Christmas Surprises

If someone were to ask us to name the things our family values most, I think time spent together would be near the top of the list.  I can’t speak for everyone, but I’m starting to notice that quite of few of us like orchestrating surprises for the people we love.   It’s not just our immediate family either; it seems to go back a few generations.  

As we’ve spent time together over the past weeks and months, I’ve enjoyed hearing stories of surprises people have pulled together.  My Uncle Jack requested that we share the story of the Christmas surprise from 1981.  As I was less than a year old at the time, I decided to ask my mom and my Aunt Robin to share what they remembered.

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From Jill (My Mom)
In October 1977, my Mom underwent open heart surgery and received  a valve replacement.  In December of that same year, my Dad had a stroke which resulted in the removal of a blood clot at the base of his brain.  Needless to say, my parents didn't travel much.  Unfortunately, they were not present at the birth of our first child, Michelle (February 1981).

Shortly after Thanksgiving 1981, I received a phone call from my sister Robin.  She and my brother Jack were offering to pay our way home for Christmas.  I hadn't been home in over two years, and my family had yet to see Michelle.

So the day before Christmas, my husband Mike, Michelle (10 1/2 months old) and I flew from Durango, Colorado, to Lexington, Massachusetts.  Our son Chris was "in the making." (He was born on my Mom's birthday:  March 1, 1982).

We snuck into the house and strategically placed ourselves in front of the Christmas tree.  My parents and my sister Chrissy were both surprised and overjoyed.  It was an awesome Christmas present for Mom, Dad, and Chrissy.

Thanks again and again, Robin and Jack!   

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From Aunt Robin
For us, Christmas is all about spending special times together.

In the fall of 1981, Jack and I started planning a special Christmas surprise for the family.  Together we paid for Jill, Mike, and Michelle McCotter to fly to Boston for the holidays.  But we didn't tell anyone what we were scheming! 

The McCotter Family: Mike, Jill, and Michelle

A day or two before Christmas, the snow was falling, and it was already getting dark.  Jack and I were headed out to go "shopping."  I was surprised that no one questioned us, as we had never shopped together before, and it wasn't like Jack to start Christmas shopping any earlier than Christmas Eve!  The important thing is that we got away with our story.  


I'll never forget the trip to the airport.  We were so excited to see all our plans come to fruition!  We picked up our “gifts” (remember, we were “shopping”) at the airport and proceeded home.  Jack went in the kitchen door as Jill, Mike, Michelle and I snuck in the living room door.  (This was a first as we never used that door!)  Michelle was placed under the Christmas tree as Jill and Mike sat on the couch.  

Jack was able to usher Mom and Dad into the living room.  I remember them both at the top of the three stairs…  Mom had her mouth open for about ten minutes.  Dad had the most wonderful look on his face.  It was priceless.  I cried—as I often do, even during happy times. 

The Williams Family Christmas Tree where we placed Michelle.

Dad on Christmas morning, 1981.

The Christmas Tree after opening gifts.

The days we spent together were full of laughter and fun.  Paul had come down from Maine.  Chrissy was home from UVM for Winter break.  It was wonderful.  Michelle's favorite gift from Santa was her Big Mouth Singers.  They would make her “belly laugh,” which, in turn, made the rest of us laugh.  It was such a special week.  As always, it was hard to say goodbye. 

Paul and Jill watching Michelle as she played with her Big Mouth Singers. (I wish I could find the picture of Michelle!)

Big Mouth Singers

Michelle loved being thrown up in the air by her dad. It almost gave me (Aunt Robin) a heart attack!

A few days after the McCotters had returned home to Colorado, Jack and I received a letter from Dad.  He thanked us each for the greatest gift he had ever received.  He thought Michelle was such a beautiful baby girl and he was so thrilled to be able to spend time with her and with Jill and Mike, too.  It was the nicest note I ever received from my dad.  In the note he said it was a Christmas he would never forget.  He was right.

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Mom and Aunt Robin:  Thank you for telling the story again for all of us!  Aunt Robin:  Thank you for the pictures, too.

So How is Billy?
He’s amazing, really.  He seldom complains—though I can usually tell from his face when things are hard.  We have difficult conversations with the doctors, and he just takes them as they come.  It’s not like he doesn’t feel how hard this is; he just doesn’t complain about it.  He tries to make the best decision he can, given the options he has.  And he’s grateful for every day he can spend with family and friends.

As we talked with the oncologists earlier this week (and what a week it was!), he said that some of the most important things for him and this point in his life are to spend time with family and friends.  We’re trying to do that as much as we can.

The medical side of things, though, makes this a bit more challenging.  Billy’s pain has gone up quite a bit.  The doctors can’t figure out and clear reason why, so they think it’s probably because his body has become more tolerant of the dilaudid.  (For those who are curious, the PCA works a lot like my insulin pump.  The basal is supposed to cover is base pain needs; and the bolus should handle the “spikes”.  If the PCA is well-adjusted, the basal dose helps round out the “spikes,” so they’re not so intense.  Billy’s decision to keep increasing the basal indicates that the base level of pain has increased.)

Every Monday and Thursday, the nurses draw blood for Billy’s labs.  This week, we heard some difficult news.  The bilirubin level (in the liver) is continuing to rise, indicating that his liver is working less and less like it should.  He also had an increase in his white blood cell count this week (normal is 4-10; he's at 11+), which is either from an infection in his blood stream or from the cancer itself.  The doctors are running more tests, and we will know by the end of the week whether Billy has a blood infection.  If it is an infection, Billy can receive antibiotics to treat it.  If not, it’s hard to say what could be done.

Billy has also had 2 major nosebleeds this week.  Both have interfered with his NG tube, and both have required the attention of nurses and doctors.  We don’t really know why they’re happening.  I only mention it, so you know more how to pray.

So given all of this, we’re taking one day at a time, and we’re trying to spend as much time together as we can.  That time looks different now than it did two weeks ago.  Billy is much sleepier now; he seldom makes it through a full movie.  Time together looks different than it did six weeks ago, when Billy had a lot more energy to go for walks and joke around with family and friends, and when he and Bobby ganged up on me in the gun fight.  Now, he misses lots of phone calls simply because he’s sleeping when his phone buzzes.  But time also looks really different than it did nine weeks ago, when Billy was in the ICU with a septic infection.  We’re grateful for any time we get to spend together—and even though Billy’s health seems to be “headed in the wrong direction,” as the doctors put it, we’re still hoping for miracles.

Thank you for your encouragement and your prayers!

Cookies!

Just the other day, Bobby, Danny, and I were getting coffee at Whole Foods Market, and we spotted some packs of Cowboy Cookies and Cowgirl Cookies!

Seriously?  Cowboy Cookies and Cowgirl Cookies at Whole Foods?

I couldn't believe it, so I quickly scanned the list of ingredients on the back.

The Ingredients List

I know the font in the above picture is a bit small...but if you'll look closely, you'll see why I was immediately disappointed.  Palm Fruit Oil?  Who bakes with that?  And we certainly didn't use Vermont Well Water in our family recipe.  Nothing against the Cowboy Cookies at Whole Foods, but they're not the real deal...

...which leaves all of you at a dilemma, doesn't it?  How in the world will you get to experience the wonders of our family's favorite cookie recipe?  Now, it's not common practice to give out secret family recipes, but we've decided to make a concession.  Since we're all in this thing together, and many of you have become like family anyway, we figure the least we can do is share the recipe.  So here it is.

Cowboy Cookies
Recipe From:  Melanie (my mom’s friend whom she met when she moved to Colorado years ago…)
Makes:  5-6 dozen (which, of course, completely depends upon the size of cookies you're making!)

Ingredients
1 cup shortening or butter
1 cup white sugar
1 cup packed brown sugar
2 eggs
½ tsp vanilla
2 cups flour
½ tsp baking power
¼ tsp salt
1 tsp baking soda
2 cups regular oats (not quick oats)
1 cup (6oz) semi-sweet chocolate chips

Instructions

1. Preheat oven to 325° F.
2. In a large bowl, cream the shortening.
3. Add white and brown sugar, and mix.
4. Add eggs and vanilla.  Beat.
5. In another bowl, mix flour, baking powder, salt, and baking soda.  Stir into batter.
6. Add oats and chocolate chips. Mix well.  (A strong wooden spoon works well at this point.)  
7. Drop onto ungreased cookie sheet.  
8. Bake for 10-12 minutes.

The perfect Cowboy Cookie.  Yum!

Cowboy Cookies...slightly more brown and crispy. They should never be darker than this.

These are the "flat" version of Cowboy Cookies. If  they're this flat, you may need to increase the flour or decrease the sugar.

Cowgirl Cookies
My mom—ever the creative cook and baker—decided to try a variation.  She left out the chocolate chips and added 1 tsp of cinnamon, plus 1 cup of raisins.  The result was amazing, and so we came up with a name.  As girls are made of “sugar and spice and everything nice,” we settled on Cowgirl Cookies.

Some things we’ve discovered…

• We grew up in Durango, CO, where the official elevation is 6,512 feet.  We’ve discovered that the cookies bake with different results in different places.  This cookie recipe has been perfected for the high elevation of my mom’s kitchen.  When I’ve made these in the low-lying “mountains” of Pennsylvania, they’ve come out a bit more runny and crispy.  So if you’re in a lower elevation, you may need to make some modifications.  You might try using ¾ cup of both sugars, instead of a full cup.  
• The definition of a perfect Cowboy Cookie depends upon the preference of the taster.  I love them when they’re a light brown color, sort of crispy, sort of chewy, and mostly soft.  If they’re a little doughy when they cool, that’s perfect!
• The cookies are great as chipwiches!  Just take two similar-sized cookies and place a scoop of ice cream between them.  Freeze, and you’ll have a perfect snack for later.

Cookies for Billy
Before all of this happened, I was planning on making some Cowboy Cookies for Billy's birthday, and sending them to Hawaii, so they'd be there when he arrived.

But Billy hasn't been able to eat since September 19th or so.  And his stomach still isn't working.  It's a bit disheartening to hear the doctors talk about his dysfunctional stomach and the possible block in his GI tract.  He'd really like to be able to eat, so would you keep praying that he could eat again?

Family Meeting
We had a family meeting today with Billy's medical team.  We talked about how Billy is doing and how everything is going.  Here's the big picture.

• Billy's cancer is still there.  It's "diffuse" gastric adenocarcinoma, meaning it's all over his stomach.  And it's also in the fluid around his stomach.  There are no established treatment regimens that can cure his cancer.  The medical team can do things to try to help Billy live with the cancer, but they can't cure it.
• Billy's infection is probably still there.  It's under control (his white blood cell count is normal), but he's still on a major antibiotic.  If his body becomes resistant to the antibiotic at any point, Billy could quickly take a turn for the worse.  At the same time, the doctors didn't expect him to do as well as he's been doing.  So no one knows how all of this will go.
• Billy is not a candidate for chemo, for several reasons:  (1) He probably still has an infection, and chemo is incredibly hard on the immune system--not a good combo.  (2) His liver function hasn't been stellar.  Chemo is also hard on the liver.  
• Billy's body did not like the first round of chemo.  It responded very poorly (with a septic infection and a depleted immune system).  More chemo would be too harsh right now.  

Given all of this, there is a new option!  In some kinds of aggressive cancers (breast and stomach), some patients have an amplification of the HER2/neu gene (simply said, "her 2").  In these cases, an antibody called herceptin has been effective when used in conjunction with chemo.

Billy's cancer has the HER2/neu gene.  Normally the gene is present in a 1:1 ratio.  Billy's ratio is 2:1.  So...the oncology team here wants to try herceptin alone, to see if it would do anything.   

How Herceptin Works
In some gastric cancer cells, the tumors overproduce a receptor protein called HER2.  These proteins promote growth and survival of cancer cells.  In some tumors, there's an overabundance of these receptors.

Herceptin is an antibody that latches onto the receptors and sends signals to the immune system to promote destruction of the cells.

http://curetoday.com/index.cfm/fuseaction/media.showSectionArtwork/section_id/4306

There's some risk involved, as there are other cells in the body that have HER2 receptors.  (The heart has many of these cells.)  So it would be good to pray against adverse side-effects.

Billy has decided to pursue treatment with herceptin.  So that's the next step.

How to Pray

• Billy's stomach to start working.  There may be some kind of blockage.  His intestines are experiencing what the surgeons call ileus.  They're "paralyzed" or obstructed.  This needs to change if Billy is going to eat again.
• God to completely heal the infection.  Enough said.
• The herceptin therapy to work, and the cancer in Billy's stomach and abdomen to shrink and disappear.  
• Perseverance in this "marathon."

Thanks for praying!  Thanks for all of your visits and messages.  They're helping to keep us going.

Guest Post: An Update from Mom

I was away for the past few days, tending to some details at my house in Pennsylvania.  My mom and my brother Chris have been here at Walter Reed, and my mom has written an update on Billy...

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We arrived here at Walter Reed Army Medical Center ("Home of the Wounded Warrior") exactly 4 weeks ago today.  Billy has made AMAZING strides since that day, and continues to "do one better" each day.  The changes seem minute based on a 24-hour day, but when you put them in perspective to how sick he was, he's doing great!

Yesterday (Tuesday) morning, Billy opted to have the catheter tube inserted.  It should help to drain the sack of fluid which is under his infectious spot on his left side.  That procedure took about an hour.  The purpose of the catheter is to try to clear out as much of the infected fluid as possible, so that he won't need to be on antibiotics all of the time.  However, along with that comes increased risk for more infection. It is a catch-22. This morning they took a sample of the fluid to culture.  Because of the strength of the antibiotic he is on, even if there is any bacteria, it may not show itself.  It would be a while before they could really determine if the antibiotics are still needed.  All other vitals continue to stay strong.

When he got back to the room, I expected him to sleep the rest of the day.  But to my surprise, he only nodded off a few times.  He was sure that his side was really going to hurt once the anesthesia wore off, yet not once did he mention it.  And today again he walked around the entire 7th floor with the Physical Therapist, without the aid of the walker!  Of course, he has the antibiotics, nutrition supplement (his liquid diet) and pain meds in tow.  It's not like he can just get up and take a quick jaunt around the floor.  It takes planning, and there's still a great deal of pain getting in and out of bed.  His stomach is still one solid mass as far as we can tell, and the fluids around the stomach and around his lungs are tough to deal with.  They make getting out of bed that much harder.

But again, today, he has only nodded off a few times.

Even visitors say that he looks better today than he did as recent as last week, and we know that last week was a vast improvement over just three weeks prior.

If you have his number and would like to call him, I'm sure he would love to hear from you. Or shoot him a text. Better yet, if at all possible,come on by! He loves seeing army buddies walk in to visit.  Just this evening he had his youngest visitor yet,  6 1/2-week-old Nathaniel, son of Joey and Naomi.

Thank you all for the cards and letters.  They encourage all of us.

Thank you also for joining us in our "march" around his stomach.  That was an amazing example of people united in prayer.  We continue to pray that his stomach will become pliable again so that he will be able to eat some real food by Thanksgiving.

Jill Bohren (Billy's Mom)


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From Michelle:  A note on the trip to PA...  We left early Tuesday morning and returned late tonight (Wednesday night).  My dad and two of my brothers (Bobby and Danny) came along, and they did some amazing work on my house!  It was the first time any of them had seen my new-(ish) house, and it was fun to host them for a night.  I am incredibly blessed to have the family that I do.  :-)  While we were in State College, I got to introduce them to the wonders of Wegmans.  I thought I'd include a picture...just for fun.  

Bobby and my dad (Ken)...need I say more?

Camaraderie

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

Finished!

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!

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, notes...you 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.

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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!

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 7^th 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!

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…

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 now...so 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.

One Day at a Time

The Williams clan is here now…well, some of them.  My mom’s family is huge, and they’re amazing.  Once they heard about the severity of Billy’s infection, a bunch of family from Massachusetts got in a van to drive down here.  They left as soon as they could gather at my aunt’s house, and they got here at 4am yesterday (Friday) morning.  Here are some recent photos of most of the family who came…


From Left:  Aunt Robin, Billy, my mom (Jill), Aunt Chrissy
Location:  Loveland, CO  (Bobby and Blair's wedding)
June 20, 2009
**Robin and Chrissy are here from MA.



Cousins! From Left:  Billy, Steve (Chrissy's Son), Ben (Jack's son), Kyle (Kelly's husband), and Bryan (Robin's son)
Occasion:  Kelly and Kyle's wedding
August 21, 2010
**Kyle and Bryan are here from MA.


Billy and Aunt Robin
Location:  Kelly and Kyle's Wedding
August 21, 2010
**Aunt Robin is here from MA.




Kelly and Kyle
Location:  Kelly and Kyle's Wedding
August 21, 2010
**They're both here from MA.



Justin and Uncle Jack
Location:  Kelly and Kyle's Wedding
August 21, 2010
**Uncle Jack is here from MA.


I didn’t get to see them until I woke up much later.  I walked into the ICU and saw my Aunt Chrissy.  We hugged, and I cried.  After a while, I let go.  I turned toward Billy’s bed, and someone handed me a t-shirt.  “This is for you.  Aunt Robin made it.”  It was camouflage, and it said “BILLY’S BRIGADE” in army font.  It has a picture of an apache helicopter below the army text.  And below the picture, it reads “Flying High and Fighting Hard.” 





We know the details aren’t 100% accurate—but the shirts are perfect.  They helped band us together yesterday as our clan traipsed around Walter Reed.  Eventually, people started to recognize our shirts.  One guy even said he wished he could have one.

Our whole immediate family is here now.  Blair, my dad, and my brother Chris joined us yesterday.  We're all here, trying to love each other, be in this together, and to love Billy.



Four of the Five McCotter/Bohren kids. Despite what modern medicine says, we're hoping for a miracle. There have always been five of us in this picture. We want there to be five again.


People all over the hospital know Billy’s story.  It was a urology doctor (Dr. McLeod) who fought to get us here.  The oncologists have been collaborating to help Billy the best they possibly can.  There have been GI doctors and surgeons involved.  The doctor who’s in charge of the medical center has asked for regular updates on Billy’s status.  In the ICU, there are policies on visitors—like a max of two people in the room at a time, and no one stays overnight with the patient.  But for Billy and our family, those things don’t seem to apply.  The ICU team know what’s going on, and they’re try to do everything they can to serve our family and to make Billy as comfortable as possible.  Billy’s story is a big deal.  It doesn’t make any sense to anyone here.  It’s very heavy and very sad.  Everyone seems to be impacted.

Yesterday, we had a family conference with the doctor who’s in charge of the ICU.  He wanted to make sure we were all on the same page, and we understood what was going on.  The details are very much the same as I wrote about last time.  Billy has stage IV gastric cancer.  In and of itself, that can be a devastating diagnosis.  In terms of statistics, gastric cancer doesn’t do well.  But on top of that, Billy has a major infection that could easily threaten his life.  The cancer has been very aggressive (many of the pictures above were taken within the last 6 weeks), and put Billy on a “decline” health-wise, as the surgeon told us.  But the infection sharpened the decline. 

At this point, the medical team is doing whatever they possibly can to help Billy beat this infection and to extend his life.  He’s already had one round of chemo.  Whether he could ever tolerate another is completely unpredictable.

The doctors don’t know what tomorrow will look like.  They’re just focusing on one day at a time, and they’ve encouraged us to do the same.

Billy has been in a lot of pain, and is pretty weak.  He now has a hard time moving in his bed on his own.  There is little strength left in his body.  I ran my fingers through his hair last night, and I got to use this interesting little shower cap to wash his hair.  (You don’t have to use water.  There’s soap in the cap.  You just put it on and rub the person’s head, and it washes his hair.  It takes just a few minutes.  And then you towel dry and comb the hair.)  Billy’s face said it all.  It was the power of human touch again.  A small taste of something wonderful in the middle of a painful and difficult journey.   As I combed his hair, it fell out in chunks.  It’s the chemo.  I knew it would probably happen, because his pillow had been covered with hair.  Billy’s body is weak.  He is fighting to survive, but he is so very weak. 

Sometimes, it’s hard for Billy to talk.  Sometimes, he’s really thirsty.  But he can’t drink anything at this point.  His stomach still doesn’t work, so everything that would go down would get sucked out by the NG tube.  His legs hurt a lot, and his ankles are swollen.  His belly keeps swelling with the fluid that’s being produced by the cancer cells.  And he has wires and tubes all over.  But he's more stable than he was two days ago, and that's a small miracle.  :-)

We rejoice in the little things.  Billy looked over the side of his bed and saw Rob yesterday (a army friend who had driven down from New York).  Billy didn’t say anything, but he smiled.  I love seeing him smile!  The look he gave Rob said more than words could ever say, and that is something worth celebrating.  The doctor told me that his white blood cell counts were coming down, and that seem like a small victory.  It means that the antibiotics are probably working to knock out the infection.  We have to keep watching them to make sure they don’t go too low.  But it looks like they’re working!

(Confused about white blood cell counts?  I know, it’s hard to understand all of this.  When Billy took the chemo, it attacked his body—as it’s supposed to do.  In doing its work, the chemo killed some of his white blood cells.  That can be dangerous, as it means that his immune system gets weakened.  So the doctors gave him neupogen to help his body to make more white blood cells.  When the body gets infected, it also produces more white blood cells.  An excessive level of white blood cells can indicate infection, which is also not good.  But it’s not bad that he has more white blood cells; it means that the body is doing its job to fight the infection.  And a decrease in an elevated white blood cell count can be good, because it can mean that the infection is going away.)

Billy is hanging in there.  We’re all living one day at a time, trying to spend time with him and with each other.  It’s a tough journey we’re walking.  Medically speaking, Billy doesn’t have much time left.  But I will hold onto hope as tightly as I can.  You never know what God might do.  

Unexpected Changes

I have so many reflections I want to share…  And finding the words to transition from that, to the news I must share… it feels utterly impossible.  I think this is the hardest blog entry I’ve had to write yet. 

Billy is VERY SICK.  According to the doctors, he is “as sick as a person could be from a medical standpoint.”  It’s not just limited to stage IV stomach cancer anymore.  Billy has developed an infection in his abdomen and it is VERY SERIOUS.

I know you’re asking how this could possibly be happening.  Many of you heard about Billy’s walk off of the plane yesterday when he arrived at Walter Reed.  It is true that he walked off; it’s not a rumor.  But the other truth is that his walk could not be completed without massive amounts of effort, and quite a bit of pain. 

Billy is not one to complain.  Many of you know that.  He takes a hit.  Life doesn’t go his way.  And he shrugs his shoulders, accepting what has come, and moving forward the best he can.  Consistently through the last 2 ½ weeks, the nurses have come in his room to asking, “On a scale of 0-10, how’s your pain?”  He hasn’t really complained.  He just gives the number—sometimes verbally, and sometimes by holding up fingers on his hands—and the nurses move to address the situation.  Most of the time, they’ve been able to get his pain down to 1 or 2.  It has crept up to 5 or 6 at times, but then they’ve gotten it down to 1 or 2 again.

But that’s not the case anymore. 

Since Billy arrived at Walter Reed yesterday afternoon, his pain level has been climbing.  It held steady at a 5 or a 6, and then increased to 7.  Sometime yesterday or today—I can’t remember when it was—I asked him for his pain level as he grimaced.  “I don’t know,” he said, sort of groggy.  “I can’t put a number on it.  It just hurts.”  Many times last night as I stayed with him in his room, he’d ask me what time it was.  “1:15 in the morning,” I told him.  He replied, half moaning, “Oh, God…”  The time was creeping by so slowly. 

But time until what?  He didn’t know.  He just wanted the pain to go away.

The physicians at Walter Reed have been collaborating and working hard to assess Billy and come up with the best treatment possible.  This morning, as they did “rounds”, a group of 10 or so came into Billy’s room.  The head physician wanted to fill us in on what they were seeing, and what they had planned for the day.  It was an ambitious list:

• Paracentisis (drain the fluid from Billy’s belly)
• An ultrasound to look at his bile system—to inspect for any kind of blockage
• Perhaps he would get albumin (in an IV line)
• The GI doctors would reassess his anatomy with an endoscopy (camera down his throat), and possibly consider a stent to help his stomach to drain
• Someone from nutrition would come in and start the TPN (a bag of fluid nutrition)
• Starting the PCA (patient-controlled anesthesia) pump

That was the list this morning.  By mid-afternoon, it was clear that the day’s list had to change.  The ultrasound happened, as did the paracentisis.  He got the PCA pump, and someone from nutrition came.  But then it all stopped.  We met with the physicians in Billy’s room, and Dr. Gallagher told us that there was something wrong with the fluid from Billy’s abdomen.  There always has been something wrong; the liquid shouldn’t even be there.  The cancer is producing the fluid, and it causes swelling and pain in his belly.  But this time, they weren’t able to drain much fluid.  According to Dr. Gallagher, the fluid was probably “unlike any other fluid that had been drained from his belly before.”  (He’s had this done 3 other times.)  The doctor proceeded to tell us about his fluid.  It was thick, like mucus.  It was yellow—the wrong color for this kind of fluid.  It should be more of a dark green shade.  And it was filled with bacteria.  Billy has developed a major infection (sepsis) in his abdomen.  There is “unequivocal evidence.”  Billy has an elevated heart rate, his blood pressure is falling, and there are three kinds of bacteria in the abdominal fluid.  It’s not good.

To make matters worse, there is an even greater danger.  If Billy’s bowel tears, all kinds of bacteria will leak out from his intestines.  In the words of the doctors, it will be a life-threatening situation for him. 

At this point, the doctors are unsure whether his bowel is already torn.  They can’t quite tell. 

Everything inside me wants to scream.  I was in Billy’s room earlier, and my mom came in to gave me a hug.  I know I can’t break down in front of him.  I have to be hopeful and strong.  But when my mom hugged me, I lost it.  I fought to contain my emotion.  “I have to get out of here,” I whispered.  She let go, and I left.  I went to bridge overlooking and outside garden and bawled.  This can’t be happening to my little brother! 

Just a month ago, we had hung out in Atlanta, talking about relationships, weddings, and plans for the future.  He planned to be in Hawaii with the army by mid-October, and we talked about training to run a marathon together sometime next summer.  I actually found one in Hawaii on June 26.  It sounded like a fun challenge, and a good excuse to hang out together. 

And now, I’m not sure how much longer my brother will be alive. 

I have hesitated to say such a thing, because I have refused to despair.  I believe in a God who does the impossible.  I’ve seen miracles happen in my life and in the lives if my family and friends.  I believe that God can heal Billy.  The painful part is not knowing if He will. 

We face some tough choices ahead.  If Billy’s bowel is torn, the question of surgery arises.  If the bowel is torn because of cancer, the surgeon faces an impossible task:  you can’t attach cancer to cancer and expect it to heal.  If the bowel is torn, and it’s not because of cancer, surgery could be possible.  But it could be too much for Billy’s body to handle.  He might not come out alive.  And even if he did survive the surgery, we’re not sure what quality of life he would have.

The reality, medically speaking, is that Billy is dying.  And nothing short of a miracle will save him. 

He’s currently in the ICU at Walter Reed.  They’re trying to stabilize his pain, to bring his pulse down, and to bring his blood pressure back up.  He’s on a ton of antibiotics, and we’re hoping that his body responds to them.  We’re praying that the antibiotics kill his infection.  If they don’t, surgery may be our only option.  And we’re not sure that’s a good option for him. 

There are a lot of hard decisions ahead.

In the meantime, people are trying to get here as fast as they possibly can.  My dad and my fourth brother, Chris, are flying out here tomorrow from Colorado.  Bobby’s wife, Blair, is flying in tonight.  My mom’s sisters and a few nieces and/or nephews are driving from Massachusetts as I write this.  We’re trying to be together and with Billy as much as possible.

He’s in the ICU, and visits are restricted to the immediate family.  The focus right now has changed.  We’re not trying to beat cancer right now (we’ll get to that later).  Right now, we’re focused on beating the infection and keeping him alive.

Billy is there, but he’s not the same Billy we’ve all come to know and love.  That Billy loves to care for people, to buy things for them, to clean up their messes, to give until he has nothing left, and to make life a lot of fun.  The Billy in the ICU is in a lot of pain.  He can’t really talk, and isn’t always alert all of the time.  He’s needy, and he looks ill.  He’s not the same Billy that we all saw a month ago. 

The picture at the top of this blog was taken at his graduation from flight school on September 2, 2010.  No matter what happens here at Walter Reed, that’s the Billy I’ll always remember.

At this point, the picture is grim, but the hope isn’t gone.  He’s still alive.  We can still pray.  So please pray, for whatever comes to mind.  I trust that God will show you how.

You may text, or send Facebook messages or emails.  We probably won’t respond right away.  And we may not answer calls.  We can’t have our phones on in the ICU. 

I was in the ICU with Billy a little bit ago.  I felt so helpless.  It feels like there’s nothing I can do.  I spoke to him about our plans for the evening…we were going to get something to eat, and then we’d be back to visit him.  He seemed confused.  The pain and medicines and trauma are a lot for him to bear.  All I could do was to say, “I love you.”  And I saw his lips move.  I read his lips.  “I love you too” he said silently through his lips.  But I heard him loud and clear.  I know he loves me.  He has proven that time and again by how he has lived. 

I know some of you may think it absurd for me to write a blog entry at a time like this—but this blog has been good for me, for all of us.  It’s the best way I know to let all of us be in this together.  I don’t know how all of this will end, but we’re going to need you—our family and friends—to press forward.  And I wanted you to know what’s going on.  It happened so fast, and it has taken all of us by surprise.

The social worker told us not to try to make sense of it all.  “Your brains will be like scrambled eggs,” she said.  And she’s right.  It’s hard to understand anything right now.  Except that I want to be with my brother as much as I possibly can.  So I’m off to the ICU…

Thank you for your thoughts, words of encouragement, hugs, prayers, and offers to help.  I don’t know how we could do this without all of you.