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.

Time_Travelling_mama

my situation is slightly different but also similar, sounds like all the symptoms are radiation injury, has she had an MRI to see if she has radiation necrosis? do you know what dose of radiation she had?

My daughter was 2 years old and treated for a cancer she didn't have in her brainstem with 59.4gy of radiation. she never learnt to walk unaided and her speech is delayed, she understands most of what goes on around her but also has a lowered I.q, telling the time and maths are just lost on her, she reads pretty well and can txt, and is quite responsible, also loves animals and is a home body, doesn't like crowds and is very shy but loves clowning around with her 3 siblings, she has had her hip replaced due to one sided weakness, she has a right convergent squint, has great coordination with electric wheelchair but also said to have a 9 second cognitive delay (which I question).she is also small in stature as am I but her 3 siblings are at least all a head taller than me, I injected her with growth hormones for years just to get her to my height which is about 149cm as the radiation stopped her pituitary gland function

2 weeks ago on her 17 birthday she was diagnosed with a mass in her brainstem bigger and deeper than the last likely caused by the radiation she never needed, she most likely had a low grade TREATEABLE tumor and now she potentially has only weeks to live, the alternate is radiation necrosis which they cant distinguish from MRI alone but it would be the lesser of 2 evils

However I'm thinking after all that time since your sisters treatment she would be considered out of the danger zone for that., or maybe back then they didn't have the late effects of radiation monitoring they do now.

Time_Travelling_mama

both hearing loss and one sided weakness would be consistent with radiation narcosis and even seizures, she would need an MRI or biopsy to confirm though, symptoms of this usually improve relatively quickly with steroid and sometimes bevacizamab