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Powered by LifeTypeWe have only read the test results ourselves and have not heard from any doctors yet.
Her TSH is uncomparable, since the tests they do at Dartmouth don't go any higher than ">100" so is it 400 again, or 101 or 1000? But her T4 was up, almost to the normal range. So hopefully that means her thyroid medicine is starting to work. Jon read something about hypothyroid diseases being passed to people through bone marrow donations. But Faith's TSH was normal just before transplant. Faith hasn't had that tested since November 2023. Jon has in inquiry in to the doctors at Boston Children's about that.
Grace's heart is perfect.
I think her MRI showed that her ear fibroma is about the same. But they reported that some results were not clear because she moved. Jon had been interested to note that she didn't fall asleep this time. Despite getting up very early and not even falling asleep in the car on the way up. (She told me, "It was dark, and then it was morning!") But the MRI report also says to further investigate a possible thing near or on her eye nerve. Please pray for us to not worry and for that to be nothing.
Her kidney numbers were good. Her iron and related numbers were on the low side.
Thank you for the update. We are thinking of you all!
The comment about the low iron made me think about Popeye and spinach and then I realized that Grace (and possibly her parents) have never seen the old cartoons.
Hugs to everyone.
I have seen Popeye, though our kids might not. We've watched some old cartoons, but not those I think.
Boston said it might make sense to have Faith checked again by the PCP, though they said that thyroid issues aren't transmitted through the bone marrow, but I did read some case studies that said it can, though probably rare, like everything else...
I took part in a MEK inhibitor webinar conversation today put on by NF Collective and learned that among the 1 in 3,000 people that have NF1, there are 1 in 5 that have plexiform neurofibromas that could potentially be treated by a MEK inhibitor. (And so the other 4 in 5 either have PNs too small or "only" have cutaneous fibromas, though they made a joke about pain tolerances among most NF1 patients:
Doctor: How much pain are you having?
Patient: Oh, I don't know, the normal amount.
Doctor: Well, normal is zero pain.
Patient: ????
I remember as a child asking to have spinach, like Popeye. So my mother bought a can ("like Popeye") for me. I was shocked when we opened it because the spinach was green, not black.