It's been a while since my last post, I realized I didn't write after our holiday checkup. We went back to Memphis at the end of December and things were fine. The hemoglobin was 10.6, which I'm pretty sure is the highest I've ever seen it! The platelets and ANC dropped a bit, but since Dr. Reiss was out of town, Martha thought it best to leave things alone for now. We did labs at Children's last week, but I haven't heard the results. I'm sure they are low, and that is why Martha didn't call me & tell me to lower the tacrolimus by a little more.
Honestly, I'm good with this long, slow taper. I keep the thought of a bone marrow transplant in the back of my brain, and I don't let it out much. So the longer the taper, the longer a BMT is away! Of course the best case scenario is that he tapers from the medicines and his counts stay stable, and that is still the current plan. But the "what if" is always looming.... So for now, a long slow taper, say 80 years, would be fine with me!!
Our next trip to Memphis is over the Mardi Gras break, unless they think we need to do it sooner. Mac is doing fine in school and growing like a weed - tall & skinny!!
Thanks for checking in and praying. Just when I think no one is reading the blog anymore, I hear someone ask about Mac's progress. I thank you all for your concern and prayers. I am sure that is what is giving us (and Mac) the strength to deal with this illness. It's not easy being a teen with an illness. I had another St. Jude family mention this to me recently. So please pray for Mac's continued patience and strength - and of course his bone marrow!!
Happy Mardi Gras!
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