Day +26: Engraftment test day. I know I should have positive thoughts and feel confident Kiira’s numbers will come back with great engraftment results, but I’m nervous. Very nervous. I had a lot of scenarios in my head last year, but losing the engraftment wasn’t one of them.
Bringing Kiira to Mn for her 2nd bone marrow transplant was not an easy decision. Beside the concerns for putting Kiira through chemo and radiation again, it would mean more sacrifices on our part than even the first time required. My husband and girls have been gone for over 3 weeks now and my mom, who sacrificed nearly 2 months of HER time leaves tomorrow. I’ve already missed special days in their lives and yesterday I missed my friend’s wedding, which is a huge deal to me.
I’m not afraid of being alone here–I’ve made some amazing friends here who will be a huge support, as they already have been. I know Kiira and I can keep busy, even in her isolation; between feedings and meds every 2 hours, bandage changes, doctor appointments, work, and lots of fun play time, we keep ourselves busy.
What I am sad about, is all the things I miss at home. I know it was our decision to come here and I don’t regret that. Kiira is doing great and I’m beyond thankful–it makes the process easier. Overall I’m even doing well. But there are days when I wish EB wasn’t an all-consuming factor. Some think I write so positively about this life we were thrown into, but reality is that EB touches every decision we make, from how we hold Kiira, to what we wear, to where we take her, to her medical care, and to what we sacrifice for that care. Sure, I let Kiira play and explore with a lot of freedom and she is flourishing; however, EB, like probably many life-altering/limiting conditions, is cruel, not only to the person suffering from it, but to the families too.
For today, I can only pray that her sister’s donor cells have settled into her body and start healing her from the inside out so that our family can start healing too.
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