Day +360 Post Bone Marrow Transplant

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Day +360: We only have 10 days left until we head out to Mn again, but the 100+ degree weather and extra movement from Kiira is paying its toll and we can’t wait to get the BMT process started–to give us hope of something, anything. Wounds don’t even fully heal before they blister again, spreading more each time. Kiira’s itchy, dry skin can’t be soothed with creams and bandages stick to dry patches, pulling more skin off. Despite all these things, the rare moments we let Kiira outside, she is so full of joy and awe. I wish I faced things with such wonder and contentment.

We got the genetic results back on Kiira’s sisters–they each carry the EB gene–one carries mine, the other carries Jason’s. Since we don’t show any manifestations of EB with only one recessive gene, they won’t either, but they’ll need to consider this mutation with family planning. As the geneticist reminded us, we all carry numerous mutations; we just happen to know about this one and can test for it. If our girls happen to find a spouse who also carries it, a one-in-a-million chance, then they can pass along RDEB. But hopefully by then, the cure we seek will be found.

This is our last full week at home, and I adore my family, friends and church and want to spend as much time with them as possible. I have 10 more days to soak in memories to get me through 100 days alone.


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