A Christmas Tradition

We don’t get to be together all that often, so Christmas tends to be a special time for our family.

"The Kids", Christmas 2007. Left: Danny (top), Billy (bottom). Right:  Bobby (top), Michelle (middle), Chris (bottom).

We have several Christmas traditions, but what we do with Christmas ornaments is my favorite.  After we get the tree set up, we all spend time hanging the ornaments.  But they’re not just any ornaments.  Each ornament means something.

Since we were little, my mom started collecting ornaments for us.  Every year for Christmas, she and my dad work on finding an ornament (or maybe several) that represent something from that year...  Chris has a train from when he was little.

My parents have a moose from the year we visited Yellowstone.

Billy used to make cowboy cookies and fudge all the time, so he has an ornament of Santa baking cookies.

Each ornament means something, and many of them bring back memories.

Sometime during December 2006, we started hanging ornaments on the tree.  I had flown into Durango, CO, from L.A.  My parents, Chris, Bobby, and Danny were there, too.  But Christmas didn’t feel quite the same that year because Billy wasn’t there.  Usually, each person would hang his own ornaments, but since Billy was gone, we all took turns hanging some of his ornaments.  It was fun—remembering stories from years ago.  I hung an ornament of me as a little girl…

…and I remembered sitting in the windowsill of our church as my picture was taken.  We talked and laughed and told stories.  We got to one of my favorite ornaments:  the paratrooper.  In 2003, after basic training, Billy had joined the 82nd Airborne to become a paratrooper.  So my mom started working on finding a paratrooper ornament.  When she couldn’t find one, she and my dad teamed up to create one…

It’s amazing how our ornaments bring back so many memories.

As we spent time decorating the tree, I picked up an ornament that stopped me in my tracks.

I looked at the picture of Billy, and tears welled up in my eyes.  I missed him terribly, and I knew I had to call him.  So I did.  That phone conversation with Billy was really special, and it’s one I’ll always remember.

An Invitation for You
This year, we’d like to invite you all to be part of our Christmas ornament tradition.  Our Uncle Paul and Aunt Linda have supplied the tree.  (We set it up tonight!)  Now, we need help decorating it.  It already has lights, but it needs ornaments.

Tonight, we put the first ornaments on the tree…

We wanted to invite all of you to send in ornaments to help us fill it up.  If you’d like, please find or create an ornament that:

• Commemorates a memory you have with Billy
• Reminds you of Billy 
• Represents Billy in some way

If you’d like to include a story or a note with the ornament, go for it!

If you can hand-deliver your ornament, feel free to stop by!  Or you may send your ornament to:

Will (or Billy) McCotter
Walter Reed Army Medical Center
Mologne House Hotel Room 533
6900 Georgia Ave. NW
Washington DC 20307


Thanks for helping us with this!

So…How is Billy?
He’s doing well.  The TPN (IV nutrition) adjustments are throwing his routine off a bit, but he’s adjusting.  He went for a long walk today, and he sat up in his bed for an hour and a half—which is longer than I’ve seen him up for quite a while.  J

Many people have asked if he got to taste Thanksgiving dinner.  Unfortunately, his small bowel is still blocked, and his stomach isn’t working.  The doctors know the small bowel is blocked, but they’re not sure exactly what is causing the blockage.  Please continue to pray for the organs in Billy’s abdomen.  He would love to be able to eat again.

Thank you for all of your prayers, visits, messages, encouragement, and hugs.  And thank you to the friends who made Thanksgiving special.

A Day in the Life...

It doesn't exist.  Every day here is different.  Sometimes, days go by without much happening.  Other days, so much happens, it's hard to know how to sum it all up.

Billy has been fighting a pinch in his right side all week.  We'll be talking about something, and all of a sudden, he grimaces.  The doctors don't know why it's happening.

Yesterday, they did an ultrasound of his liver to try to figure some of this out.  One of the physicians came back in the evening to explain the results...

• The ultrasound showed some "sludge" in his liver, which is to be expected, since he is on TPN (IV nutrition).  He has been taking TPN for 5-6 weeks now, and it is taxing on the body.  The nutritionists have gotten involved, and they're going to try to change some things up a big, so Billy still gets the nutrition he needs, but his body also gets a break from the TPN.  Billy will get the same amount of TPN, but they'll speed up the rate so his body gets some downtime.  Hopefully, this will help his liver.
• The pinch is likely from an irritation in the diaphragm.  Apparently, the nerves in the diaphragm are connected with the nerves in the shoulder, which is why the pinch in Billy's side shoots up to his right shoulder.  The diaphragm is likely irritated by the gastric cancer.  
• Billy has a blockage in his small bowel, somewhere toward the end of the bowel.  The bowel is many feet long, so there's no way to get the NG tube all the way to the blockage to ease up the pressure.  So the only way to clear the blockage is to do surgery.  Surgery would be traumatic to anyone, but in Billy's case, it would be incredibly dangerous.  He has gastric cancer and an infection in his abdomen to contend with.  If, during surgery, bacteria from the bowels would leak into his abdomen, it would be really bad.  He'd get very sick...so it doesn't seem like a good option. 
• My dad asked if it was possible that the blockage in Billy's bowel is an inflamed lymph node.  The doctor said it's possible, and he thinks it's likely that the blockage is lymphatic (as opposed to cancer), but he doesn't know for sure.  The only way to know for sure is to operate...and we already know that's not a great idea.
• My dad also wondered about how well the herceptin is working.  "Is it possible," he asked, "that the herceptin has killed a bunch of the cancer, and the lymph system is inflamed from trying to clear out dead cancer cells?"  The doctor said that herceptin is not all that much of a cancer-killer, so it's not likely.  Herceptin works well with chemo, but it's not a big cancer-killer on its own.  

All of that makes sense, but it's not great news.  At the end of a hard day, it's difficult to hear news like that.

Patches
Yesterday morning (before the ultrasound), we ordered a bunch of patches.  (Bobby had worked on the design, and I had negotiated with the company; after we reviewed the third proof, we placed our order.  We were really excited!)  Soldiers and pilots wear all kinds of patches on their uniforms and helmets.  Some are standard (like their last name and a backward American flag)...

Why is the flag backward?  Army policy is to wear the stars at the front.  When the patch is worn on the right shoulder, the "front" is the right side of the patch.  As the soldier walks forward, it gives the illusion of the flag blowing in the wind.


...and some patches are left for the soldiers to choose.  After we created the Ask Me About BILLY t-shirts, someone suggested that we create patches for pilots to wear on their helmets.  On Monday, I sent out a facebook message to the Will's Hope 2010 facebook group to gauge the level of interest (because we have to order at least 100 patches).  The response was overwhelming, so we went for it.

A Sample Patch

Patch Details

• They're 3" x 2", with velcro on the back.
• Price:  $5 each
• Arrival Date:  Tuesday, December 7
• If you'd like a patch, let us know.  (Send an email to Wills.Hope.2010@gmail.com, and include the shipping address and a count of how many patches you'd like.)  Right now, 72 patches have been claimed.  We ordered 100, so if you'd like one, please be sure to let us know as soon as possible.  We can order more, but we have to order them in batches of 100, and they take 2 weeks to arrive.
• Payment:  

(1)  Via Paypal.  Go to www.paypal.com.  Click Send Money.  Select Friends and Family.  Enter the amount.  Follow the steps.  When it asks for an address, enter Wills.Hope.2010@gmail.com.  Continue through.  You may give by credit card, and it will charge a small fee.  Please be sure to enter your name and your mailing address in the comments, so we know where to send the patch(es).

(2)  Via Check.  You may send a check to us.  Please make the check payable to Michelle McCotter, and send it to:  Michelle McCotter, WRAMC, 6900 Georgia Ave. NW, Mologne House Hotel Room #533, Washington DC 20307.  Please include your name and mailing address in the envelope, so I know where to mail the patch(es).

I'm excited to have patches!  And we're adding a new t-shirt design to our store at zazzle.com.  I'll let you know when those are up as well.

In Other News...
In response to my most recent Facebook message about the patches, some woman accused me of trying to scam everyone.  She told us that we "best take her off the mailing list," because she didn't want to receive any more messages.  I was hurt and angry.  How could someone think this was a scam?

I'm including the story as an example of the kinds of things that come up in a day.  The idea of patches was exciting.  The scam comment hurt and made me mad.  I was excited to finish work (computer programming) and go see Billy.  And hearing the results of the ultrasound was disheartening.  Lots of ups and downs.

But somehow, we keep pressing on and hoping for miracles!

Ways to Pray

• For miracles.  For Billy's stomach and intestines to work like they're supposed to.
• For good memories and fun times over Thanksgiving.
• For grace in dealing with less-than-gracious people.  
• That we would love each other well.

Results from the Billy Run

Someone said it was 30 degrees this morning when we gathered for the Wounded Warrior 5K.  All I know is...it was COLD!  But it was fun, and it went really well.  I just wish I brought some gloves.  :-)

There were eight of us at the race...

• Runners:  Bobby, Michelle, and Molly (flew in last night from San Antonio, TX)
• Walkers:  Adrienne and Kelsey 
• Cheering Squad:  Aunt Robin and Uncle Tom (Robin is my mom's sister, and the creator of the BILLY'S BRIGADE t-shirts), and Blair (Bobby's wife, and our photographer)

The course was tough, but fun.  Lots of 5Ks (3.1 miles) are done on the road.  This one was in the woods.  It reminded me of cross country races in high school, complete with mud banks and a water hole!  The race started down a fairly steep incline.  Less than 300 yards beyond the start line, runners had to funnel onto a 2 1/2-foot-wide bridge on the right side of the water hole.  The bridge was too narrow for the mass of runners.  It was like shoving cattle through a cattle chute, or like traffic in DC on the Wednesday before Thanksgiving:  everyone got stuck.  Knowing the clock was ticking, I decided not to wait.  Fording the water hole only cost me one wet shoe and some mud on my running clothes.  And it was fun!

Bobby finished very well.  It was his first 5K, and he finished in 22:54 (7:23/mile, an excellent pace!)

I received a text after the race that made me laugh.  "Did you win?  LOL"  (Very funny, Rachel!)  I think the winner finished a little over 17 minutes, much faster than my 27:06 (an 8:45/mile pace).  It's "slow" for me, but considering the hilly course, I'm satisfied.  Besides, the race was about Billy, and I thought about him the whole way.  Throughout the race, bystanders kept cheering for some guy named Will--which made me think about Billy even more.

It was really fun to gather family and friends to do something fun in honor of Billy.  I'd definitely do it again.  I still want to run a marathon someday.  :-)

The Runners and Walkers. From left:  Michelle, Molly, Bobby, Adrienne, and Kelsey

Pre-Race Ceremony

Bobby's Game Face

And we're off!

Bobby, enjoying a brief section of road. (Most of the race was on grass and trails and lots of hills.)

Hills...

Molly coming in for a strong finish.

Bobby, catching his breath.

Kelsey and Adrienne

Blair (our photographer) and Robert ("Bobby") McCotter

It was a blast! From left:  Michelle, Molly, Bobby, Adrienne, and Kelsey (across the front)

How's Billy Today?
He's currently watching the Patriots play the Colts.  He took a walk this morning, and napped quite a bit.  He's still feeling the pinch, but he's feeling it less today than he has been the past week or so.  (Yeah!)  As has been our custom, we're going to watch a movie tonight.  It's a routine we've gotten into, and the time spent together is something Billy looks forward to.

Ways to Pray

• For the blockage in Billy's intestines to clear up
• For the God to heal the ileus (intestinal obstruction) in Billy's intestines
• For Billy's stomach to start processing food and his body to absorb the nutrients it needs
• For fun, laughter, and new memories that make us smile

Guest Post: The Integrity of our Soldiers

Some thoughts from my mom...

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For 8  weeks now, we've been charting Billy's progress and his fight to beat this thing!  It's hard to believe that so much has happened in such a short time.  What a whirlwind!


When I first arrived in Miami, I really didn't know anyone except Billy, and even he was in a "foreign land" (meaning he was between assignments and in a civilian hospital).   All I had was the name of the hospital, and the name and phone number of his friend Melissa, who had stayed with him at the hospital until I could get there.


In a very short time and quickly, all of that changed.  From the moment I arrived at the hospital, I was introduced to countless nurses, doctors, administrators, etc.  Every title you could imagine, I was made aware of their existence.  I had business cards, phone numbers, and messages to "call this person as soon as possible".  In essence, I was bombarded!  Being the visual person that I am, meeting people face to face, along with having their business card, worked the best for me.  I soon learned to write "who" they were on the back of their cards, and to carry a notebook with me everywhere I went.  I was, to say the least, overwhelmed.  In most cases, if I couldn't picture you, or know what part you played in this drama, I probably wasn't quick to return your call.


However, I had received a call from Cpt. Justin Barnes from Fort Rucker, where Billy was stationed before he went on leave.  Shortly after that, Maj. Derek Smith called me, wanting to assure me that they were taking care of issues on Billy's behalf, and to make sure that our family was being taken care of.  In a very short time, I realized that I could trust Maj. Smith at his word.  He has become a very dear friend, even though we have never "met".


Maj. Smith was there for me.  He listened when I was scared, when I cried, when I shared what Billy was going through, and when I cried  out for help (to get Billy to Walter Reed).  He has been with us every step of the way.  He continues to help us with personal matters, and keeps in touch with us at all hours of the day and night, including weekends.  He is truly a dedicated soldier.  He said that his job is demanding, but I believe he takes it "above and beyond the call of duty".


When we received the care package from Fort Rucker, an American flag and this letter were included.  These were referred to in the blog entry entitled "Camaraderie".  As you read this letter, I'm sure you will agree that these soldiers are a special breed.  As tears streamed down my cheeks, I could only think that more people need to be able to read this letter.  With Maj. Smith’s permission, here is that letter.  Need I say more?

The letter and flag from Maj. Smith.

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Will,

I wanted to send this letter to express my sincere appreciation for your service to our Nation.  It takes a special person to selflessly devote their life to something larger than themselves, something that often brings little personal gratification and is met with more memories of being uncomfortable and lonely than happy and care-free.  You have already served with distinction and sacrificed more than anyone could ask of you.

Enclosed in this box are many of the reminders of your time here at flight school.  Every Commander at every level wanted to provide some small token and I hope that each one hold some type of special memory.  I wanted to specifically explain the flag that I placed in the box.  I have been carrying around this flag for some time waiting for the right moment and the right person to receive it.  It has a story like most keepsakes and it means a lot to me.

The flag tells my entire story.  It is one of two flags that I carried with me through 3 deployments.  It has seen the escort of Saddam Hussein, a wire strike, a slew of fire fights, valorous citations, forced landings, some close friends dying for their country, heartaches, victories and most notably my greatest realization as a Soldier.  While fighting during the battle for An Najaf we were caught in an ambush.  We suffered a great deal of combat damage and delivered nearly our entire ordinance payload for the ground commander.  Throughout the fight we never lost our focus.  We continued to minimize collateral damage and always considered the civilian population while continuing to stay mission focused executing the task at hand.  It was there I realized that every Soldier in our Army possesses something great, something that separates them from everyone else; a will to fight.  The will to fight I am referring to has nothing to do with the urge to get into a fight with enemy forces.  We possess a passion that doesn't allow us to quit on ourselves or our friends.  It is steadfast motivator that pushes us beyond our normal capabilities and compels us to fight with great compassion.  This will to fight gets us through hard times and forces us to always give our all to everything we do.  That compassion and drive is what separated us from our enemies and is shouldered by every man and woman that volunteers to wear our uniform.  This very will is what makes me proud to serve every day next to people like you.

This flag has always served as a reminder of that will to fight and it would only be fitting to give it to you now to serve you in that same capacity.  We are all proud of you and are praying for you daily.

Respectfully,

MAJ DEREK SMITH

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From Michelle:  Tomorrow is the Billy Run (@ 8:30am).  We have 3-4 people (maybe more) running here with us, and a few who will be running in other parts of the U.S.  If you do run, will you let us know where and when you ran?  And will you send a picture?

How is Billy?
He's hanging in there, doing the best he can with what's going on.  His right side is still pinching.  When his side pinches, the pain shoots up to his right shoulder.  Thankfully, Billy seems to be able to manage that pain better.  We want to be able to take him outside, but it hurts a lot for him to move, so we haven't done that yet.

Billy sleeps often, but he loves time spent with family and friends.  This weekend, more family is here from MA.  My mom's sister Robin is here, as well as her husband Tom.  My mom's brother Jack is here again, and his son (our cousin) Ben came along.  It's nice to have them here!

Last night, Adrienne stopped by on her way to PA.  Earlier this week, Suzanne (Nate's mom) came by, as did Ruth and Jonathan.  Kelsey is here often.  Thank you to everyone who has come or sent letters, pictures, and cards in the mail.  Billy's room is quite full of notes, pictures, and gifts from friends!

How to Pray

• That Billy would be able to celebrate and enjoy Thanksgiving with friends and family.
• For miracles. For Billy's intestines and stomach to start working.
• For management of pain, and that the doctors would have wisdom in caring for Billy.
• For special times together as family and friends.

Discoveries

It has been quite a week of ups and downs!

Monday was a hard day--difficult for us and difficult for Billy.  After weeks of small improvements every day, it was difficult to watch Billy struggle again.

Several weeks ago, Billy successfully completed a CT scan with contrast.  The whole process was amazing, really.  Being off of the NG suction is difficult for Billy.  The fluid backs up in his stomach and makes him nauseous.  Several weeks ago, despite that, Billy was off of NG suction for 7 hours!  He ingested 700mL of contrast and kept it in.  And the CT scan was successful.

On Monday night, after a rough day, a new NG tube, lots of nausea and some vomiting (sorry for the graphic detail), a CT scan with contrast seemed impossible.  Billy tried anyway, but it just wouldn't work.  His stomach refused to tolerate it.

They tried again on Tuesday.  Billy kept 100mL of the contrast in, but that was it.  It wasn't enough for a CT scan with contrast, but they took a scan anyway.

We were hoping the scan would show positive results:  a reduction in Billy's tumor and some large pockets of fluid that could be drained.

Even though Billy wasn't able to keep the contrast down, the scan was clear enough for the doctors to see what's going on.  Yesterday, we heard the results, and the results were mixed.  The scan showed four things:

1. The infection in his left side is smaller.  (The catheter is doing its job!)
2. There is no large pocket of fluid in his belly.  This raises a question:  why is his belly so "distended" (full)?  
3. There is more fluid under his left lung than under his right lung.  This raises another question:  why is his right side pinching so much?
4. The small bowel is more swollen that it was the last time, so they think it's probably obstructed.  A question remains:  what is causing the obstruction?

So what does all of this mean?  
It goes back to Billy's diagnosis.  Poorly differentiated gastric adenocarcinoma is an incredibly difficult condition to treat.  Scientists have made huge advances in cancer treatment over the years, but very little progress has been made in the realm of gastric cancer.  In patients who have Billy's particular version of gastric cancer, 3 types of chemotherapy are used together.  More recently, herceptin has been found to be effective when used in combination with the 3 kinds of chemotherapy.  However, herceptin, when used alone, has very little killing power.  It can slow the cancer, but it probably won't do much to kill it.

Why not use chemo and herceptin for Billy?
Simply put, Billy's body isn't strong enough for chemo.  Billy took one round of chemo in Miami, and it was very destructive.  Billy's body is too weak, and the chemo is too hard on the liver and the immune system for Billy to be able to tolerate it.

Those are the facts--or what we know to be the facts right now.  But in this world, things can change quickly.  Billy is doing well, but as we saw on Monday morning and again today, slight changes can make a whole day feel hard.  When the NG tube gets blocked up, Billy feels nauseous, and the activity in the room becomes about clearing the blocked NG tube.  When his side pinches, conversation stops as he gets his pain under control.  Billy was all set to go outside today (the first time since he arrived on October 6), but his side pinched too much during his morning walk--and the focus on the day became about getting his pain under control.  All of us--the doctors, the nurses, and his family and friends--are doing as much as we can to take care of Billy.

But we're starting to come across questions we can't answer.  The doctors don't know why Billy's right side is pinching.  It doesn't seem to be the liver or the gall bladder.  The doctors think it's from pressure further down his side, from inflammation caused by the cancer.  There's very little room in his belly for the fluid to build up anymore, and hence there are no pockets of fluid they can drain.

At this point, there aren't any drastic measures that we can undertake to fight Billy's cancer.  We can do things to improve Billy's quality of life, and that's where the doctors are focusing their efforts.  There's plenty of pain medicine, and a lot of different options.  There's benadryl for the incessantly itchy skin.  Herceptin is an antibody that is generally well-tolerated, so Billy can keep taking that as long as his heart stays healthy.  But outside of a miracle, the cancer will eventually win.

It was hard to type that last sentence, and thinking of publishing it makes the tears come.  It's not something we ever expected to face.

So in the meantime, in the limited time we have, we're trying to savor every day we have.  Every day we have is a miracle.  I'm treasuring the time I get to spend with Billy and with my family.  And I'm discovering some of the things that make us who we are...

• This September, my parents and I went to Fort Rucker, AL, for his graduation from flight school.  On the morning of graduation, my dad handed me a box.  "That's from Billy for you to wear to the graduation," he said.  It was a necklace.  A set of wings.  Billy had two of them made--one for me and one for my mom.  

Billy's graduation gift for me.

When I saw Billy later, I asked him about it.  "It's your graduation, silly," I said.  "I'm supposed to be buying you a gift!"  He disagreed.  "You came to visit me," he said.  "And that's enough."  That's Billy for you--always a giver.

• I went in the family room last night to wash the crock pot after I had made chili.  (Thank you for the ingredients, Sara!)  All the dishes had been washed.  I asked Bobby and Danny about it, and all evidence pointed to my mom.  She's so sneaky sometimes!  

• Several weeks ago, my mom and I had gone to get massages at a local spa, courtesy of Walter Reed.  I was supposed to have a pedicure that day, but something got messed up, and I wasn't on the schedule.  So my mom decided to give me a pedicure last night, and it was awesome!  

A pedicure...just because my mom wanted to give me one!

• Yesterday, my mom went to Dunkin Donuts to get my favorite coffee.  Later that morning, as I was drinking my coffee, Bobby and Danny showed up for the family meeting.  Bobby was carrying a cup of coffee.  He extended the cup, saying "This is for you, 'Chelle."  He had made coffee in the French press, and added sugar-free hazelnut and half-and-half, just the way I like it.  I didn't know what to do with 2 cups of strong coffee--but I felt incredibly blessed and loved.

We're a family of givers, and I love it.

Ways to Pray

• For miracles.  For the impossible.  For us to continue to be hopeful.  
• For special moments as family and friends.
• For endurance in this journey that has no definitive timeline.
• For the pain in Billy's side to dissipate.
• For Billy to be able to go outside.  
• For Billy to be able to celebrate Thanksgiving.

Thanks for everything! For the friendship, hugs, notes, groceries, money, encouragement, prayers... We could not do this without all of you!

Difficult Days

As we walk this journey, I'm learning that some days are harder than others.

On Saturday evening, a bunch of us were hanging out with Billy.  We were watching T.V., laughing, and telling stories.  But I was having trouble joining in:  something wasn't quite right with Billy.  I looked across the room and made eye contact with Sam (one of Billy's friends who was visiting for the weekend).  I could tell that she was concerned too.  We had both noticed Billy struggling.  I asked him how he was doing.  He said he felt a bit nauseous, like the NG tube wasn't working quite right.  Eventually, he was able to overcome the feeling of nausea...but he still didn't feel all that great.

Yesterday (Sunday), Billy started feeling a sharp pinch under his right lung.  Every time he took a deep breath, he felt a pinch.  He said it seemed like some of the fluid in his belly was starting to accumulate under his lung.  It made breathing difficult, and it hurt.

Billy didn't sleep well last night, and this morning was worse.  We found out that Billy's NG tube had come out too far, so it wasn't working like it should.  The doctors tried--without success--to push it back in place, so they had to replace it.  The new tube is stiff and uncomfortable, and Billy's throat hurts so much he can't really talk.  The doctors are concerned about the pressure on his lung, so they want to take some "pictures" of what's going on inside his body.  Tonight, they planned to do another CT scan with contrast, meaning Billy's NG tube would be clamped off for several hours so that he could drink the "contrast" (dye).  Once he finished the contrast, he'd have to wait a few hours, and then go downstairs for the CT scan.  He had a scan with contrast done 3 weeks ago, and it took 7 hours.  3 weeks ago, those 7 hours felt like a long time.  Tonight, 7 hours without NG suction seemed like it would last forever.

What is a CT Scan?
CT scans can be done with or without contrast.  They give doctors a detailed image of the inside of the body; it's far more detailed than an x-ray.  When the scan is done "with contrast," it sharpens the images of the structures inside the body.

Billy's CT Scan
Billy tried to ingest the contrast, but it didn't work.  He couldn't keep the liquid down.  He was miserable and in a lot of pain.  It's just not going to work to do a scan with contrast today.  Billy is sleeping now (thankfully!), and they're going to try to do the scan again tomorrow.

What About Draining the Fluid?
The doctors need to see where the fluid is before they can drain it.  The scan will give them the images they need, so they can determine how--and if--the fluid can be drained.

When Will We Know If the Herceptin Worked?
It takes a few weeks for herceptin to have its effect.  It has been 5 days.  So we should know something in another 2 weeks or so.

How to Pray

• A restful night for Billy.
• That Billy would be able to tolerate the CT scan.
• That the doctors would be able to determine the source of Billy's pain, and that they would be able to help him.  
• That Billy's body would get rid of the excess fluid, or that the doctors would be able to get a clear enough image so that they could drain the fluid.
• Billy's stomach and intestines to start working, so that he could enjoy some of his Thanksgiving favorites.

Thank you for your support and your prayers.

A Special Day

Earlier this fall, I was in a staff meeting with my room mate, Sara.  My phone buzzed, and I checked the caller ID.  It was my mom.  I decided I'd call her back later, so I pressed a button to ignore the call.  The meeting continued.  A few minutes later, my phone buzzed again.  It was my mom.  Figuring something must have been wrong or urgent, I asked Sara if she'd mind if I answered the call.  I slid my phone open.

"Hello?" I answered.
"Oh, hi!" my mom said.  "I didn't expect you to pick up."  
"Well, you called twice in a row, so I figured I should answer."
My mom laughed.  "I left you a message, but I realized I forgot to say 'Happy Special Day,' so I was calling back to tell you that."

I laughed and thanked my mom, and we said goodbye.  I looked up, and Sara was looking at me, an expression of confusion on her face...

For as long as I can remember, the 7^th of every month has been my special day.  It's because my birthday falls on the 7^th  day of the month.  After my dad passed away on July 11, 1986, my mom started thinking about how to celebrate life.  She was a single mom, and she had four kids.  I was the oldest, and I was only 5.  In her words, "...celebrating each birthday once a year just seemed like life was to pass us by...not doing enough.  I needed something more specific, more intentional.  But I didn't know how to get one-on-one time with each of you.  Because it originally started with the birthday idea, I picked that same day each month.  It might also have had something to do with the every month reminder that something bad had happened, the 11^th of every month was very difficult for the first year..."  

Special Days are a celebration of LIFE.  Sometimes, we'd get to pick our favorite meal, or a movie to rent.  Sometimes, my mom would make a favorite dessert, or take us somewhere.  Eventually, she found a plate that said Happy Special Day, and we'd get to eat our meals off that plate.  Over the years, she found ways to make each of us feel special.

Billy's birthday is October 14, which makes today Billy's special day!

I asked a few people to share some of their favorite memories in honor of Billy's special day, so I'm including those below.  If you'd like to take part in the special day celebration, feel free to leave a note here, or you can text or message Billy in some way.

From Ben--one of Billy's army buddies--currently deployed.

Billy and Ben

My memory with Billy that makes me smile the most would have to be when we got the police and animal control called on us.  Another great memory would be running to our cars in the mornin to hide and go do "IHOP PT."

From our cousin, Bryan.

Billy and Bryan

Memory 1.  My high school graduation day.  It's an absolute monsoon out!   The ceremony is indoors.  Blah Blah Blah...I get my diploma.  I'm walking out and I see this kid that really resembles Billy.  I get home and after a few minutes there's a know on the door.  Sure enough it's him!  He had driven 13 hours straight through the night, in the pouring rain, in his not so gas friendly truck to make it to my graduation on time.  Graduating high school is great and all but him being there definitely was the best part of the weekend.

Memory 2.  My 21st birthday!  ...he flew up from South Carolina for the weekend.  We went out to Boston and had an amazing time.  He was definitely the crowd favorite amongst my friends.  He fit right in like he had known my friends for years.  And needless to say he did a great job at "looking out for me that night...."  Whoops!  Him being there was the best gift I could have received.  

Memory 3.  My trip down to DC.  After him visiting me so much, I needed to return the favor.  I went down to DC for a week and stayed with Billy and Rob.  We had a great time.  We went to all the monuments, Arlington National, and by the pentagon.  He showed me where he worked.  One day we went down with some of the guys in his squad to the Dave Matthews Band concert (my favorite).  He has a great group of friends who welcomed me in like I was one of their own.  That was one of my favorite days.  The next day Billy, Rob, and I drove up to Baltimore to watch the Red Sox play the Orioles.  It was a beautiful sunny day.  We had a blast.  I'll never forget that trip.  It was awesome!

Billy and Bryan during Bryan's trip to DC.

Overall, any time I get to spend with him is a great memory.  It was tough living in Mass and you guys in Colorado but whenever you visited we always had a special connection.  The same age definitely helped but we have similar personalities too.  He'll always be the brother I never had.  I hope he has a great special day!  Love you Billy!

From our friend, Gee (Glenda), who now lives in Alaska.
Well my very favorite thing about you, Billy, has always been your giant-sized heart that reaches out and loves them all........my second is your crystal clear twinkling blue eyes that used to melt my heart into a puddle when you would snuggle in right beside me in the pew in Durango, Colorado, with all your precious siblings.  As a matter of fact your whole family have pretty big hearts that love to give love out.  I love you Billy.....thanks for the heart touch!

So happy special day, Billy!  We love you!

How Billy is Doing
A few days ago, he said he felt like he got hit by a truck.  The herceptin was hard to take!  But each day, he feels a bit better.  He's getting stronger.  Just yesterday, after a full day spent with visitors, he went for a long walk around the 7th floor.  He often comes back from a walk feeling nauseous, but yesterday, he seemed a lot stronger.  Little by little, he seems to be getting stronger.  Please keep praying that his stomach would start working again!

Billy with Christin and Sam

Weekends tend to be full of visitors.  It's something we all look forward to, and Billy loves getting to see people.  So thanks for your visits and your prayers and all of the support!

Ask Me About Billy (New T-Shirts)

Ever since Thursday, September 23 (the day we found about Billy had gastric cancer), I've wanted to make t-shirts.  The family of my friends, Daniel and Casey, had shirts made when Daniel was diagnosed with Hodgkin's Lymphoma (cancer), and the shirts had a way of helping us to feel like we were all in it together.  We'd wear them every Wednesday, and it would remind us to pray.  It was also a great way to tell the story because people would ask us what our shirts meant.

Rallying Around Daniel and Casey. The shirts say "More than Conquerors" in 12 languages. The phrase comes from Romans 8:37: "No, in all these things we are more than conquerors through him who loved us."

We Now Have Shirts for Billy!
The design was inspired by Sara's t-shirt, which she made the day we found out about Billy.

Sara's Shirt (left)

They come from the collaborative efforts of Stephanie (sister of Melissa) and Bobby (my brother).  [Many thanks to both of you!!!]

So here they are!

Men's Shirt (back)

Women's Shirt (front)

We have men's and women's shirts, sweat shirts, and shirts for kids.  The fronts say "Ask me about BILLY."  And the backs have the blog logo and web address.

Now, we know that Billy does not go by Billy in all parts of the world.  With family, he's Billy.  In the army, he's Will or Cooter or Wheel [and probably some other nicknames I haven't yet heard. ]  Family does not call him Will, and army friends do not call him Billy [at least not without getting away with it.]  Those are his rules.  Interestingly enough, however, people everywhere are starting to call him Billy.  Our favorite surgeon (an army guy) calls him Billy.  When he was really sick (with the septic infection), the ICU nurse tried calling him Will, but he didn't really respond.  "Try calling him Billy," I suggested.  She did, and he immediately responded.  So that's why the shirts say "Ask me about BILLY."

Disclaimer:  Billy would like all "offenders" of the name policy to know that he's keeping track of who calls him Billy; and when he gets out of Walter Reed, he will exact retribution from all such persons.  J

Where Can I Get These Shirts?
We've set up an account with zazzle.com. Our "store" is
http://www.zazzle.com/willshope2010.

And here are some discount codes.  The Vetrans Day Sale expires at the end of today, so you'll have to move quickly to use that code.  I'm not sure how much longer the other codes will work.

• $2 off T-shirts:  VTRNSDAYSALE
• 10% off T-shirts:  10PRCTOFFTEE
• Free Shipping (Orders of $50 or More):  FREESHIPFORU

Note:  zazzle.com will donate 10% of each order to us.  We'll use the money for expenses that come up while Billy is in the hospital.

T-Shirts and Praying
Many of us pray for Billy every day, but we wanted to set aside one day each week for focused prayer.  Once we get the shirts, we'll be wearing them on Thursdays.

How Is Billy?
He took herceptin yesterday (by IV), and it didn't feel very good.  He was really tired after that.  Last night, he said his body felt "heavy."  This morning, he "ached all over."  Herceptin isn't the same thing as chemo, but it is a destructive drug.  Here are some things we can pray for...

• The herceptin to destroy lots of cancer cells.
• Billy's stomach to start working so he can enjoy food for Thanksgiving!  
• Billy's intestines would start working like they're supposed to.
• Billy's body to fully recover from the herceptin.

Thanks for praying!

Side Note:  Billy moved to a new room today.  We have the same amount of space.  It's just a quieter room, (right next to the family room), and the view is amazing!  You can now find Billy in Ward 71, room 7144.

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.

The Billy Run

We picked a 5K! The race is coming soon...so if you're interested in joining us, you'll want to register ASAP.

Wounded Warrior 5K
Date: Sunday, November 21
Time: 8:30am
Where: Agricultural History Park Park, 18400 Muncaster Rd., Derwood, MD  [Course Map]
Details: The race benefits the Wounded Warrior Project, which helps Wounded Warriors at Walter Reed Army Medical Center and Bethesda Naval Hospital.
Register: By Mail or Online
Fee: $35, plus a small processing fee
Email for Race Info: healershelpingheroes@gmail.com


What's a Wounded Warrior?

"They are our brothers and sisters in uniform returning from conflicts in Iraq, Afghanistan, and other areas around the world."
--http://www.woundedwarriorproject.org/

If you can't run, but you'd like to sponsor a runner, let us know.  And if you want to run with us, leave a comment below or send us an email.

How We Roll

"Prius!" was the yell I heard from the back seat right before I felt a hard punch to the back of my left shoulder.

"Ouch!" I responded, as I reached my hand to rub my shoulder and turned to face my brother, seated in the back of my car.  "That really hurt."

"I'm sorry," he said through a grin.  He was beating me at the Prius game, and he knew it.

We learned the game from my youngest brother's girlfriend.  It's a modification from Punch Bug, a game we had learned while growing up (the one our parents wouldn't let us play because it was a bit violent).  There's a phenomenon that occurs when kids are stuck in a car for hours at a time.  Some call it boredom.  And to alleviate the pains of the phenomenon, some kid somewhere came up with Punch Bug.  It's simple, really.  You just keep your eyes out for Volkswagen Beetles.  And when you see one, you yell "Punch Bug!" or "Punchbuggy!" while swinging your fist to nail your sibling in the arm or the leg.  Simple.  In such a game, you'd think the winner would be the one who found the most "Punch Bugs."  But the real satisfaction was in getting to smack your sibling.

Punch Bug!

On Wednesday this past week, we were heading back to D.C. after spending a couple of days working on my house in Pennsylvania.  Bobby and Danny were in the back seat, and I was in the front.  (My dad was driving.)  Bobby and Danny were not satisfied with the Prius game alone, so they combined it with Punch Bug.  So they were on the lookout for two kinds of cars--not one.  They were also dissatisfied with having their sister sit out of the game.  Being in the back seat with a direct shot to the back of my shoulder, they roped me in via a direct shot to the back of my shoulder.  I was never asked if I wanted to join the game.  I was punched into it.  But as a sister among 4 brothers, I guess that's just "how we roll."

Can you easily recognize one of these, in the dark, before your brothers do, so that you can avoid being punched?

I love having four brothers.  Sometimes it hurts--as in the Prius game--but I can handle it.  :-)  I love my brothers and I wouldn't ask for anything different.

Given the fact that we've got a little fight in us, and given the fact that Billy is stuck in a hospital bed and is sometimes quite bored, I've been thinking about things for him to do.  Several weeks ago, my friend Rachel came to visit, and we stopped at Target.  I wanted to find a gift to bring back to Billy.  We went to look at the games, and none of them seemed all that appealing...until we found the dart guns!  There was a pack of three of them--just $5.00!  I wasn't sure how Billy would take it, but I figured we'd give it a shot.  :-)

Rachel and I returned to the hospital, loaded up the guns and stashed them in her purse.  Then we headed back to Billy's room.  We joked around with my family and patiently waited until the room cleared out.  Then, when it was just Rachel, Billy, and me, we made our move.  Billy was distracted (or so I thought), so I grabbed a gun and crawled across the floor.  When I got to the other side of his bed, I peeked up, my dart gun at the ready.

"What are you doing?" he asked, his hand up to block my gun.

"I thought maybe you wouldn't see me," I said, as I took aim.

"Yeah right," he replied.  I lowered my gun as I stood up.  I guess I'm just not much of a sniper.  And it seemed sort of cruel to shoot a cancer patient who had no gun to defend himself.

But I was determined to make this fun.  So I had Billy stash a gun under his sheets--for later.  :-)

Later, Bobby came in the room.  He plunked himself down on the chair at the foot of Billy's bed, and proceeded to talk about the day.  At one point, he looked down--just for a moment, but it was long enough.  Billy quietly snuck out the gun, took aim, and hit Bobby right in the chest.  Bobby had no idea what to say.  Billy had nailed him.  And I was satisfied.  The expression on Bobby's face was worth it!

So how is Billy?
He's doing well, hanging in there, healing a bit more each day.  His strength is coming back.  He's walking more and more.  And he's starting to do a little bit more for himself.

For the past few weeks, dressing changes have been part of the routine.  Some of the nurses and doctors are sort of particular about the way things happen with the dressing change; others like to have help.  The other day, the nurse gathered up the supplies for the dressing change and put them in a bin.  Something happened down the hall, so she stepped out to take care of it.

"Will you hand me that bin?" Billy asked.  He proceeded to change the dressing.  When the nurse stepped back into the room, he was just finishing with the last piece of tape  He looked up with that, "Oh no, I just got caught," expression on his face.  But the nurse wasn't mad.  She smiled.  Billy is getting strong enough to take care of some things on his own, and that's a good thing.  :-)

How is Billy handling all of this?
He's a fighter, that's for sure.

Just the other day, I stepped around the corner from his bed to get something for him.  When I returned, I was greeted with a dart, and it came from Billy's bed.

"What in the world?" I asked, as I went to grab a dart gun from the stash.  Over the past several weeks, I had aimed the dart gun at Billy, but he'd just raise his hand and duck his head.  It's no fun to shoot someone who's already down!  So then I'd lower the gun.  Billy never seemed to want to fight back.

So he completely caught me by surprise when he hit me with a dart.  Having 4 brothers and being the fighter that I am, I shot him right back.  And we proceeded to exchange dart gun fire for a while.  Bobby--being the fighter that he is--couldn't bear to just watch, so he grabbed the third gun from the stash.  Also, being the loyal brother that he is, he couldn't bear to let Billy fight on his own, so he proceeded to team up with Billy.  Now, I had two dart guns aimed my way.  The fight was on!

Notice Billy's grin, just after he nailed me.

Bobby, taking Billy's side in shooting me.

After the fight was "over," Bobby proceeded to sit on me and steal my dart gun. We may have exchanged a few wet willies.

Video of the gun fight.

All of my brothers like to pick on me.  That's just how life goes.  And when Billy's well enough to join in, I know he's doing okay.  We're all fighters.  It's how we roll.  :-)

Prayer
Please continue to pray for Billy's stomach to start working.  He'd like to be able to enjoy some of his favorite Thanksgiving foods.

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?