Sweet boy had been sleeping in his own bed, in his own home. We hadn't yet been discharged to Edmonton but were able to spend a few weekends at home as long as he was doing well. It was everything. That was until we were admitted two weeks ago, initially with a fever caused by a blood infection. Most recently due to a virus that may be suppressing his bone marrow.
It has been 249 days since Kiah underwent a Umbilical Cord Stem Cell transplant and everything that goes with it (261 since we arrived in Calgary). The transplant was a success. His last chimerism blood test confirmed once again that one hundred percent of the cells being made in his body are donor cells. Therefore he has not received his weekly Enzyme Replacement Therapy since day 100 (back in October).
Blood infection aside his main issues now are the instability of his blood counts- he is currently needing sometimes twice daily platelet transfusions and red blood every three to four days. As well as managing his skin (Graft Verses Host in the form of a rash). Unfortunately resolving these complications takes time and it will be several more months before they transfer his care back home. In the meantime his immune system is greatly compromised (as we've seen with the two reicent blood infections and new virus), due to his long steroid and cyclosporine wean. It has been over eight months since Kiah has been able to be in any sort of public place besides the Ronald McDonald house, Alberta Children's Hospital and our home. Worse yet, he now remains on isolation at ACH due to the current virus. Truth be told he doesn't seem to notice. As usual he is unfazed by all of it. This is his normal, it's all he remembers and everything he's used to. That fact saddens me to my core and yet provides me relief at the same time. I would give anything for him to have a full life and all that he deserves.
Regardless of where we are, our days are full and I often find myself caught up in his joy, just as I always have. Even in the darkest moments sweet boy brings light and laughter to the surface. He currently insists on being called "Dr. Love" by everyone he comes in contact with- it was Buttercup until Dr.Love took over recently (both fitting I think). <3
some of the bright spots of the last few months…
