Update: Ive been holding out on doing an update for a few days because we were heading in the direction of leaving CHONY this coming Friday, and I didnt want to jinx it...then Brett had a fever of 103F and that changed the plans. They are potentially looking at getting him out of here on Monday and sending him to the Ronald McDonald House - NYC. This may or may not happen. It is completely based on whether he spikes a fever or other symptomatic issues arise. They still do not have a good grasp on what is going on in his small intestine and he doesnt have the capacity to swallow the small camera to investigate what is occurring in there. They do know he is colonized with VRE (Vancomycin Resistant Enterococci) - a nasty bacteria that cant be contained with the very strong antibiotic Vancomycin. They also know he has a lot of inflammation. They do not know if there is infection. He is currently neutropenic...he is using up all of his neutrophils to fight whatever is going on in his body. They give him GCSF daily to help up his White Blood Cells. He is still waiting for his last three doses of MSCs - Mesenchymal Stem Cells. This is why we are still here. Brett needs hearing aids because of the damage done from all of the chemo. He cant hear in the upper range of sounds. Monday, he goes for an eye exam as part of the protocol of the MSCs. His last Bone Marrow Aspiration/Biopsy showed no MRD - No FLT-3! NO LEUKEMIA!!!! They will continue to check these monthly since he is not taking any TKIs to keep it from coming back. The best he has done is the last few days, while Alexandra and Zoe were here. There is a sense of normalcy and family and he has been thriving with that. The doctors have agreed all along that having them with him has been the best medicine for him. Today, he got down on the floor for the first time in over six months. PT brought a mat in for him and I showed him and walked him through the steps to get down on the mat, using the couch, sit there for a bit, then back up utilizing the couch (the hardest part). He can get himself up on the couch and up on the bed. He went outside yesterday for the first time since arriving in NYC. Thank you all so much for your well wishes, prayers, caring and love. I cant and wont be able to ever tell you how much it means to me and our family!
Posted on: Thu, 13 Nov 2014 04:14:30 +0000
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