← Return to Diagnosed with Medulloblastoma at 19

Discussion
Comment receiving replies
Profile picture for kellyyramoss @kellyyramoss

Hi. My brother was diagnosed with medulloblastoma a month ago. He was able to have surgery and they resected the whole tumor. I was wondering if you could share what subtype you had and when your disabilities started. If you had surgery etc.

He is starting 6 weeks of radiation soon.

Jump to this post


Replies to "Hi. My brother was diagnosed with medulloblastoma a month ago. He was able to have surgery..."

Hi @kellyyramoss Welcome to Mayo Connect. Oh goodness, your brother is going through some pretty major medical drama. I’m so relieved to see the entire tumor was able to be resected. Now, on to radiation to make sure there’s no residuals!
I’m going to tag @es06123 and @hirad who recently shared their journeys on Connect. I just want to make sure they see your questions about subtype, surgery, etc..

I’m sure this is overwhelming for your bother and your whole family. How is your brother feeling? What is your brother’s age?

@kellyyramoss
My 23 year son was diagnosed with Medulloblastoma last year - it was non-WNT/non-SHH, group 4, CNS WHO grade 4, that metastasized to his spine. He had a craniotomy to remove the majority of the tumor. A shunt was added to assist with removing the excess fluid. My son had headaches a year prior to the tumor discovery and some eye issues like double vision and peripheral vision loss. Once the tumor was removed his vision issues improved, however 6 weeks of proton radiation damaged his optic nerve, and he lost some of his peripheral vision, and his depth perception is off. He has some limited issues with his short term memory issues, and his hand/ eye coordination is slower as is reaction time to events. He just completed 6 months of cisplatin chemo - one week of chemo, off three weeks with day five a blood booster shot. So far the last scans showed the cancer was stable and shrinking. The next scans are in 6 weeks and we hope they show it is gone. His personality has slightly changed a little. Praying for your brother and family. Cancer is a lonely, horrible journey. Angie