Medulloblastoma survivor here to help

Welcome, @es06123. I also added your post to the Brain Tumor support group. Can you share a bit more about your experience? How was your tumor discovered? What treatment did you have?

This is a long story shortened at the end of 2009 I was 22 years old and had many headaches and vomiting. It was more common the day after drinking beer, so I just shrugged it off as hangovers. Once they started to become more frequent that is when I checked myself into the clinic and they found the Medulloblastoma. I had a long 14-hour surgery, radiation, chemotherapy, occupational, speech and physical therapy. Four months later I was able to return home. Due to my short term memory loss I do not remember a ton of information on my cancer. It was a long road to recovery but I am doing as well as I can be. I have attached my disabilities spreadsheet and would like to share any knowledge I have of how I manage my disabilities on a daily basis.

Thank you for sharing your story my son, who is 23 was diagnosed with Medulloblastoma last year. We have done surgery to remove the tumors, 31 rounds of proton radiation and will begin his 4th cycle of chemo.

@feltesangie
Hello, my son was dx with medulloblastoma in 2020 at age 20. He is now going to be 26 yrs in a week.
We are currently on the 6 month scan schedule with baselines once a year there at mayo.
Things are going pretty good for him currently, I’m hoping things are going well with your son under the circumstances. If you ever want to chat, please reach out!
Renee

@feltesangie, how is your son doing? How often does he get chemo?

@colleenyoung he is doing good after completing round 4 of cisplatin chemo. 1 week of chemo, three weeks off. His platelets and white cell counts have been running very low after round 3 and he was delayed a week and half before starting round 4. He will most likely be delayed a week or two for round 5 due his counts being low. He is trying to do better with eating blood boosting foods and taking supplements. However select food was not tasting right, or had a funny taste.