My husband is 23 and I am 25F, he was diagnosed in September 2025, and since then it has been a rollercoaster of treatment, hope, and despair. His latest surgery in March went amazing with a 99% resection with 80% necrotic/treatment effected tissue and 20% being viable tumor that luckily kept the MGMT methylated presence. He also maintained his sight, mobility, and personality after the surgery.
Unfortunately his spine MRI's came back as marked for concern that there is spinal leptomeningeal disease. I am prepared for loss and knowing the outcome of this journey, but the added bullshit of a successful surgery just to find out that there's a more difficult diagnosis to deal with now has made me incredibly frustrated and just burnt out.
I had reached out to the ABTA before and joined their mentor/mentee program, but the youngest mentor available was 46, and their situation (both medical and just life) is pretty different than mine. I would appreciate recommendations for groups that help caregivers closer to my age.