Going Home Again

Whew!

A lot has been going on since I last updated the blog back in November.  Back on the 25th of November it was the Saturday after Thanksgiving and we were just about to close out week one of our rebound hospital stay.  We were cautiously optimistic that we would be able to come home the following Monday or Tuesday.

Well, that wasn’t exactly the case.  The first treatment path for Will’s GVHD (Graft Vs Host Disease) didn’t really pan out so much like the rest of this process it was on to the next one and crossing our fingers/saying our prayers that this one would work. 

On top of all of it, Kim and I started stressing as Zach’s birthday was creeping up rapidly on December 2nd.  We were hoping all week that we would be able to be released before Saturday so that we could have as much of a normal 16th Birthday as possible for Zach.  Their world has been upended every bit as much as Will’s over the last year, just in different ways, and we greatly wanted to give Zach a bit of normalcy. 

Will in his natural hospital state. Oh and that is headphones, not a headband!

Will’s GVHD didn’t seem to care much about that however and one week started turning into two as his, um, output levels we’ll say, were way too high to even consider releasing him.  GVHD has been interesting because your child is basically fighting for their life while their immune system fights against the donor cells.  It’s very serious but not exactly uncommon and it’s something the doctors are monitoring for and preparing to fight every step of the way.  They are constantly watching for any signs and jumping on treatment right away to fight it off and preserve the best outcome.  Infections and Organ Failure seem to be the heavy hitter part of the risks and why this is so serious.  It can be life threatening so you don’t mess around. 

The treatment is yet more drugs (this time steroids) to suppress the immune system even more to try to give his system time to heal.  These new drugs of course have serious side effects to the liver and kidneys that require their own side medications to counteract.  It all turns into a delicate ballet of pills in various shapes, colors and sizes that we dance through each day, closely monitoring Will for improvement and gradually tweaking these medications under the guidance of our doctors so that he has the right balance to heal and maintain his health all while minimizing his need for them as much as possible before they cause damage on their own. 

It’s enough to make you scream and that in fact has become Will’s rallying cry recently during this phase and who can blame him?  The odd part is that despite all this raging on inside of him, he is improving, he is talking more, he almost seems normal at times other than the overwhelming swelling in his face from the steroids.

The writing was on the wall by Wednesday (November 29th) that we were going to still be in the hospital for Zach’s birthday.  Thankfully Kim’s sister literally flew to the rescue and flew down from Utah to stay with us for the weekend.  The plan was that she would come stay with Will in the hospital for a few hours while we snuck out to celebrate Zach’s birthday in the safest way possible.   So, we had a very condensed birthday day for Zach and Will was a great patient for Aunt Janalee for the few hours we were away.   We managed to make the best of Zach’s birthday and give them what I hope was a memorable one. 

We refocused back on Will’s health which had somewhat plateaued at that point, it wasn’t getting worse, but it wasn’t getting better.  We had to be patient (with the patient if you will 😊) as he made microscopic improvements over the next few days.  We gave him pills, and we waited, we weaned him from IV meds, gave him more pills and we waited.  More pills and more waiting.  Rinse and repeat. 

As peaceful as you can sleep in the hospital.

That was the M.O. for the next two weeks and finally, after an almost four week stay, Will managed to improve enough that we could continue his treatment on an outpatient basis.  We were finally able to head home and be together as a family again, the second long stay in our rear-view mirror.  While I hope we don’t have any more stays, I hope they keep room 7112 warm for us if we do.  I’m afraid I would walk into someone else’s room now if we had to stay in another one!

This visit to the hospital felt different.  It somehow felt so much longer than our first six week stay, I think because it felt like there was no progress during it.  I have to keep reminding myself, it wasn’t about his recovery as much as it was stopping a concerning complication from getting worse.  We were just sitting there waiting for Will’s body to heal and find the right combination of medications to help him while the first six weeks had a clear plan with milestones to progress through.  This stay was frustrating and exhausting for all of us, but we made it through, said goodbye with much less fanfare this time (but almost as much junk to haul home somehow) and swore that we wouldn’t be back for Christmas.   

A quick selfie of Will and I after he came home. Ignore the mustache, I sometimes use my facial hair to cheer myself up!

We came home relieved but spent.  While nobody wants to be in the hospital, and the sleeping conditions have left our bodies, hearts and minds drained of any semblance of normal living, at least in the hospital you don’t have to worry about being directly responsible for 100% of his care.  When we come home there are a million benefits, but the burden then falls on us to take care of him.  It’s a lot, but with the support of family, friends, coworkers, neighbors, ward members, etc… (you all know who you are and we can’t thank you enough) we will make it through.

Buuuut…It’s not all negative!  Will is getting somewhat better although this is what I like to call a chess not checkers scenario and it will take time.  We are playing 10 moves down the road.  Without overloading you all with the details I’ll just say that Will is progressing in a good fashion and despite the complications of GVHD I think we can say his recovery is still on track.   

I have failed to mention the eating part.  I must preface the great news with the food part so you can appreciate it.  If you have been reading the blog previously you know that Will completely lost his appetite during his chemo and it never really came back.  He was still receiving IV nutrition every day so the calories, etc… weren’t a concern but it wasn’t a solution that could go on forever.  He basically didn’t eat for over a month and after being admitted to the hospital and discovering his GVHD we finally had a great reason why.  So, imagine our surprise when the steroid treatment kicked in and overnight Will’s appetite returned with a vengeance!  It would have been perfect, if not for the fact that it happened just as he was placed on a clear liquid diet to let his stomach heal.  Digesting could mean flare ups of his GVHD.  I find it ironic that we spent the first half of recovery begging him to eat anything, no matter how unhealthy, to watching him eat a bowl of chicken broth because he is desperate to each anything and everything but can’t.  Be careful what you wish for and all of that. 

Mmmm chicken broth!

Thankfully as Will continued to improve with his gradual eating, last Thursday’s (December 14th) clinic visit brought with it the news that Will had made enough progress to not only advance his diet to GVHD Diet 2 (Electric Boogaloo!) but also remove his IV Nutrition as he was gaining weight!  He’s still on IV fluids but the following picture shows where we started, where we were last week and where we are today with him only needing to be hooked up to his IV for 10 hours a day now instead of 18.  We just continue hoping that his body will progress and not regress because we know he’s walking a tightrope.    

Visual signs of improving health we hope!

Last Tuesday during his clinic visit Will’s numbers were still improving, and he received the news that all diet restrictions were lifted!  The celebratory scream that came out of him was probably heard across the entire hospital.  The main things he couldn’t have on GVHD Diet 2 were dairy, sugar and processed meats.  He immediately made plans for Peperoni Pizza and Chocolate!  While we are being very gradual and letting him slowly add foods back in so we don’t overload his system, so far his body has been very responsive to the wider diet and he’s eating more than ever. 

That pretty much brings us to today.  Over the last couple of weeks we have settled into a routine that juggles his pill taking (still dozens of pills per days spread from 7:00 AM to 10:00 PM) with clinic visits, dressing changes, IV Fluids, etc…   You’ve seen me mention it several times but that is the big focus we have now and its all-consuming.  We are trying to keep our heads above water, but we are human.  Without all of you supporting Will (and us) we wouldn’t be able to meet the challenges. 

To top it all off, quite literally, his hair is finally starting to come back in!  He’s excited about that as even though he doesn’t say a whole lot about it, you can tell that it’s bothering him every time you catch him look in the mirror.  It’s a stark outward reminder of the inner battle he is going through.  He can’t wait for the day when this is all over and he doesn’t have to deal with any of this anymore and he’s not alone. 

It was a little late, but we finally managed to find time to get up our tree in all the chaos! Will has been looking forward to Christmas so this was an important step. And yes that’s an Owl on the top!

This post felt very disjointed but hopefully it gives you all an update on where we are.  Before I end I’ll just take a second to send out a Merry Christmas, Happy Holidays and wish a safe and joyous season for all of you.  May you all be able to take a little break from the fast place life we find ourselves in to enjoy yourselves and your favorite people.  Hug your loved ones a little tighter and a few moments longer.  Don’t miss the opportunity to let those around you know how important they are to you and to appreciate the joy of life.  It really is too short and if we just stop to look around, we will be in awe of the all the miracles around us.    

We love you all!  Merry Christmas!

2 thoughts on “Going Home Again

  1. ❤️🙏. Thank you Shawn for sharing your journey with us. Hugs! I wish so much I could give to you all in person!

  2. It was my honor and pleasure to come down and stay with Will, even if it was just for a few hours, and I’d do it again in a heartbeat. We love all of you and are so glad you were able to be home for Christmas!

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