Tireless fighter for my 5yr old son with malignant recurrent brain cancer-looking for answers and support

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.


Chet - posted on 09/20/2014




You need to connect with other parents in this situation. There are certainly parents here who have faced cancer in their family. Cancer touches so many lives. But you will have more luck on a forem specific to the type or category of cancer that your dealing with.

There are lots online support groups for rare cancers, paediatric cancer, and specific types of cancer. Many are very active, and have members who are familiar with the most current treatments, how to get into research trials, which doctors take cases that other doctors label hopeless, etc.

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