Went back to the clinic today to meet with the Leukemia doctor who initially got trevor into remission. Unfortunately, the first course of treatment was balls to the walls intense and they hit trevor as hard as they possibly could because his leukemia is different, rare, and very hard to treat. Back when this all started, we found out Trev has a mixed linear leukemia gene and as far as they could test after treatment, they thought they were able to get rid of it. Well it’s back and that is why the cancer is back in full force.
Long story short… someone who relapse so soon after a transplant, transplant can’t really be considered at this time. Not saying it can’t be in the future if he goes back into remission. However, treating him so aggressively over and over and over again with it to 99.9% fail due to this gene is not fair to Trevor and does not provide much quality of life.
Plan moving forward: his doctor has consulted with Mayo Clinic, Ohio State and a few other hospitals and they feel that trevor most definitely should be enrolled into a trial that focuses on destroying cells that contain the mixed linear gene. That means we potentially will be headed to Boston or maybe Columbus. In the meantime, trevor will have his Hickman line put back in, outpatient chemo, multiple spinal taps, and more bone marrow biopsies. He’s strong as before and he’s ready to do what he needs to do. 🧡 love your loved ones a little more ❤️
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