Sunday, October 31, 2010

Fasting and Praying Together

Billy is doing well!  He went for a walk today, and he's becoming more and more independent--as independent as he can be when he's stuck in a hospital bed and has an NG tube in his nose.  He is doing what he can to get stronger, and it's encouraging to watch!

Billy has a few specific requests as we begin the day of fasting and prayer.  He'd really like to be able to eat again.  With Thanksgiving coming in a few weeks, he's hoping that his stomach will begin working, so he'll be able to join in.  Would you pray that...
  • Billy's intestines and stomach would begin working like they should
  • Any blockages in his system would be cleared out
  • Billy would be able to enjoy eating pumpkin pie and cowboy cookies (a family favorite!) on Thanksgiving

The doctors have advised that Billy have a catheter inserted to drain the fluid pocket in his "flank," but Billy's not so sure about that.  Please pray for...
  • wisdom for Billy and for us as we make medical decisions
  • patience for the doctors
  • wisdom for the doctors in knowing how to treat and care for Billy

Medically speaking, the cancer is unbeatable.  Pray for God to do the impossible.  

Now to him who by the power at work within us is able to accomplish abundantly far more than all we can ask or imagine, to him be glory in the church and in Christ Jesus to all generations, for ever and ever. Amen.  (Ephesians 3:20-21)

For fun, if you're praying for Billy, would you mind placing yourself on the map?  We'd like to know who's praying and where you're from!  Thanks for joining us on this journey!

Saturday, October 30, 2010

Will You March with Us?

My mom wanted to pass along an invitation to all of you...


The other day, I mentioned to Billy that I wished we could gather all of the people who are praying for him into one place at one time. We know there are hundreds of us, maybe even thousands.  Can you imagine the sight of thousands of people praying for Billy at the same time?  What a sound that would make!  As we continued to talk about the idea, Danny (his youngest brother), came up with a creative suggestion.  Even though we're spread out all over the world, what if we all prayed on the same day?

Monday, November 1, marks 40 days since Billy was diagnosed with gastric cancer.  In the Bible, the number 40 is often associated with periods of waiting for God to work.  God's people would also fast as they prayed.  In that spirit, we'd like to invite you to join us on November 1st for a day of fasting and prayer for Billy.

What would fasting look like?  Some people fast from everything but water.  Others--for health reasons or life obligations--choose to fast from particular foods, or from other things (like music or facebook or the Internet).  Whatever the case is for you, we wanted to invite you to fast with us, and to spend the day in prayer, asking that God would completely heal Billy's body.

In the book of Genesis, God promised to give the land of Canaan to the people of Israel.  Over time, the Israelites ran into a lot of difficulties.  One involved the city of Jericho.  It was a walled city--a fortress--and there seemed to be no way for the people of Israel to overtake the city.  So God gave them instructions.  The people were told to march around the city wall, one time each day for 6 days.  On the 7th day, they were to march around the wall 7 times, shouting and blowing trumpets during the final lap.  The idea probably seemed ludicrous.  The people of Israel certainly got mocked.  But they did as God instructed, and the city wall came tumbling down!  (Joshua 6:1-20)

Similar to marching around the wall of Jericho before the walls fell, we are asking each and every one to “march” your prayers around the hard cancerous wall of his stomach.  Please pray that God would crumble the hard mass of cancer, making it disappear completely.  Pray that God miraculously heals his body.

We’ve seen so many victories.  Some of the doctors have even called Billy's progress "miraculous."  Let’s trust God for the big one!

Thank you for praying!
Jill Bohren (Billy's Mom)

Friday, October 29, 2010


I’m just a civilian, but from what I understand, Billy’s journey in the army is fairly commendable.  In December 2002, Billy enlisted in the army as a private first class (E3, toward the bottom of the army's ranking system).  After completing two deployments (Iraq and Afghanistan), he spent several years in the Old Guard in Washington D.C.  After a while, he decided to go to flight school to become an army pilot.  By April 2009, he finished Warrant Officer Training School, and was promoted to WO1.  From what I understand, becoming a Warrant Officer by the age of 24 is fairly uncommon.  But then again (and Billy’s friends would all agree), Billy’s not a common kind of guy.

Billy completed his aviation schooling in mid-August this year.  He completed a PT test around the same time, and officially graduated from flight school on September 2, 2010.  He’s officially a Blackhawk pilot.

Billy showing my mom the controls inside one of the older Blackhawks at Fort Rucker.

As my parents and I spent time with him in AL for his graduation, we often heard soldiers asking each other, “So where are you headed now?”  Army soldiers and members of the National Guard come to Fort Rucker for aviation training, and then get sent out again.  Some return home to places like New York or North Dakota.  And others get sent out to new places.  When people asked Billy where he was headed, he’d smile and answer, “Hawaii.”  As one might expect, it was an enviable assignment. We all joked about needing to plan a trip to see him.  It was a good excuse for a tropical vacation.

When news of Billy’s diagnosis hit Fort Rucker, people were shocked.  The word spread quickly, and people rallied together to show their support.  Captain Barnes and Major Smith called my mom and spent time trying to work out plans to get Billy to Walter Reed Army Medical Center in Washington D.C.  One of Billy’s flight instructors would call me almost daily to get an update on “Mac.”  No one expected something like this, and people worked to do whatever they could to support Billy.

I can see that my family’s presence is good for Billy.  He looks forward to spending time with us, talking, watching movies, and just hanging out.  But there’s something different that happens when army guys come in the room.  Friends from the army provide a kind of support and camaraderie that family doesn’t have.  Army support has been a key piece in Billy’s fight against cancer.

Just this past week, he received a HUGE care package from a whole slew of people at Fort Rucker.  I’d love to give credit to all of the contributors—but I don’t know who all of them are.  In the box were t-shirts, hats, an American flag, medals, and a letter.  I watched Billy’s face as we hung things up around the room, and I could tell he appreciated the gifts.  The box spoke volumes.

Sometimes they call it "Mother Rucker."

My favorite hat from Fort Rucker.

A very special American flag, and a letter that explains it.  That story to come later...

Many of the soldiers at Fort Rucker now don’t know Billy.  Fort Rucker—for most—isn’t an army destination.  It’s like college—a place a soldier goes for training to prepare him for army assignments elsewhere.  But the soldiers who are now in training at Fort Rucker wanted to show their support for one of their own, so they dedicated an early-morning PT session to Billy.  Last Friday, they gathered early (I don’t know what time exactly, but it was dark!) to run in Billy’s honor.  Here's an article about the run.

The banner from the run.

An early morning start!

Running Together


A video from last Friday's run. (Edited by my brother, Bobby.)

Thank you to everyone who has shown their support.  My family greatly appreciates it, and I know it is helping Billy to fight hard.  I know what I’m about to ask might seem impossible, but please join us in praying that he’ll be able to fly high again.

On the Matter of Prayer
On the subject of prayer, amazing things have been happening!  I sent out a quick message yesterday afternoon, asking people to pray...
They want to do a CAT scan (with contrast) today. It requires inserting dye into his body, which means turning off the NG suction for 2 hours. (This will be very difficult because of the fluid that builds in his belly & makes him nauseous.) Pray for God's protection, for his body to tolerate the dye, & for his belly to be calm through the whole procedure. Pray for a successful scan! Thanks!

Billy's stomach has not been working for over a month.  That's why he has the NG tube.  It pumps the extra fluid from his stomach, so that he doesn't get nauseous.  Throwing up all the time isn't good for his esophagus.

When I heard about the CAT scan, I got a little nervous.  Thus far, Billy hadn't done well when the NG tube wasn't pumping.  Too much time without suction would be miserable.  I wasn't sure he'd make it.  To make matters more intense, Billy would have to ingest 600mL of contrast--and keep it down--until the CAT scan was over.  It seemed impossible!

So that's why I sent out the message.

And late last night, I sent out an update...
Guess what! There was a miracle!  Billy was able to keep all of the liquid in. No nausea! They stopped the NG tube at 5pm, and started him on the contrast fluid. He finally got enough in him by 9:45pm, and they took him down for a CAT scan at 11:15pm. We were back in his room by midnight. 7 hours! I was amazed...seriously. Thank you so much for praying! 
I'm seeing evidence that prayer works.

We got the results of the CAT scan this morning, and I'm even more amazed.

Several weeks ago, when Billy was septic, the doctors told us that it was no longer possible to remove the fluid in his abdomen without an invasive surgery.  The reason was that the fluid was in thick little pockets all over the place, rather than one large collection like before.  Making several punctures all over his abdomen would have been fairly traumatic--as would a massive surgery to "rinse out" his belly.  It seemed like there were no options.

So my mom started praying that the little fluid pockets would all come together.

Guess what!  The CAT scan showed a large pocket of fluid on his left side, near the place where the surgical team made the incision last Saturday.  That means that Billy could have a far less invasive procedure done to drain the large pocket of fluid!  The surgeons plan to take him for surgery sometime today to insert a catheter to drain the fluid.  It's probably infected, and antibiotics probably aren't going to take care of it, so a catheter seems like the best option.

Meanwhile, Billy went for a walk a few days ago, and he went even farther today.  He told my mom that every time he walks, he feels stronger!

His will to live and his will to fight are inspiring.  I am honored to have him as my brother, and I am grateful to everyone who is supporting us and praying for us.  Thank you so much!

Ways to Pray
  • God to stop the cancer in its tracks--that despite what modern medicine says the odds are, Billy would be able to beat this!
  • Billy to be able to fly again
  • Steady hands for the surgeons as they insert the catheter, with no complications
  • Billy's body not to need antibiotics anymore (they're stopping one more of the antibiotics today)
  • Perseverance and good health for my family as we work to support and care for Billy
  • Creativity in battling the boredom associated with being stuck in a hospital bed!

Thanks for praying!

Thursday, October 28, 2010

A Mother's Heart

Today, I have the privilege of sharing some thoughts from a woman who means the world to us--our mom. 


Just yesterday Billy had mentioned both the need and desire to pay some of his bills.  I knew Michelle had worked with Billy after he got out of ICU to get some financial matters sorted through and taken care of, but Billy was still very sick from his infection, and they could only do a little bit at a time.  Now I knew there were ways I could help.  Michelle shared with me everything she had figured out so far.  She was off to a great start, but when she started working remotely (computer programming for Geisinger), I knew her plate was more than full.

Last night, I also asked Michelle if she would be interested in a blog entry from me once in a while.  She has been doing such a fantastic job, but I thought I might be able to give her a break.  She smiled at the idea.

On my way over to the hospital this morning, I stopped at Michelle and Bobby’s “office”.  One of the bedrooms, which just happens to be right across the hall, has been converted to a workstation.  I asked Michelle a financial question, and when I was leaving, she asked me for a hug.  I could tell she was crying.  She said the day was just hard for some reason.  After she posted the blog last night, she received a message and an email about marathons.  We really are in the midst of one.

Just 5 weeks ago last night (Really? Is that all? Can that be possible?), I was on a plane to Miami.  Billy had said something about them finding a mass, but I figured I might be there for a short while as he recovered from some kind of surgery, and then I’d be on my way.  Not in my wildest imagination could I have prepared for this, to be told just one and a half hours after I arrived that he had incurable, inoperable stomach cancer, with maybe 12 months to live.

Since, and including, that day (Thursday, September 23) we have watched him take 4 major hits:

  • the first:  the news of the cancer, a hit from behind he never saw coming.  
  • the second, the collapsed lungs after the insertion of the cataport (just that very same night) and waking up in ICU for 3 days with chest tubes, an NG tube, and being hooked up to a ventilator.  That hit came from the left.  
  • then there was the 5 days of very potent chemo (that following Monday, the very night he came up out of ICU).  That hit seemed to come from above.  
  • and of course the systemic infection that found him back in ICU on October  7.  That one came from below, trying to knock him off his feet and down for the count.  It seemed like every day was costing him a month of the short life they said he had left to live.

We watched, literally in shock, as this drama played out in front of us.  How could this be happening?  We cried.  Oh, how we cried!  We felt helpless, but thanks to our God, never hopeless.  We prayed, and prayed, and prayed some more.  We would go to bed exhausted, broken hearted, sickened by what Billy was having to endure, and shaking our heads in unbelief, only to wake up the next morning and realize it really wasn’t a bad dream.  This thing is for real, and we get to go through it again, and again, and again.  But we will go through it again, and again, and again, to help Billy fight this every step of the way.  He is indeed in the thick of a battle.  We were here to fight for him when he couldn’t fight for himself (specifically to get him here to Walter Reed) and we’ll continue to be here and fight with him.  He wants to fly again, and we want to watch it happen.

Billy was not expected to live through the weekend with the systemic infection.  We found that out Monday, October 11.  On October 14 we celebrated his 26th birthday, and ever since that day, we have seen so many prayers answered on his behalf.  We are so thankful to still have him with us.  Thank you all so much for praying for Billy, and for our family.

I listen to the doctor’s daily reports.  (They have actually recorded in their medical notes that his progress is miraculous.)  We have a “communication” book where we record these reports, as well as our observations and concerns, if any.  We also use it as a guest book where we have his visitors sign in.  We track a lot of progress lately!

Yes, he still has an open incision in his left side where fluid from an infectious spot is draining, but the redness is now gone.  Today, he walked further than yesterday, and stayed awake for 6 hours making phone calls and paying bills.  He is too weak to be able to do any more chemo at this time, and his stomach is still not working.  But each day since his birthday looks better than the day before.  We recently started discussing Thanksgiving plans.

Jill Bohren
Billy and Michelle's Mom

And a little P.S. of sorts...a "blog correction," as my mom put it, and these are her words, not mine...

Mom loves to "facilitate" or help orchestrate surprises for other people.  However, she is not especially fond of being surprised.  In fact, she prefers not to be the focus of a surprise.


Thanks Mom.  I love you.

Wednesday, October 27, 2010

It's More Like a Marathon

I don't think we live in a very patient culture.  Or maybe that's my way of saying that I feel impatient sometimes.  Whatever it is, I can see that there's a long road ahead.

The idea of running a marathon sounds like a lot of fun (at least it does to me).  I've wanted to run one ever since I finished my first half marathon with a friend in April 2004.  I have yet to complete a full marathon--but Billy and I still talk about running one in Hawaii when he gets out of here!

In the meantime, I think I'm learning (or relearning) some things here that may help me in that future marathon training...

1.  Initial Pace.  With new runners, there's a tendency to "go out too fast."  My cross country coach in high school (Ron Keller) used to talk about that all the time, as if we should know better.  We needed to figure out the kind of pace we could sustain so that we could finish strong.

Every day, the surgeons come by and look at Billy's side.  From day to day, the progress doesn't seem all that remarkable.  But you know what?  The pace is what Billy can sustain.  And he's farther ahead every day!  Today, the surgeon looked at his left side (where they made the incision on Saturday morning), and he commented on the lack of redness.  :-)  I saw it myself.  There is a remarkable lack of redness on his left side!  That's progress!

The surgeons are hoping that we'll be able to stop the antibiotics soon.  Billy has been on two antibiotics (vancomycin and something else), and an anti-fungal.  Today, they stopped the anti-fungal because there hasn't been any hint of fungus in his system.  If they're able to stop the antibiotics without seeing a fever, it means that Billy's body is strong enough to fight the infection on its own.  We're praying that will be the case.

The surgeon told us that we're taking this a little bit at a time.  We're talking about slow progress--and quite frankly--we're okay with that.

2.  The Realization that This is Going to Take a Lot of Work.  You can't run a marathon by training for a day, or even a week.  Training well means going out day after day, week after week, and putting in the time on your feet.  And you can't heal from a serious infection and beat cancer in a week.  This is going to be a long journey.

3.  You Have to Figure Out a Way to Measure Progress.  In running, maybe it means you ran the same route a bit faster this week than last week, or you increased your "long run" by another mile.  Guess what!  Billy has made progress.  He got up and walked today!  It wasn't far--but it was farther than he walked last week.  (Last week, he didn't really walk anywhere.)  And he even sat in the chair today.  It hurt, but he did it, which is quite remarkable, because he has been stuck in bed all day.

4.  We Need a Big Cheering Squad.  And I think we've found one.  People keep joining all the time.  Today, we received a HUGE care package from Ft. Rucker--the place where Billy learned to fly blackhawks.  There were hats, medals, t-shirts, name it.  Billy's room is starting to look like a pilot lives there!  :-)

The orange t-shirt is from my Uncle Paul. We added the red and black ones from Ft. Rucker today.

More gifts from our cheering squad.

5.  There Are All Kinds of Reasons to Give Up--and You Have to Ignore Them to Finish.  There are all kinds of people who might doubt you will make it, and there are a whole slew of excuses.  I've never run a marathon before, and I could easily let that keep me from trying.  But "I've never done that before" sounds like a lame excuse, and it's sure not one Billy is using.  The doctors have told us the statistics.  Few people--very few--beat gastric cancer, especially if it's stage IV.  The "odds" are not good.  But we received a card in the mail just this week from a woman who works with soldiers.  And she told us about a soldier who was diagnosed with stage IV gastric cancer last January.  He was medevaced back to the States.  Miraculously, his cancer went into remission over the summer!  Billy wants to be able to fly again, and he's working toward that--one step at a time.

6.  Sometimes You Have to Train "One Telephone Pole at a Time."  Early on in my journey as a runner, I often felt like stopping.  So I would pick a telephone pole ahead of me, and I'd tell myself that I could stop once I reached that pole.  Just before I got to the pole, I'd pick another one, and I'd repeat the message.  One telephone pole at a time, I'd finish a 3-mile run without stopping.  Eventually, I finished a half marathon.

We're taking it one day at a time here.  Billy's perseverance in the daily struggle is quite impressive!  He's asserting his independence when he can [giving us huge eye rolls when the nurses step in to do simple things that he'd rather do himself.  :-) ]  His willingness to try walking--even though it was painful--is inspiring to watch.  He's a fighter, and he has a huge WILL to live.

Thanks for everything!  We couldn't do this without all of you.


Note:  A number of you know that I love running, and I'm usually very committed to it.  You've also known that it was hard for me to leave the hospital to go for a run.  I didn't want to miss anything that was happening here.  Well, you'll be happy to know that my running hiatus seems to have come to an end.  I've gone on a run eight times in the last two weeks (thanks to the company of Bobby, Danny, and Rob)!  And we're planning on training for a 5K.  Maybe we could even get a group of us together to run a 5K for Billy sometime in the next month.  If you're up for something like that--or if you know of a good 5K near Walter Reed--let us know!

Monday, October 25, 2010

Fun Surprises!

Life has been a lot more fun over the past week or so.  Things are still a bit unfamiliar, and life is very different than it had been—but now that Billy’s infection is somewhat under control, daily life seems a lot less heavy.

Saturday was a great day!

Bobby, Danny, and I got up around 9:00am to do some “corporate exercise” (as Bobby called it), and then we went for a run.  We washed up and prepared to meet my mom and our friend, Melissa, for lunch in the courtyard.  (Every weekend, there has been some kind of free catered lunch for everyone “on post.”  This week, there was all kinds of German food for Oktoberfest.)

As I sat down to eat, my mom came up to the table, and someone covered my eyes from behind.  I felt the hands…definitely a woman’s hands.  They were small.  Smooth skin.  A ring on the right hand.  None on the left.  “She’s definitely not married,” I said.  Everyone laughed.  I had a suspicion in my mind, but immediately dismissed it.  It couldn’t be Sara…but it was!  My room mate, coworker, and friend—Sara—had driven down to visit me from State College.  I LOVE surprises—and few people ever manage to pull them off for me.  But somehow Sara does—and she gets my family to help her do it.

(She met Billy through facebook last February when she was trying to figure out the recipe for my traditional birthday dessert.  And my mom had known since Wednesday that Sara was planning on coming!  Those three are so sneaky!)

We all finished lunch, and then Sara and I headed to our rooms to drop off some mail she had brought for me.  I started to show her around, and then I realized she had already been there!  On the bed was a turquoise-colored bin, full of some of my things.

Evidence that someone had been in my room...

I turned to put some leftovers from lunch in the fridge, and I saw more evidence.  It had been nearly empty earlier that morning, and now it was fully stocked!  I was blown away.

A fully-stocked fridge.

“What in the world?” I asked, confused.  “Your mom helped me load the fridge earlier,” she said with a smile, clearly pleased that her surprise had worked so well.  But she wasn’t done with the show-and-tell.  “I know you haven’t been able to cook here,” she said, “so I brought you a few things.”

But before you’ll understand how amazing all of this is, I need to share a little more about myself.

On August 20, 1993, I was diagnosed with type 1 diabetes.  I had gone to the doctor’s office for a sports physical for 7th grade volleyball, and we found out that day that there were tons of large ketones in my urine, and my blood sugar was 732mg/dL.  (Normal is around 80mg/dL.)  I was admitted to the hospital that afternoon.

It’s amazing how a diagnosis can change everything. 

It’s hard to explain all the ways that diabetes has affected my life.  I don’t let it limit me from living life as fully as I can—but it certainly makes life more challenging.  I try to eat carefully, to exercise daily, and to keep my blood sugars in my target range as much as possible.  It requires a lot of time, effort, resources, and perseverance—among other things.

In type 1 diabetes, something crazy happens in the immune system.  For some reason, the body decides that the pancreas—or, rather, the cells in the pancreas—are the enemy.  It’s the job of the immune system to kill enemy objects in the body, and so the immune system attacks some of the cells in the pancreas.  Those cells make insulin.  When I was diagnosed with type 1 diabetes in 1993, it meant that my body would eventually no longer be able to make any insulin.

Why does insulin matter?  Well, when you eat, the food gets broken down into sugar.  The digestive system places the sugar in the blood stream.  Insulin allows the sugar to pass from the blood to the muscles, so that the body has energy.  Without insulin, the sugar stays in the blood, and the muscles starve.  The muscle tells the liver, “Hey, we need more energy!”  So the liver says, “Right, I’m on that,” and starts breaking down fat and turning it into sugar.  The sugar goes into the blood, and the liver thinks it’s done.  But there’s no insulin.  So the muscles repeat their message.  The liver breaks down more fat.  And the blood sugar continues to rise.

That’s why, on August 20, 1993, my blood sugar was 732mg/dL.  It’s why my body had lost so much weight (20 or so pounds over 2-3 weeks).  I was a very sick kid.

To deal with this situation, a person with type 1 diabetes takes insulin.  And checks her blood sugar level often.  And exercises.  And watches the kinds of foods she eats.  And drinks water.  And takes vitamins.  And does any of the 50 other things that people with diabetes do to be healthy.  It’s a daily job, and it’s a big job.

Eye damage.  Kidney damage.  Damage to the circulatory system.  Heart problems.  Gangrene.  Amputations.   It’s not good.  Every time the blood sugar goes too high, it can cause damage.  And low blood sugars can be dangerous.

Lots of things affect the blood sugar.  Exercise can make it go down.  Food makes it go up.  Different kinds of food affect the blood sugar in different ways.  Insulin makes the blood sugar go down.  It’s a crazy balancing act.

Usually, I check my blood sugar often.  To control my levels, I take a certain amount of insulin, based on the carbohydrates I eat.  So to take an accurate dose, I count the carbohydrates I eat.  Often, I weigh my food on a scale, or measure it with a measuring cup.  If I can’t measure, I have to guess.  Sometimes I’m right; sometimes I’m wrong.  Some foods are easy to guess—like green vegetables.  And some foods are really tough, like breaded chicken tenders or pizza.

Here at Walter Reed, we have a place to stay, but it’s sort of like a hotel.  We don’t have a kitchen, so we eat in the cafeteria most of the time.  (And the cafeteria has lots of foods like breaded chicken tenders and pizza.)  That means lots of guessing for me.  Also, unfortunately, the cafeteria food here isn’t all that healthy.  Ironically, the hospital cafeteria food can make controlling my blood sugar really difficult. 

And all of this is what makes Sara’s surprise for me so amazing.

Before she came, she spent hours and hours cooking for me...

  • She made my special kind of pasta and measured out individual portions.  Then, she put each serving in a baggie, and labeled each bag with the nutrition facts.

Barilla Plus Pasta (Made from Beans!), divided into 2oz Portions, each in its own baggie--and all in a big bag with the nutrition facts written on it!

  • She made spinach and beef enchiladas on low carb tortillas (my favorites!), and wrapped each one in its own Ziploc baggie.
  • She bought me two containers of FAGE  Greek yogurt, because that’s what I usually eat for breakfast every day. 
  • Because veggies are so easy for me to guess on, and because they’re so good for me, I’ve learned to cook them in all sorts of fun ways.  I love to eat them!  And I love to teach people how to cook them.  This past year, I introduced Sara to roasted veggies, and she loves them that way.  So guess what!  She roasted a bunch of veggies and packed them in bags for me!
  • And…she got everything together so that we could make some my favorite slow-cooker chili recipe.  I already had the slow cooker with me.  She brought kidney beans, canned tomatoes, tomato sauce, a can opener, containers of spices, measuring spoons, diced peppers and onions, and already-browned ground beef!  It’s all ready for me to combine in the slow cooker, so that we can eat some delicious, healthy, carb-counted meals!  

Ingredients for my favorite chili recipe!

We have no way to brown the ground beef, or cut veggies, so she did all that too!

I’m here to care for Billy and to be with my family.  If I absolutely need help, I’ll ask—but if I can do something on my own, I will.  [I know, I know.  I should ask for help.  People tell me that all the time!  And they tell Billy the same thing.  We don't listen very well.  :-)]  I don’t want to take things I don’t need, and I don’t want to ask too much of people.  I would never have thought to ask for such a gift!  And I am blown away by how much Sara knows me and loves me and has made it easier for me to be here.  Food is a simple thing, really.  But for me, it can be so complicated.  Sara’s work made food easier.

It wasn’t always this way.  When Sara and I first started living as room mates, we didn’t always get along very well.  Sara didn’t understand why I spent so much time preparing food.  But she’d hear me talk about diabetes, and she heard me talk about the ways I felt really loved by my brother Billy (especially the ways he’d do things for me or spend time with me).  Sara was determined to love me, so she started to get creative… 

It’s not that diabetes is a drag.  I certainly don’t want to burden anyone else with it.  But if I’m completely honest, it hasn’t been the easiest thing for me here.  And without me even saying much about it, Sara knew what I’d need, and she worked to make that happen.  And she surprised me with all of it!  It’s something Billy would have done.  One of those ninja-like moves.

It makes me think of Billy, and of my mom.  The three of us love surprises, and we love surprising other people.  So Saturday was a good day…full of some of my favorite things and favorite people.  And Sara finally got to meet some of the family I have talked so much about.  She’s definitely a keeper!

Michelle and Sara

So how is Billy?
He’s doing well!  Despite being stuck in a hospital bed (it’s too painful and draining to get up and walk), he smiles often.  His sense of humor is very much alive, and he seems to get a kick out of all the times my brothers pick on me.

The infection in his side is still healing.  One of the surgeons made a small incision on Saturday morning, and the infection has been draining ever since.  The surgical team is hoping that the infection will drain all the way and heal fully.  His white blood cell count is at 7, and the normal range is 4-10, so his immune system seems healthy.  If the infection in his left side heals fully, they want to try stopping the antibiotics to see if his body handles it well.  If there is no fever at that point, they can discontinue the antibiotics altogether.  We’re praying for that.

People have been asking about chemo.  When’s he getting the next round?  Chemo is incredibly hard on the immune system; it can knock a healthy immune system down to almost nothing.  So it’s important that a patient have a very healthy, infection-free body before any chemo gets administered.  Billy can’t have chemo until the infection is all gone.  Chemo is also hard on the liver, and Billy’s liver hasn’t been working at its full capacity.  Until his liver is working right, he can’t have more chemo.  So those are some things you could pray for—a healthy immune system, no infection, and a fully-functioning, healthy liver.

Billy also hasn’t been able to eat, but he’d like to!  So please pray for his intestines and his stomach to begin working properly.  Billy would love to take out the NG tube and to enjoy food again!

For now, we’re taking things one step at a time.  The step we’re on is caring for the infection in his side and waiting for that to heal…

Thanks for all of your visits, words of encouragement, cards, letters, gifts, and prayers!  We really appreciate it!

Wednesday, October 20, 2010

Getting to Walter Reed

Some days, there’s not a whole lot to say.  At this point, being in the hospital is starting to feel “normal”—as if being here could ever be normal.  There’s a sort of routine to things—though the routine can be interrupted at any point.

I didn’t get to see Billy a whole lot today, but when I asked about his day, he said it was “uneventful.”  Given the journey over the past month or so, it’s nice to hear him say that.

Billy was diagnosed on September 23, 2010—just under a month ago.  I’ve told a lot of the stories that have happened over that time, but there’s a big one that remains untold:  how we got to Walter Reed.  I was planning to tell the story soon after we arrived here—but the pace of life took off at high speed once we discovered Billy’s infection.  My priority became relaying the details of the infection and Billy’s progress in fighting it.

Today, Billy is doing amazing!  My mom spoke to someone today who nicknamed him “Chief Miracle Baby,” because he continues to defy the odds and predictions of the doctors.  Billy is healing from the infection in ways the doctors never expected!  When Billy got the infection, a surgeon by the name of Dr. Hueman got involved—and we’ve talked to him almost daily since we arrived here.  Billy was so sick, Dr. Hueman thought he’d never heal without surgery to “clean out” the infection.  Even though surgery would be incredibly risky, Dr. Hueman thought surgery was better than the alternative.

During the past 2 weeks, Dr. Hueman has recommended surgery to Billy.  Initially, it would have been a highly-risky surgery to “clean out” his abdominal cavity.  By October 14, his recommendation changed:  a less-invasive but still risky surgery to drain an infection in his side, and (if necessary) the original abdominal surgery.  Billy had developed an infection on his left side due to one of the procedures to drain fluid from his belly.  The site was puffy, and the redness was spreading down his leg.  Dr. Hueman was concerned about a major infection, or a leak in Billy’s bowel or intestines, and possible dead tissue in his leg.  He felt an urgent need for surgery.

But October 14 was Billy’s 26th birthday, and as the patient, he “outranks” everyone else in terms of making decisions for his medical care.  He said he’d consider surgery (if his pain got worse), but not on his birthday.  He figured he’d take his chances and “wait and see.”

Every day since then, Dr. Hueman has come back.  He has continued to recommend surgery, concerned that Billy’s body might stop responding to the antibiotics.  But Billy has persevered.  “Against medical advice,” he has chosen to wait.

This morning, Dr. Hueman changed his recommendation.  He’s no longer recommending surgery!  (Do you remember me asking you to pray that Billy wouldn't need surgery?)  The infection seems to be clearing up.  Billy’s left side is still swollen, infected, and painful—but it’s getting better!  His leg is no longer in pain, and the infection seems to be a LOT SMALLER!

The bigger issue still remains…the gastric cancer that has spread outside his stomach.  His stomach still doesn’t work, so he can’t eat anything.  The doctors aren’t sure if Billy will be able to tolerate another round of chemo.  It’s a bleak picture, when we look at the medical expectations.

But we’ve been praying for some specific things, and those things have been happening!

Just last night, Bobby, Danny, my mom, and I stood around Billy’s bed, and the 5 of us prayed for these things:
  • Billy’s temperature measured around 100°F.  We “prayed against” any kind of fever, asking God to bring his temperature down.
  • We were told that the NG tube was draining A LOT of fluid from Billy’s belly.  My mom prayed for the fluid level to decrease by half.
  • For the tumor to start decreasing in size, so there would be less pain.
  • For anything negative that had occurred during his physical therapy session earlier in the day to be reversed (something had “pinched” and was causing him pain).
And today, guess what happened!
  • His temperature decreased.  It was 99° F.
  • The fluid level from today is about ½ of what it was yesterday!
  • The infection site was less red, though still protruding slightly.
  • And his infection had decreased so much that the surgeon no longer recommended surgery!    
It seems as though God is responding to the very details we’re praying for.  So please keep praying!

Here are some things we’re currently asking God for:
  • That Billy’s pain would go away.  Billy is taking a lot of dilaudid, and he’d like to be able to move around without painkillers.  
  • Billy’s infection (the one in his side and anything else in his belly) to heal COMPLETELY.
  • Billy to be able to go outside and enjoy it (without a lot of pain).  Currently, a small move just inside his room hurts a lot and takes a lot out of him.  There are supposed to be some country musicians here this weekend, and I’d love to be able to take Billy outside to listen to them.  
  • Billy’s stomach and intestines and everything else in his GI tract to start working, so he can eat again!  He’s still unable to eat and has the NG tube down is throat.  

The Journey to Walter Reed
Billy was diagnosed at Baptist Hospital in Miami.  No, he never lived in Miami.  Baptist Hospital is a civilian hospital, and it made no sense (in terms of how the army works) for Billy to be there.  He had been on leave for a bit, and was taking time to visit friends (all over the world) before he reported to Hawaii in mid-October.  He had just returned to the U.S. from a visit to his friend Nate's family in Germany, and was on vacation with friends in the Florida Keys.  Billy went to the emergency room on Monday, October 20, the day before he was supposed to fly to Costa Rica for a meeting.  That night, they admitted him to the hospital.

Thank God Billy wasn’t in Germany or Costa Rica when he was diagnosed!

As I’ve mentioned before, the doctors in Miami diagnosed Billy on Thursday, September 23.  That day, my mom arrived in Miami, just after Billy heard his diagnosis.  I flew in the next night.

From the time my mom and I arrived, we have never had to pay to stay anywhere!  Friends—people who have become part of our family—have fed us and housed us.  Tyler and Melissa opened up their home.  Melissa’s family fed us every day we were in Miami.  Adrienne drove from Fort Rucker to Miami just to serve us (by cooking food, running errands, doing laundry, etc.)  And the support of family and friends has been amazing!  My Uncle Paul (retired from the army) lives in Florida, and he spent a lot of time with us in Miami.  His hugs and affirmation helped in more ways than I can express.  Nate flew in from Germany.  His presence was a huge benefit to Billy.  Because Nate and my Uncle Paul know the army, they’ve been able to help us in some key moments.  It feels like God has provided for needs right and left!

Uncle Paul, Aunt Janet, and My Mom (Jill)

(Even before I left State College, friends—and people I had just!—met handed me money to make sure I could get to Miami to be with Billy!)

But there was an issue that came up in Miami…Billy was a warrant officer in the army, and so the army got to decide where Billy’s treatment would happen.  From what I understand, by army protocol, Billy needed to be seen at an army hospital, and standard procedure meant he would go to Fort Gordon to be assessed, and then he’d move to a facility for long-term treatment.

But that didn’t make a whole lot of sense to us.  We knew that Billy was REALLY sick.  A move from the ICU at Baptist Hospital up to the 5th floor (oncology unit) took a huge toll on him—and that was inside the same building.  How could Billy handle multiple moves from one hospital to another?

My mom began having conversations with Major Smith from Fort Rucker.  Somewhere in the process, we came up with the idea of sending Billy directly to Walter Reed, so there would only have to be one move.  Walter Reed has a reputation as a facility with excellent pathology (the way doctors determine diagnoses) and access to phenomenal cancer treatment options.  It sounded like a great idea, and Billy was all for it.

Everything seemed to indicate that a move would be happening soon.

Except for one thing…there were no orders to move Billy anywhere.  And without orders, nothing would happen.

Somewhere in all of this, my cousin Pam entered the story.  Pam is, as my Massachusetts cousins would say, “wicked smart.”  She works for Massachusetts General Hospital, and she has a teaching appointment at Harvard.  She teaches doctors, and she’s part of a group that does lung cancer research.

Pam is also amazing at networking.  She was recently at a meeting, and she mentioned Billy’s condition to some of her colleagues.  These colleagues are connected to all kinds of people.  One of them talked to someone—and somewhere in all of those conversations, we were given a name:  Col. David McLeod, a urologist at Walter Reed with a reputation for getting things done.

So Pam sent a few emails on Friday, October 1, and soon we were in direct contact with Dr. McLeod.   It makes sense that we’d talk to a doctor at Walter Reed—but he’s a urologist, and Billy has gastric cancer.  Pam contacted him on Friday, but he decided to spend his weekend working through “red tape” to get Billy to Walter Reed.

Dr. McLeod is the kind of man who makes things happen.  At 6:47pm on Sunday, October 3, we got an email from him saying “Tomorrow I believe that I can report this situation is being resolved.  Will keep everyone in the loop…”  On Monday, October 3, he emailed saying that everything was in place, and he would be the “accepting physician” (which made no sense, since his specialty had nothing to do with Billy’s diagnosis).  “Look for a hiccup in all this,” he wrote, “but when it happens we shall nip it in the bud…  There is no way that our patient will be going to Georgia.”

I should make a quick side note here…  We have no personal experience of Fort Gordon.  We just knew that Billy was VERY sick, and there was no way he could have survived multiple transfers.  Baptist Hospital wasn’t a “cancer center”—and given Billy’s diagnosis, he needed to be in a place that had some hope for him.  During conversations with people, it was clear that no one really understood how serious Billy’s situation was.

But Pam got us connected to Dr. McLeod, and Dr. McLeod understood—and he worked to move mountains.

My Mom (Jill), Dr. McLeod, and Me

On Wednesday, October 6, the army transported Billy to Walter Reed.  He rode in an ambulance to the airport (sirens blaring), and then he flew on a private jet to Andrews Air Force Base.  From there, a Walter Reed ambulance got him to the medical center.

The Walter Reed Ambulance

Billy only remembers one thing about the trip:  walking off the plane.

Walking off the plane.

But it wasn’t a walk of triumph.  We didn’t know it yet, but Billy was already sick with a serious (septic) infection.

The medical staff here at Walter Reed have been amazing, and they’ve gone to great lengths to care for Billy.  The situation here is completely different than the one in Miami.  Physicians work in teams (it’s a teaching hospital), and they’re willing to spend as much time with us as we need, answering all of our questions.  They know this is a tough situation.  I have appreciated their medical expertise—but their care for us as people—as Billy’s family and friends—amazes me.

I am discovering that some people in the medical field work here because they’re very intelligent.  But the ability to understand the human heart can seem non-existent.  However, it’s like some people were born to do this sort of thing—to care not just for the physical health of a patient, but to care for the health and well-being of the patient’s family as well.  Watching those sort of people is an inspiring experience, and it has touched me deeply.

  • I’ve thanked Dr. Klotz (an oncology fellow) for all of his patience and help with Billy, and he told me it was “an honor” to get to practice medicine.  
  • Lieutenant Strong—the charge nurse in the ICU—humored my questions about nursing as he prepared to move from the ICU to a room on the oncology ward.  
  • Ya Ya (an amazing ICU nurse) has become the standard by which we measure nurses.  Her patience and demeanor—especially in an intense environment like the ICU—helped set all of us at ease.  
  • Even Sam—a nurse here on the 7th floor who is not even assigned to Billy—has jumped in to make sure that our needs are met right away.  One night when I asked about cleaning Billy’s room, Sam assured me it would happen “within the hour.”  And then he jumped in to help us move the furniture out of Billy’s room.  True to Sam’s word, the room was clean within 30 minutes.    

Here at Walter Reed, we’re being taken care of.  I’m a little weary of the cafeteria food—but I think that’s my only complaint.  The company has been good.  We keep meeting phenomenal people.  And the oncologists and surgeons—as incredibly intelligent as they are—are also humble and caring.

I like finding the “perfect” gift for someone—the kind of gift that fits a person and a situation just right.  Over the past 2 weeks, the way the little details seem to be getting worked out makes me think that God is up to something…

Monday, October 18, 2010

Uncertainty and Hope

I spent the night in Billy’s room last night (Saturday night), and I woke up this morning to a doctor’s voice.  There were two of them, standing beside Billy’s bed, and my brain started working just in time to hear, “Your infection is getting better.”  Better?  The infection on his left side?  The one that the doctors doubted would respond to the antibiotics?  I was excited to hear it!  But how could I have missed the entire conversation? 

In the face of cancer, sickness, and the monotony of the hospital room, it has been difficult to remain hopeful.  On Friday morning, I was in the room when the doctors made their rounds.  The surgeon—the one who reminds us of Matt Damon and speaks with the confidence of Brad Pitt—told us that Billy’s infection seemed to be improving, despite what he had originally thought…but he still recommended surgery.  “Besides the infection,” he said, “there’s still the issue of cancer.  Even if you heal from this infection, I don’t know that you’ll ever be able to take more chemo.  And the kind of cancer you have remains incurable…”

It was a bleak picture, and I’m not sure how Billy took it.  He understands what’s going on.  Some of the doctors have asked him to repeat back to them what he knows of his condition.  He knows.  It’s a tough situation. 

I keep thinking about Anticancer (David Servan-Schreiber), the book I started reading.  The author talks about statistics and prognoses. 

In nature, the median is an abstraction, a “law” that the human mind tries to impose on the diverse profusion of individual cases. 

He’s right.  I think we use statistics to try to explain and predict the world around us.  But we can’t control it, and we can’t really predict it.  The doctors have certain ideas about how long Billy may or may not have.  But they don’t really know.  All we know is what they’ve seen, and they’ve seen gastric cancer to be a really nasty diagnosis.  But they’ve rarely seen it like this in someone so young.  (Billy turned 26 on Thursday.)

It’s hard to be in the hospital, not really knowing how long we’ll be here.  In a way, I hope we’re here for a long time.  I treasure every day I get to spend with my brother.  But I don’t want to be here for a long time.  I want him to heal quickly, and to be able to move forward in life.  He’s a Blackhawk pilot for the army, and he has yet to fly a single mission! 

When I think about what the doctors keep saying, it makes me sad.  When I get tired and weary, and I spend time with someone who makes my heart feel safe, I cry.  It’s not supposed to be like this! 

At the same time, I look forward to every day I get to spend with my brother… 

He seemed down yesterday, even after having a surprise visit from two of our cousins (Justin and Katie), and my mom’s brother (Uncle Jack) and sister (Aunt Robin).  He was pensive, sitting in a room full of people, but not really involved in the conversations.  After a while, people decided to go get dinner, and we planned to watch a movie as a family.  While people waited to start the movie, I went in to check on Billy—and we had a great time hanging out together.

We got to have a ‘Chelle-and-Billy conversation…just like the ones that started in high school when we’d ride to school together.  During my senior year, I had gotten a car (the same one with the missing speaker cover).  I had promised him that if he’d scrape my windows and warm the car up, I’d give him a ride to school.  It was a great deal…I didn’t have to spend much time in the cold at all, and he got a ride (5 minutes in the snow, getting the car ready, instead of 30 minutes walking to school in the freezing cold).  Those shared rides to school didn’t seem like anything big at first, but they were the beginning of something deep and special.

Many people see my confidence.  They think I’ve got things pretty well organized, and I don’t seem to ask for help all that much.  There aren’t many people who know the places where I feel weak.  But Billy does.  He makes it safe for me to share my heart with him—and I think I do the same for him.

I will always treasure the ‘Chelle-and-Billy conversation we had on Saturday night, just as I’ll treasure all the ones we’ve gotten to have over the years.  My heart feels full, because I know how much he loves me, and I see how much he trusts me.  My relationship with my brother is evidence of time well-spent, time just being together, talking about life, and being willing to share when the deeper stuff comes up.  Billy said things in that conversation that I’ll remember for the rest of my life—things that only he could say to me as a brother who knows me well. 

My relationship with Billy is incredibly special to me, and I can’t imagine a world where I can’t share life with him.  My heart breaks when the doctors talk about prognosis.  How is it possible that Billy might not be there?

The reality, though, is that we don’t know how much time Billy has left.  It could be very short, but it could be years.  We follow a God who does impossible things (Genesis 14:18, Luke 1:37), and I’m hoping for a miracle. 

But Billy needs help hoping too.  He has been more pensive these days, and I don’t know everything he’s thinking about.  But I do know that visits from friends and family provide things that medicine cannot.  I got to ask him about his birthday, and the best part for him was getting to see people he loves.  He really enjoys visitors!  So feel free to keep coming by.  We enjoy getting to spend time with you. :-)

Things to Pray For
  • The “distension” (swelling) in Billy’s stomach to go down
  • The infection in Billy’s side to be healed
  • Pain in Billy’s belly to decrease and disappear
  • Billy’s immune system to fight against the cancer…and win!
  • Tenacious hope—for Billy and for all of us

A note on visitors…It is important for visitors to be healthy!  Billy’s immune system isn’t as robust as it used to be, so he needs us to look out for him.  That means washing our hands before we touch him or hand him anything.  And it means that if you’ve had a flu shot, you probably shouldn’t stop by for a little while.  

Saturday, October 16, 2010

Time to Celebrate!

Billy’s Birthday Celebration
We were all looking forward to Billy’s birthday.  I’m not sure about everyone else, but for me, it seemed like we had even more reason to celebrate this year:  despite his having been septic, and the doctors thinking he would not have made it through last weekend, he did!  And every day, it seems like he has gotten just a little bit better.  So a party seemed especially fitting.

There was no official time for the celebration.  We tried, but schedules in the hospital don’t seem to exist.  Or maybe it’s more like the patient’s life just revolves around whatever the doctors and nurses need.  We collaborated with friends and family to prepare some fun things for the day, and sometime in the afternoon, we started celebrating.

Even though Billy can’t eat cake (he still isn’t eating anything), we got one anyway so we could invite doctors and nurses to celebrate with us.  It’s a family tradition to get a picture of the birthday kid with the cake.  Billy complied.

People keep asking us how Billy got the middle name José.  Well, it is and it isn’t his real middle name…

His legal name was William Joseph McCotter Bohren.  (A long name, I know!)  When he went to fill out his name with the army, he couldn’t fit all the letters in the spaces.  So he adjusted it:  MCCOTTERBOHREN, WILLIAM JOSE.  And that’s how the hospital knows him.  Nobody can quite figure out the 14-letter last name, or how in the world José came to be his middle name…

We sang when we brought the cake in the room, and then Danny used the remote control to make the Blackhawk launch off of the cake.  Bobby had found it somewhere on Amazon, and it actually flies!  (Believe me, I know.  My brothers tested it the night before, and had fun making it dive-bomb toward my head.) 

We had lots of guests, lots of laughs, and lots of fun…

The birthday guy!

Friends and Family [See Nate, no mustache yet. :-)]

Kelsey's hand-made pillowcase

A highly-appropriate birthday card.

Billy and the "Mr. McCotter Head"...complete with his own NG tube (a gift from Kelsey)

Bumper Stickers from Rob

Medically-speaking, Billy’s birthday didn’t start out the greatest.  Over the past two weeks, he had undergone several procedures to remove extra fluid from his belly.  One of the more recent ones resulted in an infection on his left side, starting at the procedure site.  Over time, the redness and swelling had moved down his leg.

During the morning of his birthday, the medical team came in for their rounds, strongly suggesting that Billy have surgery on his left side to drain any infected tissue.  There was possibly a risk of dead tissue, but also a risk that he wouldn’t heal well from the surgery.  Given Billy’s situation, surgery poses a lot of risks.  But not having surgery poses risks as well.  The stakes are high. 

In most cases, higher-ranked members of the army have authority over those with lower rank.  For his age, Billy’s rank is fairly high.  (Warrant Officer 1)  But he’s still well-below most of the doctors.  In this situation, however, Billy has the final say-so.  The doctors make their recommendations, and then Billy gets to decide.

For his birthday, Billy decided to forego surgery.  He wanted to wait and see if the infection in his side would go down.

Billy’s birthday was fun—but it wore all of us out.  We all crashed early...

After the Party
“Normal life” in the hospital resumed on Friday—as normal as things could be.  The doctors came back to evaluate Billy, and recommended surgery again.  The infection hadn’t gotten any worse—but it hadn’t gotten any better either.  The surgeon wanted to drain everything he possibly could…but Billy wasn’t so sure he wanted to undertake such a risk.  He decided to wait again.  If the infection in his side became more painful, he’d be more inclined toward surgery.  But if it wasn’t absolutely necessary, he wanted to avoid it.

Today, the doctors came back again.  And this time, we heard some good news!  Billy’s white blood cell count is coming back down (it had been elevated due to the infection in his side), and the infection seems to be getting a little better.  The surgeon—who reminds my brothers and me of Matt Damon—seems incredibly confident.  He thinks surgery is best, and he wants to go for it.  This morning, he admitted that he never expected Billy to do as well as he’s been doing…that Billy is defying the odds, in a way.  (First, by surviving past the weekend, and second, by his infection in his side starting to go down on its own.) 

But Billy is still very sick.  The cancer is nasty and aggressive.  There’s fluid around his lungs, and over time, it’s increasing.  His stomach wall is thickened, as is the intestinal wall.  There are pockets of fluid all around his belly that they can’t extract, unless they do a huge, invasive surgery (different than the surgery on his side).  And Billy might never recover from a surgery like that.  It’s a delicate, risky situation. 

It’s a tough road to walk, watching your brother battle cancer and infection and boredom in a hospital bed.  A couple of days ago, we had a really good time praying with Billy as a family.  We listened to Healer, and ended with one of Billy’s favorite Psalms—Psalm 46.

It’s a hard thing to stare cancer in the face and hold onto my faith at the same time.  It’s hard to know how to live when day in and day out, the doctors paint a grim picture.  Billy is making small steps forward, but he still has a nasty form of cancer that is medically incurable.  Sometimes, the journey still feels impossible. 

In the past, running has been a good outlet for me.  It’s a place I’ve prayed, thought about life, and fought with God.  And it’s a place where God has taught me things about life and about myself. 

Many of you know that about me, and you know that I’ve been fairly disciplined about running—in the past.  But it has been hard to run here.  In leaving, I feel like I’ll miss out.  But I’ve found a few new running partners (Bobby, Danny, and Rob).  We’ve gone out a couple of times, and it’s been good.  I hear it’s important to do some “normal” things in the middle of times like this, so I’m trying.  Danny, Bobby, and I are going for a run now…

Thursday, October 14, 2010

Celebrating Billy's Birthday...on the Web

Rob's sister, Tricia, put a little post together for Billy's birthday.  If you like pictures, you'll definitely want to check out her post!

She made this...

and is getting an online celebration of Billy going.  If you're reading this blog, or reading hers, would you leave a comment about who you are and where you're from, and how you found this story?  We know there are a ton of people praying for Billy...and we're curious about who all of you are...

Thanks for praying and for celebrating with us!

This comes from a "blog hop"...

When Life Hands You Lemons...

Today is Billy's birthday!

He's smiling, witty, and making the best of it.  He's sporting a new look...not his first choice, but when the chemo started making his hair fall out, he decided he wanted to do something about it.  Some of the hospital staff brought up the idea of shaving.  "Do you know anyone you'd want to shave your hair?" they asked.  "Oh, my sister would love to do that!" he said (not knowing that I had never used an electric razor before).

We started on his hair on Tuesday evening.  Bobby had picked up a new electric razor from the Red Cross, and it was charged and ready to go.  It took a while to finish, but I think it turned out really well!  It's a new look for Billy--one he's never worn before.  But I think he looks good!  [Even if I do say so myself. :-)]

The whole process was a little bit of heaven for Billy, I think.  Ditching the hair felt great.  (I also took care of the beard.)  Then, I got one of those waterless shampoo caps, and my mom and I massaged his head.  He loved it!  We toweled him off, and then put lotion on.  The expression on his face said it all.

For a bit of camaraderie, Bobby decided to ditch his hair too.  Here's a new photo of the partners in crime...

Billy and Bobby

And here are all the siblings.  Me.  Four brothers.  And a new sister as of last summer (when Blair married Bobby).

Back, from left:  Chris, Bobby, Blair. Front, from left:  Michelle, Billy, Danny

You're welcome to post birthday comments for Billy.  He's been reading the blog, so he'll see them.  He's snoozing we'll do birthday stuff later.  I can't fill you all in on the plans yet, because we're trying to keep some of them a surprise.  I'll share details later.

We're going to celebrate well today...but we have to be creative.  A birthday in the hospital is a new challenge.  And Billy is NPO...which means nothing by mouth.  (Well, he can drink water and eat jolly ranchers.)  But there are fun plans in place...and it should be a good day.

We keep hearing that Billy has defied the odds.  He was "septic" last Thursday, meaning that his infection was REALLY bad.  Many of the medical staff didn't expect that he'd make it through the weekend...but he did!  And he's doing really well.  He's on an "up"...

Now, we're on a pause, of sorts.  I want to write more now, but I've been attempting to get this finished all day...there's more to tell, but it's Billy's birthday.  I'll write more later.

Thanks for all of your prayers and support.  For the time being, please pray for the infection in Billy's left side.  It's spreading from his abdomen, down his leg.  Pray that his body would heal quickly, so that he doesn't need surgery.

Wednesday, October 13, 2010

Ninja Stories

One of my favorite things about Billy is his ability to surprise people.  He does this sort of sneak-attack thing, and people don’t realize that he’s been there until he’s gone.  But it’s not just that he’s sneaky.  He’s clever and stealthy as he works to care for the people in his life. 

So it makes me smile when other people leave little surprises for him!

I started a story last night about a little message that Rob left for Billy, not realizing that there would be more to the story.  Here’s Rob’s message from last night.  He left it without Billy knowing.  I think someone pointed it out to him later, after Rob had left.

This morning (Tuesday) when I came in Billy’s room, a second message had been added to the board. 

Case and Hilary Wilson (friends from Fort graduated from flight school with Billy on September 2, 2010) had visited last night, staying later into the night.  I don’t know how late they stayed, but it was definitely after Rob had gone home.  Case is full of fun stories, and it’s clear he likes to pick on people.

As he visited with Billy, he picked on Billy’s choice of helicopter.  Billy had learned to fly a Blackhawk.  Case knows how to fly an Apache.  The joke (or maybe it’s reality?) is that Apaches are easy to fly, and they break down all of the time.  Hence the photo in Billy’s facebook album…

Billy tagged several of his friends as the caveman.  (Nate, Chris, and Case were a few.)  Ah, the jokes between friends.

So I shouldn’t have been surprised to see the following message (to the left of Rob's message) on the board this morning. 

Little did Case know, Rob was coming back.  And somewhere along the line, he left a third message. 

So who wins this one?

The banter made us all smile.  Our whole family agrees…Billy’s army friends are really good for him!

I like to think of Billy as a ninja of sorts.  He has this sneak-attack way of loving people, and he’s incredibly good at it.  My brothers can tell stories about Billy’s ability to find things and figure out surprises without being discovered.  (He used to unwrap and re-wrap his Christmas presents without my mom ever knowing!)  And I have a few of my own. 

My favorite one happened right after I bought my first car.  It was a teal Dodge Shadow ES—not the most premium car, but it was my first one, and I loved it.  Except for one thing.  The speaker cover on the front passenger door was missing a little plastic piece.  The missing piece was no bigger than 2”x3”, but its absence was annoying.  The speaker cover kept sliding around. 

I had taken the car to the dealership to find out if I could get a replacement part.  When I found out that the little plastic piece would cost about $20 or $30, I decided to forget it.  I’d live with the annoyance.

A few days later, I got in my car, and I noticed a new little plastic piece.  I KNEW Billy had been there.  It couldn’t have been anyone else!  Without me knowing, he had gone to the junkyard to get an old piece out of some other Dodge Shadow, paid $1 for the part, and replaced the piece in my car.  But he also got a hold of my car keys somehow, because I always kept my car locked…  It’s things like that, that prove that Billy loves me. 

I think we’ll have some more ninja stories to share about Billy in the future, but for now, I wanted to ask all of you for some.  If Billy has cared for you in some surprise/sneaky way, that sort of “got” you without you realizing he had been there, would you share them?  You can message me on facebook, and I’ll share the story on the blog, or you can post a comment here.

As we’ve hung out with some of Billy’s friends (people who have quickly become our friends as well), we’ve heard story after story of ways that Billy went above and beyond to care for the people around him.  And we’d love to hear more of them…especially the stories where there’s an element of surprise. 

And a quick note on how Billy is doing…  Today was a good day.  His energy was good.  His sense of humor was great.  He slept a lot this morning because there was a bit of hospital drama last night (equipment changes, work orders, fixing things, etc…the usual stuff that can keep patients from sleeping).  But he was up and awake for most of the afternoon and evening.  I think we kept him up until 11 tonight (Tuesday). 

He had a CT scan today, and it helped to give the doctors more of a clear picture on what’s going on in Billy’s body.  But it’s not going to drastically alter his treatment at this point.  There’s still a lot of fluid building up in his body, but now it’s in “pockets” instead of one big area.  This makes it hard to drain the liquid (they’d have to do 5-6 punctures, which is a bit invasive).  The liquid is still infected—probably with both bacteria and cancer.  So if you’re praying specifically, please pray that we’d be able to knock the bacteria out, and that the liquid would thin enough to be drained, or decrease, or disappear all together.  Also, pray that God would protect Billy’s lungs and liver from cancer, and that his bowels and stomach would work again.  He’s got quite the rash/red spot developing on the left side of his belly and upper left thigh.  Pray that God would calm that part of his body, and restore it to full health…  Thanks for praying!

Billy is sporting a new look…but we’ll have to save that for tomorrow (Wednesday). 

Thanks for the love, support, and prayers!

Tuesday, October 12, 2010

Difficult Conversations and Small Celebrations

Every day here feels so long!  It’s not that the days drag on.  They fly by.  But so much happens in a 24-hour period, it’s hard to believe all of it happened in just one day. 

Today, my parents had gotten up early to be at the hospital by 6:30, so they could be there when the physicians made their “rounds” (when all the doctors go around and see the patients each morning).  Somehow, they still missed the rounds. 

Later this morning, my mom and I got to spend some time with Billy in the ICU.  His room was small, so we stood on either side of his bed while he slept.  And all of a sudden, the physicians came by!  We had missed “rounds”—but for some reason the doctors came by again anyway.

This time, it was Dr. Lettieri from internal medicine.  He gave us an update on Billy.  His pain seems to be under control now.  (They got Pain Management involved, and some of the recommendations seemed to be working!)  His platelet counts were low, and that was something they were continuing to watch.  And they were as “on top of the infection as much as they could be,” so they were planning to move him out of the ICU up to the Hematology/Oncology ward.  Back to the 7th floor! 

As Billy slept and we talked, the conversation turned to harder things.  Last Thursday, according to Dr. Lettieri, they would have said Billy might live a few more days.  But it was Monday now, and Billy was doing better than they ever expected!  It was good news.  He was interacting with people more.  He seemed to be in less pain.  After the intensity of the past few days, it felt relieving to hear about Billy’s improvement. 

However, according to the doctor, Billy’s cancer is still a big factor, and it’s a factor they don’t think they can beat.  As my mom asked questions, I could see the pain on her face.  The fear of losing her son was overwhelming her.  The doctor shared some hard news—news I’ve always been reluctant to share.  I want to hold onto hope, to have faith that God could heal Billy. 

So I asked the doctors a hard question.   “I’m writing a blog,” I said, “to keep people informed about what’s going on.  I’ve focusing on celebrating our victories, even if they’re really small ones.  This journey is incredibly hard, and I don’t want to focus on what’s hard all of the time.  But there’s a difficult reality to this.  How do I continue to celebrate, without giving people a false picture of what’s going on?  How do I let them in on some of the things we just talked about?” 

And the doctor recommended that I give you all the full picture—to let you see what’s really going on, and to invite you to choose to hope and celebrate with us, even in the middle of the hard stuff. 

In reality, Billy is very weak.  He’s doing better, but he has lost a lot of strength.  His platelet counts are low, and we’re not completely sure that the infection is entirely gone.  They’re not sure if or when he’d ever be able to take chemo again.  And when Billy was originally diagnosed on September 23, we knew that the only option was chemo.  If they can’t do chemo… 

I know.  It’s hard news to swallow.  I want to fix it.  To try whatever we can.  To extend his life as much as possible…  But Billy is not a science project.  He’s my brother.  And his spirit was never meant to live in a hospital bed.  Everyone who knows him well knows that.

“There are things,” the doctor said, “that we could try to be able to say that we did all we could.  But not all of those things are going to be good for Billy.”  So the question now is about giving him the fullest life possible, for the longest amount of time we can. 

When I think about all of this, it overwhelms me, and I cry.  I can’t imagine life without my brother.  There are so many things we planned—things we talked about (like running the marathon next summer in Hawaii), and things we haven’t spoken much about because life hasn’t gotten there yet (like having Billy in my wedding, or getting to introduce him to my kids…two things I hope for but aren’t yet part of my life).  I always imagined Billy in all of the wedding pictures for our family. 

I think all of us imagined a lot of things, and it hurts to think about those things not happening the way we had planned…

So now, what I’m hoping for has changed.  Big-picture, I still hope for Billy’s healing.  But there are smaller, more tangible things I’m hoping for here…

Today, I got to spend quite a bit of time with Billy in his room.  My family had gone to eat lunch, and I stayed behind to keep him company while he napped.  He woke up after a while, and was far more alert than he had been in a long time, probably since before we left Miami last week.    I told Billy about his infection.  I filled him in on the A-line on his right wrist.  And I got to ask him how he was feeling about moving back up to the 7th floor.  It was really good time with Billy—similar to the time we had shared in Atlanta a month ago.  Talking about life and about deep stuff with Billy, and just spending time with him…that has always been one of my favorite things in life.  And I got to do that today!

One of the life things we talked about was the idea of me going into nursing someday.  I’ve been thinking about it for the past 4 years, and I told Billy about how I enjoy helping people with medical stuff.  “You want to be a water nurse?” he quipped.  I thought for a second, and then I looked at his face.  Aha!  There was that smile!  He was cracking a joke…coming up with a fun way to ask me for some water.  I love seeing that smile, and hearing him joke around!

I shared some stories with him, and messages I’d heard from friends who had sent emails and texts over the past few days.  Sam, I shared some of your recent email about Buddy and some of your memories, and I told him about a few of the pictures you had sent.  He smiled when he heard about the one after you picked them up from SERE school, when they all had little moustaches.  His face said he was remembering good times with friends, and maybe some inside jokes or stories that would make you all laugh.  I know we’ve all laughed as we’ve heard some of them.

When Sam dropped them off for SERE school.

The morning Sam picked them up, 3 weeks later.  Note the mustaches!  

The things I hope for every day are smiles and laughter, good memories, and small signs of progress.  I want Billy to be able to celebrate and remember the friends and family in his life—and I want all of us to be able to do the same.

I know a lot of us are hurting.  It’s hard to see someone we love so much suffer.  And I long for times when some of you get to see Billy and to laugh, share stories, and celebrate his life.  I like seeing the banter that happens between friends.  Billy loves that stuff. 

I have one more quick story to share…and I should probably ask for permission…but I’m going to share it anyway.  I know many of you know my brother as Cooter or Will, but he will always be Billy to me.  And I know that some of you have attempted to use that name to refer to him, only to be reprimanded, or wrestled to the ground, or sprayed with a fire extinguisher.  To family, my brother is Billy.  To the army, he is Cooter or Will.  That’s how he wants it. 

Well, a funny thing has been happening.  As we’ve hung out with army friends, I’m hearing more and more people call him Billy.  How can you not, when that’s the name I use on the blog? 

Anyway, Billy’s friend and former room mate, Rob Smith, was telling me that he used to call my brother Billy all the time, and Billy used to get really mad.  So much earlier, before Rob got here, he sent me a text.  “Michelle,” he said, “please pass this along to Will.  He’ll understand because he hates when I call him Billy.  ‘BILLY!!!!!!!!!  I’m trying to arrange a trip.  I’ll get there as soon as I can foo.  Love ya.’” 

I shared the message with Billy.  And Rob’s message was clear.  Billy smiled. 

Just yesterday, as we were talking about Billy’s sense of humor, and how it seemed to be coming back, I told Rob he should call him Billy.  I thought my brother would appreciate that.  ;-)

I never heard how that went, but I saw the following message on the dry erase board on Billy’s room when I left his room tonight (Monday night).

I smiled.  Well-done!  “Billy, did you see what Rob wrote?” I asked.  "Yeah," he said.  And gave me the biggest eye roll!  So annoyed...  Rob’s message was perfect, because it was done in the slick, sneaky kind of way that Billy often uses (like leaving a case of beer in a friend’s refrigerator before he even knew he was there).  Billy loves people well, and he’s clever in his delivery.  He loves to surprise people!  Most of the time, you don’t know he was there until he’s long gone.

The banter between friends is a fun thing to watch.  And despite infections and cancer and hard questions, today I saw that my brother is very much alive.

Some ways to pray:
  • Pray specifically.  Today, my mom prayed that she’d see Billy sitting up, and that she’d get to see him without all the tubes and wires sticking out of him.  That was NOT the picture we've had recently.  But today, he was more alert than he’s been in almost a week!  And, many of the tubes and wires were removed because they were no longer needed outside of the ICU! 
  • Billy’s 26th birthday is coming on Thursday.  We want it to be a special day.  Pray for creativity in figuring out how to celebrate my brother.
  • For us, as a family, to figure out how to love each other well through all of this.  We’re hurting.  This is really hard stuff.  And we’re all dealing with this differently. 
  • God’s help in making hard decisions as the difficult questions come up. 
  • The fullest, best life possible for Billy.

A note...I've gotten a lot of calls, emails, messages, and texts.  And I haven't been able to respond to all of them.  But thank you!  Thank you for your concern, your encouragement, your thoughtfulness, and your prayers.  Even if I'm not able to tell you personally right now, it means the world to me and my family.  And Billy still can't believe so many people are praying for him!