bleed easily, things like brushing his teeth are restricted. Low hemoglobin results in low oxygen in his blood making him feel very tired and pale.

We have to confess that all of this is unnerving and frightening. This is our little boy! If we could only fix this. Our minds don't understand it, still we believe that God cares for Ben more than our understanding and will tend to his every need when we can't. These are some of the hardest words I ever written.

Believing, Tom and Jennifer.

(7/14//04) 7:18 a.m. Ben did very well yesterday - worked hard in Occupational and Physical Therapies. They are working on his ability to cross midline with his arms to execute different tasks. (Because his corpus callosum was cut so much during sugery, the ability to use his hands, arms, legs, etc. together is challenging.) He is also working on "figure ground", or depth perception. He has a difficult time seeing the difference between steps, so he tends to walk straight off of them as opposed to down them.

Some new friends from Memphis brought pizza by last night - had a great time! Their son is close to Ben in age, which was fun for the boys (and mommy and daddy to watch:)

This morning, Eli and daddy are going to the movies - to watch the classic Cat in the Hat film. Mommy and Ben are off to the hospital for bloodwork and clinic... preparing for inpatient and heavy chemo beginning Thursday.

Hanna's mommy checked in last night from Disney - said they are having a great time! We were able (with GREAT help from Blaire, a cast member with Disney) to arrange Disney Character Breakfasts and Dinners all week long for Hanna and her family. Thanks to those of you who pitched in on this special gift to Hanna and her family. The entire trip is covered, as well as food and some spending money. About 3/4 of it was from complete strangers! The encouragement David and Tammy received from this act of kindness far exceeds the dollar amount. Today, Eli (and us) will spend time with a Child Life Specialist to work through some of the questions he has about Hanna. Pray for this time.

Believing. Tom and Jennifer.

(7/12/04) 9:54 p.m. Sunday and Monday were fairly easy days... enjoying a lot of fun time as a family! Yesterday was Hanna's big party - lots of smiles! We had a great time being normal - with great friends. "Hanging out" was the doctors orders for today. Nothing spectacular, but it was priceless. So many times I watched Ben and Eli playing and having fun... they are so good together. I found myself shaking a fist at God hoping that he sees this and will intervene soon. How much more?

Tomorrow, Ben has a short schedule, physical and occupational therapies - the "calm before the storm". Wednesday is bloodwork followed by a clinic visit (we will address the balance and sight problems we have noticed lately). Thursday, Ben goes inpatient for the "bad chemo" and should be released by Monday. Counts will drop later next week... and then more of the same. I feel redundant, but know it is necessary... please pray for my little boy. To us, the details seem to matter, but to God it's all the same. Healing. That is what Ben needs.

Continue to pray for Eli. He is such a good - make that GREAT big brother. I know he understands so much... and probably wonders why too. Wednesday, he will spend some time with the Child Life coordinator at St. Jude working through some issues related to Hanna.

This new life has so many facets, so much need, so much hurt that it is beyond the scope of human intervention. I remain hopeful though because I know that I can do all things through Christ who strengthens me. I can not explain this except to say that we have made it this far and there is no other explanation.

This is what and why I believe. Tom for Jennifer, Eli and Ben.

(7/10/04) 10:12 p.m. Just in from a nice day off - again! Ben is holding his own, only having a few dry-heave incidents today. He is still a little wiped out and unsteady on his feet - we think this is from the vincristine chemotherapy. Easton's mom shared that he had very similar experiences at this point during treatment - all from that drug. It is one of the more devastating chemo drugs, yet it is given in about 5 minutes in an outpatient chair. (For those of you back home, WOWK TV filmed this being administered the other day and it may be on the story they share.)

We spent time at the zoo this morning with the Napiers (from WV) - Eli really enjoyed spending time with their boys. It was nice to do something "normal". This evening we went out to dinner and picked up some things at the store... preparing for a long we of treatment, therapies and inpatient chemo beginning Thursday. Please pray for Ben - this continues to take a toll on him physically. Inpatient means more of the "bad" stuff and he hasn't really recovered from the last time. This is normal, but unnerving.

Tomorrow is Hanna's big day - remember to send her birthday wishes via her Guestbook at

Please remember Taylor (one of Tom's other little girlfriends:) She and her family continue to face tough decisions. She is being hit with new drugs to help deal with some new issues and it is hard on her. Take some time to visit her at .

So much is going on with many of our friends - when time permits, visit our FRIENDS page and follow the links provided. Drop a word of encouragement to them and tell them Big Ben sent you!

Tonight, another family here at St. Jude is hurting especially bad. Zoie went to be with Jesus this morning. Let's pray for this family. .

Tonight, for Zoie and all of the other kids and families hurting, we believe. Tom and Jennifer.

(7/9/04) 10:09 p.m. Sorry for the interruptions with updates this week - we have had some guests with us and time was short.

Ben's counts continue to improve... it has taken a bit longer this time though. Next Thursday, he is admitted again for inpatient chemotherapy and once again we will have to contend with counts dropping. We have noticed that he is falling/losing his balance more the past couple of days and his "sundowning" (when his eyes look down and he must adjust his head to see upwards of midline) has become more frequent. We are a little concerned about this - not sure how to read it. Is it the chemo? These are side effects of the drugs he takes and are also the symptons he demonstrated when this journey began. We are looking into this and will keep you posted. Still, he remains the same, smiling Big Ben.

Yesterday and today were real treats for our family - good friends that we have met through this terrible time have come to visit with us. Tom and Nancy from TX (AKA Raggedy Ann and Andy) have been such encouragements and even took time to dress up and make balloon animals for the Target House kids.

Today, representatives from the Charleston Police Department and the Metro Drug Unit - Chad & Wendy Napier and Marc & Sherry Gilbert drove down to present a check to the fund from the 1st Annual WV Emergency Services Basketball Tournament. Our families had a great time spending the day off together! To CPD - thank you for everything! We have heard of your great sacrifice and commitment to our family. Complete strangers, reaching out to help our family like this... it must be God using good people.

Our local CBS affiliate, WOWK TV13 wrapped up their taping today and should air the story soon. They spent a great deal of time following Ben and our family over the past couple of days. We will try to keep you posted regarding the air date. Deanne and Kenny were kind and compassionate and we are confident they will present a great story.

Many of you have asked about Hanna and her family. Updates regarding her may be found at . Many of you contributed to help send Hanna and her family to Disney next week and we are happy to report that the entire trip has been covered! WOW! This Sunday, she will celebrate her 4th birthday (a little early, it is actually in November). We encourage you to send her Birthday wishes via her Guestbook, or you may mail them to us and we will deliver them to her personally. (See our How to HELP page for the address.) Eli spent time at Hanna's last night playing and they had a great time! Hanna even convinced Tom to dress up as a princess! Pictures to come very soon :) We love this little girl and her family.

Things in our lives have been a little unsteady lately with all that is going on, yet we go to bed tonight convinced of this - God IS steady and loves us very much. We can rest in that. Believing, Tom and Jennifer.

(7/7/04) 9:49 p.m. Good news with Ben's counts - they are on their way up! Hopefully we can stop the G-shots tomorrow. His hemoglobin is still borderline, so he is tired and not quite himself.

Continue to support Hanna and her family - Hanna's situation continues to be a concern. You can link to her website above and learn more. We are still accepting gifts to help pay her way to Disney next week... email us if your are interested. Our hearts are truly broken for her, Tammy and David. I am not sure how to process what is going on with her right now...

Tonight, Nascar legend Richard Petty and #41 driver Casey Mears stopped by Target House for a visit - what a treat! With all that is going on right now it was hard to enjoy. It seems like no matter what you do or who does it, one can not escape reality. Still we believe. We believe for Hanna and we believe for Ben.

Tomorrow is a busy day - physical therapy, occupational therapy, bloodwork, clinic and chemotherapy. Our local CBS affiliate, WOWK TV will be with us to cover Ben's story for the news. We understand they may do a live remote from St. Jude tomorrow evening. We look forward to sharing our story - it gives us something positive to work on and allows more people to follow big Ben's life. Believing, Tom and Jennifer.

(7/5/04) 6:58 p.m. Ben's counts remain low... so we lay low:) He maintains his smiling spirit and managed to charm Ashley Simpson (TV star from Seventh Heaven and now a pop singer who has a show on MTV. Her sister is singer/actor Jessica Simpson.) She was in Target House tonight singing for the kids and hanging out. This place was a busy with press and VIP's!

Last nights fireworks were great. Everyone had a great time - the Shelby County Sheriff and his deputies rolled out the red carpet - you would have thought we were with the President! Our friends at FedEx coordinated the entire trip - BIG thanks Judy Hooks and her team.

Tomorrow, it is back to business with bloodwork, physical therapy and occupational therapy. Because his counts are so low, he feels pretty rough - so the schedule will be more demanding on him.

GREAT NEWS! Some kind people have answered our appeal to help Hanna and her family get to Orlando next week. They provided 3 roundtrip airplane tickets for Hanna's family! (THANK YOU to the Vernick family!) If you would like to help out with the Disney tickets or hotel expense, let us know. This family stepped up for us when we first came to St. Jude and we want to show them our love and appreciation during this difficult time. Please remember to visit Hanna's website and sign her Guestbook - it means a lot.

It has been a good day. Believing, Tom and Jennifer.

(7/4/04) 10:50 a.m. Just in from the hospital... his counts are low all the way around. His ANC (ability to fight infection) is critical at 100 and falling. Ben's hemoglobin is 7.9 and falling, so he will have to be given a blood transfusion (no later than Monday morning). Low hemoglobin causes him to become very tired and pale due to the inability for his blood to carry much needed oxygen. His platelets were 63K and falling, so he will probably have a platelet transfusion by midweek. Low platelets prevent his blood from clotting, so he can bleed very easily. Simple tasks like brushing teeth have to be suspended in order to prevent bleeding.

All said, Ben was the life of the medicine room, bringing a smile to everyones face. Certainly, there is something special about this little boy!

Tom is coordinating (with FedEx) tonights Target House trip to the fireworks show. Eli can't wait to watch the "popping colors"! Jennifer and Ben will have to stay back due to his counts and watch some favorite Disney movies together. About 80-90 of our Target House friends are going to celebrate Independence Day together - pray for a fun and safe time.

We will keep you posted... Believing, Tom and Jennifer.

PS - We are still looking for some help getting flights for Hanna and her mommy and daddy to Disney next week. Two kind college girls attempted to donate vouchers totaling $600, but a very recent policy change at Northwest Airlines won't allow them to donate the vouchers.

(7/3/04) 10:02 p.m. Felt impressed to thank you for continuing to support our family and pray for us. When people see fit to stop by more than 33,000 times in a couple of months, you realize that MANY are believing with us. I am confident that God's purpose to bring glory to Himself is just beginning to reveal, and there is much more to come.

I still wish it wasn't with my little boy. Even though, God is good and each of you are His obvious demonstrations. Ben is not feeling well right now and is looking pretty sick - I am off to spend some quiet time with him. Tomorrow is a new day...

We believe, Tom and Jennifer.

(7/3/04) 5:06 p.m. We have enjoyed a relatively free and easy day. We are staying in because of Ben's counts and because he hasn't felt well for a few days. His hemoglobin was low on Friday, which explains this. Most likely, Ben will have a blood transfusion in the next day or two.

Please remember our friend Hanna and her family. Every day, Hanna seems to present new and disturbing symptoms. This is heart wrenching to watch. Hanna's parents are looking into options for Hanna, so please pray for them. Be sure to visit their website to show them you care.

Sunday morning, Ben will have bloodwork so that they can closely monitor his counts. We will update you as soon as we have the results. Please pray for our spirits... it has been a difficult time around here and we are tired. We trust God to provide strength but at times we wonder when it's coming. Still, we believe. Tom and Jennifer.

(7/1/04) 10:07 p.m. Another mixed bag today... Ben did relatively well with chemo and physical therapy and maintains his smiling face and strong spirit. We are happy to see him doing well with this, yet are reminded that looks are very deceiving.

Our hearts remain heavy and at times scared of what is ahead. The pain of this journey is never ending, constantly in the moment and seems to trump every high point. However, we remain focused and ever-ready to do what it takes to fight. Our faith is in God and His ability to grant us a balance that this flesh can not find. Our belief is that He knows Ben and his needs and will heal him one way or the other. We maintain that God's purpose in this is to bring glory to Himself. Our hope is that He completely heals Ben of this disease so that many will say "Great is the Lord". Please pray for us to understand these words and find rest in them.

Hanna's parents have updated her website with details of her latest MRI. The news is very disturbing. Presently, Hanna is demonstrating some physical problems resulting from a rapid regrowth of the tumor. Specific prayer requests can be found on her website - we encourage you to visit and sign her guestbook. (Even if you just sign your name to show support.) Visit . Eli has expressed concerns about his good buddy Hanna. Children have such a unique way of handling these things - and we would be remissed to ignore his feelings too.

Our hearts are very heavy for Tammy and David - please pray that we step up for them in the ways that they need it. We are going to help them research options for Hanna and see if there is any other medicines, etc. that may help. Time is very precious, please pray that we make productive use of it.

Tomorrow, Ben will have his counts checked (we expect they will be low). St. Jude is coming to the Target House to take some pictures of our family for a magazine and a national fundraising campaign - afterwards we have the day off (except for the G-shots and routine line maintenance.) More to come...

Believing, Tom and Jennifer.

(6/30/04) 6:01 p.m. We all really need to support Hanna and her family right now. Thank you, Tom and Jennifer. (

(6/30/04) 2:22 p.m. Ben had a great morning - did exceptionally well. His counts are still safe... which is expected. Most likely they will fall Friday. One interesting thing... we have asked you to pray for Ben's GCSF shots (very painful and hard to give each evening). For the past two evenings, Ben's composure has changed drastically for the better. We thank God for his kindness and you for your prayers!

Today, Hanna's family learned the results from the MRI conducted yesterday morning. The news is very troubling. In a couple of hours, we are going back to the hospital to be with Hanna and her mommy (Tammy). The doctors are meeting at 3:30 p.m. CDT to discuss the options for Tammy and David to consider. We really need to rally around Hanna and her family during this time. They face very difficult decisions that demand a quick repsonse. Our heart breaks for them. We will post more information after they update their website.

David and Tammy, we believe WITH you. Tom and Jennifer.

(6/29/04) 10:35 p.m. Our hearts are heavy for two very good friends tonight. Hanna has been experiencing some sudden unexplained issues that have caused great concern. Today, the doctors conducted an MRI to identify the problem. Wednesday, David and Tammy will learn the results of this MRI. Please pray for them now and throughout the day Wednesday.

Also, Taylor's parents, John and Angi are facing some very hard decisions right now. Taylor is fighting the same cancer as Ben and is about 10 weeks ahead of him in treatment. Her latest MRI showed the tumor is growing. They have been presented some very difficult options and need our prayers.

Both girls Guestbooks are listed above. Please take a moment to encourage these families. The Guestbook entries make a profound impact on the families facing this terrible disease. Even if you are not sure what to say, simply signing your name is appropriate. Thank you. Tom and Jennifer.

(6/29/04) 3:17 p.m. Sorry for the break in updates... Tom went out of town for a day and Jennifer had her hands full :) A big thanks to Tom's parents for helping out this past week - made the week easier to handle!

All is well here, Ben is holding strong except for his appetite. It has dropped off (again) condsiderably. He seems to have a thing for Heinz Ketchup - one of the only things he will devour. (He could do a commercial for them and be set for life!) Tomorrow he has a very full day, labwork, clinic and a psychological evaluation (sounds strange, doesn't it?). We will probably see his counts falling - will be the lowest this weekend. Please pray for his protection during this critical time. As for the G shots, he did very well last night. Many of you were praying for this. He will continue the G shots for a while - until his counts hit 2000 for two consecutive days.

Eli is doing great! Between balancing our time with him and the fun activities that many of you have sent him, he is enjoying his time here. St. Jude does a wonderful job including siblings in the "program" so that Eli is a part of Ben's fight. We are very proud of him. The other day, he spontaniously asked to pray for his little brother. Out of the mouth of babes.

We want to thank Chad Napier and his team at the Charleston Police Department for working so hard on the WV Emergency Services Basketball Tournament. They raised more than $14,000 for Ben's fund - a much needed help right now. This tournament will be an annual event to help people in similar circumstances as us. Inspired by Big Ben. We have never met Chad - and yet he spent many hours putting together an outstanding event to help complete strangers. We can not appropriately express our gratitude for his kindness. Next week, Chad and his partner will come to St. Jude to visit Ben and our family. Can't wait!

Please remember our friends at St. Jude in your prayers. We have a page with links to many of them... go to the OUR FRIENDS page when you have a moment. Especially remember Hanna and Taylor and their families right now. They are facing some difficult things. Their links may be found above.

Believing for Ben and our friends, Tom and Jennifer.

PS - Ben just walked past me - clear across the apartment to find his mommy! WOW!!!

(6/27/04) 11:16 p.m. Ben is out of the hospital! His spirit is still up - though he was hit hard with chemotherapy this weekend. This week will remain steady - chemo, clinics and thearpies. He began the GCSF shots tonight (yuck) and will continue to until his counts return to 2000 for two consecutive days. His counts are expected to bottom out this coming Friday. Please pray for his protection from infection during this time. A simple infection can be deadly very quickly.

Tom will leave town Monday and return Tuesday, so Jennifer and Tom's mom will running things. Pray for them - the GCSF shots are challenging to give. (The medicine in this $1000 shot burns them when it enters the body and causes a lot of pain. It is very difficult to give a 19 month old.)

A note of thanks to Tom's parents - Janet and Harry. They spent the week here with us helping out in a BIG way while we went through testing and inpatient chemo. Harry returned yesterday and Janet will return Tuesday. Thanks!!!

We received a box of patriotic goodies and toys for Ben and Eli yesterday from some friends in NJ. To the Picerno boys and their friends at the Church of St. Catharine - THANKS! Your daddy would be - make that IS - proud of you guys!

We are looking for a web developer to help us with bens-story. If you have suggestions, please email us at .

Finally, off to bed... it is so nice to have everyone under one roof again. Thank you Lord for keeping Ben safe. We believe you. Tom and Jennifer.

(6/27/04) 8:37 a.m. NOTE: The webservice was down from late Friday night unitl this morning... the guestbook and update pages were down. Sorry!

We hope that Ben will be released from inpatient status today. He is doing remarkably well with this phase of chemo. The combination of chemo drugs he is on is dangerous and makes him very sick. He still smiles (and charms the nurses)! We will post more later tonight.

Two special friends we want to bring to your attention, Hanna and Taylor (and their families) are facing some challenging issues right now. Hanna is suddenly demonstrating some very concerning side effects. They are doing an "rush" MRI this Tuesday to see what may be causing this. Taylor's second MRI did not present good news. (She has the same cancer as Ben and was given great news after the first MRI.) Please visit their websites and pass along much needed encouragement to these families. (Their website links are listed above.) You all have been great to hold up our friends here at St. Jude and you can not imagine the incredible support you have been to each of them - and us.

Believing, Tom and Jennifer.

(6/25/04) 11:05 a.m. I know a HERO. Ben is inpatient right now receiving several chemotherapies. In a matter of hours he goes from looking like "normal Ben" to looking very gray and sick with dark circles under his eyes. He violently dry-heaved several times yesterday evening yet managed to always look up with a smile! Right now he is under anethesia while they give intrathecal (via his spine) chemotherapy. When he goes back to his room he will resume the other "big chemo" drugs and medications.

The next few days will be pretty hard on Big Ben, so remember him often. We will keep you posted regarding his progress. He should be discharged Sunday or Monday and will start the outpatient chemo, treatments and therapies again.

It seems like everyday is full of its challenges and uncertainties, yet two things don't ever change. God's love (that's why He's our God:) and Ben's smile (that's why he's my HERO:)

Believing, Tom. (PS - Jennifer is with Ben right now at the hospital for her "shift". Remember her too!)

(6/24/04) 1:58 p.m. Quick update... Ben was admitted to the hospital today (as scheduled) for the first phase of round two. This is the "big chemo" and requires inpatient care because of the risks.

Pray for him.


(6/23/04) 8:53 p.m. We want to pass along our thanks to all for their continued support. We have heard from many of you and know many are praying for Big Ben and our family.

Though the tumor did not shrink - we are VERY encouraged that it did not grow. Yes, we hoped for it to be reduced, but this was not likely. God is still good. He has a plan for Big Bens life that remains unchanged. Bottom line, we are thankful - make that VERY thankful for today's results. We are heading into round two running full steam and look forward what lies ahead.

We keep asking God for help and direction - let's take time to thank him for His careful watch over this little boy and his family. Tom and Jennifer.

(6/23/04) 2:24 p.m. MRI report in - holding steady... Ben's MRI report came back - we have mixed emotions. First, the tumor is still there and may have grown slightly. We learned that the residual tumor is actually bigger than we thought after the last surgery. Instead of "match stick head size" it was 5mm in diameter. Today, the report shows it is 7mm in diameter. The doctors say that this is negligible. The doctors emphasized that this cancer is the most agressive type and no significant growth is a good thing. We are waiting for the results from the lumbar tap to see if his spinal fluid is clear of cancer cells. We are happy to report that Ben's hearing remains unaffected by the chemotherapy drugs. A big thanks to Dr. Fouladi, Jennifer Havens and the entire team. We know you are fighting as hard as we are.

What's next? Ben will begin round two of his treatment protocol tomorrow. He will be admitted into the hospital for the first phase. This round lasts 10 weeks and will conclude with another series of scans and tests. Often the tumor grows during this period (something to pray about). If it remains unchanged, we may have surgery or go directly into radiation treatment. (The radiation phase is 6 weeks, 5 days a week. He is under general anethesia every day for this.) If the tumor has grown they may suggest surgery and/or high dose chemotheapy. This is very dangerous and we hope to avoid this method of treatment. High dose chemo is done inpatient, and kills everything inside in an effort to eliminate any cancer present. They have to rescue Ben with his own stem cells, harvested at an earlier time.

For now, we must focus on the upcoming round of treatment. It will be very challenging for Ben as the chemo meds are cumulative. Let's pray for his strength as we approach this weekends difficult chemotherapy.

I feel that some kind of collaborative prayer strategy should be implemented. We may implement a flash email list for urgent needs and developments. Maybe churches or groups can start a prayer campaign that is interactive and engaging. We welcome ideas and support regarding this matter - please email your thoughts to us at .

We are grateful for the kind words of encouragement. Jennifer commented this morning on how every time she walked by the computer someone new had posted in the Guestbook. This is great! Thank you all. We continue to believe God because He is Who He says He is. Tom and Jennifer.

(6/22/04) 9:58 p.m. We will not hear about Ben's MRI results until 11:30 Wednesday.

Please pray for Ben's (Wednesday) morning - he will be under sedation to conduct an Auditory Brainstem Response procedure. Afterwards (still under anethesia), they will do a lumbar tap to gather spinal fluid to test for cancer cells. This all begins at 8:15 AM CDT and will conclude around 11:30 AM CDT. At 11:30 we meet our doctors to discuss Ben's MRI and other test results. We will keep you posted. We are particuliarly thankful for the kind Guestbook entries encouraging us during this stressful time.

We connected with Karley's mommy tonight - they really miss their little girl. They passed along their gratitude for the incredible kindness of many of you who sent notes of encouragement and financial gifts. You can not fully understand the impact you all have made on them (and us) through this difficult time. Thank you. Tom and Jennifer.

(6/22/04) 1:56 p.m. Ben handled the anethesia very well - and is out of recovery now. We are waiting for the results. We may know this afternoon - if not Wednesday morning for sure.

We wanted to take a minute and ask you to pray for some very new friends. We met them in the waiting room for MRI a few hours ago. They have a beautiful 5 year old girl (Claire) that was diagnosed with a difficult brain tumor 4 days ago. They drove to St. Jude yesterday and are now making the first rounds at St. Jude. I can not express the pain they are experiencing in this moment - it is not important. What is important is that we pray for them. Pray for wisdom and discernment as they face many tough decisions. Pray for encouragement and a team of supporters to rally around them here and at home. Finally, pray for Claire's healing.

I was moved by a Guestbook entry from some new friends (met at an airport recently). It reads:

name: Tom & Nancy
Home Page:
City: Dickinson
State: TX
comments: Tom & Jennifer: There's a special prayer this morning for you and Big Ben. Remember that the name of Jesus is above the name of cancer. When the lame man was healed, Peter did not annoint him with oil, and he did not pray for him. He simply told him to rise up and walk in the name of Jesus. What a powerful name - the same today and then. Agreeing with you T&N.
time: 2004-06-22 05:36:07

We will keep you posted as we get more information. Believing, Tom and Jennifer.

(6/21/04) UPDATE - We just found out that Tom's parents flight was canceled due to weather. They will not be able to make it in time for the busy day ahead. Please pray things will go smoothly tomorrow for the Bowen family.

(6/21/04) 3:18 p.m. URGENT PRAYER NEEDED... Ben and his big brother are taking a nap together right now. Jennifer and I want to pass along some details about this weeks schedule.

Once every 10 weeks, our doctors evaluate Ben's progress on several fronts. It is a week of testing - to see how the cancer is responding and how his body is taking the chemothearapies. The "big test" is the MRI - an involved picture of his brain and spine to see how his cancer is responding.

Several potential outcomes depend on the results. One would be to continue the protocol, as scheduled. If this is the case, we will begin round two (inpatient) this Friday. Another option may be to have another surgery to remove more tumor. (Ben has undergone 3 brain surgeries to date - and a "match stick head" size piece of tumor remains.) It is critical that the tumor be comletely removed - either with chemotherapy, radiation or surgery. We are asking God to remove this piece of tumor and eliminate the cancer cells in his brain.

If the cancer is not responding to treatment and chemotherapy is not working, we are faced with a very difficult decision. Regardless, we will have very little time to decide which course of action to take - so please pray for wisdom as we tackle these next few days. Additionally, please pray that the radiologists, oncologists and staff are given clarity and focus when reading Ben's scans.

This Tuesday, Ben's schedule is:

No food after midnight (until recovery from sedation.)

8:00 Occupational Therapy

8:30 Physical Therapy

9:00 Sedation Prep/Physical

9:30 MRI (1 1/2 to 2 hours)

11:30 Recovery

1:00 Assessment and Triage/Labwork

We may have the results sometime late afternoon. If not, we will know Wednesday morning. We will advise as soon as we know something.

We are fortunate to have Tom's parents here this week to help out with Eli and provide moral support. Many kind friends from Memphis have stepped up to provide support as well. Several churches around the country have taken it upon themselves to stay in close touch with us and are praying for this time. Matched with the prayer support of thousands of good people, Heaven will wonder what is going on in Memphis this Tuesday.

Remember our dear friend, Hanna and her family. She is having some complications and needs our prayers and encouragement. A link to her site is listed above.

A final word: Make no mistake, we are anxious about the next 48 hours. Our hearts ache for some good news. Still, we have great peace and remain steady. This comes from believing and resting in God's promises. Tom and Jennifer.


(6/19/04) 10:59 p.m. Father's Day... the first of its kind for me. Many thoughts run through my mind... many too difficult to express. However, I feel compelled to share with you a recent experience.

A few weeks ago, the camera crew filming Ben for the Marlo Thomas/St. Jude Special captured a unique exchange. We were at the zoo celebrating good news after a difficult week. After we finished looking at Ben's favorite animal, the elephant, Jennifer, Ben and Eli walked ahead while I wrapped up a few pictures for the scrapbook.

As I caught up to them, Ben spontaniously reached out to me, grabbed my hand and after a brief blink or two, looked up to me. (Because of the tumor, Ben can not use his eyes to look up, he is learning to raise his head, then refocus his eyes.) This action, in and of itself is not profound - yet the exchange between my little Ben and I was. It was trust, belief, joy, kindness - and so much more wrapped up into one.

Shortly after this happened, the producer of the TV show mentioned that he caught this entire moment on film. Something that happened in a split second, with no planning, no announcement - something that just happened.

He commented on how simple, yet moving the whole thing was and asked me how it made me feel. Honestly, I was so caught up in recalling the moment that I must have froze. "How would it make you feel?" I thought. Being a father himself, the tears in his eyes let me know that he "got it".

Looking back, another insight comes to mind -- that some things never change. No matter how difficult the circumstances and challenging the situation may be, that Ben and Eli are my boys and I am their daddy. This is as true today as it was when they came into this world. It is easy to lose sight of these truths when things get out of whack... yet God is gracious enough to allow me such "intimate moments" and kind reminders.

My heart is heavy this Father's Day. I need not explain. Yet, regardless of how I feel, I am still daddy. There is nothing like it and I wouldn't trade places with any man in the world. To Eli and Ben - I love you boys. I am the luckiest dad in the world.

I continue to believe. Tom.

(6/18/04) 10:36 p.m. We are back in the Target House tonight and gearing up for a big week. Our apologies for the lack of updates this past week - our access to internet was limited. Last week, we had a GREAT time seeing old and new friends, getting to relax in our home and visiting family. Ben was his typical self, amazing everyone he encountered with his charisma and strength! Thank God for His grace.

We are very tired from a long drive - so more info will follow tomorrow. Next week is a BIG WEEK for Ben and our family - we will outline the schedule very soon. The week after, he goes inpatient and starts round two of his chemotherapy treament. A lot unfolding really fast, so keep checking in.

The Guestbook entries have been one of the greatest gifts we have received. Thanks to all for taking the time. We can't wait to share them with Ben when he is older - so he can see that the world stood with him in prayer and encouragement. More to come... Tom and Jennifer.

(6/12/04) 7:40 p.m. EASTERN TIME! We are home! We arrived late last night - safe and sound. This morning, Ben and Eli were thrilled to see their old "stomping ground" again. It was better than Christmas morning!

Ben handled his intrathecal chemotherapy (via the ommaya on his head) Friday morning relatively well. He did become very sick, and seemed to feel pretty rough all day - but kept his smile on and chin up. We continue to be very proud of his determination.

This morning, Ben walked! Being home has therapeutic implications of all sorts. Seeing his toys and a familiar place motivated him to walk (some) without assistance. This is HUGE! The local TV station (WOWK TV13) stopped by and caught some of Ben's first moments - including his miraculous walk - on tape - should be on the news at 11 PM tonight.

Tomorrow, we will get to go to church and celebrate the great things God is doing in Ben's life. If you can't be there with us, take a moment Sunday morning (wherever you are) to thank God for His goodness to Big Ben and our family. Afterwards, around 2 p.m. we will visit with many of our friends and family at the Manns' Farm - we can't wait!

Tonight, Ben will go through the routine, oral chemo, line flushings, etc. A reminder that cancer never takes a break and neither can we. It is for this reason we continue to believe God and His promises... Tom and Jennifer.

(6/10/04) 9:57 p.m. Thank you all for supporting Karley and her family over the past few days... it has been a great encouragement to them (and us). Please continue to support them through this difficult time.

It has been an emotionally draining couple of days. The harsh realization of this disease is sobering. We come home this week with excitement and a heavy heart. On one hand, we can't wait to see home, family and friends - on the other hand, we know that in a week or two we start a very demanding schedule of treatment and it will be more challenging on Big Ben. He is facing very difficult times ahead.

We look forward to reenergizing some - preparing for the next phase in this journey. Please pray for our family during this important time.

Sunday, we will be able to visit our home church and share an update with the people there. Our pastor and I have discussed a special time during the service for Ben and the children at River Cities Community Church. This should be a very special time. Sunday afternoon, the Manns family is hosting a community get together - great time for us to see many friends - new and old. Hope to see you there!

Updates will continue from home - so please keep checking in... speaking of updates, Ben has been strong and determined the past two days. This morning, he had physical and occupational therapy and was incredibly brave - really giving effort and pushing himself. The therapists were amazed! Today, one nurse took a moment to share an encouraging word that all of you should share in - she said that in all of her years of being an oncology nurse, she has never met a child like Ben. A "real warrior".

We thank you for your prayers - obviously God is responding and giving this little boy great favor. We give praise to God for answering those prayers! Believing, Tom and Jennifer. (See you soon!)

(6/8/04) 7:18 p.m. URGENT PRAYER NEED Today, our friend Karley passed away after a brave fight with ATRT (Rhabdoid ) cancer. A month ago, her mommy and daddy were enjoying her life as usual. A reminder to us all that life is precious.

Not sure what else to say right now, other than our heart aches for Wendy and Mike.

Please make time to support and love them through their website. The web address is . They will appreciate your kind words of encouragement at this time. Even if you don't know what to say, sign your name in their guestbook - it will mean a lot to them.

I have so many thoughts at this time - I will gather them and write them soon. It is hard to understand these things. I know that God is not wringing his hands this evening worrying about these things - He is in control. Not to mention, His hands are full loving on little Karley tonight.

Believing when we don't feel like it - Tom and Jennifer.

(6/7/04) 8:03 p.m. Thanks to everyone for supporting Karley and her family. Karley is responding, however is still in a delicate situation. Please continue to support her and her family by praying, visiting and signing their guestbook.

Today was a simple day for Ben. (This is good.) Other than the oral chemotherapy, he had the day off. Tonight, college students from around the U.S. that participated in the "Up Till Dawn" fundraiser for St. Jude stopped by Target House for dinner. Ben was his charming self - a wonderful example to these students of why they help St. Jude, yet very sobering because they know his prognosis is very challenging. Lots of smiles and laughs with very few dry eyes. This is the way things are at St. Jude.

Tomorrow, Ben will have occupational therapy and chemo. Continue to pray for Ben's counts. We will have them checked Wednesday. If all is well, we will get to visit home for a few days next week.

Our family continues to receive such great encouragement from your guestbook postings. Feeling connected to the outside world is priceless. Believing, Tom and Jennifer.

(6/6/04) 10:49 a.m. Our friend, Karley (from Maine) had an emergency surgery Saturday. Karley has been diagnosed with the same rare brain tumor that Ben has. (She is new to this journey.) We know of these "bumps" in the road and feel strongly about supporting them as they encounter this one. Please, take a moment and visit Karley's website at and sign their Guestbook with words of encoragement. Wendy and Mike are her parents (they have been incredibly strong) and Ryan is their 3 year old son. Let's rally around them and show them we care.

Ben is feeling much better, however his diet is still poor. Though he does not eat much, he miraculously maintains his weight. Next week is therapy, chemo and clinic visits. If his counts stay steady we will be able to come home for a few days beginning next Saturday. If not, we will have to wait until September. Regardless, we look forward to a break as a family - our first since we started treatment.

Believe for Ben, believe for Karley. Tom and Jennifer.

(6/04/04) 9:57 p.m. Though the day went well, Ben is having some significant pain from the procedure today. He still smiles and loves on us a lot! Please pray for this matter.

(6/4/04) 3:19 p.m. GREAT NEWS! After much prayer for Ben's counts, he beat the odds and they went up! He is not out of the woods (they are 1000 currently), but they are high enough that he can continue to have the VP-16 (oral chemo). They expected his counts to fall below the critical mark today so the VP-16 would have to be discontinued.

The doctors and staff were surprised and happy to report this good news. Interestingly, the entire day was captured on film as the camera crew was in town and following Ben around (this is for the Marlo Thomas Telethon that will be aired nationwide). It will be nice to see this miracle unfold on video - a permanent reminder of Who is really in control.

Ben did have his intrathecal chemotherapy today via the spine. He was under anethesia and had to be intubated to help him maintain his airway. He handled it well and after a brief recovery, took a short trip to the Memphis Zoo! The camera crew followed along, documenting for the world just how brave Big Ben really is. Make no mistake, we believe his bravery and strength is beyond him and is evidence of God's grace.

Thanks to everyone who answered the call to pray for Ben's challenging circumstance this week. God answered our prayers! Next count check is next Tuesday - so continue to pray for Ben's protection from infection and that they remain at a safe level for his medicine.

We believe (with a BIG smile today), Tom and Jennifer.

(6/2/04) 12:02 p.m. Received disappointing news this morning. The oral chemotherapy (VP-16) is causing Ben's counts to drop too low - so they may have to stop that particuliar medicine this week. If they stop it, they will not restart it, so we will lose that medicine all together. Currently, Ben's counts have fallen from 2300 a few days ago to 600 today (500 is when they discontinue the oral chemo).

This also means we can not come home as we had hoped. Low counts make him very vulnerable and we must stay isolated from the public. This is very disappointing. Regardless, stopping the VP-16 is most troubling because he is missing out on important chemotherapy.

SPECIAL PRAYER NEED FOR BEN - Please pray for (and ask many to do the same) Ben's counts. We want him to be safe from infection and be able to take the important chemo. We know this "hiccup" in plans has not startled God. Pray that we rest in that.

Believing God's promises, Tom and Jennifer.

UPDATE - The Bowen family will travel home for a few days, beginning this Saturday if Ben's counts are at a safe level. More information to come...

(6/1/04) 10:57 p.m. Nice day here in Memphis... Ben continues to be strong. Though the oral chemotherapy addition is challenging - Ben is Ben. He smiles at everyone and enjoys life. As you pray for Ben, remember his appetite. Today, his diet consisted of ketchup - and a few bites of chicken.

We did have fun - went to dinner with the Sartins, rode the trolly, watched the famous "duck march" at the Peabody Hotel and went on a horse and carriage ride. Nice to enjoy the evening out with some good friends.

We want to say thanks to our Memphis friends - Jan and Randall Carrier - who have consistently encouraged us (thanks for the Memorial Day picnic at Target House!). To Danny and Cathy Sartin - we are so gratetful for our friendship!

The love and support of the community back home (in WV) has been extraordinary. From people we know well to those we have never met, your demonstration of love and support is a blessing to us and all who see this story. One day, Ben will know of your kindness. Thank you.

Tomorrow, Ben will have labs and clinic and a possible chest x-ray (his central line is not functioning correctly and needs to be checked). Keep believing. Tom and Jennifer.

(5/31/04) 9:56 p.m. Ben is starting to get sick from the oral chemo (and probably the cumulative affect of all the other chemotherapy drugs) - and some sores in his mouth have formed. He is uncomfortable and nauseous. Please pray for Big Ben. Believing parents, Tom and Jennifer.

(5/30/04) 8:30 p.m. Ben seems to be doing OK with the new chemo addition - a little sick at times. This chemo is taken orally and has new side effects we must deal with. He will take it daily (along with the usual regimen) for 21 days.

On the NEWS/INFO page we posted a Word document outling Ben's cancer type. We will add a list of the chemotherapy drugs he is on with the side effects so that you are better informed. Once you read these documents, you will see that this is a process that must be dealt with one day at a time. Good days are relative to the whole picture - so please pray for Ben's protection and complete healing.

Remember our good friend, Easton and his family. (See our FRIENDS page.) He is Ben's age (to the exact date!) and such a beautiful child! Pray for he and his mommy, Julie, who is here on her own right now - a challenging thing to face.

Karley, mentioned in yesterday's update, is recovering from the stroke she had. She now has a website, . Updates and a Guestbook can be found there.

Tomorrow is a day off! Our second day off since this journey began. We plan to enjoy our family time - can't wait! When you have a moment, forward Ben's Story to others - the comments and Guestbook entries have become a real encouragement to us during these long days. Hopefully, those who read about Ben will be equally encouraged.

Thanks and always believing - no matter what, Tom and Jennifer.

(5/29/04) 7:53 a.m. URGENT PRAYER NEEDED... Yesterday, a family from Maine contacted us after learning their 19 month old daughter - Karley - was diagnosed with the same cancer as Ben. They were just diagnosed yesterday (Friday). The cancer has not spread and they were able to get all of the tumor out... this gives Karley the best shot at beating this.

This morning, her grandfather contacted us to say that Karley experienced a stroke last night and is need of our prayers. Please pray for Karley, Wendy and Mike (parents). We hope for a speedy recovery so that Karely can begin treatment for her cancer right away. If you want to send a word of encouragement, please email us at We will be happy to forward them on.

Pass this along to your churches, family and friends. After speaking with them yesterday, I know they are very special people!

Let's believe WITH them. Tom and Jennifer.

(5/28/04) 1:16 p.m. Ben's intrathecal procedure was this morning and he was obviously guarded by God's angels. Though the procedure made him sick afterwards, his overall response to this treatment was drastically improved. A friend of ours here at St. Jude said it best - it is evident that "many people were storming the gates of heaven" for Big Ben. Thank you!

He will go in for his first oral chemotherapy dose this evening - and will take this type of chemotherapy for 21 days. Let's pray that his counts remain steady - they can not give him GCSF shots to help him while taking the oral chemo.

Please remember our new friends here that are fighting this terrible disease. We highlighted several of our closest friends here - so visit them and send a word of encouragement.

Over the past couple of days, two families here at Target House have experienced the greatest loss... please pray for them during this difficult time.

We still believe. Tom and Jennifer.

(5/26/04) 2:55 p.m. Today Ben was a little weak - so physical therapy was a challenge for him. But he was on his game in clinic -- cancer, drugs and the like can't rob him of his charm. Everyone loves to see Big Ben come into clinic with his bright eyes and big smile.

His counts are steady... his hemoglobin was lower... we will have to watch this closely. They will move the intrathecal procedure to Friday so that they can coincide it with a new chemo drug that begins at that time. This new chemotherapy will be added to the others and is given orally. So, ask everyone you know to remember Big Ben this Friday morning at 9:30 a.m. CST - he really struggles with this treatment (see below for more on this).

Hopefully, we will enjoy some family time tonight being Jennifer's 20th birthday and all :) Anyway, check back soon and remember Garrett in your prayers - he is having a tough time right now. Believing, Tom.


(5/25/04) 11:35 p.m. Good day. Ben was all smiles. Considering the invasive nature of his brain surgeries, the tumor and the chemotherapy, he was exceptional during occupational therapy today. I am confident that God continues to cover this little boy with his mercies every day. Thank you for praying.

The FedEx/St.Jude Golf Tounament starts this weekend, so many of the PGA players and their wives are in town visiting. Tonight we had dinner with a few of them at the Target House and enjoyed visiting with some new St. Jude friends. Welcome to the Hentz and Molnar families. Let's remember to pray for them and this new journey.

Tomorrow, Ben has physical therapy and a clinic visit - and prepares for the intrathecal chemo via the ommaya reservoir (in his head) this Thursday. The last two times they used this procedure Ben became very ill and hurt badly afterwards. To have to hold him down while they insert a needle into his head is disturbing to say the least. It is a horrible experience for all involved, and we value your prayers. This procedure is scheduled for Thursday at 9 a.m. CST.

Finally, remember our friend Garrett - he is very sick... a high fever that has been difficult to control and sores in his mouth and throat. We spoke to his mom tonight and we sense the pain. He is Eli's age. This has been a tough few weeks for them.

We will keep you posted... believing, Tom and Jennifer.

(5/24/04) 9:28 p.m. Ben had his intrathecal chemotherapy today via his spine. This drug, mafosfamide, is beginning to have a cumulative effect on him. He is in much more pain after procedure and throughout the day. Still, he smiles through the worst of it and keeps his "game face" on. We are so proud of him!

Soon, we will post the known side effects of the different chemotherapy drugs he is on so that you will better know how to pray. These drugs are very harsh on his body - and it is important for us to pray for him during this time.

Remember our friend, Hanna. Her counts have been very low for many weeks now and it is now interfering with her ability to receive chemotherapy. (Not to mention, keeping a 3 year old "isolated" is difficult.) You may want to encourage her and her family at . Thanks.

Tuesday, Ben will have occupational therapy around 10:30 a.m. CST - please remember him during this time. He is very sore from the procedures and the chemo drug from today makes him hurt. Thank you for your continued encouragement - Tom and Jennifer.

(5/22/04) 8:51 p.m. Normal day! We enjoyed the Target House 5 Year Birthday today - carnival atmosphere with many of our friends from St. Jude. Eli really like spending time with his new girl... Hanna:) Cathy Sartin joined us to help with the boys and share in the laughs. Thanks (again) Cathy! We can not express our gratitude enough to Target for making this home away from home possible.

Ben was so much like his old self... lots of laughing and activity. More of God's grace and mercy! Tonight we went to dinner as a family - nice to get out. One of the sobering reminders of the challenge we face seems to follow us where ever we venture... staring and pointing people. Sometimes the looks are compassionate, but often they are simply rude. To be honest, it is unbelievable. (Ben's scares and bald head draws attention.) Fortunately, he is too young to realize this, but we wonder what it will be like when he is older. So many kids must experience the same thing... something (we shouldn't have to) pray about. God protect these precious little ones. They have enough to deal with.

Tomorrow, we will rest some and enjoy most of the day. We will take Ben to the hospital to start fluids and prepare for the upcoming week of chemo and therapy sessions. Please pray for continued strength for us and the other families that are walking with us - this is no sprint, it is a marathon for life.

Mike Emerson called me from the cancer walk at HHS back home ... our sincerest thanks to all who took part. Cancer research and treatment has a long way to go - and we ALL must fight hard. God bless each of you! Tom, Jennifer, Eli and Ben.

(5/21/04) 11:55 p.m. All went better than expected today... Ben received his chemotherapy well and was a superstar in physical therapy! He stood for 4 minutes and even took a few unassisted steps! This is truly remarkable. See above pictures of his accomplishments today.

Tom spent a few hours helping the Target House staff clean and prepare for the 5 year anniversary celebration of Target House. This BIG party will be held tomorrow (Saturday) and should be a lot of fun for everyone. Thank you Target for providing a wonderful place for our entire family to stay.

Our good friend, Cathy Sartin watched the boys tonight so that we could go out to dinner and celebrate our 9 year anniversary. Thanks Cathy! We really enjoyed our time.

This weekend should be relatively easy - time to rest and prepare for another week of hard work.

Pray for good rest and recovery. Ben is beginning to experience the cumulative effects of the chemotherapy treatments they are giving him. Thank you all for continued prayer and encouragement... and most of all for believing with us. Tom and Jennifer.

(5/20/04) 11:30 p.m. Long day... Ben's chemotherapy did not go so well. The procedure involves inserting a small needle into his head in order to administer chemo to the site of the tumor. (This is one of the unique treatment methods at St. Judes.) Ben was very uncomfortable during the procedure. A combination of pain and the medicine itself caused vomiting and an obvious headache.

Ben being the courageous one, snapped back within the hour (absolutely amazing to all that were in the room with him) and was smiling at everyone he came in contact with. Several people even commented on how he looked like he was having a great day... hard to believe after the morning he had. Thank you to everyone for praying for him this morning... God gave him the grace for the moment.

Tomorrow (Friday), Ben faces another challenging day... bloodwork, clinic, therapies and chemotherapy. Remember Ben throughout the day - and pray for his strength. Also, I feel compelled to ask each of you to pray for our friends here at St. Jude. So many brave kids (and families) with incredible stories. God has a plan for each of them. God has a plan for each of us!

Finally, Jennifer and I celebrated 9 years of marriage today. I want to thank each of you who continually encourage us in our marriage and pray for us. God is using this time in our life to build us individually and as a family. Please continue to pray for us through this challenging time. (For those wondering, tonight, Jennifer and I played with Eli and Ben on the playground at Target House (who needs a fancy dinner when you have your family together?) One of the TH staff came out and serenaded us for our anniversary. Damon... Thanks! (You better stick to your day job though:)

Keep believing. Tom and Jennifer.

Happy Anniversary Tom and Jennifer! May 20th - 9 Years!

(5/19/04) 11:09 p.m. Pretty good day today. Ben masked up (see above picture) and we went to a carnival at St. Jude sponsored by Target. Lots of fun, music and goodies for the kids. Afterwards, it was back to business. His counts are on the rise - ANC is 1600, yeah! If he maintains 2000 or higher for the next two days we get to hold off on the GCSF shots for a while.

Clinic and therapy as usual - Ben was strong and determined. Camera crews for the Marlo Thomas TV Special followed him around. (They have asked to follow Ben's Story to hightlight on the TV special aired nationally.) We also learned that our interview for the "Country Cares" Radio Campaign will be released nationwide. Back home, it will be on WTCR during the Country Cares Radio Telethon for St. Jude. We are excited about this - a tangible way to help a place that helps so many.

Tomorrow, Ben receives chemotherapy intrathecally - this time via the port on his head. Last week, this made him very ill - vomiting 5 times right after the procedure. Additionally, he seems to get a bad headache from this medicine. Please remember Ben through this time - about 10:30 a.m. CST. We will keep you posted. Believing, Tom and Jennifer.

(5/18/04) 12:35 p.m. Bloodwork is back... ANC is still 0, platelets are 27K, spirits are high. Ben will need a platelet transfusion today - should be late this afternoon. His hemoglobin is low as well, not at transfusion level - hope to keep it that way. Please pray.

(5/18/04) 11:12 a.m. Jennifer took Ben in to get counts checked - they are especially watching his platelets... he made need a platelet transfusion today. He will see the occupational therapist this morning as well. His back remains very tender from the spinal taps and his legs are sore from the daily GCSF injections we give him at "home". It is hard (as mommy and daddy) to give him this injection because it causes him such pain.

Please remember Ben in your prayers today - especially his counts and pain. He is strong, but still human, and there is only so much one can tolerate.

Eli is well - very tolerant of being isolated from the outside. Remember him in your prayers too! He is the unsung hero. Special thanks to Annie Black back home - you ARE a survivor and an encouragement to us. Thanks for helping Ben and Eli out during this time! Annie is an example of what belief accomplishes. Believing, Tom.

(5/17/04) 2:23 p.m. This mornings chemo went great. The added fluids IV seem to really help him give the spinal fluid they need. They were able to give him the full dose of chemotherapy. We have noticed that his back is very sore from repeated taps in the same place. He has recieved 30+ spinal taps (large needle that is inserted directly into his lower spine) over the past couple of months. They have a small area in which they can do this, so it becomes tender.

His counts remain critical - ANC is 0. The blood transfusion improved his hemoglobin counts, however he may need a platelet transfusion soon. We will keep you posted. Continue to pray for his protection duing this time.

He continues to amaze the staff at St. Jude (and us, of course!). Always smiling - no matter what. We all should be very proud of him. He is one brave young man.

(5/16/04) 7:23 p.m. Ben's counts dropped today - His ANC (protects him from protection) is 0. He will continue the nightly GCSF shots until this improves. His hemoglobin was 6.8, so he had a blood transfusion this afternoon. Additionally, he was connected to a pump that pushes fluids into his body so that he is prepared for the spinal tap/chemotherapy Monday morning.

Ben will receive chemo intrathecally (the chemo goes directly into his spine and brain) Monday morning. He will be NPO (no food) for 12 hours prior to the procedure. Since they will be tapping into his spine, he will be under anesthesia. This is a weekly routine, and I am sure he is more used to it than we are. Kids are good about that! Believing, Tom and Jennifer.

(5/15/04) 11:10 p.m. Ben is doing better taking food/drink today. He is very pale - most likely due to low hemoglobin counts. Sunday (tomorrow) he will most likely require a blood transfusion to boost those counts. He continues to take the GCSF shots to help him recover from low ANC (white blood cell) counts. (It is a little unnerving having 1 week + of those shots in the refrigerator at $1000 each!)

We expect his ANC to be very low the next few days - please pray that he "stay safe" during this time. We are taking every precaution to protect him from infection, etc.

Ben will receive fluids Sunday evening (they connect him to a small pump and bag in a backpack that pushes fluids into his body). This will help him prepare for the chemo treatment Monday morning. (They will inject this treatment into his spine under anethesia. He has to give them as much spinal fluid as they give him chemo medicine. The fluids help him stay hydrated enough to do this.)

More to come... believing... Tom and Jennifer.

(5/14/04) Prayer needed... Ben is not doing well this morning. They had a hard time placing the needle in his head to give chemo - caused Ben a lot of pain. He has vomited 5 times. Hemogolbin counts dropped more - will need blood transfusion, probably Sunday. His ANC (white blood cells that fight infection) counts have dropped considerably - will probably be lowest this weekend as expected. Let's pray for Ben and pass the word. UPDATE - Ben is feeling better this afternoon, and is holding down food/drink. Keep praying!

(5/14/04) 7:52 a.m. Busy/tough day ahead. Ben receives two chemotherapy treatments today, has labwork, clinic and occupational therapy. Counts are on their way down... should bottom out around Sunday. Let's pray that he is protected during this time - no infections. His other counts remain OK - hemoglobin is borderline though. The shots we give him every night have started to really bother him. We understand that the injection is not as bad as the medicine. It burns quite a bit when it enters his body. He is very tolerant, but in obvious pain.

Last night, some new friends from Memphis took us took us to dinner... and Ben ate some mashed potatos! Not much, but it WAS food. The company was welcomed, nice to talk with some friends and get out... Randall and Jan - thanks! Now we go back to isolation so that Ben is not exposed to infection, etc. Isolation isn't so bad - we get to enjoy one another's company. (I am trying to explain that to our 3 year old son, Eli :) Anyway - the activity kits that many of you have sent the boys make the time pass by much easier. Thank you Laura for making that happen!

Keep praying, hoping and believing... Tom and Jennifer.

(512/04) 9:36 p.m. Ben was on his game today! His appetite improved some... enjoyed licking ketchup off of french fries (we take what we can get) and drank juice and milk. Thank you for praying for this! His bloodwork came back - he is OK on that front until this coming weekend, when they predict his counts will drop dangerously low.

We are so happy that Hanna and her family received positive news. Hanna's tumor is very challenging and doctors were very concerned. They (best case) expected the tumor to remain unchanged, yet it actually shrunk! Let's keep supporting them...

Let's keep believing - funny how we have to remind ourselves of that, yet Ben seems to already have a better grasp on it. The look in his eyes confirm it. Today, one of his doctors even commented on how unbelievable Ben's spirit is. He said that no matter how bad a day is, Ben will brighten it. Ben's chemo schedule is one of the most demanding known. The adminstration of the chemo is at times incredible. He received chemotherapy 5 of the past 8 days (which is routine). The mix of chemo the give him can cause his bladder to bleed and other complications, so his is given other medications to protect his organs. Twice a week he is given chemo straight into his brain - either through a needle into his head or in his spine. Some times they have to re-stick his spine several times to find the "right spot". Add to that a host of tests and scans, not eating for days at a time, painful daily injections and cental line work - most of us would have a wounded spirit to say the least.

Very few know this level of treatment and the toll it takes - this is why Ben is becoming a hero to the doctors, nurses and staff. And without a doubt, it is why he remains this mommy and daddy's hero too. We believe, Tom and Jennifer.

(5/12/04) News Flash - Our new friend Hanna (3 yr old) has just gotten reports back that show her tumor is smaller! What a miracle! Please continue to pray and thank God for this great news and His work in her life.

(5/11/04) 10:44 p.m. Ben received chemo through a spinal today - did very well. (Last time they attempted this procedure he was not able to take it.) He went to the occupational therapist and did fair. We are proud of him - he continues to fight in spite of not feeling well.

Ben is not eating well. This is the third day without a meal - only an occasional bite of something. This is expected, but concerning. Let's pray that he stay nourished and healthy. This week, he will continue chemo treatments (outpatient), therapy and tests. His counts will bottom out this week, so we will face that challenge as well.

Many of you have commented on last nights update - that it affected you deeply. If you have not done so, take a minute and read it below. Reality has a way of focusing our thoughts and prayers. Be reminded that this reality is a daily one, often amplified. Nothing else to add but "believe". Tom and Jennifer.

(5/10/04) 9:05 p.m. Something to think about...

After posting this mornings update, I experienced a harsh reality that no one in our shoes escapes. I received an email from a desperate grandmother of a child recently diagnosed with a challenging brain tumor. The message was brief, yet intense. Their family is facing life and death decisions that must be made in hours. A short time later, I spoke with the father who is broken. I realize that though my situation is comparable, it's not the same. What DO you say to someone facing this?

I went to the hospital to relieve Jennifer and made a quick "pit stop" in the cafeteria for lunch. I came across Taylor, one of our new friends facing the same tumor Ben is. Her grandmother was holding her close - I knew something was wrong. She told me that they were going to have an emergency CT scan because of vomiting and other problems. Things they had not seen since her diagnosis. In a moment, her mommy came up and the concern on her face was evident. Taylor just had a clear MRI last month - but we all know that this type of cancer fools us one minute then attacks the next. Those who have lost this battle typically see this kind of issue. After talking with them briefly, I noticed the number of sick children waiting for treatment in the halls and waiting areas. "These are kids." I thought to myself. This just isn't right.

I had to run back out to our van to grab something I forgot and noticed a handsome young boy - probably 7 or 8 vomiting in a trash can in front of the hospital - with his mommy carefully encouraging him.

When I finally made it to our room, I was emotionally devastated. This reality is at times, too much. Jennifer spoke to another mom whose child is also fighting cancer - when she spoke to Jennifer about Ben's situation and read about his cancer on the website she was broken to tears for Ben. There is a great level of sharing one anothers burdens among the families here.

Even now, as I am writing this update, I have to pause to help Ben who is vomiting up meds he just took.

Needless to say, you feel like someone hit you with a sledge hammer in the gut after a day like this. I suppose that is how these kids feel everyday. Something to think about... something to pray about. In times like this, we are often compelled to encourage with cliches and the like - but the truest words of encouragement flow from the relationship we share with one another and the compassion we gain from that experience. Please pray that I not become so stunned by what I experience here that I lose sight of the opportunities to really encourage those who are suffering the most (including my own family).

This, I believe is a lesson for all of us. I believe, Tom.

(5/10/04) 8:20 a.m. Eli and I just returned from a quick trip home (WV) last night. It was great seeing friends and family - and Eli really enjoyed seeing his old buddy Collin.

Ben is doing well. God is truly giving him strength. He remains inpatient - should be released Monday or Tuesday. Once again, he smiles his way through some very tough circumstances - even when he feels bad. He has regained some use of his legs and has better control of his muscles overall...

To all of the moms out there - pay careful attention to Jennifer on this journey. I can think of no greater challenge for a mommy, yet she remains steady and faithful to her faith and her family. Eli, Ben and I love her very much.

Once we are release from inpatient status, we return to the routine of outpatient chemo treatments and tests. Continue believing - Tom.

PS - Tomorrow is Hanna's MRI - let's pray for and encourage her/family. Visit . It is important for us to support them right now.

(5/8/04) Talking with Tom and Jennifer this morning, they said Ben is doing well this morning. Since he is in the hospital this weekend it changes the schedule and it is tougher on Ben. Every three or four weeks Ben needs to go “in patient” because of the combination of medications he needs to take. This is extremely hard on Ben and we need to pray for Ben extra this week. Making entries in the Guest book is also an incredibly important activity because these entries really encourage Tom and Jennifer EVERY DAY. This is a very real, very practical way we can minister to them and also encourage everyone who reads it.

Please pray for Hanna Gibson whenever you can. She and her parents (Tammy and David) have become very close to Tom and Jennifer and Hanna and Eli are big buddies since they are both three years old. Things are very tough for Hanna right now, so please remember them before God.

(5/6/04) 6:50 p.m. Day off! Went to the Memphis Zoo with Hanna and Taylor... had a great time with them! As for the zoo... well... let me put it this way: We thought a weekday would be smart. We thought getting there when the zoo opens would be smart. When we arrived, we learned that 1000's of school kids were there enjoying a field trip. Things were a bit crowded. We saw (maybe) 10 animals:) The line at the cafeteria was 45 minutes long (standing). This was interesting with 4 kids three and under. Oh well, we had a lot of fun laughing about it!

Ben continues to have trouble with his arms and legs - sudden weakness that we are concerned about. Continue to pray for Dr. Fouladi, Dr. Weiss and the entire team at St. Jude. Friday, Ben goes inpatient for 4-5 days. We will do this everytime he receives these particuliar drugs (about every 3 weeks). This chemo mix can cause his bladder to bleed and can cause other problems that need to be monitored. He becomes very sick and has a hard time with these meds. Please pray.

Do you believe? We do. Tom and Jennifer.

(5/5/04) 10:58 p.m. Interesting day. After significant improvement using his legs over the past couple of weeks, today Ben woke up and barely could support his own weight. This is one of the side effects of one of his chemo drugs - but the suddeness of it was a shock to us. The doctors are still unsure as to the exact cause - but are going to monitor the situation carefully.

A friend of ours, Wynn Varble drove in off of his tour to see Ben this afternoon. What a treat! He took time out to visit a few friends at St. Jude and even sang a few songs to our buddies at the Target House. Thanks Wynn - great to see you.

God sent a great encouragement to us tonight. Mark Miller, whose son had the same tumor Ben has, was in Memphis on business. He took time to visit us and encourage us and show his family's support. One year ago, his son, Michael went to be with Jesus after fighting this battle. Jennifer and I can not express how grateful we are that they reached out to us today. We are confident that this is the beginning of a long friendship. He brought a card from his family that, appropriately put, reads "Just sending a little angel to watch over you." Thank you Mark and Christina.

Tomorrow we will visit the Memphis Zoo with Hanna and Taylor, friends of ours from St. Jude. A great break from the routine. Thanks to Drs. Fouladi and Weiss for giving us the time we need to have some fun! Friday Ben goes inpatient - so this is great timing.

Thank you for faithfully checking in on us - and for praying so diligently. There are times that we are so worn, so emotionally spent that we truly depend on people to lift us up. Thank God for sending such fine people to our side. Believing, Tom and Jennifer.

(5/4/04) 10:11 p.m. Ben had occupational therapy today - and worked very hard! He seems to know, to some degree, that he must fight this thing. Thank God for giving Ben such strength! His diet continues to worsen... something that the chemotherapy causes. We keep providing him options - whatever it takes to keep the calories going in. His weight is OK (though he is losing weight) because the steriods he was on allowed him to put away a few pounds. (God has a way of orchestrating things for our benefit.) We know that food tastes terrible to him (they say everything tastes like metal) and he often doesn't feel like eating. Let's pray that he gets the nutrition he needs.

Today, our family was interviewed for a national ad campaign here at St. Jude. Tomorrow, they are going to follow Ben through his clinic time... something unexpected! Ben is truly capturing EVERYONES heart! Let's pray for the team producing this commercial... so much to say in a two minute ad. They are a great group of people to work with!

Remember our friend, Hanna. She and her family are facing a very hard week. Much anticipation and worry. Her MRI is Tuesday, May 11th. Pray for Tammy and David, her parents. Remember to sign their Guestbook, a great way to pass along your thoughts, prayers and encouragement.

(5/3/04) 11:21 p.m. Ben's spirit is unbelievable! He is smiling a lot, enjoying family and proving himself to be the warrior he is. We are proud of him. Today, he was supposed to receive the chemo treatment via spinal tap, however he encountered a problem. They have to remove the same amount of spinal fluid that they inject (in volume) of chemotherapy. They placed him under anethesia, prepared him for the procedure but could not withdrawl spinal fluid from Ben. Therefore, they could not give him the chemo. They did, however remove his stitches... first time Ben has been stitch-free since March 3rd!

Please keep this matter in prayer - this particular chemo procedure must happen once a week. We will let you know more specifics as we learn them.

Ben's diet is beginning to change. He will sample a bite of everything then reject it all. They say that his chemo causes food to taste terrible and suppresses his appetite. What he does eat he dips in ketchup or ranch dressing. He seems to like "Ketchup Blast Pringles" (yuck:), "Carnation Instant Breakfast", "Koolaid Blasts" and Cottage Cheese. At this point, whatever it takes! Strange diet - we go through a lot of things in one meal just to get some calories in him. Pray he stays hydrated, nourished and strong.

Eli and daddy had fun running around this morning looking for comic books (a new favorite of his). He is becoming such a little man... carrying on conversations and interacting with us - wow! He continues to be a big help to his brother - tending to him so compassionately.

Tomorrow, we are interviewed for a national St. Jude TV campaign and have occupational therapy. Remember, this weekend we go inpatient - Ben faces a very challenging schedule . Believing, Tom and Jennifer.

(5/2/04) 10:23 p.m. Today was a mixed bag... we had a lot of fun today as a family. We were able to get out for a few hours today and saw Danny Sartin and his family and Hanna Gibson and her family - Eli really likes playing with Hanna. Ben was exceptionally happy today - lots of laughs. We did notice, though that he began losing his hair today - something we know to expect, but hate to see and embrace.

Tomorrow, Ben receives chemo via the spinal tap - and will be under anethesia again. This is something you never really get used to. They allow us to be with Ben until the medicine puts him to sleep... a strange thing to watch happen over and over again.

Tuesday and Wednesday, our family will be interviewed on camera for two different national campaigns going on at St. Jude. This sounds exciting - Ben's story is really reaching far and wide!

Later this week, Ben will be admitted for about 4 days as they administer certain chemotherapy drugs that are very dangerous to his bladder and kidneys. We will keep you posted.

Some interesting things are in the works here in Memphis with our family... we will share more very soon. Special thanks to everyone using the Guestbook - your kind words and prayers are very encouraging to us. Believing, Tom and Jennifer.

(4/30/04) 9:59 p.m. Tough couple of days... we know and see God working but still wish it wasn't with our little boy. Several sobering conversations and meetings reinforcing that this will demand a miracle. Nothing less. Believing, Tom and Jennifer.

(4/28/04) 8:02 p.m. Doctors are excited that the swelling (build up of fluid on top of his head that has been an issue since his first surgery) has gone down. It was a large pocket of fluid on top of his head - causing his scalp to rise above his skull about 1.5 inches and about the diameter of a softball. Mike has asked for prayer regarding this several times in previous updates - and God has provided healing. It has been down now for 1 week, so the doctors are going to remove the stitches in his head. (They wouldn't remove them for fear that the incision may reopen due to the pressure.) Hopefully, they will remove the stitches Monday morning.

Step by step, God is leading Ben through this. Thank you for you faithful prayers.

(4/28/04) 4:26 p.m. BENS COUNTS HAVE GONE UP! The GCSF injections we give every night are working. Thank God for helping Ben through this. We know that this is going to become a regular battle for Ben, however it's nice to know that God does not grow tired of hearing our prayers.

Tomorrow, Ben receives more chemo through an injection into his brain. This particular procedure seems to cause him significant discomfort, please pray for this. Jennifer and I are getting more rest now... better than the hour-at-a-time sleep we have become used to. Thank God for the reprieve.

As our pastor, Larry Greene continually reminds us, God is good... ALL the time. Indeed, He is. Tom and Jennifer.

(4/27/04) 8:47 p.m. Keep believing with us. Tom and Jenifer.

(4/26/04) 11:11 p.m. Ben received chemo via an injection into his spine area today. This is one of the unique ways St. Jude is treating Ben's cancer. It allows chemo to break the "blood-brain" barrier that traditional chemo does not reach directly. (This particular chemo is also given directly into his brain via a port on top of Ben's head.) Additionally, he receives multiple chemo drugs "traditionally" via his central line.

His counts (what allows him to fight infection, etc.) were around 9600 one week ago. Today, they fell to 200 (500 is considered a critical point). He must wear a mask anytime he is out of our room (to go to the hospital, etc.). Otherwise, we must avoid interaction with people - so we stay inside a lot and are very careful.

He is a little uncomfortable right now as well. The chemotherapy, teething, recent brain surgeries and being subjected to a host of tests are causing him headaches. We can not use Tylenol because it can mask a fever (a critical concern with his low counts). Other useuable pain meds have stronger side effects. Please pray that Ben has the necessary pain relief as soon as possible.

Also, let's pray that while his counts are at this low point (about 14 days or so) that he be protected from infection. The tiniest cold, etc. can be life threatening. A fever of 99.4 demands immediate hospital admittance.

We (or Mike) will keep you posted throughout this delicate time... thanks... Believing, Tom and Jennifer.

(4/26/04) 2:00 p.m. Ben’s important counts are extremely low today. The critical level is 500 and he is around 200 right now because of the Chemo. Please pray that he stays protected during this critical time and that his numbers will start increasing.

(4/24/04) 11:23 p.m. Today was relatively easy. Other than usual meds and flushing his central line, today was fun. The boys played, Jennifer and I caught up on some business things and then we went out with Hanna and her mommy and daddy for dinner. It was nice to have a "normal" evening of sorts.

A few minutes ago, I heard Ben in the bedroom saying "Da" - so I went in to see him. (He was in bed with Jennifer trying to get to sleep.) I layed down with him for a minute and watched him. He was nodding off, seemingly trying to fight the sleep. His head was obviously hurting him yet in the discomfort he smiled at me. I rubbed his head, trying to calm him more, he reached out to me, grabbed my hand and smiled while squinting from his pain. As daddy, I want to fix it right now. I sensed he knows that and that he knows better days are coming. Better days ARE coming. Jennifer and I are learning so much from both of these boys - God has certainly blessed us!

(4/23/04) 11:45 p.m. Ben began round two of chemo today and is doing well. They injected chemo through a needle inserted into his head and through his central line. He didn't miss a beat! He stayed glued to the "Bear in the Big Blue House" video that was playing in his room. We thank God for his strength! Recently, a dear friend of ours, Bill Sheils posted this in the Guestbook:

"... It is very encouraging to hear how Big Ben is doing. (I am going to call him Big Ben because there is nothing little about this warrior.) He has the heart of a lion, and he, along with your family, has been such an inspiration to us all. You guys are my heroes, and will continue to be the target of our prayers every day."

"Big Ben" is about right! He is a warrior! We are so proud of him... and we realize that his unusual poise is the result of God's goodness and your prayers. So continue on... continue praying that God give Big Ben - and our family the strength needed to meet each challenge. We believe, Tom and Jennifer.

(4/22/04) 1:30 p.m. We wanted to pass along a special prayer request... When Jennifer, Eli, Ben and I arrived at St. Jude our first day, a very kind woman and her daughter took the time to seek us out and help us find our way around the hospital. She offered words of encouragement and reassured us greatly. She reached out to us while we were still in Cincinnati - through a mutual friend.

(Interestingly, this mutual friend read Hanna's story on St. Jude's website when she was patient of the month. Feeling compelled to reach out to her and her family, she began sending "care packages" to them on a regular basis. That was over a year ago. They got to know each other via telephone and by mail. When Ben was diagnosed, our friend connected us - and the rest is history!)

Hanna, her mommy, daddy and family (Tammy and David) just returned from Disney after a WONDERFUL Make-A-Wish trip. They returned to St. Jude (and harsh reality) Tuesday evening. I imagine having that great experience together as a family was priceless - but coming "home" to the hospital is discouraging.

Please pray for these kind people. Hanna is a beautiful 3 yr. old girl (see this link) diagnosed with a brain tumor. Tammy and David are great parents and friends. Getting back to the grindstone is necessary, but disheartening - pray for their strength.

(4/21/04) 10:15 p.m. So full of life! That describes Ben today! He is feeling much better. He was much more interactive, said "momma" and "daddy" a lot and even threw a ball to Eli a few times! As parents, this is what we live for.

Ben was in clinic today - the brain surgeon, Dr. Sanford examined him and was very pleased! Ben is recovering well from the surgery! The oncologist, Dr. Fouladi (Ben really likes her!) is pleased as well. His "counts" are dropping, though - this is important because it shows that the chemo is working. At the same time, the lower his count, the more vulnerable Ben is to infection. Let's pray that Ben is protected from infections during this critical time. We will take every precaution possible to keep Ben safe - limit exposure to the outside, wear masks and keep things VERY clean.

Tonight, Jennifer and I went through the routine... giving him the "G" injection (GCSF - this helps boost his counts and protect him from infection.) Then we changed the dressing on his central line. This is a careful and slightly involved process involving the line that runs from his chest. They give various transfusions, medicines, fluids and can take blood for tests through this double lumen line. It is connected to a vein that runs directly to his heart. Additionally, we give him his oral meds - a variety of things ever changing - to keep him healthy. Please pray that we remain alert and sharp when caring for Ben. Remember the other St. Jude families that have similar challenges - they need God's touch too!

We are working on the calendar of treatment and anticipated "challenging times" so that you may print and use it for prayer. Until then, Friday begins round 2 - Ben IS up to it! Believing, Tom and Jennifer.

(4/20/04) 2:16 p.m. Chemo went well this morning. Ben was under anethesia for about 1 hour while they injected the medicine into his spine. He woke up wanting to play! He is home with family now and is resting. Tonight the Rhodes Frisbee Team is going to visit Target House and show us a few frisbee moves and tricks. This should be interesting! Ben will be in clinic through Friday and will receive round two of his chemo Friday morning. Believing, Tom and Jennifer.

(4/19/04) 9:53 p.m. Ben is home with us this evening. His continues to do well with his treatments. Jennifer and I are tired - pray for good rest tonight (and the next few nights to come.) Tomorrow morning Tom will take Ben to the hospital for chemo injection in his spine... we will check in at St. Jude's around 8 am and the procedure around 9:30 am. More to come... Still believing, Tom and Jennifer.

(4/19/04) 10:51 a.m. Ben is doing well this morning... no vomiting! Hopefully, he will get to come "home" tonight around 7 PM, after his last dose of meds. He will not have tomorrow off as expected, instead he will receive another dose of chemo. This dose will require that he be under anethesia because it is injected straight into Ben's spine. We will keep you posted, Tom and Jennifer.

(4/18/04) 9:53 p.m. Thank you for your continued prayers. Ben received several doses of chemotherapy since Friday night and is doing well. These doses are extremely potent and have many side effects. He is in good spirits and continues to charm the nurses and staff at St. Jude! (He IS a Bowen!)

This Tuesday, we expect to be released from inpatient care. Ben will continue to have tests and undergo additional chemo treatments in the outpatient clinic throughout the week. Physically, Ben will face several obstacles. Stomach sickness, sores and hair loss will be evident in the next few days. Later in the week, they expect his "counts" will be low and therefore he will be extremely vulnerable to infection. One of the chemo drugs causes muscle weakness and loss - this will effect his motor skills as well as his vocal chords. This may cause him to aspirate fluids that he drinks. This may be a very rough week for Ben, so please pray for his strength. Pray for Dr. Fouladi and the St. Jude team as they make critical decisions regarding his care.

Jennifer and I will soon post a printable calendar of treatment so that you may have a copy to keep track of Ben's intense schedule. This will also serve as a great prayer guide. Since the week will be challenging, we will update often so that you can be better informed.

Eli is doing well and is enjoying the toys he received for his birthday. (Click here to see pictures from Eli's party this weekend.) Jennifer and I are sleeping when we can. Tonight, Jennifer's parents watched the boys so that we could enjoy a dinner out. (Thanks Bob and Susan!) Please pray for us that we remain focused on the bigger picture and not grow discouraged. We know what to expect with Ben this week, but we don't know how we will handle it. This is why we must trust God. Believing, Tom and Jennifer.

(4/16/04) 10:00 p.m. Ben's chemo schedule was delayed slightly today, he received his first dose at about 9:25 p.m. this evening. Jennifer and I realize that this marks the beginning of a new journey. Not sure what else to say at this point, but pray and believe -- Tom and Jennifer.

(4/16/04) 1:03 a.m. Today is finally winding down. Just finished a round of meds with Ben and Eli. God answered many prayers by giving Ben the grace to make it through a difficult day. He was a trooper. Imagine being extraordinarily hungry and irritable from medicine, not allowed to eat for 13 hours and have to be still during a nearly 1 hour test. He did it! We are proud of our little boy... but KNOW that God gave him such favor to deal with the circumstances. Tomorrow Ben embarks on the MOST CHALLENGING time yet. Please pray.

Eli is responding to the meds - he has asthma-type attacks when his allergies reach a certain point. Evidently, this is a bad time of year for allergies in the Memphis area. Continue to pray that he does well with this.

Speaking of Eli, today was his birthday! Even though he felt kind of rough, he had fun playing with some new toys. Saturday, we will have a real birthday party for him at the Target House at the Tiger Woods Pavillion. We will have some new friends from St. Jude's and First Evan. Church join us for the cookout and celebration. Jennifer's parents will be in town to visit and love on the kids. Ben will be inpatient through early next week, so Jennifer and I will take turns attending the party.

We keep asking "why?" and don't seem to find the answers. Maintain composure, yet are terribly broken. Still, we believe. Thank you for doing the same, Tom and Jennifer.

(4/15/04) Ben made it through the bone scan procedure today even without anesthesia (again)! This is a painful experience and yet Ben just laid there on the table without fussing or moving for the entire 49 minutes. Today is Eli’s birthday and the Bowens were hoping to celebrate, but Eli is not dealing well with the pollens down in Memphis and has had a bad allergic response. They have given him a breathing treatment with an additional steroid treatment, so hopefully he will not be admitted to a different hospital tonight. St. Jude is not allowed to treat non-cancer patients. Please pray that Eli responds to the medication so Tom and Jennifer can just focus on Ben who starts his chemo therapy tomorrow.

(4/15/04) SPECIAL PRAYER REQUEST Because Ben's chemo schedule was moved up to tomorrow, a tough schedule today is anticipated. Of utmost priority is a bone scan. Ben must be NPO (can't eat anything from 1 AM until the procdure scheduled for 1:45 PM). One of the side effects of the steroid medicine he is on is a strong appetite. (He has gained 6 pounds on this medicine over the past month.) Additionally, the steroid casues extreme irritability. Add the brain surgery and complications and you see what Ben is facing today. PLEASE PRAY FOR HIM THIS MORNING. We will let you know as soon as he is out this evening.

Also, Jennifer and I will sign the consent forms for Ben's treatment this afternoon. They cover a lot of sobering things during this process. We already know these things, but reviewing them is difficult. I am not sure what to ask for... just pray. Believing, Tom and Jennifer.

(4/14/04) Ben continues to heal, in fact, the Dr.’s are so pleased with his progress since the surgery that they want to start his chemo-therapy on Friday this week instead of waiting until later next week. Ben will be going through a bone scan tomorrow which will require him to lay perfectly still for over 45 minutes while they do the scan. On Friday he will check back into St. Jude’s for his treatment. In addition to the bone scan, tomorrow will be the day the physicians go over all the treatment plans, the potential side effects, and the chance of survival with Tom and Jennifer so it will be a difficult day for them. They know what is ahead and the Dr.’s are very kind, but this ATRT primitive cell cancer is tough and does not respond well to treatment. Please pray for the Bowens so they can handle the discussions and continue to trust God.

Friday will start the first 10 week regiment and Ben will be extremely sick during the process. The treatment calls for the application of multiple harsh medications for four straight days and then a day or two break when he should be able to go back to the Target House, then on again for another 4 days and 2 days off treatment plan. This would be a perfect time to have different groups organize prayer for Ben. The procedures and traumas so far have been leading up to this chemo therapy treatment which will be really difficult on Ben and the family. Please pray.

(4/13/04) Ben continues to move forward and gets to spend the rest of this week and weekend with the family at the Target House. It is really nice to have everyone in one place, even though the staff at St. Jude’s has just been excellent! Chemo therapy should start either Monday or Wednesday of next week so please pray that Ben heals as much as possible between now and then. The swelling on top of Ben’s head is causing him discomfort, but will not require the Dr.’s to do anything special since it is expected that his body will absorb the fluid naturally. Thank you to everyone involved in the Papa John’s fund raising; it appears to have been very successful. It is still pretty hard on Jennifer and Tom when it comes to sleeping, so please pray they can be well rested before the difficult chemo therapy starts next week.

(4/12/04) 10:00 p.m. Ben was released from Le Bonheur Hospital today... to St. Jude's Children's Hospital. It was a tiring day of tests and waiting rooms. All of us are tired and ready for a few "easy days". The fluid build up on top of Ben's head continues to bother him, continue to pray for this issue. Being sensitive to Ben (and our family's needs), St. Jude's staff decided to send Ben home to the Target House with an IV-type device to administer medication continuously. Ben has a backpack with a pump and a line connected directly to him around the clock. This allows us to be relatively free from the hospital over the next few days. This will make Ben's quality of life much better and allow us some good family time before treatment begins next week. Jennifer Havens, Dr. Fouladi, Elizabeth Gilger, Rebecca Yates and the entire team at St. Jude's are WONDERFUL! They seem to understand that as much healing takes place in family time as it does in hospital time. These people are truly a blessing to us. Remember to pray for them...

We will post a more involved update tomorrow and hope to post our first video update from Memphis in the next couple of days. Good night all... Tom and Jennifer.

PS - Special thanks to the Le Bonheur nursing staff - you know who you are - that were so very kind to us during our time there. We all faced a tough week and you made it easier to handle. Doctors Sanford and Boop - you are the best!

(4/11/04) EASTER SUNDAY! 2:00 p.m. Ben is improving! The doctors (for the second time in the past 30 days) have told us that the infection they suspected in his brain is not there! Thank God for caring for Ben in this way. This means we may be able to check out of Le Bonheur Children's Hospital Monday morning. The fluid build up is still a concern, however the CAT scans show NO PRESSURE on his brain. This is good. It is very frustrating for Ben though. He is obviously in considerable pain and continues to have several pain meds administered to him. Let's pray that this gets under control soon.

This morning, Danny and Cathy Sartin (friends of ours from YFC that live in Memphis) decided to spend the morning with us. This was a great encouragement to our family! Our family enjoyed Easter baskets from the Vital family back home... the boys were thrilled (and so was mommy and daddy, sugar and coffee is a good thing when tired!)

Jennifer and I are tired. This week has been demanding. We may get to sleep an hour or so at a time and are starting to feel it. Hopefully, we will get to come "home" (Target House) Monday and recoup a few days before treatment begins at St. Jude.

Please keep praying - we will keep you posted. We know the most challenging weeks of it all are about to start. But we believe God and His promises. We hope to post a video and some recent pictures as soon as Ben is out of this crisis. Until then, Tom and Jennifer.

(4/10/04) 8:30 a.m. Urgent prayer needed! The Dr.’s have advised Tom this morning that the swelling on Ben’s head continues to be the result of the spinal/brain fluid seeping up instead of going down into the spinal column as it should. This has become a major issue and we need to pray for an immediate improvement. If the flow does not change, they will need to go in and place a shunt. Unfortunately this shunt would interfere with the chemo therapy that St. Jude’s had been planning on using which is why the Bowen’s are in Memphis! In addition this swelling causes discomfort for Ben. The Dr.'s are also concerned that there may be some infection in the brain, not serious at this point, but something that complicates the treatment options. Please pray now for this to improve.

(4/09/04) 8:00 p.m. Ben continues to move forward. His eyes are no longer wandering and he is focusing well (Praise God!). Also he is much more alert today than before. Swelling under his skin is still a problem but there is no pressure on the brain. He still looks pretty rough as he recovers from the surgery but he should be transferred back to St. Jude just as soon as possible, hopefully early next week. Last night was a tough one for Tom since he got zero sleep while he watched over little Ben, so please pray for the whole gang. Tom’s parents came down to Memphis today to help out and hopefully Tom and Jennifer can get out for a “date” night tomorrow, just the two of them. Praying that Tom & Jennifer stay strong together during this process is a worthy activity for all of us.

(4/8/04) 3:00 p.m. Ben continues to improve from the surgery. Right now there is good deal of swelling just under the skin but neurologically he is sound and the Neurologists are very pleased with his progress. They have decided not to put Ben into the step-down unit until after this weekend because they want to reduce the risk of infection. Amazingly Ben is already able to stand (with help) and his right arm is moving well. The MRI showed no major bleeding which is good news but it also showed a small match-head size piece of the tumor remaining. The Dr.’s said that it was within their guidelines to treat that size tumor with the chemo and radiation that has been expected which is also good news. There continues to be quite a “buzz” of interest around baby Ben in the hospital and Dr.’s and nurses are stopping down when they are off duty to see this “special” kid. God is so gracious!
We need to pray that the fluid would now flow correctly down into the spinal column since the surgery removed the clot that was blocking the flow. Evidently only 30% of the time the fluid does flow correctly after surgery and the other 70% they need to go back and put in a shunt. After surgery of this magnitude there are always side effects that occur. Sometimes they are just temporary like the right side weakness and sometimes they are permanent like Ben’s sensitivity to light. Right now there seems to be something going on with Ben’s eye sight since his eyes “wander” a bit. Please pray that this is one of those temporary complications.
Tom and Jennifer are tag-teaming it where Jennifer is taking the day shift and Tom the night shift (with overlaps). Danny and Cathy Sartin have been helping out a good deal with Eli (thanks Danny & Cathy). Last night when Tom brought Eli up to see his little brother Eli was showing everyone in the elevator a picture of Ben saying he was sick. Tom commented that Eli is such a blessing to them because of his caring attitude for his little brother.
The Guest Book on the web site continues to be a daily encouragement to the Bowens. It is a very practical, personal way that each of us can support them, write often.

(4/7/04) 10:30 a.m. Tom spent the night (wide awake) with Ben in intensive care last night and things are moving forward. Ben is slowly getting his color back due to the successful blood transfusion last night. The CAT scan yesterday showed no major bleeding (Praise God) and no swelling but they will do an MRI later today that will provide much more detailed information. We need to continue to pray for healing, particularly now. They expect to step Ben down from intensive care in the next 24 hours if he progresses. He is on pain medication which keeps him out of it a lot but he really likes having his mom or dad in the bed/crib with him. He is still classified as having extreme right side weakness but he is using his right arm “some”. Tom said it has been a real blessing that Sherry Simpson came from Huntington to be with them. She was not planning on the trip but just felt prompted by God to go and she has been a real help to Tom and Jennifer. Tom hopes to put a current picture on the website later today, but please understand, Ben is still wired from head to toe.

God continues to use Tom and Jennifer in the lives of other people by connecting their stories. One of those God-ordained connections occurred with the parents of Bradley, a 14 month old at the hospital. Bradley is suffering from a choking accident earlier in the week and the Lord allowed Tom and this family to spend time together in the midst of what Ben is going through. God is receiving Glory as Tom obediently exercises his gifting just as he did in New York after 9/11. Tom encourages each of us to exercise our gifts wherever we are. The scripture says they will know us by our love, and we need to exercise it for others to see it.

(4/06/04) Ben is out of surgery but some serious things are going on. The surgeon was able to remove all of the tumor but needed to cut through a number of blood vessels at a very critical spot. The risk of internal bleeding is high and the next 24-35 hours are critical for Ben. Now is the time to pray for him.
The Dr’s will be doing a CAT scan this afternoon to see if internal bleeding is occurring. At this point Ben has significant weakness on his right side and his skin tone is very pale. He will be receiving a blood transfusion today as well. Please pray for God’s blessing and healing.

(3/29/2004) Tom and Jennifer had a great time at the party yesterday thanks to everyone being there.  Special thanks to the Mann family for hosting.  They had such a great time seeing people that the trip to Memphis was delayed until after 6:00 p.m. which put them in safely around 3:00 a.m. Memphis (central) time driving straight through.  Then after a three hour nap they were back up for an early MRI for Benjamin.  The results of the MRI were very good, spinal fluid remains clear and the remains of the tumor did not appear to have grown. Ben still has swelling on the top of his head which reveals a continued problem with the flow of spinal fluid.  The staff at St. Jude will be doing a spinal tap tomorrow (3/30/04) in hopes of relieving the pressure caused swelling and to help encourage the correct flow of spinal fluid down into the spinal column instead of the flow up underneath the skin.  In addition they will be injecting a dye into the spinal fluid which will allow them to check the flow over the next two days.  This test is called a CYSTOGRAM (sp?) and a positive result is critical to Ben staying in the special program at St. Jude’s.  If the dye shows that all the plumbing for the spinal fluid is working properly he will be able to stay in the program.  This is very important because the specialized treatment applies chemo therapy directly to the spinal fluid so it must be in functioning order.  If the test reveals a problem Ben will need to undergo a more traditional chemo therapy regiment. Tom and Jennifer are currently staying in the “Grizzly House” which is like a lodge with larger hotel rooms.  They should be able to move into the "Target House" by the end of the week.  The Target house will be their semi-permanent home for the duration of Ben’s treatment and will give them some real space including a kitchen and place to eat together as a family. Please pray specifically for rest for everyone and that the test shows the spinal fluid is flowing correctly.  The special program is why they are nine hours from home.