r/pediatriccancer • u/Mamazizi85 • May 03 '26

6 year old daughter diagnosed with pineoblastoma M3

my 6 year old daughter was diagnosed with a pineoblastoma that went to spinal fluid 2 weeks ago and underwent surgery to remove the tumor but unfortunately they couldn’t remove much of it due to it being very vascular. they removed enough for biopsy and installed a temporary shunt because she had a lot of fluid built up. Once biopsy was confirmed they installed a permanent shunt but unfortunately she experienced vision loss which was declining before the surgeries but now the vision is gone. I appreciate any information you can share about it this tumor and would love to hear from others about their experience with the tumor and the vision loss. thank you!

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u/CARRYINGJUNE May 04 '26

I don’t know anything about this type of cancer. My daughter had neuroblastoma. Here are a couple of resources: rettsroost.org and Carryingjune.org

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u/Mamazizi85 2d ago

Thank you very much for the info shared!

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u/CARRYINGJUNE May 04 '26

I’m so sorry. I have more resources for you. There are also facebook groups. Sending you so much love and strength. You’re not alone.

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u/Mamazizi85 2d ago

Thank you I joined the Facebook groups and hopefully others can share their experiences.

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u/bigbadmadd 28d ago

I have only heard of 1 case of this at our clinic, I am so sorry. May I ask where you are being treated? I don’t know much about it, but I’ve been in the pediatric cancer world for over a year now & I will say please get her to a specialized hospital like Memorial Sloan Kettering for treatment. They are awesome at brain tumors. I know that this is overwhelming, but knowing what I have seen over the past year, that is where I would take my child for any brain tumor!

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u/Mamazizi85 2d ago

Thank you for responding! She is being treated at Children National in DC.