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holly56 (@holly56)

Embryonal Brain tumor

Brain Tumor | Last Active: Apr 1, 2019 | Replies (10)

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@cads

Hi!
Our daughter was diagnosed with a rare (Craniopharyngioma) brain tumor at 27 yrs, and is post craniotomy (4yrs) and Proton Beam radiation.
As grateful as we are for the excellent care and treatment she’s received since diagnosis, it’s not easy seeing your child, regardless of age, go through the changes and loss of dreams due to brain tumor. In fact, it sucks!
I’m glad you found this Connection. If you live in MN, the Brains Together For A Cure support group for patients and caregivers meets monthly at Hope Lodge in Rochester. It’s a great group of welcoming, experienced people and physicians.

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Replies to "Hi! Our daughter was diagnosed with a rare (Craniopharyngioma) brain tumor at 27 yrs, and is..."

Thank you for sharing your story. He has been in hospital 37 days and 3 surgeries. I am not sure if he will be able to withstand the 4-6 weeks of radiation treatment but it is our only hope. This tumor is so aggressive it spread throughout his brain and into his spinal cord. So sorry to hear about your daughter. How is she doing now? I do not know if my son will make it, he is fighting like the soldier he is. He will need extensive rehab as the first surgery left his whole right side immobile and significant speech difficulty.