Thursday, September 30, 2010

Moving, Chemo, PayPal, and a Whole Lot of Friends

I know it's been a while since I last wrote an update.  In a situation like this, 24 hours can feel like an eternity.  Even being here,  sitting with Billy, hearing doctors and nurses answer questions, and watching as his treatment continues, 1 day feels like forever.  The time passes so fast--but so much happens, it's hard to believe we call that a day.

Today marks one week since Billy was diagnosed.  10 days since he first checked into the emergency room.  A collection of eternities.  But even in this crazy, mixed up, bizarre situation, amazing things are happening.  I thought I'd give an update on some major things (sort of an FAQ, if you will), and then share some highlights from the past 36 hours or so.

So when is Billy moving to Fort Gordon?
Well, he may or may not go to Fort Gordon.  But don't panic!  This may be a very good thing!

The original idea, as we understand it, was to have the army medical team assess him at Fort Gordon, and then he would be sent somewhere for treatment.  The army wanted to put him in a place that felt like home.  But anyone from Colorado knows that Colorado is a huge place.  Durango is a decent-sized town, but it's 4 hours from the nearest city (Albuquerque, NM), and it's 6+ hours from Fort Carson (an army hospital location).  Colorado is where we grew up, but it's not where most of the "kids" (including Billy) feel at home.  "Home" is with the people we've loved deeply and shared significant life experiences.  For Billy, "home" is with his family and with the army.  Home is defined by people, not geography.

So my mom, Danny, and I were brainstorming, and we started thinking about where "home" might be for Billy.  He wants to be in an army hospital.  The more we talked, the more Walter Reed made sense.  It's in Washington D.C.  It has an outstanding reputation, and it would give lots of people access to Billy.  Regarding airports, BWI and Washington-Dulles are both very close.  D.C. is relatively close to my mom's side of the family (in MA), and it would be easier for our immediate family to come see him.  Walter Reed just made sense.

The “Williams Cousins” at Kelly and Kyle's wedding this past August.

But it doesn't matter what we want.  What matters is what Billy wants.  Last night, my mom mentioned the idea of Walter Reed to Billy.  Not only did we want to see if Billy could ultimately go to Walter Reed; we wanted to see if he could go to Walter Reed directly, skipping Fort Gordon altogether.  But her delivery of the question was hilarious.  Earlier that night, the nurse had started Billy on a nutrition feed (Yay!  He's getting nutrients now!).  My cousin, Bryan, asked him what he was having for dinner.  "A cheeseburger!" Billy quipped, as a wry grin spread across his face.  (He thinks he's so clever!)  We all laughed.  (His sense of humor is very much there!)  So anyway, as my mom was explaining the Walter Reed idea, talking about how much more sense it made for him to move directly to D.C., the excitement in the room started to build.  My mom, just going with the flow of the conversation, chimed in with another thought.  "Yeah!  Why have a cheeseburger when you can have a steak!"  The room erupted in laughter.  A cheeseburger and a filet?  What an analogy!  And then she caught herself.  Turning to me, she said, "'Chelle, if you write about this on the blog, make sure that Fort Gordon doesn't end up feeling like chopped liver, okay?"  It's not that we don't appreciate Fort Gordon.  It's just that a move directly to D.C. makes a lot more sense.

So when is Billy moving to D.C.?  Well, we don't know.  We haven't gotten the 100% clearance that he will be moving to D.C.  It's just what he wants and what we want.  It makes the most sense.  We're just waiting to hear back from the army.  He can't move until chemo finishes, and he'll finish his last bag on Friday/Saturday around midnight.  So it could be soon, but we're not 100% sure when it will happen.  We will keep you posted, and we'll let you all know when we know.

So, how's the chemo?  Has he responded to it yet?
There was some rumor that there would be a CAT scan yesterday to see if he had responded to the chemo.  The rumor was not true.  We spoke with the oncologist, and he helped us understand a lot more what's going on.  The chemo will take weeks--not days--to have its effect.  We won't know for a while. 

The chemo seems fine.  Billy is very sleepy these days.  He feels worn out today and is sleeping a lot.  But, he also took a shower today (a significant effort), he took a "walk around the block" (translation:  a stroll around the 5th floor), and he sat up in a chair for a while (he has been in the hospital bed most of the time).  So right now, he's sleeping.  It's hard to say if the sleepiness is from the chemo, from the activity, or from any of the various medications he's on.  The chemo is going to deliver it's blow at some point, and it will wear him out; we're just not sure when that will happen.  The chemo can--and probably will--hit his red and white blood cells.  So that puts him at risk for infection.  (If you're thinking of coming to visit...please make sure you stay healthy!)  We're doing our best--and the nurses are doing their best--to keep him healthy.  It's one thing you can pray for--that his body would stay healthy and would heal quickly while the cancer cells die.

What about the PayPal account?  Isn't the army covering medical costs?
Well, yes, the army is covering the medical costs.  At first, we didn't know what costs would come up, so Billy's close friends set up the account for people to give.  But as time has progressed, it has become clear that although Billy's medical costs are being covered, there are a lot of external expenses that are not.  (Many people have stepped in to help, and they have given generously.  Thank you to all for your time, your prayers, and your financial support!  We are in awe of the ways people have responded to help out, and "thank you" never feels like enough.)  That said, our family is all spread out, and it is going to be expensive for everyone to fly back and forth.  There are living expenses that will build over time as his treatment continues.  So any funds that are given to the PayPal account will be used toward the needs that come up during Billy's treatment. 

I know that PayPal doesn't work for everyone.  We are working on some other options.  We will let you know once something is set up.

Again, thank you to all who have given.  We are in awe of the generosity we have witnessed.

Visitors
Family and friends from all over have come to see Billy.  Hugs are exchanged.  Stories are told.  Laughter happens.  It’s good medicine for us, and it offers all of us things that the hospital can’t quite give.  Some recent guests...

  • Danny – the youngest of the Bohren/McCotter family, who flew in from L.A. and surprised Billy yesterday morning
  • Bryan – our cousin from MA (left-most cousin in the picture above).  He has younger 3 sisters and calls Billy the “brother he never had.”
  • Tyler – all the way from Iraq!


Tyler and Melissa

  • Nate – all the way from Germany!


Billy and Nate

  • Dustin – an army buddy who drove 20 hours one way to see Billy (even though he just had a baby!)


Dustin and Billy

  •  Scott – a childhood friend of Dustin’s who had met Billy years ago

And the faithful friends who are still around…
  • The Lyew-Ayee clan:  Melissa …Melissa parents Doug and Judy…Melissa’s sister Laurie, and her 3 kids…Melissa’s sister Stephanie and her 3 kids…Melissa’s brother, Jonathan…Melissa’s cousin, Warren


Melissa, Laurie, and Warren

  • Melissa and Tyler’s pastor (Matthias) and his wife, Danielle
  • My mom


My mom (Jill) and Billy

Becoming Family
It’s starting to feel like a big family here.  We’re all in this together, and the support of family and friends has been outstanding and amazing.  Some snapshots…

I spoke with a close friend the other day.  Her children pray every night for my brother and my family.  I was overwhelmed (in a good way) with how far and wide this is reaching…that parents would tell their children (who are 6 and 3) about my brother, and that the kids would pray.  My friend tells me that they pray every night for us, “and,” she said, “that’s a good thing.  They’ll be praying for a long time.  They’re still praying about the oil spill.”  I laughed.  How could children who have never met my brother persevere in prayer so much?

Another friend sent me a text with a picture.  They haven’t met Billy either.  I think the picture says more than words ever could.



And finally, my room mate, coworker, and dear friend, Sara, did something that blew me away.  Last Thursday was the day I heard about Billy’s diagnosis.  As I sat in my office at home and told Sara what was happening, I remembered a story from last year, from a 20-something friend (Daniel) who had been diagnosed with Hodgkin’s Lymphoma…

His had family decided to create a t-shirt on his behalf Daniel and his wife (Casey) to help rally people together.  Every Wednesday, we’d all wear the t-shirt and pray for Daniel’s healing.  After several months of chemo, Daniel was declared disease-free.  He’s now healthy and doing well.


Daniel and Casey’s T-Shirt…it says “More than Conquerors” in 12 languages  (The idea comes from Romans 8.)

As I talked with Sara, I mentioned the t-shirt idea.  Maybe there was some way to make a t-shirt to help rally people together.  It would be something that could help us tell the story of what was happening.  It would join us together, and remind us to pray.  It wasn’t until several hours later that I noticed what Sara had done…


Sara and Michelle

Sara had gone and grabbed one of her old t-shirts.  On the front of it, she had written, “Ask me about BILLY.”  When I saw it, I cried, again overwhelmed by the love of my friends.  My brother’s illness is impacting my friends, and they are reaching out in creative ways to love me and to love my family.

Thank you to everyone who has prayed, spread the word, networked, shared information, and just asked how we’re doing.  Thank you for everything you have done.  We still believe that miracles could happen.  In small ways, they actually are.

Tuesday, September 28, 2010

Reflections

We heard from our friends, Erin and Debbie, that Billy was going to have his abdominal fluid drained again today.  They had arrived at the hospital early this morning, and then shared the news.  When we arrived at the hospital around 11:30am, he was already gone for the procedure.  Not too long after that, we spotted his bed rolling down the hallway, back toward his room.  We saw his face, and watched the grin spread across it.  He had spotted our youngest brother, Danny, who had arrived late last night.  :-)  "What's up?" he said, as he continued to roll by us, into his room.

We've had a good time with him, talking and laughing.  Sharing jokes.  But in the middle of all that is the reality of cancer:  the NG tube (nasal gastric tube) that sucks out the contents of his stomach, the port on his left shoulder, the tape and bandages covering the lesions from the two chest tubes.  He is incessantly thirsty, and he can't really eat anything.  A few people were around this morning when he "ate something and held it down for about 25 mintues"--but I haven't quite gotten the whole story, so I can't relay the details.  Things have seemed to get a bit better (the main thing being that his pain is under control), but there's still the reality that he has stomach cancer, and he is not holding in any nutrition.  The nursing staff mentioned starting him on intravenous feeding today.  I'm not sure if that has happened yet.  Often, things move a bit slower than you'd expect.  It's a whirlwind, and it feels so slow at the same time.  So much happens in a day, and yet so little.

In the middle of all of this, our friend Erin asked me if I'm keeping a journal.  It's a good thought, and I probably should, because there are so many things going through my head.  But there's no time!  I sit down to do one thing (to write this blog, or to contact someone who has sent a message, or to phone a doctor who might be able to help us sort this out), and I realize there are 20 things left for me to do.  There is no time for me to journal and reflect on what is going on.  Billy and my family need my help too much.  It's not that I feel pressured.  I really want to help!  There are just so many things to help take care of.

As I've thought about Erin's question, I've realized that this blog might be a good place to share some of my reflections.  I hesitate, because this is about Billy much more than it's about me.  But you can't talk about Billy without talking about the huge network of friends and family that he has impacted, served, loved, and touched deeply.  Everywhere he goes, he makes friends.  As my mom says, it's like he casts a spell on people.  People all over love him deeply.  And you can't talk about Billy having cancer without talking about the effect it's having on the people who love him.  So I thought we could take time to do that today.

I've tried to write positively and hopefully on this blog, because I am hopeful.  I believe God could heal Billy, despite anything that any medical facility says.  But his diagnosis is "poorly differentiated gastric adenocarcinoma."  It is stage IV, meaning the cancer has spread beyond his stomach.  Because of that, the doctors here have said it is inoperable.  The only option is chemo, and we don't know if that will work.

A few days ago, as Billy lay sleeping in the ICU, I stood by his bed and watched him.  All I could do was cry.  I had my Bible in my hand, but I couldn't even read it.  In my head, I believed that God could heal my brother.  But in my heart (and even admitting this in writing is difficult), I wondered if God really would.  I was afraid.  What if I read scripture out loud, and the people around me heard me, but God didn't do what we asked?  What would that say about the God that I follow?  My voice felt stuck in my throat.  In the middle of all that, slowly, I began to read the words to Psalm 46.  It's the scripture I held onto when Billy was in the 82nd Airborne, and he was stationed in Iraq during the war (2003).  At that time, I listened to the radio every day, hearing news of bombing in Fallujah and Bagdad, wondering if my brother was okay.  Every time the phone rang, I was afraid of what I'd hear.  It felt like my world was threatening to fall into the ocean...

During the war, Psalm 46 spoke to some of my fears.  Now, it once again feels like my world is threatening to fall into the heart of the sea.  Once again, Billy's life is threatened.  And I am fighting to believe that the Psalm is true.

Psalm 46
1 God is our refuge and strength,
       an ever-present help in trouble.
 2 Therefore we will not fear, though the earth give way 
       and the mountains fall into the heart of the sea,

 3 though its waters roar and foam
       and the mountains quake with their surging.
       Selah

 4 There is a river whose streams make glad the city of God,
       the holy place where the Most High dwells.

 5 God is within her, she will not fall;
       God will help her at break of day.

 6 Nations are in uproar, kingdoms fall;
       he lifts his voice, the earth melts.

 7 The LORD Almighty is with us;
       the God of Jacob is our fortress.
       Selah

 8 Come and see the works of the LORD,
       the desolations he has brought on the earth.

 9 He makes wars cease to the ends of the earth;
       he breaks the bow and shatters the spear,
       he burns the shields [b] with fire.

 10 "Be still, and know that I am God;
       I will be exalted among the nations,
       I will be exalted in the earth."

 11 The LORD Almighty is with us;
       the God of Jacob is our fortress.
       Selah

In the middle of this confusing world, there's a lot going on.  Writing this blog has been helpful.  It's a place to focus and direct my thoughts, and it's a place to communicate with all of you.  It keeps my mind going in a particular direction.  But it also helps me to help Billy.  I want to be able to explain this stuff to all of you, so it helps me to ask better questions.

The situation is serious, and we're trying to figure out the best possible course of action.  We're also trying to understand how the army works, because the army has been a huge part of Billy's life for the past 7 years, and they are playing a huge role in his care.  Here are some things we've learned...

  • The army is a huge network.  Even though soldiers may have said their goodbyes when they left one place (D.C., for example), they can (and likely will) see each other again later (in a place like Ft. Rucker, AL).  Billy--and a lot of his army friends--are connected to people all over the world!
  • Billy has made a lasting impression on a ton of people.  Everywhere we turn, people are offering help in concrete and specific ways.  It is amazing to watch!
  • Tyler just arrived tonight.  He is stationed in Kuwait, and the army expedited an approval of emergency leave for him to come and be with Billy for a while.  The army even paid for his plane ticket (and it wasn't cheap)!
  • Billy was stationed at Fort Rucker in AL.  When they heard about Billy's diagnosis and this blog, they decided to publicly display the blog so that people could keep up with what's going on!
  • All over, people are offering to step in and help.  People are connected to information, resources, and other people who are helping us to sort through all of this.  There's a lot to sort through--but it's amazing to have so much help!  

As we understand things now, there are three major geographical steps to this process.

  • Step 1.  Billy is an inpatient at Baptist Hospital in Miami.  He's undergoing one round of chemo, so that he can move to the next step.
  • Step 2.  Billy will be moved to an army hospital to be evaluated by army physicians.  The plan is to move him to Fort Gordon, GA, sometime after he finishes this first round of chemo.  He should finish this round on Friday night, just before midnight.  
  • Step 3.  The army will assess Billy's condition, and give a suggestion for long-term treatment.  (We still have to figure out what all of that means.)  And then Billy will be moved to a long-term treatment facility.  

It's not that Billy couldn't be treated in Miami.  He's just here because he was on vacation in the Florida Keys, and this is where he went to the ER.  But Florida isn't home.

It brings up an interesting question, though:  Where is home?  For our family, Durango, CO, is where we grew up.  But for many of us "kids", Durango doesn't feel like home anymore.  Billy and I actually talked about this a few weeks ago, when we were together for his graduation from flight school.  We talked about home--and how it's not really a particular place, but more among the people we love deeply.  For me, home isn't the house I grew up in.  It's spending time with my family, wherever that is.  And that's what makes this situation difficult, because my family is so spread out.  My mom, Danny, and I are currently here in Miami.  But what about long-term treatment?  The army base in Colorado is in Fort Carson--but that's an eight-hour drive from our hometown.

At this point, being near Durango doesn't feel nearly as important as being in a place where our family can be together, where Billy can get the best treatment possible, and where we can see Billy as he works through this whole thing.  I don't know how all of this is going to turn out in the end.  I don't know how much longer I'll have to spend with my brother...  (It makes me cry, just thinking about it.)  But whereever it is, I want to be able to spend as much time as I possibly can with a brother who means the world to me.  But that's how I feel about it.  I think it ultimately depends upon what the army says, and what Billy decides to do.

The set-up here has been amazing.  Melissa has been amazing.  She opened up her home for us to stay for as long as we're in Miami.  Adrienne came from Fort Rucker, AL, and cooked us meals.  Melissa, Adrienne, and Nate (Germany) have shuttled people to and from the airport.  Melissa's family has prepared meals.  Her parents have helped us think about treatment.  Nate's mom bought us dinner last night.  Adrienne did our laundry.  It his been incredible to have such a support team, so that we can be at the hospital, interacting with Billy's medical team and asking questions.  We have not had to leave the hospital one time during the day--and it has allowed us to spend a lot of time with my brother, caring for him and helping to decide what would happen with his treatment.  The time in Miami has been phenomenal--more than I would ever have expected.  Thank you to all the friends who have stepped in to care for my brother and my family!  We could not do this without you.    

As I've pondered everything that has been going on, I've also been thinking that this blog might be a good place for some of you to share your thoughts.  Perhaps you might like to share one of your favorite memories of Billy, or some way he has impacted your life or the life of someone you know.  Feel free to share in the comments below.  I'll be sure Billy hears them!

Here are a few more things you can be praying for now...

  • Please pray for the chemo to knock out the cancer.  
  • Billy still needs nutrition.  He hasn't eaten anything in over a week.  Pray for his body to be able to receive and hold onto food.  
  • My family has a lot of questions, and we want to get time with the oncologist.  But we haven't been here early enough to talk to the physician while he makes his rounds.  Pray that we'd get good sleep tonight, and that we'd wake up early enough to get here in time to talk to the oncologist.  Pray that we'd get a lot of clear answers.

Thank you for everything!  Thank you for your prayers.  

Want More Info?

If anyone is interested in more info, there's a growing group on facebook that you can join.  I'm part of the group, so you can probably find it from my Facebook page.  Or, just search for Will's Hope 2010.  I have been sending messages to all group members when I update the blog, so that's also a good way to know when there's a new post.

There's also a Facebook page called "Praying for Billy".  We're trying to get people praying around the clock, with people committing to pray at particular times each day.  If you'd like to be part of that, feel free to leave a message there.  I'm trying to be specific about prayer requests...and some things have been happening!  So please keep praying, and asking for specific things.

Thank you all for everything!

Automatic Emails When the Blog Gets Updated

There's a way for me to send you emails when I update the blog, so you don't have to keep checking it, but you have to send me your email address.  If you'd like to do that, send me your email.   Feel free to send it to Wills.Hope.2010@gmail.com.  I won't respond to those emails, but I will make sure you get automatically updated.  Include "Flying High and Fighting Hard Email" in the subject line.

Treatment Plans

Note:  This was posted at 3:30am on Tuesday, but it refers to everything that happened the day before, on Monday, September 27.

Holy cow!  What a day!

At 8am on Monday, we woke up to quite the phone call.  A social worker informed my mom that the army had made it's decision.  The orders had been signed and Billy was going to be moved to Eisenhower Army Medical Center in Fort Gordon, GA.  The army would evaluate Billy's condition, and then he would be sent to Colorado for treatment.

In any normal life, with any minor medical issue, I guess such a phone call would make sense.  But after yesterday?  When the move from the ICU to the 5th floor wore Billy out so much?  When the move was painful and difficult?  If an hour-long move from one floor to another took so much out of him, how could he possibly be ready to move hundreds of miles to another medical center?  Last night, we had decided to start chemo to try to knock out some of his cancer.  If that could happen, his pain could lessen.  Maybe he could start to hold down some food.  And then, hopefully, he'd be ready to move.  But not yet.  He didn't seem ready.

It was a shocking message in and of itself.  But it was a jolting, abrupt message early in the morning in this strange new world--a world that doesn't seem to make any sense.  Sometimes (in my "normal" life), I like to snooze when my alarm clock wakes me.  But I've never once set an alarm here.  I've gone to bed at 2 or 3am, and I somehow wake at 8am every day.  You wake up, and your mind starts going.  You realize that life isn't normal, and you're not in your own bed.  All of a sudden, cancer entered our world, and life seems like it doesn't make much sense anymore.

Needless to say, that 8am-phone call woke me right up, even after going to bed last night at 3am.  We got ready as quickly as we could, so we could make it to the hospital by 10am to see Billy and figure out what was happening.

We got to Billy's room, and he was as confused as we were.  Right away, he asked, "Why are they talking about moving me?  I thought we were staring chemo."  We had no idea.  And it was a bit disorienting.  "I don't get it," he continued.  He pointed to his chest.  "We had this port put in a couple days ago, so that we could do chemo, right?"  And we agreed.  [I'll explain this in a minute.]  "And that's why I got the chest tubes, and it's why I was moved up here [to the 5th floor tower]."  It was more a statement than a question, but we nodded anyway.  He was right.  All of the physical distress--the weariness from moving, the pain of moving, the installation of the port--all of that was so that he could take chemo.

And then to be told that he was moving to another facility now, without any chemo, didn't make any sense to us.  His pain had just been stabilized.  We didn't want to jeopardize that again before we tried to use chemo to knock out some of the cancer cells.

Allow me to pause the story for a sec, while I explain a couple of things...

"The Port"
The purpose of the port is to allow delivery of chemotherapy to the blood stream.  The port deposits the chemo to the inferior vena cava, just above the heart.  The chemo gets mixed with a large volume of blood right away and circulates throughout the body.  The chemo attacks all of the cells in the body (not good), but it attacks the fastest-growing cells the most.  Since cancer cells grow the fastest, they take the biggest hit.  But the rest of the cells take a hit too.  The hope is that the body regenerates the good cells, and the cancer cells stay dead.  I don't understand the whole thing completely...but in some cases, it really works.

Anyhow, the port gets put in for chemo delivery.  But there are risks to inserting the port.  One of them is "pneumothorax".  It's rare, but it happened with Billy.  In normal situations, there's a lining around the lung.  In the space between the lining and the lung, there's fluid.  When pneumothorax happens, air gets in that area around the lung.  So when the diaphragm moves to bring air into the lung, the pressure doesn't change like it should, and air can't come in the lungs.  (When people talk about lungs "collapsing", this is what they mean.)  It's not a good situation.  In Billy's case, this happened.  So the medical team here had to put in two chest tubes (very painful) to allow the air to get out, so that Billy could breathe.  During the first night, he was on a ventillator.  Over time, that was stopped.  Eventually, one chest tube was removed in the ICU.  The other was removed this morning!

The Move
The move out of the ICU was always planned.  But the move up to the 5th floor tower was so Billy could begin chemo.  Moving him out of the ICU yesterday was good news!  But it was a tough day, and it wore him out!  He was exhausted and in pain for a lot of the day.  It wasn't until late yesterday evening that they seemed to be able to regulate his pain medication, and he was able to sleep.

So back to the story...
The phone call had informed us of a move to Fort Gordon.  Why move there, when Billy had already been evaluated here?  That's where the presence of Billy's friend, Nate, was invaluable.  Nate is an "army insider", currently on leave from Germany.  As we asked questions, Nate was able to explain the "army way".  "It's not that the army doesn't trust the doctors here," Nate said.  "It's just that they have their way of doing things--the army protocol.  And it's in army protocol to move Will to an army facility to have him evaluated by army doctors.  And then the army will decide on the best place for his care."  It makes sense.  As the army sees it, Billy is their responsibility, so they're going to handle his care.

But they won't do it blindly, without regard to Billy and what he needs.  Together, my mom, Billy, Nate, and I talked with the patient care facilitator and the social worker about the options.  We talked about Billy's pain and his current state.  His stomach is currently shot.  The cancer is so strong, his stomach isnt working.  It's building up a lot of fluid, and that's causing a lot of pain.  We can address the fluid.  The pain may go away for a time.  But if we don't address the cancer, the fluid will keep coming back.  And so will the pain.

We knew a move to an army hospital would happen eventually.  But the most pressing issue was dealing with the cancer.  If we could just knock some of it out, then maybe we could get some of the fluid to go down.  Maybe we could get his stomach to process some food.  And maybe some of his pain would go away.  I say "maybe" because chemo isn't guaranteed to work.  A lot of times, it works.  But there's no guarantee.  And there are risks to consider.

However, at this point, we haven't gotten very far.  Billy's pain has been regulated, but we have to do something about the source of the pain--the cancer.  And the only thing we have is chemo.  Billy's doctor said he would be okay with moving Billy after one round of chemo, as long as he would be moved to another medical facility.  So Billy decided we should go for the chemo.  Wait on the move.  See what happens.

At this point, there's so much more I could write about the details of the day.  Instead, I'll give a few brief summary.

More friends came to see Billy today (Monday) .  Some of the same visitors were around...

  • Kelsey (from D.C.)
  • Nate (from Germany)
  • Melissa (married to Tyler, who is on his way back from Kuwait)
  • Judy and Doug (Melissa's Parents)
  • Jill (Billy's and my mom)
  • me :-)

We also had a few friends fly in from Durango, CO...Debbie and Erin.  Erin and Billy have been close friends since high school, and Billy has been an honorary member of her family ever since.

Also, once again, Laurie and Adrienne did a stellar job as our support team!

So how is Billy?
Tonight, after everyone left, I asked Billy if there's anything he'd like to share with the world.  "Today was a good day," he said.  "I felt really good, and I feel like we're making progress."  I asked what he meant by that, and he referred to the reduction/regulation of pain.  [He got a PCA today...a device that allows him to control the delivery of his pain medication.  And that really helped!]  I asked how he was feeling about chemo.  He knows it's a poison, and he wasn't wanting to do it at first.  "You do what you have to do," he said.  [Such an army mantra!]  "We'll get through this!"  His attitude is so great!

As he sat up tonight to try to grab something on his own [he's still got his independent spirit...and friends who know either one of us will know exactly what I'm talking about!], I told him, "You know, when you get through all this, you're going to have to do a ton of situps to build up your abs again."  "Oh, I know," he said confidently.  And he's still talking about running a marathon with me sometime.  Maybe not in the next nine months...like we planned to do together next June in HI...but eventually.  It's a good sign.  He's got a lot of fight in him.

And he's right.  Today was a good day!  Despite the difficulty, there was fun and laughter.  Billy was punchy and witty.  He was joking around and always ready to fight back.  It was fun to see family and friends "messing with each other."  It sort of feels normal.


From Left:  Erin, my mom, Debbie (Erin's mom), and Billy. A few laughs and smiles after my mom ambushed Billy with a paper airplane (made from orange tissue paper).


The joking and fun and time with family and friends feels almost normal...except that all of it is happening in a hospital.

So what's ahead?  When will Billy be moved?
We're not completely sure.  He'll be at this hospital until his chemo treatment is finished.  He's on 3 kinds of chemo.  The 1st bag is done in an hour.  The 2nd kind takes 6 or so hours to finish.  And then there are 4 bags that take 24 hours each.  He started the 3rd kind (4 bags) at midnight tonight.

At some point, the army will have to evaluate Billy.  And then he'll have to establish a plan for long-term treatment somewhere.  We're just not sure where.  More to come on that...but he'll be here for at least 4 more days.

I'm beat...gotta head to bed.  But I wanted to share one final note.  In a world that so easily feels chaotic and out of control, I often feel powerless.  A friend shared something that spoke to me today, so I wanted to pass it along to you.

What Cancer Cannot Do...
corrode faith
shatter hope
destroy peace
silence courage
invade the soul
steal eternal life
conquer the spirit
cripple love
kill friendship
suppress memories

Author: Unknown


Thank you for praying and supporting and loving and just being in it with us!

Monday, September 27, 2010

What a Day!

Phew!  What a day...  It's amazing how so much can happen in one day, and yet it feels like an eternity.  The time crawls and flies at the same time.  We have good news to share!  Billy was moved from the ICU to the 5th floor tower today (the floor where cancer patients are treated).  It's a good move.  It's calmer up here, and he's sleeping really well right now (it's 12:00am as I write this).  His sleep seems deeper and more rested than it had been in the ICU--where there was always light and more noise.

It's nice to be on the 5th floor.  The cell signal is stronger, and Billy can receive texts and messages in the room.  We're also able to be in the room and get messages and texts.  It feels a lot less like a cave, less detached from the outside world.  There's sunlight too.  Billy hasn't said anything about liking his large window--but it's nice for the rest of us.  :-)

If you'd like to send mail, we have an address for you!

Will McCotter
8900 N. Kendall Dr.
5 Tower Room 5220
Miami, FL 33176

There were lots of visitors today!
  • Trevor (a buddy from the Old Guard in D.C. who now lives in FL)
  • Kelsey (a friend from D.C.)
  • Nate (all the way from Germany, and he really surprised Billy!  I got to meet Nate and Melissa in April 2009, when we were in AL for Billy's promotion to Warrant Officer; it's really nice to see him again!)
  • Uncle Paul
  • Melissa
  • Judy and Doug (Melissa's Parents)
  • Pastor Matthias (Tyler and Melissa's pastor)
  • Jill (Billy's and my mom)
  • me :-)

And thanks to some amazing "support staff" who have helped us with anything we've needed.  We haven't had to worry about leaving the hospital at all.  They've brought us books, chapstick, food...anything we've needed...
  • Adrienne (from AL)
  • Laurie (Melissa's sister)


So how is Billy?
He's hanging in there...trying to "get through," as he says.  The move from the ICU was difficult and tiring.  Also, it's been an ongoing effort to get the pain medication dose right.  He's taking a painkiller that's 8x stronger than morphine.  His pain is never really fully gone, but it disappears enough for him to sleep.  About 45 - 60 minutes later, he wakes up and asks for another dose.  He's alert for a bit as the pain increases.  Then a nurse comes to give him another dose.  He drinks some water, and he's out again.

In the past few days, he had been throwing up a lot.  Every time anything went down, it would come up within 10 minutes.  This morning when we came in, Billy had a drainage tube in his nose.  It goes down his throat, and pumps out liquid from his stomach.  Whenever Billy drinks water, the liquid in the tube changes from dark green to clear.  In other words, whatever Billy ingests comes right back out.  He's still not getting any nutrition, because the cancer is so strong, and his stomach is under huge duress.

New Treatment
So with that in mind, Billy has decided to start chemo.  He knows it's a poison in his body, but he doesn't see any other choice.  We're hoping that the chemo will halt the cancer enough so that Billy can start holding onto nutrition.  Pray that it works!  We're also giving Billy some supplements that we're hoping will help him to heal.  Pray that his body absorbs things, even if the nutrition is in his stomach for only a few seconds or minutes.

I have so many thoughts and questions these days.  There's so much to read and research, to try to figure out what's best.  It's hard to process it all.  During some moments, it's really fun to have everyone together.  The picture below was taken soon after Nate and Kelsey arrived.


From the left:  Melissa, Kelsey, Nate, Jill (Mom), Doug Lyew-Ayee, and Billy


(Note:  People always ask about the "leg things"...they're compression cuffs that help keep his blood circulating and prevent blood clots in his legs.)

At that point, the room was full of energy, and Billy seemed pretty excited to see everyone.  Even though the pain medication makes him tired, he fought to stay awake to be with people.  After he slept, we would all tallk and hang out.  It's good time to be together.

But then moments come that are harder.  I remember that we're in a hospital, and Billy is lying there in a bed with tubes and wires all over him.  I remember that there's a horrible disease inside trying to take his life.  Then, it gets hard.  When my mom told me his diagnosis last Thursday, the world seemed to come to a halt.  The only word I could say was, "No!"  And I couldn't seem to believe that it was possible for him to have such a thing.  Being here, I have something to do.  I try to help the nurses as much as I can.  And when Billy needs water, chap stick, his cell phone, anything...I try to be on top of it.  The past three days have been filled with looking out for him.  I'm so focused on that, I forget that life last Wednesday wasn't like this.

In thinking about the future, life feels hard.  Billy's situation isn't good.  Yes, he has made some progress.  I think we've found a pain manament regimen that's working.  The anti-nausea medication finally seems to be helping.  And he seems to be resting well tonight.  But he still can't keep anything down, and that's the serious part.  He NEEDS nutrition if his body is going to heal.  He NEEDS nutrition in order to be moved anywhere (and we still don't know where) to receive further treatment.  But in order to get nutrition, his stomach has to stop revolting.  We're starting chemo tomorrow, hoping that will work.  Please pray for it to work!  And not just to work, but to work quickly and effectively.  Pray for it to knock out as much cancer as possible, so that his body can hold onto healthy food!

Thanks again for all the prayers and support.

Oh, and one more thing I almost forgot!  We have a way for you to help, if you want. Krystian is trying to get together a care package for Billy, and he's putting together a digital picture frame. Could you dig up whatever pictures you'd like to include and send them to msmarcy1223@aol.com? He needs them by 9pm CST on Wednesday, September 29. Thanks!!!

Saturday, September 25, 2010

Good News! (Plus the Requested Info on the PayPal Account)

Billy seems to be doing well today!  He's still in pain, and getting pain medication regularly.  But his spirits seem good, and he's kinda spunky.  There's some kind of verbal sparring going on between him and our youngest brother, Danny.  I'm the messenger, but I don't understand the messages.  It's some kind of brother-to-brother thing, and it's fun to watch.

Billy had lots of visitors today, including...
  • Matt (a buddy from the honor guard and now from Miami)
  • Cristie (a friend from D.C.)

And the steady support team has included...
  • Melissa (good friend of Billy's, and wife of Tyler)
  • Melissa's Parents:  Judy and Doug
  • Melissa's Brother:  Jonathan
  • Melissa's Sister:  Laurie
  • me :-)
  • Jill (our mom)
  • Uncle Paul (my mom's brother, and an army vetran himself!  And he wanted me make sure that I spelled his name right.  Everyone's got jokes!)

Melissa's family has been incredible!  Judy prays.  A lot!  Every time you look, she's praying for Billy.  Doug and Judy both know a ton about health and healing, and we've been exploring treatment options with them.  Melissa is a great side-kick.  She's always watching out for what Billy needs.  She make sure she knows everything the nurses and doctors are doing, and she reports back to us when we're not able to be with him.  Lori has brought us food and just made sure our needs have been taken care of.  And Jonathan has been in to visit, and left earlier this evening to help turn Melissa's house into an "army barracks."  We're all staying together over there.  Full house.

We've laughed together today.  It's hard to hug Billy because of all the tubes and wires--but we've spent good time together.  The painkillers knock Billy out.  He fights sleep because he wants to spend time with people.  And he knows we love him.  He's got a good fight in him.  I think we're doing well, all things considered.

For those who are curious, here's the current list of upcoming visitors.  

Tomorrow's (Sunday's) Visitors Include...
  • Adrienne (Fort Rucker, AL)
  • Kelsey (Washington D.C.)
  • Nate (a surprise visit all the way from an army assignment in Germany!  Don't tell!)
On Monday
  • Dustin (an army buddy from the Old Guard/Honor Guard, flying in from Indiana)
And Sometime Soon...
  • Tyler (on emergency leave from deployment to Iraq...praise God for compassion from the army!)
And on the Paypal Account...
I've also been asked about the Paypal account that Nate and Melissa set up on Billy's behalf.  Here's the post from Melissa (Nate's wife):
We need help.  Our friend William McCotter has been diagnosed with stage 4 stomach cancer.  It is very advanced and he is in a lot of pain.  Will is the most selfless giving person any of us has ever met.  It is our turn to finally give something back.  Donations are needed for treatment.  We are accepting through Pay Pal at Wills.Hope.2010@gmail.com.  Please pray, pass on, and donate anything you can.  Thank you all so much.
If you're interested in giving...
  1. Go to www.paypal.com.  
  2. Create an account.
  3. Click the "Send Money" tab.  
  4. Send to Wills.Hope.2010@gmail.com
  5. I think you can figure out the rest.  :-)
For the curious...there's $125 there so far.  I'll keep you updated as the amount grows.

Thanks for everything!  Please keep praying for...
  • a pain management regimen that works!  (regulation of pain)
  • a restful night for all involved (especially Billy)
  • Billy's body to fight the cancer
  • Billy's body to calm down and start accepting nourishment
Thank you for all the texts and messages!  Even though Billy can't get messages in the ICU, I bring his phone "out" to connect to the towers.  It updates his messages, and when he's awake and alert enough, he reads them.  So keep them coming!

And last but not least, for those who aren't on Facebook, here's a recent family photo.



It's from Bobby's wedding last summer.  From the left... Chris, Bobby, Michelle, Billy, and Danny. And in order of age... Michelle, Chris, Billy, Bobby, Danny. Please keep all of us in your prayers!  We're holding together, but dealing with the shock in different ways.  We're all spread out, and that can be hard, especially during times like this.  Here's where we are these days...

  • Michelle (from State College, PA, but currently in Miami)
  • Chris (in Durango, CO)
  • Billy (in between army assignments...on the move from AL to HI)
  • Bobby (with his wife, Blair, in Loveland, CO)
  • Danny (attending Bible college near L.A.) 


Thanks for praying and loving us during this time.

Questions

There are lots of them.  Why does a 25-year-old guy have cancer?  Why Billy, of all people?  Why didn't they find it sooner?  Will he be moved anywhere else soon?

As I've talked with many of you over the past few days (I know, it's hard to believe we've only known about this for 2 days), we're discovering more questions than answers.  For now, I wanted to share some of the answers that we do have.

How's Billy doing?
The answer to that--for now--is he's hanging in there.  He does have some fight in him.  Yesterday, he heard word that they'd be removing his breathing tube.  It seemed like it was taking forever!  They told him they'd need to shut the machine off, and then they could take the tube out.  Once they finally shut the machine off, he yanked out the tubes himself!

He is very sick, however.  The pain medicine makes him nauseous.  He gets pain meds every hour.  Almost immediately, he throws up.  And then he falls asleep.  He wakes up every once in a while.  Sometimes, he talks.  But he's thirsty and sleepy.  And he watches the clock for when the pain meds can come again.  Sometimes, it feels routine.  More often, it's hard to watch.  My brother should not be laying there like that.

So, was Billy sick for a while?  Where did the cancer come from?
Who knows where it came from.  Lots of times, it's hard to detect right away because the initial symptoms are indigestion and a loss of appetite.  When a 25-year-old guy has indigestion, you don't think much of it.

Billy said that his stomach cramps started when he finished flight school, around mid-August.  We saw him over the weekend of August 21 in MA for our cousin Kelly's wedding, and he seemed fine.  My parents and I saw him again in AL at the beginning of September for his graduation from flight school.  He was still having occasional stomach cramps, and had lost his appetite somewhat.  He said he had lost about 10 pounds since flight school ended.  We talked about it a few times as we'd eat together, and we thought he might have an ulcer.  He thought so too, and he stopped drinking soda to try to cut back on the acid he was eating.  He wanted to wait to get it checked out until he got to Hawaii.  At the time, the cramps didn't seem all that bad.

Billy was with Melissa and Tyler this past weekend in the Florida Keys.  Melissa said she noticed that he ate less and less over time.  On Sunday, he ate a little bit of spaghetti, and that was it.  (He hasn't eaten since then.)

On Monday, he went to the ER.  On Thursday, he was diagnosed with stage 4 stomach cancer.  It's so advanced because the symptoms didn't get strong until now.

We don't know where it came from or why.  Stomach cancer can be genetic, but there's no history of it in our family.  We don't really have any more answers than that.

Where is Billy?
He's in the ICU in Baptist Hospital in Miami.  He will be moved out of the ICU to a room "upstairs" as soon as a bed is available.  The move from the ICU is a step in the positive direction!

How long will Billy be in Miami?  Will they move him soon?
Billy is currently a Warrant Officer in the army.  So we're waiting to hear back from the army regarding treatment recommendations.  We can go with what the army suggests, or we can go somewhere else.

In the meantime, we're researching the options.  We're not sure where he'll be treated, what it will cost, and how much will be covered.  There are lots of questions.  I'll get to the treatment questions in a minute...

Regarding moving Billy, that depends on treatment.  But it also depends on his condition.  Right now, they're trying to regulate the pain.  The pain is strong and fairly constant.  Billy is getting medication every hour.  It's quite intense, and makes him throw up.  So he hasn't been able to eat anything for almost a week.  His condition is "not stable" due to those facts.  The doctors want to regulate his pain before he gets moved anywhere.

But he needs to get somewhere for treatment (maybe here, maybe somewhere else).  So he may be here briefly, or he may be here for a while.  Billy will be wherever the treatment option is best.

What are the treatment options?
Billy's version of cancer is very advanced and very aggressive.  The doctors here say they can't operate to remove it.  We can try chemo to try to knock it out--but every patient is different.  Some patients respond really well and really fast to chemo.  Others don't.  We won't know until (and that's if) we try.

(Note:  With cancer, chemo can help, but it doesn't always.  As the nurse said this morning, there are "atom bomb versions" and there are "sniper versions".  You don't want to hit him with an atom bomb if it's the wrong kind.  So we want to figure out exactly what he needs and go for that.)

There are stories out there of people being miraculously healed of cancer, if they change the kinds of things they're putting into the body.  But Billy is in so much pain at this point that he needs pain meds.  And the pain meds are making him throw up.  So it's hard to put anything good into the body.

It's hard to say what's best.  Ultimately Billy will get to decide what treatment he gets.  We do have some leads, but it is the weekend.  Please pray that we'd get connected to people in places of power who will help us get answers quickly!

I will address more questions later.  Feel free to keep calling and texting.  I am answering Billy's phone, so if you call, don't be surprised to hear a woman's voice.  :-)  I will relay messages to him.  There are some visitors coming...  Christy is here now.  So is Melissa, as well as her brother and dad.  Matt is on his way.  Trevor should be here later.  More are coming tomorrow...  Thank you for coming to see him!

The Current Situation

It is hard to put all this into words, and when I try to make sure the words sound okay, I get stuck.  So I'm just going to write...

Billy is my brother.  He's 25.  A newly-awarded blackhawk pilot in the army.  He just finished flight school in Alabama, and is on leave until mid-October, when he is supposed to report to Hawaii.  He's been visiting friends, and had plans to stop and see several of you.  As we all know, sometimes life doesn't go according to plans.

There are many details in this story.  I will give the basics now, and share more in future posts.

Billy (or Cooter, as many of you know him), just spent the past weekend in the Florida Keys with friends.  He was losing his appetite, and his stomach was hurting more and more.

Tyler and Melissa went with him to the ER on Monday.  They found lots of fluid in his abdomen, some sort of mass, and a bunch of "nodules."  He had a CAT scan on Monday.  They drained 2 liters of fluid from his abdomen on Tuesday, and did another CAT scan.  They saw a bunch of masses in the CAT scan, but weren't sure what all that meant because of the fluid.  On Wednesday, they did an endoscopy.  During all this time, he was on pain meds, and the frequency started increasing.  But the pain meds are harsh, and they made him throw up.  He's been throwing up since Monday night.

Billy was diagnosed with poorly differentiated gastric adenocarcinoma on Thursday morning.  In basic terms, that means stomach cancer.  It's in stage IV (highly advanced).  The doctors say it's incurable and inoperable.  It's too big and too far spread to get it out.

We have lots of friends and family with connections trying to help out with information and options.  And we're trying to filter through everything to make the best choices for Billy.  At this point, he's in a lot of pain.  He's hot a lot of the time, and he's very thirsty.  He's now on pain meds every hour (instead of every 4), and he's counting down the minutes until they can give him more meds.  We're trying to get some nutrition into his system, as he hasn't eaten since Sunday.  His body needs nutrients if it's going to heal.

If you pray, here are some things we need:

  • We're going to try to sell his car (which he had planned to do in preparation for going to HI).  Pray that we'd get an excellent price for it.
  • We're working on alternative options for treatment.  Pray for us to know what's true, and what's the best.  Pray for healing.
  • We want to get a 2nd opinion.  Pray that we'd find gracious people who are willing to go above and beyond expectations to advocate and fight for Billy.
  • Billy is in a lot of pain.  Pray for his body to settle down, the medical staff to find the best pain medication possible, and his body to hold onto any nutrition that we're able to get in him.  Continue to pray for healing.


We're heading out now.  I will update more later when we're able to see Billy and I have more information.

Thank you for all of your prayers and support.