Well folks, it's time for another edition of the good, the bad and the ugly. Brace yourselves, this post will likely be more on the technical side for those wanting to follow along with the details. If you're thinking, 'geez, I'm sick of these technical, boring, medical mumbo-jumbo updates.' Let me tell 'ya: ME TOO! (Not that anyone says "mumbo jumbo" anymore.) I wish I had something else to share with you guys. But our life these days is full of treatments, tests, drugs and waiting... and not a whole lot else. It's not fun at all, but luckily we have all your friendship, support and the hope of getting back to our glorious life and all of you at the end of this that keeps us going. Ok. here goes: The Good.Sam's bone marrow biopsy came back, and it told us he is in remission! (More accurately, he is in "remission without count recovery" at 0.1% blasts. You're allowed up to 5% to still be considered in remission, so this is not perfect but still very good.) The chemo did what it was supposed to do, and what the chemo in Wisconsin was unable to do. Considering any other result would have meant the end of his treatment, we are thrilled they were able to get him in remission. Hip, hip, hooray! Along these same lines, his blood counts have continued to recover, meaning his immune system is coming back. He's no longer at low levels where any little infection will make him dangerously sick. As his immune system came back, most of the problems he was admitted for last weekend have improved. The first question out of Sam's mouth when he heard his improved neutrophil count today: "Can I eat sushi yet?" (They said yes.) Since his counts have recovered very well, he was released from the hospital yesterday, and we are staying back at the apartment in Seattle with the Weises. There's more! Today we found out that they were able to find a donor for Sam's double cord blood transplant. So, when he's ready, they'll be ready for him. I am amazed and immensely grateful that a mystery team of people worked to make this happen, and a two mothers we've never met made a donation of their umbilical cords after giving birth. YAY. for. that. The Bad.While this is all really great, unfortunately he has a ways to go before he is ready for the transplant. I wish we had been more in the mood to celebrate all the good news, but there is always so much piled on that we're feeling overwhelmed and it's hard to stop and smell the roses. We try to as much as we can. But, you know, it's just a lot. Anyway, his liver function levels are still not healthy and he likely still has a fungal infection in his lungs. (They'll check in with a CT scan on Monday to see how his lungs are doing. Hopefully they're already looking better.) This is all important because they don't want him moving to transplant with either of these conditions, especially the liver issues. Since the drugs they have to give during the transplant are so harsh, he needs to have a healthy liver going in... meaning they can't start the transplant process until they see his levels come back to normal (or closer to normal) levels. The Ugly.All this was feeling tough but tolerable until today it became increasingly clear he is still dealing with some pretty aggressive Graph Versus Host (GVH) disease. If you've been following along with Sam's journey, you probably remember that GVH is what had him in the hospital for over two months last winter and almost killed him. And then after he recovered and we moved back to Alaska, his GVH made a nasty resurgance this June that put him in the hospital, and then continued causing trouble the rest of the summer.
When we were in the hospital last week, the doctors suspected that the issues he's having with his GI tract, liver and eyes are due to GVH, but they weren't sure. Then today, he woke up with a rash on his cheeks, chest and back and his doctors confirmed it was consistent with GVH. So now, not only will they not consider transplant until the liver, lungs and GVH have improved, we also know how quickly Sam's GVH got out of hand last time and how serious and scary and awful it is. They've given him drugs to begin treating the GVH right away, but they're the same ones that didn't work quickly last time (because there are no alternatives). This is freaking us the f*ck out. When we considered going through this again, my primary fear was Sam having to ever experience the misery of GVH again. Now, potentially going through that again knowing that also it blocks the chance for his transplant sounds truly terrible. So. If you have the time and the emotional capacity for adding one more thing to your list, please join us in hoping these drugs kick in right away the GVH doesn't get out of control and Sam can move to transplant as quickly as possible. As always, thankyouthankyouthankyou so much for the love.
Maureen
12/2/2016 04:46:38 am
You are in my prayers! Sending love, vibes & hugs!!
Steph
12/2/2016 02:16:49 pm
Jenny and Sam, sending love and good vibes from upstate NY (I'm a friend of Sarah's). I had a transplant in February for AML and so am intimately acquainted with the medical jargon and especially the stress of this process. I never thought I'd loathe anything more than the leukemia that almost killed me, but GvHD came in a close second. I suppose all you can do is support and love each other through the process, which is something you seem to have dialed. Best wishes to you both; I will be anxiously awaiting the next post.
Kelley
12/11/2016 11:56:31 pm
Jenny and Sam Comments are closed.
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