Iron sharpens iron - video
Hello everyone. I wanted to share a video about Lucas doing his PT but this is also an impassioned post to ask for prayers for the health of his brain and his teeth.
The methotrexate caused toxicity and he is among the youngest kids on an inhibitor called Gilteritinib in the world for the FLT3 Mutation. We have been waiting on imaging (that somehow got lost in the vortex) from previous MRIs, before we posted a blog about his MRI. We need prayers and we need people to focus on staying in the light, that Lucas brain does not have permanent toxicity that becomes challenging for him in his life. We are waiting, there were images taken at CHOP and Dell and MD Anderson, all likely on different machines. We need more answers , right now there are still more questions than answers. People have been asking “what happened with the MRI” and we thought we would know by now, but unfortunately we don’t. Neurology is puzzling for me, always has been. I have yet to feel strong about that portion of medicine, it has left me (and I believe Erin) with a lot of questions. The prayers, to be more specific are for toxicity to subside, for his brain to be resolving the drugs that were put in him to kill the cancer. The drugs that did not work by the way. The drugs that did work, in terms of putting him into MRD negative (remission) status were not toxic. Finding the right specialist helped with that. We almost made the wrong decision, and we are grateful for the 3rd round of chemo that was done at CHOP that put Lucas into remission, outpatient, with no toxicity.
There are also some good things. For one, his eyes are doing much better, the Edema calmed down and baselined thanks much in part to Dr. Edmond who is an amazing Neuro Ophthamologist at Dell Childrens, we are lucky to have her in Austin. Another positive, Lucas is eligible for his immunizations, we never saw this coming, but we will take it as my wife, Daughter of Mimi the cancer warrior, The Boston Fighter, Mamabear, so well put it on a blog post a while back.
Physical therapy is not written about much in transplant. Its really important. PT builds mindset, PT builds resilience, PT keeps the fighter mentality going. Iron sharpens iron.
