Unfinished Stories

I still wake up some mornings and wonder how all of this could be happening.  It still doesn't seem real.

Billy has been gone for just over 24 hours, and I still can't believe it.  I miss him like crazy, and I can't imagine life without him!  The whole journey seems too short...

Just after Billy was diagnosed on September 23, they told us that he probably had a year to live.  A year!  It seemed so short.  None of us imagined we'd have even less time with him.

The past week or so was incredibly difficult for Billy.  His pain level rose; breathing got more difficult; and Billy started to sleep a lot more as the doctors increased his pain medication.  It was difficult to watch him struggle.

It feels premature to have to tell you all that Billy passed away the night after Christmas.  I'd rather tell you other stories--like the story of Buddy's reunion with Billy, or Christmas Eve night as some of the family hung around Billy beside his bed.  Those stories are rich and full.  But Billy is gone now, and life feels a lot more empty.  I miss my brother more than words could ever say.

On the day after Christmas, I woke up late.  We had been up late the night before, and I hadn't slept through the night since Buddy had arrived on Christmas Eve.  (He's my new room mate, and he likes to take charge of the bed real estate sometimes.)  Also, I was just plain tired.

Around mid-day, I called my mom to check in on how Billy was doing.  "Things seemed to change this morning," she said.  "Billy started having trouble breathing, and he seems different now."  I wasn't sure what different meant, but there was an urgency in her voice.  "If I were you, I'd get over here as soon as possible."  So I got off the phone and contacted my siblings.  One by one, as soon as we were ready, we headed over to the hospital.

As we passed by the nurses' station on the way to Billy's room, the nurses were quieter than usual.  It seemed like something was wrong.

When I got to Billy's room, I knew that something was different.  His blood pressure was slowly dropping; he had a fever; and his breathing was strained.  Instead of the oxygen tube, he had an oxygen mask.  His eyes were open, but I don't know how alert he was.  He wasn't really able to say anything.

As a family, we stayed by Billy's side all day.  Our nurse--Ellie--was amazing.  She watched Billy closely and attended to everything we needed.  Billy's doctor--Dr. Klotz--was full of empathy.  He did everything in his power to make Billy feel the best he possibly could.  But Dr. Klotz and Ellie both knew that sometimes their all is not enough.  Ellie frequently asked how I was doing; she knew it was tearing me apart inside.  Dr. Klotz knew it was hard, and he was somehow both honest and compassionate as he shared his thoughts.  The morning after Christmas, Dr. Klotz told Billy that God might be taking him home a bit sooner than he had expected, and he told us as a family that it would probably happen in the next 12-24 hours.  For the rest of the day, family stayed by Billy's side.

As evening came, we called Sam--one of the army nurses who had become a family friend.  Sam wasn't working that day, but he had asked that we call him if anything changed.  Soon after we called him, he joined us around Billy's bed.  Just after 7pm, the nurses changed shifts, and Roxanne--another amazing nurse--joined us.  It wasn't until after 8pm, well after the shift change, that Ellie (the daytime nurse) left.  It was an emotional goodbye.  I think it's hard for nurses to care for patients well without their hearts becoming attached.

We took turns around Billy's bed.  Occasionally, he'd make a sound, as if he wanted to say something, but he couldn't seem to form the words.  We took turns holding his hand; once in a while, he'd give us a squeeze, and we'd squeeze back.  It was the only way we knew to love him--to be there and to tell him how much we loved him.  Knowing the time was short, we told him the remaining things we wanted to say.

Just after 9pm, his pulse started to drop.  It had been just over 100bpm for much of the afternoon and evening.  It quickly dropped to 90bpm, and then dropped even lower.  Roxanne couldn't get the blood pressure machine to register, so she took his blood pressure manually.  That, too, was falling.

His breathing became slower--more labored, less frequent.  I knew it was coming.  Time to let go.  There was not a dry eye in the room.  I'm not sure any of us could really believe it was happening.  We had been told this day would come--and it seemed like it was coming much too soon.

Around 9:30, the doctors came in.  As they turned to my mom, my heart broke.  "I'm sorry for you loss," the doctor said.  We had known it was coming, but her statement felt so final.  They checked Billy's eyes and closed them.  "Time of death," she said, "was 9:35pm."  She turned again to us.  "I'm so sorry.  You may stay as long as you need."  And she left the room.

It came so soon.  So suddenly.  Too fast.

For now, I'll just say that Buddy did arrive in time, and the reunion between Buddy and Billy was one of the best Christmas gifts Billy could have received.  I'll share the story of that reunion soon.

Billy and Buddy

We also shared one more Christmas together as a family.  It was a tough day for Billy--but we spent it with him.  I have no doubt that he knew he was dearly and deeply loved.

Thank you to all of you for your gifts, cards, support, hugs, phone calls, text messages, prayers, jokes, wisdom, encouragement, and friendship.  You mean a lot to us, and our lives are richer for having known you.  We are honored that so many would join us on this difficult journey.

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Note:  We are working through the details regarding funeral, memorial, and burial arrangements.  Once we know more, I will post an update here.

Wishes

Some of the most common questions over the past three months have been:

• Can we do anything for you?  
• Can we bring anything?  
• Billy, is there anything you'd like for us to get for you?

In the face of such aggressive, powerful cancer, I think we feel powerless.  We want to do something!

Billy seldom asks for anything.  He likes to do things for others.  I think he has a hard time asking for himself.  The answers to those most common questions have been:

• I don't think so.
• I don't think we need anything.
• I can't think of anything.

It's hard to hear that there's nothing we can do.

So we've been paying attention, trying to notice the unspoken needs and wants.

The visits from family and friends have been incredible.  I often ask Billy about his high and his low for the day--and most of his highs have been visits from family and friends.

Sometime in October, I asked Billy if there was anyone else he wanted to see.  The answer didn't surprise me at all.  He named three men, three of this best friends.  But getting those friends here has been somewhere near impossible.  Two are currently deployed.  The other (Jason) was stationed in Hawaii; he had just arrived there in September, and couldn't take any leave time.

So we were stuck.

Billy has a group of seven men--I think of them as the Magnificent Seven--who he holds close to his heart.  Four of them have come to visit--from places as far away as Kuwait and Germany.  The last three have have been unable to come.

However, things changed about a week ago.  Jason (stationed in Hawaii) was coming to TX to visit his family for Christmas.  A plane ticket to D.C. to visit Billy seemed impossible, so he was planning to drive--sometime just after Christmas--to see Billy.

I got to work.  I contacted an organization in Indiana.  The connection was somewhat random.  (Billy has an army buddy (Steven) who is dating a woman (Lauren) who has a friend (Billie) who knows the man who works for this organization.)  The organization grants wishes for soldiers.  Until now, when they've asked if there are any wishes they can grant, I haven't had an answer.  But with Jason on leave from the army, maybe we could do something!

Jason

So I called the organization, and the woman with whom I spoke was so moved by the story, she personally took on the case.  (From what I understand, wishes are usually assigned to aides, and it can take a while to get everything approved.  However, with the nature of Billy's case, and with Christmas approaching fast, she took it on to make sure the wish would be granted.)  Within 36 hours of my wish submission, the organization (Wish For Our Heroes) had purchased a plane ticket for Jason to come visit Billy.

Once the ticket was booked, I couldn't wait for Jason to arrive!  Once he finally got here, I met him in the lobby of hospital, and we walked up to Billy's room.  I had Jason wait in the hall, and I went to introduce Billy's "Christmas gift."

"Okay, Billy," I said.  "I have your Christmas gift in the hallway.  It's a bit too big to wrap, though.  I hope you don't mind."

"Aright," he said, a bit puzzled.  I could tell by the look on his face that he knew something was up.  I went to get Jason.

He walked into the room, a big grin on his face.  "Hey, Will!" he said.

Billy's face lit up!  "I knew it was someone," he said.

"Did you know it was Jason?"  I wanted to know.

"No," he said.  "I knew it was someone, but I never expected it would be Jason."

Success!  I love surprising Billy!  It's tough to do (though tons of us want to be able to do it, because he's such an amazing brother, son, and friend).

Jason has been here the past few days, and he'll be here a few more, thanks to Wish For Our Heroes.  It was one of the best Christmas gifts we could have given Billy.  It has also been an amazing gift to our family.  Jason has a great sense of humor, and he has brought a lot of laughter and fun to all of us.  We are so glad to have him here!

Working on Adrienne's puzzle...(clockwise, from bottom left)... Jason, Bobby, Danny, Sarah (Jason's girlfriend and a new friend of ours), and Jill (our mom). [Many thanks Adrienne! It's a tough puzzle!]

Family and friends came in over the weekend to be with Billy... Back, from left: Bobby, Jason, Chris, Danny, Dustin. Front, from left:  Blair, Jill (Mom), Sarah, Michelle. Our dad (Ken) arrived late Sunday night and is not in the picture.

So, How is Billy?
There was some urgency to the "wish request" for Jason to visit Billy.  I am sad to say that Billy's condition has worsened significantly, and we're not sure how much longer we'll have him around.  I wanted to Jason to be able to see Billy, and I wasn't sure if after Christmas would be too late.  Jason got to see Billy on Saturday.  There has been a significant decline since then.

Billy's liver is starting to fail as his pain level continues to rise.  His dose of dilaudid keeps increasing.  There's not much else the medical team can do, other than try to make him as comfortable as possible.

We're working on one more wish for Billy.  He never said it out loud, but everyone who has seen Billy and Buddy together know that Buddy is very special to him.

Billy and Buddy

So we're working with Sam (Buddy's current caretaker and a new found friend) and Wish For Our Heroes to get Buddy to D.C. to see Billy.  We've been working on it since last week, and the details are falling into place.  My mom and I shared the plan with Billy this morning, and he grinned.  It would be a very special Christmas present, so lease pray that everything would work out!

We have a few more prayer requests for now:

• Pain Management.  There's a tricky balance between management of pain and excessive sleepiness.  Billy's pain has jumped up a lot (even in the past few hours), and the doctors are trying to do what is best.
• Selling Billy's Jeep.  He had planned to sell it while he was in Miami (on leave from the army, between his departure from Ft. Rucker and his arrival in Hawaii).  We've posted the Jeep at cars.com. Please pray that the Jeep would sell (and feel free to spread the word!)
• Care for Billy.  Please pray that we would know what Billy needs, even when he doesn't or can't tell us what that is.
• Christmas.  It could be tough.  Pray for grace and peace in our family, and creativity as we try to celebrate this year.  

Thanks so much for everything.  We could not do this without all of you!

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!

Chocolate Milk

This past Monday night, my mom, Chris, Danny, and I were hanging out together with Billy in his room.  Not being one to pay attention to the NFL schedule, I asked Billy if he wanted to watch a movie.  I knew the Patriots were scheduled to play sometime soon, as our cousin, Bryan, had mentioned his game tickets over the weekend when he was here.  So when I asked about watching a movie, Billy declined.  "I want to watch the game," he said.  And that was that.

I didn't mind.  I was glad to see Billy awake, and I was enjoying the time spent with my family.

As we waited for game time, Billy asked Chris for some chocolate milk from the pantry.  Chris went to get it.  I'm not sure when he returned with the chocolate milk.  Chris just came in and quietly placed the bottle on Billy's bedside table.

Chocolate Milk!

Sometime later, during the game, Danny stood up and said, "I'll be right back."  "Where you going?" Billy asked.  "To the pantry?"  Billy wanted more chocolate milk, so Danny gladly went to find some.

The Pantry...where we usually find chocolate milk.

After a while, Danny still hadn't returned.  Billy looked at me.  "There's no chocolate milk in the pantry, is there?" he asked.  "Why?" I asked.  "Is Danny taking a long time?"  Billy nodded, saying, "Chris took a long time, too."

The pantry fridge...where the chocolate milk bottles usually sit.

I smiled.  Something interesting was happening!  Chris and Danny must have walked to the pantry and discovered that there was no chocolate milk.  Then, they each must have taken the elevator to the 3rd floor, bought chocolate milk from Walt's (the snack shop), and come back to the 7th floor.  They both did all of that without saying anything, without expecting any recognition for the effort the put forth in getting chocolate milk for Billy.  It's the kind of thing that Billy has always done.

I had always thought of Billy as the sneaky one--the one who noticed little things he could do for people and then went off quietly to complete his mission, no matter how far he had to go or how long it would take to finish the job.  But now Chris and Danny were in on it.  And I had witnessed Bobby doing things like that before he went back to Colorado.  This kind of thing makes me smile.

When Danny finally came back in the room with chocolate milk, Billy and I made eye contact.  Without saying anything, we both smiled.  Danny saw it, and wondered what the joke was about.  But it wasn't a joke.  We were just appreciating the care Danny and Chris had shown to Billy.

Billy has done so many things for so many people.  We love it when we get to do things for him.

How is Billy?
He's quiet these days, and he sleeps a lot.  His energy level seems a lot lower than at other times.  It has been a while since I wrote an update, so I'll include some summaries:

Nausea  
Billy had been experiencing a lot of nausea last week.  The oncologists thought it was probably due to his liver and his gall bladder not draining properly.  Since the liver and gall bladder drain into the small bowel, and Billy's small bowel is blocked, the liver and gall bladder are probably backing up.  To alleviate this, the oncologists had suggested a percutaneous ("through the skin") catheter to drain his gall bladder.  That was supposed to happen sometime this week.

By Wednesday, most of Billy's nausea had subsided.  The doctors couldn't explain it; his symptoms somehow improved on their own.  At that point, the oncologists and radiologists thought it would be better not to insert the catheter.  Since Billy's nausea seemed to be under control (using scopolamine and phenergan), it would be better not to take on the risks of inserting a catheter into the gall bladder (risks like infection from another puncture or bleeding from the liver).

Pain
The nurses always ask Billy to rate his pain on a scale of 1 to 10.  Overall, Billy's pain seems to be in good control.  He's on a PCA (patient-controlled anesthesia) pump, which delivers dilaudid continuously.  He can always "push his button" if he needs an extra little spurt.  Usually, Billy says he's at a level 1.  He seldom complains about pain--but he seems to have intermittent, unexplained pain.  Some days, his left side hurts.  Other days, it's his right side.

Yesterday, his left side was feeling fairly sensitive, so he had an ultrasound to check for possible pockets of fluid.  They didn't find any pockets, and that's a good thing.

Today, his right side was hurting, so he had another CT scan.  We're still waiting on the results.

Drinking
When Billy is feeling good, he likes to drink ice water, juice, or chocolate milk.  At some points, he has enjoyed milk shakes or smoothies from Walt's (the snack shop on the 3rd floor).  When he started feeling really nauseous, he stopped drinking anything.  Over the past few days, however, Billy has been drinking more--not the shakes and smoothies from downstairs--but juice and chocolate milk.

Ornaments
We've had several fun packages come in the mail.  Thank you to all who have sent ornaments.  Billy enjoys them.  We all do.  (I will post more pictures soon.)

Visitors
This past weekend, Aunt Robin (one of my mom's younger sisters) and Bryan (Robin's son) came.  Uncle Paul (my mom's oldest brother), Aunt Linda (Paul's wife), and Aunt Janet (my mom's oldest sister) have been here all week.  Kelsey comes most weekends.  And last night, we got to meet Sarah--the girlfriend of one of Billy's army friends.  It has been fun to have visitors here.

How to Pray

• For Rest and Energy.  There are so many interruptions in the hospital; it is often difficult to sleep through the night.  Pray for peaceful nights, good rest, and energy for Billy to sit up and go for walks during the day.  (Sitting and walking help keep his lungs healthy.)
• For Healing.  Billy's left side is healing from a fairly large incision.  His liver isn't working as it should.  His bowel is still blocked.  And his abdomen still has a lot of fluid, with cancer cells spread throughout.  Pray for healing for all of these things.
• For Perseverance and Goals to Work Toward.  It's kind of like a marathon, only longer.  Pray for all of us--to know what the next goal should be, and to know what we need in order to keep going.  Day after day in the hospital can be wearying.  Pray for fun things, good memories, and things to work toward to break up the monotony.  

Thank you for cards, and ornaments, and notes, and thank you for praying!

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.

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!

Sharing Stories

I woke to a phone call this morning.  This time, my dad was calling to ask Bobby (my brother) to bring something to the hospital when he came, and to let us know that Billy would be moving to a new room today.

Billy has been in the medical ICU since Wednesday afternoon.  Today, he woud be moved to the MICU/PICU (“meekoo peekoo” as Bobby called it). 

Around noon, my mom, Bobby and I stood in Billy’s room as the nurse prepared for the move.  Billy was sleeping.  I don’t know how it happened, but somehow, we started swapping stories of some of the dumb stuff we did as kids…

Our neighborhood was really hilly, and we had gone for a family bike ride.  Most of us had been on bikes.  Bobby, on the other hand, was too small for a bike, so he had ridden his little red tricycle.  (As my mom told the story, Bobby had the kind of face that tells you he didn’t remember this one at all.  That face makes me laugh.)  During the ride, someone had decided to head up Glenisle.  The only way back home was down hill—and most of those hills were fairly steep.  I guess we weren’t thinking ahead.  Eventually, we reached the end of the street and rounded the corner, starting our descent down Crestview (a big hill).  All of a sudden, Bobby’s little “trike” started going faster than his little legs could handle.  And my mom had panicked.  We all laughed as my mom relayed the story of Bobby’s terror.  He couldn’t stop his trike.  Eventually, the front wheel of his trike collided with the curb on the sidewalk, and he went flying.  The story made us laugh; it was a good one to remember.

There were others—of Danny flying over the handlebars of his bike, or of Danny using a bike that Chris had told him not to use, and the front wheel falling off.  All of the stories brought laughter.  The nurse even chimed in with a story of his own.  In college, he and his fraternity brothers had decided to ride in the trash cans with wheels on the bottom.  The trash cans moved so fast down the hill, they got written up for speeding.  The police clocked them going 65mph!

Sometime during the telling of the stories, Billy woke up.  He just sat and listened, and smiled.  It’s good to see that smile.

All of this made me start thinking about story-telling.  As the McCotter/Bohren kids have gotten older, we’ve started telling stories of the crazy things we did as kids—things my parents never knew about.  And usually, we end up laughing so hard our stomachs hurt.  I’m hoping for some story-telling sessions with Billy sometime. 

Some days in the hospital, it feels like a bad dream that won’t end.  Other days, there’s not much that changes.  Today, other than Billy’s move to a new room, not much changed. 

During the slower times, we (Billy’s family and friends) get to spend time with each other.  I’m meeting people I’ve heard Billy talk about but have never met—or seeing some of his friends that I haven’t seen for a long time.  Today, I got to meet Nate's mom (Suzanne) and two sisters (Becca and Robyn).  Rob has been here, as well as Kelsey, and Melissa and Tyler.  It’s fun to hang out with people who have meant so much to Billy.  And as we hang out, we share stories.  Even though Billy is the patient, I think we’re all in need of healing in some way, and story-sharing is another form of medicine that hospitals can’t provide.    

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.  

Medicine Hospitals Can't Provide

Struggling and Hoping
As you know from the last post, my brother, Bobby, is here now.  (Actually, that’s not entirely true…because “here”, for me, now means Washington D.C.  I arrived in the D.C. area tonight, and I’m staying with a friend.  But I’ll get to the D.C. part in a minute.)  As far as the situation in Miami goes, Bobby arrived at the hospital around 6:30pm on Sunday night.  He took in the scene and jumped in to help Billy as much as he could.  But there was little he could really do to solve anything.  Billy has been fairly sick for the past few days.  The NG tube has been utterly frustrating (getting clogged with super-thick mucus), and Billy’s pain level has been high.  We’re pretty sure the chemo has kicked in.  Billy has been very tired, and his hands, feet, and lips are peeling a lot (which they said would happen with chemo).  Additionally, his white blood cell count recently dropped (which they said might happen with chemo), resulting in an increased need for caution on our part.  If the white blood cell count goes down, it means his immune system isn’t totally up to par.  Translation:  If you’re sick, it’s best not to be in Billy’s room.  And you should wash your hands before you touch Billy or give him anything.  Fresh flowers aren’t a good idea, either.  They’re pretty, but they increase the risk of bacteria in his room.  There’s a lot of tough stuff going on for Billy, and it is hard to watch.

During Bobby’s first few hours here, he commented on how different the blog was from life “on the ground” at the hospital.  So I asked him to put some of his thoughts in writing…

When I first read the blog and heard the news about Billy, a Hollywood-esque picture came to mind of Billy fighting an epic struggle.  Pictures of him smiling and greeting people as they came to help him bear his burden passed through my head.

When I arrived and saw Billy today I found my fabricated image to be far off from reality.  I went to give Billy a hug and it was a struggle for him.  I see the pain in his face as he sits in bed and am next to powerless to help him.

There is no epic soundtrack, no cheers of a small success that will lead to an eventual victory.  I feel beyond powerless. I feel lost.  I don't have anything to offer but to simply be here. I wonder if that will be enough...

I think we all wonder that.

In a world that tends to be critical and skeptical, I am striving to be hopeful.  For all of us, the world as we know it fell apart sometime in the last two weeks as we heard news of Billy’s diagnosis.  How can that be?  we wondered.  How could such a thing happen to Billy?

Cancer.  The word is so jarring and harsh.  It doesn’t make sense for a 25-year-old.  Not a newly-decorated Blackhawk pilot.  Not a guy who is so easy to love and so fun to be with.  Not Billy (or Cooter, or Will, or Mac, as many of you know him).  As we look around the oncology floor at Baptist Hospital, we feel a bit out of place.  All of Billy’s neighbors are at least 60 years old.  He doesn’t seem to belong here.  He’s too young.  This doesn’t seem right at all… 

I started reading a book today.  It’s called Anticancer:  a New Way of Life.  It was recommended to me by a friend.  Her boss’s brother had been diagnosed with some scary form of cancer.  One of those advanced, incurable kinds of cancer.  The guy is now cancer-free, healthy, and loving his life. 

All of this brings up a point of tension in me.  Who can I believe?  The doctors who say there’s a limit to the time left, given the diagnosis and the aggressive nature of this cancer?  Or do I believe the story of my friend’s boss’s brother, a guy who I’ve never met?  Doctors told him that his days were numbered—and somehow, he defied them.  Is such a thing possible for Billy? 

Well, I read something in the book today that struck me, and I wanted to share.  The story is from Anticancer (David Servan-Schreiber), chapter 2.  It’s about a guy who discovered that he had mesothelioma (cancer) of the abdomen.  When he asked his doctor about the best technical articles on the disease, she told him that the articles on the subject weren’t really worth reading.  He decided to read them anyway, and discovered some terrible news:  “mesothelioma was ‘incurable,’ with a median survival time of eight months after diagnosis.”  (Servan-Schreiber 17)  But then the guy started thinking…  If the median survival time is eight months, then some people die sooner.  But that also means that some people die later.  And some die much later than eight months after diagnosis.  He started thinking that maybe he could be one of those patients who lived a long time after diagnosis. 

That’s how I’m thinking about Billy.  Bobby is right.  This isn’t a Hollywood film, where you know the suffering is going to turn out all right in the end.  This is real life, and watching your brother battle with cancer is gut-wrenching.  My mom keeps saying that “Billy’s in the fight of his life.”  It’s painful to watch him struggle—but we’re all rooting for him.  And any sign of hope, no matter how small, is worth celebrating. 

I have watched as family and friends have come to visit, and their presence has been a form of medicine.  When he has enough energy to laugh, we celebrate.  He has been witty and fun, even with an annoying NG tube down his throat. 

Even during the past few days, when Billy was so tired that smiling was difficult, I could tell that the presence of Tyler was helping him to heal.  On Monday night, Billy was sitting on the edge of his bed, in pain and exhausted because he has been unable to sleep.  Tyler sat in the room and talked and joked with him.  Tyler would say something to try to get a reaction out of Billy—but Billy didn’t have the energy to “fight” back.  It was hard to watch, because this isn’t the picture of the Billy we all know.  But it was beautiful to watch—because it was a picture of one brother loving another.  I saw one man being willing to suffer—to be with his brother through misery.  I know Tyler would hardly call that suffering; instead, he feels like he finally has a chance to give back to the man who has given so much to him over the years.  And I see something healing in Tyler’s willingness to care for my brother. 


Tyler, Billy, and Nate (September 29, 2010)

I think there is medicine that hospitals can’t provide.  I think I’ve seen it quite a few times over the past week or so…

The other day, my mom was standing behind the head of Billy’s bed.  She had reached her hand out, and was running her fingers through his hair.  He closed his eyes.  The look on his face was one she didn’t understand.  “You okay?” she asked.  “Yeah,” he said, “just appreciating human touch.”  I almost broke.  There are countless drugs and solutions dripping into my brother’s body, but not one of them holds the same power as my mom’s hand running through Billy’s hair.

Another afternoon, as we talked with the chemo teacher, I stood between Billy’s bed and the window, my hand on the bedrail.  The severity of Billy’s condition hit me head on.  I looked away, out the window, knowing that I needed to be strong for Billy.  I didn’t want him to see me cry.  As I felt the tears run down my cheeks, my back to my brother, I felt a hand reach out to cover mine.   I had turned away to hide my pain—but Billy knew, and he reached out to comfort me. 

There is something vital in being in this together, and in helping each other to hope.  There is something incredibly important in friends and family surrounding Billy—both for Billy and for all of us.  Servan-Schreiber says in Anticancer, “in nature, the median is an abstraction, a ‘law’ that the human mind tries to impose on the diverse profusion of individual cases.”  (17)  This cancer business isn’t something we can control or predict.  But there is the possibility that this thing could turn out really well for Billy.  We’re continuing to hope for miracles, and we will celebrate any victory—no matter how small.

Some Victories Worth Celebrating
Billy is moving to D.C.!   Granted, this has been quite the fight to get him to D.C.—and he’s not in D.C. yet.  But I’m in D.C., and Billy will be on his way shortly.  On Tuesday, we received official word from the army that he would be moving within 24 hours.  I am planning on meeting him and my mom at the hospital sometime on Wednesday. 

This story is well-worth telling, but I will save it for another post.  This post is already long enough.

The past few days have been difficult--but I hear that Billy slept for 9 hours straight today!  (That hasn't happened in a LONG time!)  He's still throwing up (the NG tube has been removed to give him some relief), but he's holding down water.  He had enough energy to go online today--which he hadn't done in several days.  For the past few days, he's been so tired, he has fallen asleep while sitting up.  He's also been in some significant pain, a lot due to the increasing amount of fluid in his abdomen.  But his white blood cell count came back up enough to drain the fluid again, so they took care of that today.  We think that's one of the reasons he was able to sleep so long.

There is more news to come...  So stay tuned for details regarding the move.  In the meantime, here are some ways you can pray:

• Safety—as they transport Billy and my mom by air, and as my brothers (Bobby and Danny) drive Billy’s car from D.C. to Miami
• Rest and Health—for all of us, and especially Billy
• A safe and smooth transition from Baptist Hospital to Walter Reed
• Billy’s new medical team—that he would have a team of physicians, nurses, and others who are willing to do whatever they can to give Billy the best life possible
• Wisdom for the decisions ahead—regarding treatment and setting up life in D.C.

Also, the last time Billy moved (from the ICU at Baptist Hospital to the 5^th floor), it wiped him out.  We’re expecting that this move will do the same sort of thing.  I know many of you are longing to come for a visit, and we’d love to have you.  However, if you could wait a day or two, until we get settled in and Billy has a chance to rest, that might be a good idea.

One final note…many of you have asked about my other brother (Chris) and my dad.  Where are they?  Chris is attending to some work obligations out west, and my dad is doing what my mom calls “holding down the home front.”  He and my mom own their own business, and my dad is at home in Colordao keeping that going.  There are plans for him to come visit at some point—though all of that has been on hold until Billy gets moved to D.C. 


Our Family. From Left: Billy, Chris, Danny, Michelle, Bobby, Jill, Ken. (June 20, 2009)

Thanks for all the love, prayers, and support.  You all are an amazing group of family and friends.