Wins and Losses, Passing Day 100 and a little thing called Transplant Associated Thrombotic Microangiopathy!

The updates are coming a little farther apart these days as we work through a very slow, gradually changing routine on Will’s health.  However, this week brought in some more significant changes that I thought I would fill everyone in on.

I’ve used multiple analogies to describe this process over the last year; one step forward two steps back, two sides of the same coin, etc…  but the one I’m feeling today is wins and losses. 

So let me start with the wins.  Last week as we were approaching day 100, they ran a plethora of blood tests on Will to better understand where he is at post-transplant (I’m serious, they literally took the maximum amount of blood out of Will that they were medically allowed because of the sheer number of tests they needed to do.  It took them 30 minutes to just label all the vials.  I’m not sure any blood was left!).  The first 100 days post-transplant are where they see most of the complications so as you can imagine day 100 is a significant milestone in the lives of BMT patients.

Well win # 1 was that we passed day 100 and oddly enough I can’t even tell you which day it was. 

Win # 2 was the news from said blood tests this week that Will’s cells are now 100% donor cells.  That means that his faulty cells that weren’t working well have been removed and replaced fully with the healthy donor cells and the transplant itself was a success!  That doesn’t mean everything is done of course, we are still delicately balancing Will’s immune system and levels to cope with the GVHD he’s had as well as to make sure it doesn’t get worse.  Unfortunately, while great news in the long run, it felt a little hollow with the other news… 

That brings me to the losses…

Loss #1 was that over the last few weeks his platelets have started plummeting back to levels we hadn’t seen since before transplant.   That has meant we are back on the edge of our seats with monitoring for bleeds, petechiae and frequent infusions of IVIG or platelets to help balance him out like we did when we started this whole thing.  That meant four bloody noses on Sunday that thankfully all stopped without a drive into the hospital.  That means additional infusions, but thankfully not overnight hospital stays.  We seem to have successfully navigated insurance enough to allow him the treatment outpatient now, something they fought us on pre transplant.  Continuing the analogy, we’ll call that a moral victory out of a loss!

Our doctors are telling us not to worry too much, declining counts are to be expected but on the same hand they shouldn’t keep dropping. They should bottom out…

That brings us to loss #2 this week as yesterday we received during our regular weekly clinic of what is likely causing that platelet issue.  Will likely has another post transplant complication.  This time it’s TA TMA or Transplant Associated Thrombotic Microangiopathy for long! 

With much of this treatment process it’s been a balancing act of giving Will the treatment/medication he needs but with that comes a side effect they must watch closely for and treat another way to counter.  For example with the GVHD, they put him on steroids to treat the GVHD but steroids have side effects that they have to counter with multiple additional medications.   Then those medications can have their own side effects. It’s the constant delicate dance of the medication if you will. 

TA-TMA is yet another complication that happens when that balancing act gets a little off.  I’m always a little leery to get too far into the medical weeds here as I’m far from an expert and I know some of our doctors occasionally read the blog. Hopefully I’m not misstating anything but please correct me if I do!. As I understand it, one of the meds Will has been on has a nasty habit of damaging your blood vessels but it does a great job of treating the GVHD. His body has gotten a little confused with everything that is going on and that is resulting in higher blood pressure, reduced platelet counts and could lead to organ issues if left unchecked.  Here is a quick video from Cincinnati Children’s Hospital that breaks TMA down into easy-to-understand terms if you are interested.

Our doctors are taking it seriously enough that they are looking to start treatment ASAP (pending our favorite thing, insurance approval!).  So, what does that entail?  It sounds like it will be twice a week infusions of a new medication for as long as it takes to heal his vessels and drive his counts back up, while constantly monitoring him for bleeds and treating him with platelets and/or IVIG when his platelets are low.  I think its safe to say my resolution of 30 trips or less to the hospital this year is already out the window!

So yes, yet another overwhelming challenge in a series of them where we have to be patient as we delicately balance adjustments to meds to help with a range of symptoms while underneath it all the transplant is working.  I think I’ve officially become a broken record!

In a sense we just roll with the punches but some of that is just on the surface.  Will continues to be amazing with this whole thing.  Every setback is like “that’s about right what’s next?”  He just keeps plugging away.  Kim and I do that too but mostly because we must.  Unfortunately, we are also in the position where it feels like we are constantly waiting for the other shoe to drop, because we’ve been there.

However we’ll keep trying to stay positive, keep enduring the long infusion days at the hospital and keep acknowledging all the things we have to be thankful for despite the challenges we face. 

Lastly, I’ve said it before and I’ll say it again.  We couldn’t do any of this without the support of every one of you reading this blog, the support of everyone who has donated time, talents, and money to COTA for WillPower and all of our friends, loved ones, co workers, etc…  I remember feeling guilty when we were told we should partner with COTA because “we didn’t need the money”.  This has all been a lifesaver for us.  So, thank you all X 1000!  We’ll never be able to fully repay the favors, but I hope someday we might be on the other side of this and be in a position to support others through their journey, the good and the bad or the wins and the losses 😊   

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