Today is Sam's 30th birthday. It's a good thing he's not that into birthday celebrations, because we're 29 days into this hospital stay and feeling so far from celebrating. All your #30forSam posts and activities are definitely helping to lift the spirits though. Thank you! I haven't updated in a while, so if you're interested in staying up on the medical details, read on. The Good.As I noted in the last post, Sam's blood counts have been haywire and his doctors were worried that the leukemia had come back again. They did a bone marrow biopsy on Monday. Initial results came in on Tuesday and they showed no signs of leukemia. Phew! This was such good news. We are still awaiting final results on some additional testing from that biopsy that needs to be sent away and takes much longer. So we are still anxious for those final results and to be able to say for certain there's NO more leukemia, but we are happy with what we have seen so far. And, I suppose I should say, I have a habit of only posting to this blog when major events happen, which tend to be negative. But Sam does have good days or afternoons or hours (we'll take it!), especially lately. Just yesterday, he was unhooked from his IV pole for a few hours and we got to walk outside! It was great. The Bad.Sam is in the hospital because of Graph Versus Host Disease, where his old cells recognize the new, transplanted cells as bad, and attacks them. This has impacted his GI tract very badly. It is really hard to talk about this because well, it's pretty disgusting. (In fact, if you are easily grossed out, you should probably just stop reading now. I warned you!) The main thing they are tracking is Sam's "output," which means we basically just talk about Sam's poo all day, every day. We have seen (or had been seeing, at least) gradual improvement since he came into the hospital for GVH 29 days ago. His upper GI has improved (no more vomiting), his GVH skin rash has cleared, and his lower-GI problems have ...fluctuated. Sometimes it seems better, sometimes not. The fluctuation makes it really difficult to tell whether he has made progress. The docs tell us over and over: this is a very slow healing process. So we are constantly unsure of whether he is actually getting better - just really slowly, or if he is stalled and they have not yet found the correct drug to treat this problem. After 29 days, it is very frustrating. And frankly, really scary. In addition to GI problems, the fact that it has been 6+ months now is definitely setting in and we are trying really hard to remember real life and keep his spirits up. In the evenings, we turn on good music and lay in his bed together and think about fun things we'll do when we get the hell out of here. Restaurants, trips, meals to prepare, hikes to try, etc. It's keeping us sane. The Ugly.More recently, the lower GI problems took another turn for the worse when he started loosing large amounts of blood when he went to the bathroom. (Like often over a cup of straight blood per time, and going very frequently). Loosing that much blood and fluid volume quickly wreaks havoc on the body, as you can imagine. You get a headache and instant anemia from blood loss. Your heart rate soars and blood pressure drops due to lack of fluids. It's really scary. Last night it got so bad that he needed 6 transfusions of blood and platelets (the cells that help clot the blood), plus two giant bags of fluids. Today he is still losing blood and his blood pressure remains too low. He is undergoing some tests this afternoon to see why this is still happening and if they will be able to fix it. Having doctors repeatedly tell you, "I don't envy your position" and, "if that happens, we'll have to put our heads together to come up with a solution" are not fun things to hear. I'll edit this post later with an update. 4:20pm Update: The tests they did today confirmed that his lower-GI has not improved with the treatment he's been given so far, and his team of Docs are taking the night to think through the new plan and check insurance coverage. Basically the, "if that happens, we'll have to put our heads together..." thing happened. On the plus side, the bleeding has stopped for now. In the meantime, they told him no food or water and to "rest the gut." and ...happy birthday? What can you do?Thank you so much for all the #30forsam plans. It is truly so cool to see, and brings a smile to Sam's face every time. Fun fact: Did you know that you make hemoglobin (red blood cells) when you exercise? Bags of red blood are what they have been giving Sam through his IV to help stabilize him and keep him alive. He has gotten SO many bags of them. If you want to help even more and are able to give blood, please consider donating blood again. It is SO important for patients like Sam and thousands of others. Thank you a million in advance!
Thanks for sticking with me through this long update, and sending continued healing prayers to Sam, and wisdom for his team of docs.
Schmidty
1/15/2016 11:07:39 am
Holding y'all close today -- and wishing you the best possible birthday, Sam. It's clear to all of us you're kicking ass every day.
Andrea
1/15/2016 01:47:42 pm
Jenny,
sally
1/15/2016 02:46:13 pm
Thanks for posting... good news is the upper GI is healing! Healing is good and contagious! Hopefully the lower GI can heal too. loving you guys all the more! Sending strength. xo sal
Keith
1/15/2016 03:53:53 pm
Thanks for the updates, beautifully written on a difficult subject! I gave blood Wednesday, but didn't find out about Sam's predicament until today, so it feels like I had a purpose now. So sorry for what you're going through, stay strong Sam! Our thoughts and prayers will be with you!
Chris Mannix
1/15/2016 05:00:33 pm
Sam & Jenny, I did not ski Sam's age or anyone else's today, but I groomed a ton so that tomorrow I will have good conditions for skiing the 60K that I hope to do. I was definitely thinking about you today and wishing you well. Could you do the same for me tomorrow?
Jenny
1/15/2016 07:42:19 pm
Chris- Comments are closed.
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