2 years post Bone Marrow Transplant
It’s hard to believe it has been two years since K’s bone marrow transplant. In so many ways it feels like a distant memory and in other ways it feels like yesterday. I’m not sure I ever imagined we could get here. I mean I hoped, I prayed, I wished but we were out of treatment options for so long and she got so sick that well I suppose on some level you start preparing yourself? I know K had and she was ok with going to be with God so the fact that we are where we are makes it even more amazing, special, incredible and on and on 🙂 We continue to be blessed beyond belief with how well she is doing. She is still sick every single month like clock work, fighting GVHD but guess what she started horseback riding lessons!!! She could have never done that 3 years ago.
We went to see Dr. Tolar at the end of July. Kimbell has engrafted 100% in her b cells, in other words her long-term immunity which is great. On the other hand she hasn’t engrafted all the way on her t cells which is short-term immunity. On top of that GVHD makes your immune system even weaker when it is flaring so in short that explains why she is getting sick every month. The goal is to figure out her GVH flares and possible shorten the flares to protect her better. The problem is K is extremely private so I never know about the flares unless she is scratching, I see her scalp having issues or she wears a dress and I happen to look at her legs. I need to put in a daily reminder!! Due to the infections and engraftment Dr. Tolar said we needed to continue her schooling as we did last year – now we know what God was trying to tell us!! If our house had sold She is sleeping a lot and her EBV test came back wonky so I need to follow-up on that. Her DEXA scan improved drastically which was a shocker. Super exciting. Her echo showed a decrease in something that I totally do not understand. They have found that chemo and BMT cause long-term damage so they look at percentages year over year. Anyhow hers decreased 10%. Neuropsych went awesome and they were super excited how much she has improved!! Last year they recommended she start OT and we just never did it. This year it wasn’t a suggestion so she will be starting that soon.
Now for the exciting news!! K has been the subject of more medical studies then most could ever imagine, well it appears that they are getting somewhere!! I haven’t seen Dr. Tolar that energized in a long time and it was so wonderful. One of the studies is about bone marrow, immune system and neurological functioning, the other is why danazol is working on some DC patients but others it works for a little while and then just stops.
K is taking her growth hormone shots and has grown a little. Please pray that she is vigilant about taking them. There have been a few bumps along the road. Life is definitely getting better, we are just having to adjust to the long-term effects of chemo and transplant. We are so blessed to have so many people praying for Kimbell, supporting us, having the perfect donor, and for her to just be around and living!
Love to all,
Paige, John and Kimbell
Recent Comments