Hi @alishawith4, I'd like to add my welcome. I'm sorry to hear that your son has medulloblastoma (MDB).
"In 2017, two CAR T-cell therapies were approved by the Food and Drug Administration (FDA), one for the treatment of children with acute lymphoblastic leukemia (ALL) and the other for adults with advanced lymphomas. Nevertheless, researchers caution that, in many respects, it’s still early days for CAR T cells, including questions about whether they will ever be effective against solid tumors like breast and colorectal cancer." https://www.cancer.gov/about-cancer/treatment/research/car-t-cells
Alisha, I write this information in part to share with other members reading this discussion. Clearly, the above information is not new to you.
You're right that clinical trials for new and novel therapies can give false hope, despite the careful consultation of researchers and signing of consent forms. It is altruistic and laudable when patients with late stage disease agree to take part in a clinical trial that will knowingly not prolong life and potentially can cause harm so that future patients may benefit.
I completely understand your decision to withdraw your son from the trial. You said that your son's medical management has taken "a grimm detour." I'm so sorry to hear this. What treatment is he getting? Are you also in the care of a palliative care team?