Tuesday, December 28, 2010

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.

Tuesday, December 21, 2010

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!

Saturday, December 18, 2010

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!

Monday, December 13, 2010

Billy's Christmas Tree

I know many of you are curious to know what kinds of things we have decorating Billy's tree, so I thought I'd share some photos.


From the LaBlues



Blackhawk Helicopter (Ft. Rucker) (From Wes & Adrienne)



Boston Red Sox Snowman (From the Stanvicks)



A Soldier Named Billy (From the Stanvicks)



"Mr. McCotter Head" (From Kelsey)



A Grill (From Kelsey)



Holiday Wishes (From the LaBlues)



Snowflake (From Michael and Karen)



From Bonnie and Steve



Freedom Star (From the LaBlues)



Texas HUGS (From Alice)



Anasazi Ladder (From the Clarks)



USA Nutcracker (From Aunt Linda)



Flying High (From Uncle Paul)



Weimaraner Puppy (From Mike and Kristie)



Patriotic Christmas Garland (From the Stanvicks)



Weimaraner Puppy for Christmas! (From Mike and Kristie)



A Hippopotamus Ballerina (From Aunt Robin)



Flying High & Fighting Hard (From Our Family)



Ask Me About BILLY (From Our Family)



The Christmas Tree


Thank you to everyone who has sent ornaments!  Billy has enjoyed opening them, and they've brought many stories and smiles.  Thanks for helping us to celebrate Christmas!

How is Billy?
He has been in a lot more pain recently, and the oncologists haven't been able to figure out why.  Billy had an ultrasound and a CT scan this past week, and neither have showed any reason for the increased pain.  His small bowel seems to be about the same.  The blockage is the same.  He doesn't have a lot of new swelling.  So they're thinking that Billy is probably becoming resistant to dilaudid (the pain medication he has been on since September).  They've increased the dilaudid for now to try to address the increased pain, and they're thinking about trying other pain medications in the future.

At this point, Billy sleeps a lot.  He seems to be sleeping more since they increased the dilaudid a couple of days ago.  Even with his increased drowsiness, he still gets up for almost-daily walks, and he still likes to watch movies with us in the evenings--though he falls asleep a few times before we get to the end.

It's movie time now...so I'm going to go.  But before I do, here are a few things you can pray for...

How to Pray
  • For Billy's Liver and Small Bowel.  His bilirubin has been increasing.  The blockage in Billy's small bowel is taking its toll on his liver.  Pray for his liver to hold up, for the bilirubin to go back down, and for the blockage in his small bowel to release.
  • Pain Management.  Pray that the doctors would be able to figure out a pain management regimen that works really well for Billy--one that addresses his pain effectively but also allows him to stay awake and interact with family and friends.
  • Family Time.  Pray that we'd have good time together as a family as Christmas approaches.  When we heard about Billy's diagnosis, I told God I wanted one more Christmas with Billy.  Just one.  And that's all I want this year.  

Thank you for praying.

Thursday, December 9, 2010

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!

Sunday, December 5, 2010

Celebrating Life

When Billy goes for a walk, the whole floor seems to come alive.

Walking has been a bit more difficult these days, as Billy has been nauseous and tired.  He used to be able to drink various juices and broth.  The NG tube would immediately pump the liquid back out, but it was nice for him to be able to enjoy different tastes in his mouth.  For the past week or so, however, Billy has felt “full.”  In the past, the NG tube alleviated his nausea; now, the suction tube doesn’t seem to be enough.

Given all of that, it is amazing to see Billy walking.  But he knows it’s good for him, so he keeps doing it.  When he takes his walk, the nurses smile.  Last night around 10:00pm, Billy announced that he wanted to take a walk.  It had been a long day, and he had slept for most of it, but he knew he needed to get up.  We all helped him get ready, and off he went.


Billy (right), out for a walk with Aunt Robin (white sweatshirt), our cousin Bryan (black hat, on the left), and Kelsey (just behind Bryan).


Some of the staff were talking at the nurses’ station.  As Billy walked by, conversation stopped, and people watched and grinned.  It was good to see Billy out of bed!  One of the nurses was quite animated.  She whipped out her cell phone camera and tried to take as many pictures of Billy as she could.  Billy smiled.  It was a joyful moment for all of us.


An excited nurse (in brown) and a smiling Billy.


Billy’s case is a tough one.  It’s hard for the medical staff to see someone so young facing something as difficult as this.  One of the custodians has even taken an interest in Billy, and she stops by every day to check on him.  When she sees us, she anxiously asks about him.  When she walks by his room and sees us watching a movie, she pokes her head in to say hello.  Everyone wants to see Billy beat this.

Medically Speaking
The nausea has been frustrating, and it has affected Billy’s ability to enjoy life.  He has begun taking medication for nausea, and that makes him sleepy.  Billy’s pain medication (dilaudid) can also make him sleepy, so the combination is a double whammy.

Billy’s team of oncologists has been doing some brainstorming to figure out why the nausea has increased.  Billy had an MRCP (a form of MRI) this week to look at his liver and gall bladder.  Unfortunately, the news isn’t great.  The liver and the gall bladder drain into the small bowel (intestine).  Because Billy’s small bowel is blocked, the liver and gall bladder aren’t able to drain as they should.  The byproducts of the liver and gall bladder are backing up in Billy’s body.  The oncologists suspect that’s why Billy is feeling more nauseous.

At this point, Billy is still ineligible for surgery to remove the blockage to his bowel.  (The surgery would be a huge undertaking for someone who was in prime health.  At this point, Billy is not very well nourished, and his body is in a weakened state.  Surgery would be very risky for Billy.)  So the oncologists have proposed a different solution:  to insert a percutaneous (“through the skin”) drain into Billy’s liver and/or gall bladder (on his right side), to drain the fluid that is backing up.  Billy thinks the procedure would be a good idea, so he will probably have a consultation with radiology on Monday (tomorrow).

At the same time, the MRCP also showed a pocket of fluid on Billy’s left side, just below his lung.  The nature of the fluid collection indicates that it is probably infected.  For now, the infection appears to be well-managed.  Billy is still on a major antibiotic (meropenem), and his vital signs (heart rate, blood pressure, and temperature) have been holding steady.  For now, the oncologists plan to leave the infected fluid alone.

Celebrating Life
When Billy is awake, we’re trying to make life fun.  We rejoice when he’s able to walk.  We laugh together at fun pictures and posters.  (Thanks, Aunt Robin and Bryan!)  We watch movies together.  And we enjoy the ornaments that people have sent.

Last night, we had fun opening some new ornaments.  I thought we’d share some with you.




From a dear lady in Texas who has never stopped praying for us, and who keeps sending cards and messages. She heard about Billy from her friend, who heard about Billy from his friend, and that friend is a friend of Billy.



A favorite, from the LaBlue family.


More to come!  Thank you for the ornaments, and for celebrating Christmas with us.  And thank you for your prayers.

How to Pray
  • For Billy’s liver.  It’s not working right or draining right.  Pray that the radiologists and oncologists would know what to do to help with Billy’s nausea.  And pray for a complication-free procedure to insert the drain.
  • For Billy’s bowel.  The oncologists believe that the blockage is from Billy’s tumor.  Pray for the tumor to decrease, and for the blockage to release.  
  • For Billy’s spirits.  This is a long, hard road.  Pray for endurance, and for Billy to feel loved and cared for.   Pray for God to meet the needs he has that he hasn’t shared out loud.   
  • For our family.  This is a tough thing to face.  Pray for strength, courage, humility, and grace as we work together to care for Billy and for each other. 

Wednesday, December 1, 2010

Answered Prayers

Sometimes, I wonder if God is listening.  Other times, it seems foolish to doubt it.

Sunday was a particularly hard day for me.  Late in the afternoon, I was sitting by the window in the family room, watching traffic just beyond the gates.  I was crying and talking to God about life, wishing I could just have a hug.

A few moments later, I heard a voice.  "What's going on, girl?"  It was Adrienne, stopping in on her way from Ft. Rucker, AL, to be with her family in Pennsylvania.  Her dad has a brain tumor, and she's doing her best to help him fight it--and to support us in the meantime.

I looked at Adrienne and just cried.  She didn't say anything; she just grabbed me and hugged me.  It was just what I needed.

Sometimes, in this journey with Billy, I wonder if God is listening.  We've been praying God to heal the blockage in his intestines; we wanted Billy to be able to eat for Thanksgiving.  He didn't get to.

But then other times, it seems like God must be doing something.  I can see the ways we're being taken care of.  And some of the requests for Billy are being answered.  The pinch in his left side has subsided.  (Yeah!)  He had an ultrasound done on his left side, and the pockets of infected fluid are gone, so they were able to remove the catheter.  Those seem like signs of progress!

But the cancer remains, and the only thing the medical team can offer is herceptin.  We don't know how well that will work.  Herceptin isn't a big cancer-killer...not like chemo is.  Then again, chemo is super-destructive, and Billy's body can't handle all that.  So we basically need a miracle...lots of them, in fact.

Lately, Billy's bilirubin level in his liver has been creeping up.  Bilirubin is a yellow substance that results from a breakdown process in the body, and it is excreted through bile and urine.  It's also the substance that causes the yellow tinge in a bruise.  When the bilirubin level goes up, a person's skin can take on a yellow hue.

The doctors are thinking that the constant flow of IV nutrition (TPN) is negatively affecting the liver, so they're trying a different feeding schedule.  Once they started that new schedule (last week), however, Billy started feeling a bit more nauseous.  He used to be able to enjoy a variety of beverages (tea, juice, milkshakes, smoothies), but they seem to mess with his stomach now.  He's been coughing a lot, trying to get rid of the nauseous feeling.

So...would you pray for some of these specific things?

  • The blockage in Billy's small bowel to release, so that his GI tract would work and he could drink some healthy things!  
  • Nutrition...The best kind of nutrition comes from food.  TPN is not ideal, and it's not ideal long-term.  Pray that Billy's body gets the nutrition it needs to be healthy and fight cancer.
  • Nausea...that it would go away.  (And that the coughing would go away too.)


More Items at Zazzle.com
In the spirit of our invitation to join in our Christmas ornament tradition, we thought we'd make the Ask Me About BILLY ornaments available for everyone.  Those have been newly posted on our store.


New Ornaments


Additionally, we thought we'd release an alternate design for the t-shirts and hoodies.  Instead of having text on both sides, these hoodies and shirts just have the blog logo and address on the front.  The back is plain.


New Hoodies


Thank you for all of your support!