Um What Do We Have To Be Thankful For? (Day +53 through, umm, whatever day 11/25 makes it!)

So last week before we had any inkling that we would wind up back in the hospital I had been thinking through putting together a post talking about things our family has to be thankful for this year.  That was significantly derailed when we found out that we would be admitted again and then derailed even further when we found out we would be in the hospital for Thanksgiving (and likely until sometime next week).

But first things first, on Wednesday afternoon we received the news that Will has indeed tested positive for Graft Vs Host Disease (apparently his biopsies were VERY positive if there are degrees to that sort of thing).  I stress again that I’m not a doctor or any kind of medical professional but to break it down the way I understand it, this basically means that his transplant cells are fighting his body.  In Will’s case, its attacking his stomach and digestive system which is likely the culprit for all of the vomiting, lack of appetite, etc… that has been plaguing him and led us back in here. 

GVHD can occur any time after transplant but is most common after the bone marrow starts to make healthy cells in the first 100 days.  It can result in organ damage (liver, lungs, digestive tract, etc…) and a risk for severe infection.  Whatever you do, don’t google it and look up life expectancy of GVHD patients.  Every case is unique and Will’s is even more so.  Those statistics mean little in his case. 

So what does this mean long term?  Well GVHD can be mild or severe and it can be chronic (three to five years) or short term.  For now it means a steroid regimen to suppress the immune system so the body and the donor cells can get along and hopefully get him through this relatively unscathed.

I will admit, the news was both a relief and devastating.  Much like most of this journey its had its ups and downs.  The relief was that we had a reason for everything that was going on, a physical reason, and we had a treatment plan that would require us to stay in the hospital a bit longer but it was a plan and we could move forward.

Devastating because, well, of course it is. 

Tuesday night when I drove home from the hospital so one of us could be home for Zach (who unfortunately has a severe ear infection this week and rightfully requires a bit more mom and dad juggling then before to help them out) I pulled into the garage and a wave of emotion just came over me.  This isn’t exactly a rare occurrence for me but as the tears came on I started to feel the exhaustion from the last few days weigh me down and I had the thought, “What do we have to be thankful for?”

Hey I’m human.  I get down in the mud and wallow from time to time in self pity just like anyone else (or maybe a little more than average but hey sometimes the mud is fun!).  As I walked in the door emotionally spent from the last couple of days that’s definitely where I was at.  My self pity continued on into Wednesday and Thursday morning when I was frustrated that our family wouldn’t be together for Thanksgiving.  Lack of sleep was catching up to me and I was spent.    

Kim, Will and I sat in his room killing time and Kim decided to turn on the Macy’s Thanksgiving Day parade.  I won’t say that I enjoy the parade but its definitely a tradition dating back to childhood to have it on in the background and Thanksgiving just isn’t the same without it. Nowadays I find more joy in making fun of it but it helped to lighten my mood. 

(Dramatic side tangent, did you see the parade this year?  I had to keep asking Kim what year it was.  They had En Vogue, Brandy and even Bel Biv Devoe performing along with the Teenage Mutant Ninja Turtles.  They even dusted off Cher and Chicago performed “You’re the Inspiration”.  That song came out in 1984 people!  Folks, Peter Cetera is 79 years young and he was out there lip synching with the best of them!  His wikipedia says he is retired from performing so was this a big comeback?  With his sunglasses on I guess it could have been anyone standing up there.  He’s not alone though, Cher is 77 and Dolly Parton, 77, performed a halftime show in a Dallas Cowboys Cheerleader outfit.  That’s like my mom performing out there.  What is going on?!?!?  I realized three quarters of the way through that this entertainment was designed to appeal to the target demographic of the parade, middle age and older.  Holy crap that’s me!  I’m old!)

Anywho, where was I?  Oh right, a little while later pet therapy came in and the mood improved further.  We weren’t expecting them to come in on Thanksgiving but they did.  Will lit up like he always does.  No matter how he feels when they come in and say are you up for pet therapy, he sits right up and invites them up onto his bed . Mochi the labradoodle came in on Thursday and let me tell you, its hard to feel sad for yourself when you are petting a dog. 

The day progressed from there with a Thanksgiving meal from the cafeteria (with accompanying $11 off gift certificate which I am grateful for but how the heck did they come up with $11 as the amount?) and despite the fact that we weren’t together as a family, and we spent the day in the hospital, it still managed to feel a little like Thanksgiving.  This year it was going to be hard to be thankful but I was going to force myself to be at least thankful adjacent!

So now that I’ve had a little more time to get out of my head and reflect I would like to acknowledge just a few of the great many things I am thankful for and maybe this way I can come back and read this the next time I’m feeling sorry for myself 🙂

  • I’m thankful for the miracle of modern medicine.  Despite the complications with GVHD we are going through, Will’s platelets continue to improve.  A faulty immune system that was killing them off was rewritten with healthy donor cells that seem to have healed this malfunctioning part of his RASGRP1 body.
  • I’m thankful for the team of doctors and nurses here at Phoenix Children’s who are giving Will world class care and support.
  • I’m thankful for the generosity of strangers all over the world. 
  • I’m thankful for whoever it was that made and donated Will’s blanket a couple of months ago that has been his shield and comforter through this process. 
  • I’m thankful for someone on the other side of the world that decided to generously donate their cells and give Will a new lease on life.  I feel like they are part of my family now 🙂
  • I’m thankful for anyone who does service for others anonymously.
  • I’m thankful for Zach and what they teach me every day about being a more loving, accepting person to everyone regardless of their situation.
  • I’m thankful for the makers of Emesis Bags.  If you know you know! We’ve been through probably seventy five of those little blue bags since we came home a few weeks ago.
  • I’m thankful that Will’s improving and hasn’t thrown up in forty eight hours. 
  • I’m thankful for my in laws, Janice and Byron Knight and Kim’s siblings for raising her to be my favorite person in the world.  Whatever you did you nailed it!
  • I’m thankful for a job and coworkers who have shown so much patience and support for me and our family this year.  I couldn’t do it without them.
  • I’m thankful for pet therapy and the joy they bring to Will and kids all over.  It’s a simple thing but the time and effort these folks donate makes a huge difference. 
  • I’m thankful for my family and the examples they have given to me throughout our lives.
  • I’m thankful for friends who would go out of their way to bring us not one, but two thanksgiving dinners (one at our house and one at the hospital) on Thursday.  Such a selfless act doesn’t go unrecognized.
  • I’m thankful for everyone who has been involved with fundraising for COTA on our behalf.  I didn’t expect any of this when we signed up for COTA but the effort and outpouring from everyone has been amazing and it doesn’t happen without their efforts #Willpower.
  • I’m thankful for one of my coworkers who early on in this process came up with #Willpower.  Such a simple thing but its been fun to latch on to. 
  • I’m thankful for neighbors, even though we keep to ourselves and aren’t exactly what I would call good neighbors, its so nice to know you have people who genuinely care about you and your well being with nothing in return and we have some great ones!
  • I’m thankful for insurance, not just because I don’t know what my job would be without the existence of the insurance industry but for it easing the burden for Will’s enormous hospital bills. 
  • I’m thankful for sarcasm.  I’d say its my coping mechanism but unless I need to cope every second of every day I’m probably not doing it justice…hey wait a second!
  • I’m thankful I live in beautiful Phoenix, AZ because it was 80 degrees here this week while it snowed at our former home in Utah and I don’t need that kind of nonsense in my life!
  • I’m thankful for inside jokes and the way they turn into a communication shorthand with your favorite people.
  • I’m thankful for technology and all that it enables for us.  I can’t imagine a hospital stay without it allowing us to communicate and entertain ourselves so easily. 
  • I’m thankful for delivery drivers.  No seriously, I almost never have to leave the house or hospital if I don’t want to.  As an introvert its my dream come true.
  • I’m thankful for anyone who reads this blog, who is giving of their time, resources and talents to help our family get through this. 
  • I’m thankful for anyone who tries to broaden their mind, to love and accept everyone around them and try to see them for the beautiful people they are and not just their differences. 
  • I’m thankful for this thing we call life. (We all just trying to get through this thing called life!)
  • I’m thankful for a belief system that allows me to confidently know (some days more than others :)) that I’ll get to see Alex again someday. 
  • I’m thankful for it all, even if I don’t always say it or realize it!

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