Christy - posted on 09/19/2014 ( 1 mom has responded )
I am a strong mother of 3 small children. Natalia, age7, Xavier age 5, Taliana age 2 and we have all been battling together to find a cure for our Xavier's Medulloblastoma ( a rare type of malignant brain cancer which has been resistant to chemo, stem cell transplant and radiation therapies). I haven't joined any support groups or connected in any real way with other moms in my situation, but after 2 1/2 yrs of treatment and 3 relapses, I need to admit that I can't keep fighting this monster cold, not as well informed as I could or should be and blindly following advice from Drs. who are as clueless as I am about what he needs for a cure. So, if anyone that reads this can help me sort out who, where I should look to for another treatment not more chemo or radiation, but something gene or antibody targeted, I am desperate for help and answers. His MRI showed 2 tumors on Monday 9/15/14, despite being on constant chemo for past 1 1/2 yrs...they wanna do gamma knife and more heavy chemo...doesnt feel right. help if you can please.