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.

5 comments:

  1. Thank You for the update....I am so excited about the DC option. I pray that works out for him to move to where he feels is right. I enjoying reading and trying to understand as everything progresses. I pray often and I am getting the word out to everyone I know to add to the prayer chain. Take Care and God Bless <3

    Hugs,
    Kristy Stanley

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  2. Thank you so much for the update, Michelle. This was such an uplifting post for me, and I hope that it has been an uplifting day for all of you. I too am excited about the D.C. option. I know that there are so many people in that area that love Will. We will definitely be coming to visit if D.C. is a viable option.
    Still praying. Still believing in miracles.

    xo*tricia

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  3. Hello Michelle - this is Brenda Bard - Adrienne's mother. I want you to know that the chemo explanation the doctor gave you is 100% accurate. Adriennes father, and of course my husband is fighting brain cancer and has been taking chemo treatments for 6 months. And the full effect happens about 1-1/2 weeks after the treatments. Since it is his brain it is very easy to tell the effects because the chemo causes swelling which leads to some confusion. So Will may feel the effects after the treatments have actually stopped. We are praying for him and your family as well. We have been in your shoes. Family and friends are always there for you too lean on. Please tell Will we are both praying for him and keep the faith and keep fighting :-)

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  4. Chelle, contact me via my blog. easy-writer101@gmail.com. I'm an Army surgeon's wife. I'm going out right now. Will be back at 6:30 PM PST.

    ReplyDelete
  5. Sorry Chelle. Wrong address. Just hit my name and it'll take you to the correct one.

    ReplyDelete

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