Along with NF1, Ethan has Juvenile Xanthogranuloma (JXG). The two of those combined put him at a higher risk for Juvenile myelomonocytic leukemia (JMML). The chances that he’ll actually develop leukemia are very low still, but we are staying on top of things with routine blood work.
I try not to think about the what-ifs, but sometimes it’s hard not to. I lost a brother to leukemia before I was born and even though it was a different type of leukemia and it’s not a genetic thing, it still scares me to death.
We just got back from the lab. Ethan did so great. One little yelp and no tears. He got a cool bandage and a couple of Spiderman stickers, so all was good in his world. On the drive home, he did tell me “that hurt my arm” and required some snuggles on the couch once we got home. He did announce “I so proud of me!” too.
And now we wait for the results. I’m optimistic. I’m 99% sure everything will be fine. I hate the waiting, though. This is when the what-ifs are the worst.
June 4, 2008 at 2:32 pm
Hugs! And thinking many good thoughts for the best outcome! I love how super sweet and adorable the stuff he says is.