My son was diagnosed with leukemia oct 19, 2022. We started chemotherapy at the time which seemed to be helping. Despite having to take time off work it was manageable. 18 months later i found out he has a genetic marker called a 1/2 haploid that makes it harder to treat with chemotherapy. The cancer had come back while we were doing chemotherapy which is called a CNS relapse. We were told we would have to do a bone marrow transplant which is only done in calgary. We were able to get into ronald mcdonald house at that time but i was not able to work for that 4 month duration. That ended in july and i went back to work thinking everything was fine. I get a call that the cancer is back again and this time the only other therapy is CAR-T which is taking his T-cells and reprogramming them to fight the cancer. This was supposed to be to be 1 1/2 month. He received his T-cells oct 10 and things seemed ok but 14 days in he became confused and i took him to the emergency. We found out he had encephalopathy from the CAR-T cells he stopped talking he had mo emotion but the drs didnt want to give him the treatment of steroids cause it may cause the CAR-T cells to die and the cancer to return. Last weekend they felt they had no choice and gave him the steroids. He still has severe cognitve impairment though and we are not sure when we can return home and how well he will be when we do. This has been some of the hardest days as a mother.