What does long term survivorship of childhood MB look like?

purplebuzzybee

Hi, I'm new here. I did some searches and found old threads with a similar question to mine, but nothing recent, so I'd thought this could be an update.

In 1980 my sister had a medulla blastoma. She had surgery and full brain and spine radiation. I've been her guardian since our mother died.

She is now 46, lives with cognitive disabilities (I think of her as being roughly age 8). She has very thin hair. Long legs but a short torso - she's under 5" tall. Balance has always been an issue. She can read and write at about a 3rd grade level. Anything math related is very difficult. Her social skills are strong - she's fun to be with, a warm, caring, helpful person with a contagious laugh. She doesn't drive or work because of her disabilities. She loves animals and is a prolific artist. She lives in a group home for people with cognitive disabilities.

In the past few years her health has changed - three years ago she developed partial seizures that are managed with medication. Recently something happened (we think a seizure) and she developed significant right-sided weakness. It has improved with PT and OT but her physical ability is less than it was before. I think she has some hearing loss (I haven't had this checked). Generally she's pretty healthy - thyroid issues and high cholesterol have been her only meds for years.

Is this the beginning of decline or was this just a blip? What can I expect? What do I need to do to prepare? Is there any road map for a caregiver to understand what is going on?

If you care for someone or are a person with a medullablastoma, especially in the early 19080s, I would love to hear your experience. I know that we are all different, but I'm hoping there are at least some commonalities.

Thank you. My heart goes out to all.