...and...Adam's bone marrow is still 100% donor cells! Fantastic news, yes indeed. I was a little nervous, admittedly, given we are are in a high-risk-for-relapse period. It is very reassuring to have those numbers back. His counts look great and he seems to be doing very well in that area.
Unfortunately, the good news is overshadowed by the results of Adam's liver function test. For a little while now, I have been worried that the GVHD (Graft vs. Host Disease) was on it's way back. The blood test confirmed my fears. It appears that the graft (donor cells) is attacking Adam's liver. I don't really know how serious this is, but it's bad enough that Adam has been put back on steroids. We have another follow-up visit in a couple of days at which point they will repeat the tests to see if the steroids are working their magic. In my maternal opinion, I think they are. The redness around his eyes is subsiding and he is feeling much better...not nearly so irritable. I don't really know what the next step will be. I'm sure that information will come with the results of the next blood test.
To be honest, I am a little discouraged by the return of Adam's GVHD. Okay, a lot discouraged. It's just one more reminder that we aren't going to be finished with this for a long time. Given that we've been at this for just shy of two years now, it's really overwhelming to think that we are nowhere near the end––if there even is an "end". However, somehow, I seem to find the energy to get up and leave the pity party I've thrown for myself, just long enough to remember that I don't have to look very far to find that our situation could be worse––in many ways.
So, on that note, for the present, we will focus on the fact that Adam feels good and is happy and is able to play. That's reason enough to simply keep fighting.
Hooray! And boo! I'm so sorry. How frustrating. We'll keep praying for you guys. So glad the leukemia is history.
That is fantastic about the 100%!! What a relief! I am sorry to hear about the possible liver complications . . . I think you are definitely entitled to whatever kind of party, even a pity party, that you feel like.
If it helps (probably not, but maybe?), our little friend who had a bone marrow transplant at the same time as Adam is back in the ICU, with cold and warm agglutination disease. I guess her B-cells are killing her blood cells. Her crit was less than 10 when they brought her in. It is now 17 after several transfusions, when normal is over 30. They may be in the ICU for weeks and months. She is on massive steroids and IVIG. We keep wondering if that little lady is going to make it. But that is the toughest little 1 year old one could ever hope to meet . . .
God walks with these children . . . there is every reason for hope, whatever time brings . . .
That's so great about the 100% donor cells! Very happy to hear that! But, frustrated about the liver issues. I hope that they are able to settle down and accept Adam's body. Glad to hear that he's feeling pretty well despite the troubles. And, yes, things have been much, much worse, so I'm glad things are as good as they are. We're still praying for Adam! Love you all!
Sending good thoughts your way.
Oh, wow, I can't believe Adam has another hurdle to overcome! It is great that he feels well and can play right now, but I'm so sorry to hear he's not out of the woods yet. I guess all you can do is take one day at a time, keep fighting, and enjoy the times Adam is happy. He is always in our thoughts and prayers.
I'm so glad to hear your good news, and I'm sorry about the bad news. You continue to always be in my thoughts and prayers!
We love hearing about Adam's progress and successes; what a hero and trooper he is, and his family too! We love you and continue to think and pray for each of you. Love, U. Lanning and A. Gail
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