Alright well, I don’t think the English language has the right words to convey my sincere apologies to everyone who is following along with our story here only to have a gap of almost five months in our narrative. 

No excuses but the reality is that most of the updates I have written over the last two years were done while sitting around a hospital waiting with nothing better to do.  In the last five months the amount of time we have spent sitting around a hospital has significantly decreased and in exchange the times where I sit and think about what I want to convey in the blog have decreased.  At first, I missed updating in June and I thought, man I really need to update the blog.  Then summer flew by, and I thought, man I really need to update the blog.  Now its October and I am thinking okay, enough is enough its time to update the blog so you all know Will is still alive (and doing well I might add.  No news is good news in this situation!)

The other part is that there hasn’t been much in the way of earthshattering progress or complications to mention.  Things have been steadily improving at a very slow pace.  In some ways it feels like we are still where we were back in May but then I stop and look at the decrease in hospital appointments, pills, infusions, etc…   More on that in a minute. 

On top of that, I’m happy to report that while still very much in the middle of recovery, life has somewhat gone back to something resembling normalcy for us.  Will and Kim started back up the school year on time in August and while having some ground to catch up, Will has embraced what we are calling grade 6.5 to catch up on the last year at his pace.  Homeschooling has been tremendously beneficial for us throughout this process.  We must keep reminding people that Will’s goal isn’t to go back to school.  We were doing homeschooling long before with Will for several reasons.  The transplant wasn’t one of those, but it did allow us for flexibility in the extreme situations we have been through and go at the pace he is comfortable with.  It helps that he is insanely smart and advanced for his age anyway 😊

The overall report on his health is that he is doing great but before I go into the details, I wanted to share a couple of the highlights and milestones we have covered during the last few months. 

First off was Wills birthday back at the end of June which coincidently I attempted to write a blog post for at least a half dozen times but could never make much progress.  I guess you could call it writer’s block. 

Will turned 12 at the end of June and while very limited on what he could do without a functioning immune system, we still managed to have a good time at home and give him a few memorable gifts including his doctors allowing him to skip about 75% of the pills he had to take for his birthday!

One of my favorite gifts he received was a small poster that he asked for and is another one of those things that sums up Will better than I can.  Will’s favorite subject in school is science and more specifically chemistry.   For his birthday Will asked for a poster of the Chemical Structure Diagram of the Serotonin molecule, also known as the Lewis structure of Serotonin for all my science fans out there!   

Serotonin is of course the chemical messenger that plays a key role in the human body’s regulation of many activities including mood, memory and behavior.  It’s commonly linked to happiness/depression but it serves many functions including regulating sleep, motor control, digestion/vomiting, bone health and (interestingly enough in our situation) helping your blood clot which is kind of how we ended up in this whole process in the first place!  So why did Will want a poster of Serotonin?  Because he’s Will, he’s awesome and he thought a representation of happiness on his wall in a scientific way would help him be happy!  Speaks to the way his mind works and the depths of his emotional maturity. 

We ended his 12^th birthday with the literal icing on the cake.  There is a nonprofit organization called icing smiles (icingsmiles.org) who are “baking” a difference by delivering dream cakes at no charge to kids impacted by critical illness.  Our awesome social worker at Phoenix Children’s put us in touch with them and in return we were able to work with an awesome local cake decorator @thecakeavenger who donated his time and talent, took Will’s love for cats and the color blue, and whipped up this masterpiece.  Only one issue with it.  Will loves cats so much he refused to eat the cat part and didn’t want us to cut it! He enjoyed the cake part though!  The cake tasted as good as its looks, and I can’t stress enough what an awesome idea this is to do something to put a smile on a kid’s face who is going through some of the worst things imaginable.  It’s one of those things you wouldn’t think of but these are the types of things these kids need to help drive away the grind of lengthy treatment plans and slow recoveries.  Two thumbs way up for Icing Smiles, @TheCakeAvenger and the whole process. 

The summer was mostly uneventful, only marked by the decreasing number of times we ended up in the hospital.  We did have one little scare with his central line that one day randomly wouldn’t give up any blood, but we got through that mostly unscathed, and the summer progressed up until September where Will hit a major milestone. 

A couple of weeks ago we were able to go in for his one-year survivor checkup!  Not a fan of the term “survivor checkup” but he has been through a lot so who am I to judge.  While it was a long, draining and somewhat stressful day, we met with several different doctors who all reviewed Will and gave him his status update a year into this process.  I can’t say they gave him a clean bill of health, but everything is going how they would want it to so it was about the best we can hope for.  They also gave us some initial insights into what the next year+ may look like and things to watch out for (for example, apparently, he will be highly susceptible to skin cancer now so its very important he always wears sunscreen when he goes out now.  Thankfully he doesn’t like to go out!)

It was a great visit and while we are by no means finished with this process, he has come a long way.  His doctors are very pleased with his progress despite some of the challenging complications he went through.   He seems to be responding well to everything and is in the process of being removed from more medications. 

The doctors also allowed us to take him off his overnight fluids for a couple of weeks to see how his body does.  I feel like I have mentioned this, but Will has remained on a 10-hour daily dose of IV fluids with Phosphorus and Magnesium this whole time.  So, every night at nine we would go through the ritual of hooking him up to his IV pump/Fluids and every morning between six and seven (it always struck me funny at how inconsistent it was!) we would unhook him, flush his lines, etc…  It’s been the routine and short of a two-day period for our anniversary where Kim’s sister came down to take over and allow us to get away for a couple of days it’s been our life for the last year. 

Thankfully Will has responded well to that trial period and will no longer need fluids.  On top of that he is no longer showing any markers for the TMA complication, so we were able to stop his Eculizumab treatments.   These two things are leading to another major milestone as yesterday the doctors submitted the order to have his central line removed! 

Through it all the pills have been decreasing.  I think he takes twelve pills in the morning now, two in the afternoon and seven at night.  That is probably about half of where he was at his highest point and most of the time he takes them without too much fuss now.  While we are removing his central line, he will still need occasional infusion treatments over the fall/winter months so he will have to be accessed via IV for those, but they should be less than monthly.  While he hates pokes and IV’s and still gets himself a little worked up about them, he’s doing great with it (if his little veins will just hold up that is!) and is happy to go through that if it means taking the central line out.  As soon as he heals up and is given the green light we will have to find him somewhere to swim as I suspect it will be a little too cold in our non heated pool but who knows, we are still hitting 105+ in Phoenix right now.

Things are so good that last week we even had our first week in well over a year that we didn’t make any trips into the hospital, and we likely wrapped up his physical therapy this week.   

So, are we all done?  No, but we are down to one visit every other week for labs and check ups with his doctors combined with the occasional specialist visit mixed in for good measure.  They seem to be reducing a pill or two every couple of weeks. His immune system is still mostly nonexistent but starting to show signs of life.  So, while we are still being very cautious, he did receive approval from his doctor to go do an escape room which he has been dying to do for months.  We must still avoid crowds, not let him touch too much, wear masks and all that good stuff.  Basically just use common sense, but each day/week/month things seem to get back to normal. 

And that is perhaps the best/worst part of all of it.  I’m not sure we even know how to be normal anymore.  I’ll speak for myself but I’m honestly having a hard time with the adjustment, and I don’t know why.  It’s a great thing, don’t get me wrong, but I feel like I don’t know what to do with myself when every minute of every day isn’t focused on his care.  I didn’t expect it to be a hard adjustment but oddly it is.  It’s almost like my mind needs some kind of trauma to function and is searching for one.  One of those good problems to have though and we’ll take it.

Hard to believe that it’s been a year since the transplant.  It’s hard to believe we went through any of it if I am being honest.  We are creeping up on the two-year anniversary of when Kim first noticed the petechiae in his eyes and they ran the blood tests to reveal his platelets were critically low.

As part of all of Will’s improvements, I was able to start going out and traveling for work again and a couple of weeks ago that meant attending our yearly customer conference.  More importantly, it meant getting to see many of my coworkers and my team for the first time in almost two years (and my awesome brother Dave who works at the same company. Now conferences double as a family reunion since we don’t see each other often!) 

During this years conference we were having dinner one night and the conversation turned to pets. I went searching through my phone for a picture of our dog Roxy to share with everyone.  I unfortunately couldn’t find one (although I did have dozens of pictures of my cats, please don’t tell the dog she already feels unloved!) but I did stumble upon this picture that I shared last year at this time. 

A year ago, during this conference we were in the hospital. Will was getting his first doses of chemo in preparation for his transplant.  His body was starting to go downhill as a result and as parents we are sitting there watching our child literally go through hell with no way to help.  It was probably one of my lowest points.  That was when my boss texted me the picture of my team and coworkers all sporting the “Where there’s a Will there’s a way” t-shirts that I coincidentally was also wearing at the hospital.  It immediately boosted our spirits.  That’s just one example of countless where we have been lifted and supported by all of the amazing people in our lives.    

If you are reading this, I want to give you a heartfelt thank you.  Many I will never actually be able to tell directly including the dozens upon dozens of anonymous donors.  People keep telling us that we are amazing.  I don’t take compliments well but fine if you want to say we are amazing I say we are amazing because of all of you out there reading this and supporting us.  We don’t do any of this alone.  There has been a cast of thousands supporting us through this. 

The only real amazing one here is Will, the expert caregivers at Phoenix Children’s and all the amazing kids who are going through challenges just like him.  My view of the world has been forever altered through everything we have been through and despite the immense heartache, grief, anger, frustration, etc… that has come along with it, I don’t think I could have it any other way. 

It’s too early for the moral of the story, but as I look at Will and what he had to go through I’m impressed with the idea that if he can stay positive and indirectly spread that positivity through what he has gone through, then what excuse do the rest of us have?  We should all be able to spread positivity regardless of the madness that is going on around us.      

We love you all, more than you will ever know, and thank you deeply for all you have done and continue to do for us.  I only hope when the shoe is on the other foot that I can help you as you have helped us. 

Sorry, that sounded like a goodbye, but we are far from done.  I’m sure the updates will continue to be sparse as life is hopefully uneventful, but I’ll challenge myself to update the blog a little more frequently going forward.  I’m sure they will be boring updates, but we are probably overdue for a little boring in our lives!

Turns out we gon’ be alright!