Thursday, October 7, 2010

Unexpected Changes

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

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

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

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

But that’s not the case anymore. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There are a lot of hard decisions ahead.

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

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

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

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

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

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

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

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

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

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

18 comments:

  1. My heart is so broken for all of you. There are no words that can bring any sort of healing for you but please know that I don't think it's ridiculous at all to blog at a time like this. I, to, tend to process things better when I can write them down and sort through them. It doesn't solve anything but it sure helps to get it all out.

    Thank you for sharing everything, no matter how painful. It has helped those of us who aren't right there with you to have a bit of understanding (a small bit but a bit none-the-less). Your struggles and feelings and emotions are real. There's nothing wrong with that. And as for hope, there is always hope in Jesus and He is Who we can turn to, lean on, rely on, and find comfort in. I will pray for all of those things for you and your family and for Billy. I pray for God's miraculous hand to heal the infection and ultimately heal the cancer.

    Thank you Michelle for your sweet spirit, your beautiful words and your obvious love for your brother. God bless you guys!

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  2. Michelle,

    I will be praying for you all. My plan is to drive up from Hunter and see Will a week from Monday. Right now I know his family is what gives him strength. I will write to you on facebook closer to then. Until then, keep your faith and your strength, God is with you all in these trying times along with all of my prayers.

    Sean Richardson

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  3. we will continue to pray for God's will. We have high expections for Billy and so does God. Please take care of yourself Michelle, and know that we love you all.

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  4. Peace. I have been praying for Peace, for all of you. Do you know what God told me? "Give this to me. Stop taking it back. I am with him. I have always been. I will always be. Let me take control of this."

    I continue to pray for peace, the peace of Philippians 4:7 "And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

    Will is the very best of men. His life, his relationships, the life matters to so many. His life, the way he lives it has and will continue to change the lives of others. God has and continues to work through Will.

    All my love and prayers,
    xo*tricia

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  5. Michelle, I met Will when he was the stage manager for the Spirit of America show here in DC. I was impressed that he was able to plug into such a leadership role, especially in a mission that he probably was not trained for. He did that job like he had been doing it for years. I remember shaking his hand and congratulating him when he got promoted to SSG and when I learned he was going to be a pilot. I knew he was going to set the world on fire. I was so shocked to hear of his illness. It certainly seems grim. Please rest assured that Jesus Christ can and has overcome death. We all will give up this earthly body one day. This life on earth is a tiny, tiny snippet of time compared to eternity with Christ. Just think, no more pain, sorrow or illness. If Will does not survive this illness, remember what is in store for him once he sheds the earthly body for the heavenly body. What will remain is the qualities that you have written about, the young man that I met a few years ago. The willingness to help others.
    I am praying for Will's recovery but in case that doesn't happen, take comfort in knowing that Will is with Christ.
    Blessings to you and your family,
    Mitch Spray

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  6. I agree with Tricia, that's the thought that crossed my mind as I read this blog. One of my favorite songs is "Peace Be Still" by Rush of Fools-an amazing version of the song! As well as "Wonder of the World" :) I pray that peace, contentment, faith, encouragement and thanksgiving fills your hearts. Even though it's hard to be thankful for something this hard, "Let the peace of Christ rule in your hearts, to which indeed you were called in one body; and be thankful."-Col 3:15 "Peace I leave with you; My peace I give to you; not as the world gives do I give to you. Do not let your heart be troubled, nor let it be fearful."-John 14:27
    Prayin' hard
    Darya

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  7. your family is in our prayers will have the chaplains at my work pray for him also, so sad and sorry love to all linda friend of wes and adriennes

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  8. We continue to pray for you all.

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  9. Linda B said:
    Michelle, I just read the latest update and my heart is aching for you all. Hold Billy close, he knows how much you all love him and are there to support him. It's ok to cry, you need that release and I'm sure Billy would expect that.
    Our God is in control and there are so many prayers lifted for all of you. I know God will continue to give you strength and we all need to pray for Gods healing.
    IN Christs love,Linda

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  10. Praying for Will's "Billy" in Alaska. I am so very sorry that all of you are going through this. Praying for healing for Will. Stay strong; Will is a fighter. We will all fight for him in prayer!!! The God of ALL COMFORT BE WITH YOU.

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  11. I don't know you or your brother personally, but Tricia Smith Boutelle posted the blog and asked for supporting prayers. I pray for you and your brother and for your family.

    I lost my mom in November and it was completely unexpected. I was told all the usual things - that God had a plan and that all things happen for a reason. Those words didn't help me in the least. I'm sure you will hear similar things while Billy fights. I was angry and hurt and sad despite all rational thought. I was angry with God for what happened. But He does what He knows is right, and while it may make no sense to us at the time, and we may feel a struggle to accept His decisions, we have to hold on to our faith that He is doing what only He knows to be best.

    I am sure that you and your family are praying for the doctors to find treatment and for healing for Billy, and I will leave that to you. What I pray for you, Billy, and your family is for continued faith in Him. I know you're trying to be strong for your brother, and even in not knowing you, I love you for that. Just don't forget that you're allowed to be weak sometimes, too, and that God can be strong for you.

    Love be with you, Amanda

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  12. Dearest Michelle, These are the moments that declare Gods existence and strength. Evidence of his love for man has shined with much avail through Will's past, and will be complete in Will's future. I have no doubt Gods mission in Will is not complete. Your mission has been intertwined with Will's which intern has included us all. Will has and will always be, an inspiration of hope and strength. The greatest of tasks are always the most difficult to accomplish. Continue to be strong and never give up hope. Dig deep and stay the course. I pray God will continue to shower his grace, peace and strength on your, your family and Will's heart and mind. We pray that God will reveal his presence and his plan during these darkest of hours. God is real and will not leave your side. His angels have been posted to guard Will and your family. You will always have our love and prayers. God would not provide such a risky mission to anyone but his child and the Irish.. ;) We are, by nature, the most collective and fierce of fighters. Please relay the message to Will so that he has not forgotten that he is already on the winning side.

    With all of our continued love and prayers.

    Tommy and Christin Daniels ( The crazy yet courageous New Yorkers)

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  13. My thoughts and prayers go out to Will and his family. Our family got the pleasure of meeting him while in flight school. We were stationed there with Will. He is one of the kindess men I have EVER met! Stay Strong Will...The Pastoreks are praying!!!!

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  14. Michelle and family, The prayer chain is growing in Colorado. Keep your faith in the Lord, Miricles do still happen each and every day. Take this time to be together. It is sad how we seem to only get together during these kind of circumstances. Thank you for your words in this blog. You are a strong woman.

    God Bless,

    Joyce Morse

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  15. Dear Michelle,

    My friend Jennifer who knew you from college told me about your story which led me to your blog. My heart and prayers go out to you and your brother and your family. I know only a piece of what you are going through, as I too have had a younger brother who battled cancer. It is unimaginably hard to watch your younger sibling fight a fight that you are powerless to help with. Luckily, love does wonders, and from reading your blog, you have bottomless love for Billy. My brother had brain cancer, and at one point, the doctor's were certain that he had less than 12 hours to live and that we needed to say good-bye...he lived another year and a half of a full and meaningful life. I've learned that doctors are smart, but nobody can put a time stamp on a life, and nobody can underestimate a person's desire to live.

    You seem like a very strong person, but I want you to know that its okay to not be strong all the time. As an older sister, you probably take a lot on your shoulders, but you need to take care of yourself so you can be there for Billy. Talk to friends, family, counselors. Walk. Eat. Sleep. Pray. Above all, spend time with Billy. Right now, at his side is right where you need to be, enjoying your brother.

    It is easy to forget in 'normal' times that we are all mortal; as a result, in a sense, these moments you spend with Billy will be the most beautiful ones of your life. You will live more purely and honestly than you ever have knowing that each moment is truly precious.

    Having lived through the diagnosis, life, and loss of my little brother, I can tell you that I am a better person because of how he lived. I have no regrets because I never passed up an opportunity to spend time with him when I could. I carry his light proudly every day, and my son, just six months old, will know his uncle. I imagine that whatever happens, you will carry Billy's story in you and share it with another person as I have shared mine with you.

    Tell Billy he's got an angel named David pulling some strings for him with the big G, and no matter what, Billy will be wherever God needs him most. I pray that you and your family find love and hope in every corner of your hearts - hope, remember, is the antidote to fear.

    Please accept my love and prayers, across miles and humanity. You don't need to have met me to know that we are kindred spirits, family.

    God bless and peace,

    Stefanie King
    New Hampshire

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  16. Michele and Family...

    You do not know me, I found out about Billy's fight through Nikki Rouse who's son is a friend of your Billy. My heart goes out to you all and I will keep Billy and all of you in my prayers in the hopes that that Miracle will come and soon.

    My family too has been touched by this horrible disease, and lost two close family friends in the last 6 years...but Miracles do come...my Sister is still with us and healthy as can be after battling brain cancer several years ago...please take care of each other and yourselves...you are in the hearts of so many and no matter the outcome, your faith will guide you through...

    Peace, Prayers and Love
    Mary Adams
    Ohio

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  17. Michelle,
    The first time we ever saw Will he did not even know us and extended a hand to help us. It fills us with sorrow that someone with such a kind nature has fallen on such rough times. We want you to know that Will is in our hearts, minds and prayers. We would also like to thank you for doing this blog to keep everyone informed. It is good to know that Will has people close that are so much like him, with hearts of gold.

    Jason and Nicole Kelley
    Enterprise AL

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  18. Michelle,
    We were fortunate enough to have met Will through flight school. A small group of us went through WOC school with him and our little group stayed pretty tight throughout the rest of what the Army threw at us with flight school. We (Kristie and I) really became close with Will through his new addition to his family, Buddy. Will is, as you all know, really truely a great guy. We consider ourselves better off for having met him. We are praying for him and your family, and we remain hopeful that he will beat this.
    As we have always said: everybody loves Will. We trust he and his family know how much that man is adored by everyone he meets!

    Mike and Kristie DeForge (and Teyha our dog)
    Kearney Nebraska

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