We have thankfully started to wean the steroids. The rash is completely gone. The dose has been cut in half and will remain that way for a week. If there is no sign of GVHD, we will cut the dose again and go from there. If the rash comes back, he will go back on the higher dose. We are anxiously watching and trying not to obsessively check his skin.
The other piece of good news is that the higher level chimerism test showed that all cell lines that Ezra has (not including T cells) are 100% donor. Yes, it is still possible that Ezra's T cells can end up being mixed chimerism, despite the fact that all other cell lines are 100% donor. T cell chimerism will be checked once he has more T cells.
The wean couldn't come soon enough. The steroids are wrecking havoc on Ezra's stomach. We are already seeing improvement in how he feels since cutting the dose. We've been struggling to figure out ways to help Ezra deal with his pain. Fortunately, Ezra has figured out his own way to deal with the pain - with "pain rockets." He pretends that one of his rockets is a pain rocket and he launches it into space where it hits an asteroid and all the pain disappears into space where it can never hurt anyone again. It's working for him, at least for now.
The super-sized menorah is back on our front lawn ready to light up our Hanukkah! For those of you who have noticed compared to last year's picture, yes, he is most definitely taller! Here's to hoping that the holiday of miracles brings the miracle of no GVHD and a growing immune system.
The wean couldn't come soon enough. The steroids are wrecking havoc on Ezra's stomach. We are already seeing improvement in how he feels since cutting the dose. We've been struggling to figure out ways to help Ezra deal with his pain. Fortunately, Ezra has figured out his own way to deal with the pain - with "pain rockets." He pretends that one of his rockets is a pain rocket and he launches it into space where it hits an asteroid and all the pain disappears into space where it can never hurt anyone again. It's working for him, at least for now.
The super-sized menorah is back on our front lawn ready to light up our Hanukkah! For those of you who have noticed compared to last year's picture, yes, he is most definitely taller! Here's to hoping that the holiday of miracles brings the miracle of no GVHD and a growing immune system.
Dear Robin,
ReplyDeleteI was shutting down the computer at about midnight and I don't know what made me check my important emails, (by the way yours is the only thing in it), as you usually write earlier in the week. I couldn't believe my eyes when I saw your headline" The Silver Lining" We are thrilled to hear such fantastic news! I know each case is different, but I did want to tell you that Ricky had a bad case of GVHD and he has fully recovered, put on a good amount of weight and looking and feeling great. We're sorry to hear about Ezra's pain...hope its all gone real soon. He sure has an amazing imagination, unbelievable. Give him a big hug and a kiss for us and Happy Happy
Chanukah...we hope all of your wishes come true!
Much love, MIchele, John and Aunt Miriam
xxx's & ooo's
Yeah for the silver lining.
ReplyDeleteGlad to hear the GVHD cleared up easily and I really hope it stays away. Love that you find a silver lining through it all. Ezra is lucky to have a positive person to keep him going strong. Thanks for the update. Always thinking of you all. Happy Chanukah!
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