Difficult Conversations and Small Celebrations

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When Sam dropped them off for SERE school.

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

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

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

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

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

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

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

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

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

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

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

Some ways to pray:

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

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