It’s been 6 months since Lyla’s bone marrow transplant in Minnesota, 3 months since we found out about her last bump in the road and two months since we’ve been back home in Arizona. And, a long time since I’ve written a blog post, sorry!
The last few months have been pretty crazy getting moved back into our home after 5 months, transitioning Lyla to the BMT team at Phoenix Children’s hospital, ALOT of doctor visits and infusions, keeping Lyla in isolation, recurring norovirus since she has no immune system, and an insane lack of sleep and frustration from steroids keeping Lyla up every hour of the night and us trying to regain some sense of normal life. Our saving grace for the past two months has been help from our family and most especially from Lyla’s Nana (Steve’s mom), who for the second time in the same month dropped everything in Wales to come live with us and help take care of Lyla. We literally could not have survived the last few months without you, Janice. Thank you from the bottom of heart, we are going to miss you immensely!!!
In last few months, Lyla has had 4 infusions of retuximab, an immune suppressant drug, and has been on high dose steroids to wipe out her immune system AGAIN. The goal was to kill the T cells creating the antibodies against the donor platelets and red blood cells. With the hope that once the cells start growing back, the memory of those antibodies will be forever gone and never appear again. It’s a tricky process because after the infusions and a very slow wean off steroids, the only thing we can do is wait, hope, wait, and hope some more. It’s going on two months and we are still waiting! All signs so far are pointing to a happy outcome though!! Lyla’s platelet and red blood cell counts have remained strong, even as her steroid dose has been declining week by week. The drop in steroids allows the T cells to re-grow and if those antibodies come back, the first indicator is normally a drop in counts. The hard part is we won’t know if it’s worked for sure until Lyla is completely off steroids and her immune system is fully recovered, which won’t be for at least another month or so. We are very optimistic she will pull through this last bump in the road though!! In the meantime, we are continuing to keep Lyla safe and germ free at home but all of us are happier and happier each week as the horrible drug called steroids slowly disappears from our lives! :)