To give you all a little insight into how Will is wired, last July before we formally started the transplant process Will was having a particularly hard day where the weight of everything before him was more than he could bear.  As parents we have struggled at times with trying to console our kids when they are sad, especially when that sadness comes from such major events, but this isn’t anything exclusive to us.  All parents struggle with this at times.  Will however is wired just a little bit differently and doesn’t always need mom or dad to help.

Case in point, on this day when he was especially sad he went outside, found a single smooth rock by the pool, named him “Happy Rock” and said as long as happy rock was with him he would be happy and not sad.  And that was that. 

He’s put that theory to the test over the last eleven months as Happy Rock has made multiple hospital stays, ER trips, infusion appointments, etc… right by Will’s side.  A few months back Will decided that Happy Rock was special enough that he didn’t want to risk losing him, so he leaves him at home now but that rock has just about as many hospital miles as Will.  He does however go with Will where ever he is at home and even sleeps in bed with it at night.  (Side note, Happy Rock was recently joined by a sibling that we ended up naming Lucky Rock but he doesn’t seem to be as good so far at bringing luck as Happy rock is with happiness!)

On the surface its insanely cute.  When you look deeper you realize that this is an example how Will is compartmentalizing his feelings and processing everything.  When people ask me how he is doing my answer is always that he does better than I would if I was in his shoes.  He’s remarkably strong, even though I hate using that word in regards to these situations.  Any kid who goes through an ounce of any of this is strong regardless of how they process it.  Sadly for Will it comes from an internal defense mechanism, steeped in an unhealthy dose of childhood grief/challenges, that forces him to deal with trauma and sadness this way.

So update time, where do things stand?

Well first off, for those asking, my Dad is home and doing well.  I don’t think he has recovered to his full energy levels but he’s pretty close.  Thanks to everyone for your thoughts, prayers and well wishes.

In regards to Will, where do I start or what do I say?  The challenges/complications seem to keep pilling up and with that comes the quantity of our trips to the hospital.  While he hasn’t been admitted overnight recently we have had more than our fair share of trips in.  In fact the receptionist this morning greeted us with a “You guys are here every day!” which we don’t really need the reminder of 🙂 (Not every day, it was only four of five days this week but spending Memorial day in the infusion clinic counts for time and a half or something.)

The latest challenges have been a doozy as first Will had a resurgence of nausea/vomiting that culminated into trips into the ER/Clinic for treatment and all but eliminated his appetite.  We were quite worried that this meant a return of his GVHD in his stomach but thankfully, a minor tweak to his meds seemed to improve the situation and he is back to dreaming of food and no longer throwing up. 

That was followed by a two pronged whammy of high blood pressure and a diagnosed bone infarction in his left ankle and a possible fracture in his right.  That’s where the compression socks come in.  His pain in his feet has been so bad recently that he couldn’t even stand without crying.  After finally getting him in for an MRI and the Bone Infarction diagnosis our doctor suggested starting with compression socks.  So now he is rocking some magnificent knee high socks just like Grandpa but the good news is that it’s helping and while he is still using a wheelchair to get around, it has restored some of his mobility and lessened some of his pain.

Throughout it all is a constant flow of medications with “drop this med, add this one, change this dose to this, raise this one, lower that one” and then call the pharmacy 15 times to figure out why they aren’t filling a particular prescription or finding out that they are all out of a pill he needs.  It’s enough to make you crazy and I feel like it’s a full time job to try to keep up with it.

(Kim is amazing by the way, I’m sure I don’t need to add that but she is awesome at keeping everything going on this front.  I certainly help where I can but she is the one constantly dealing with the pharmacy/insurance and she doesn’t get enough credit for her role in all of this.  Love you honey!) 

I’m not faulting anyone for these challenges by the way, everyone is just trying to do their jobs and its not their fault.  It’s all just insanely magnified when you are juggling so many of them. 

So that is pretty much where we are at.  One step forward and two steps back as this process has been anything but smooth.  However, we are lucky, we are blessed, we are whatever you want to say we are in a positive way and I’m not being sarcastic.  Things could be so much worse. We have to constantly remind ourselves no matter how many trips into the hospital we make, no matter how many pills are taken, no matter how tired we are, no matter how much we feel like we can’t take any more, Will is still here with us and we still have a path forward through all of this.  We constantly have to remind ourselves of this. 

On that note, some of our family members received some particularly devastating news this week.  You don’t need any advice if you don’t want any but I just want to publicly offer mine up as a father who has had some first hand experience with this; all the feelings you are going through are valid and normal.  You can be mad, sad, numb, crazy, etc…  You might feel like you want to hide from everyone and everything or you might feel like you need to be held by family/friends and never let go.  Whatever you feel is normal and your approach for coping with the challenge before you is yours and completely fine.  You need a shoulder to cry on or someone to get angry with, we are here for you.  Just know that you are loved and your support system (including us) will come out of the woodwork to be there for you in any way we can as you go through this.   

I wish it was as easy for all of us to go out and find our “Happy Rock” but I hope you all can no matter what that happy rock is (and if it happens to be an actual rock like Will, send pictures I’m sure he would love to see them!).  I’m pretty sure my happy rock is my family (and probably hamburgers & french fries…) but I have more than one that is keeping me afloat through all of this.  It’s likely if you are reading this that you are part of my happy rock too so thank you all for the support.  We continue to love you all and will just keep taking it one day at a time, hopeful that we don’t spend all of the upcoming ones at PCH!