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8-year-old Chinese boy diagnosed with rare brain cancer, parents seek treatment experience

miduo
miduo CSN Member Posts: 1 Member
in Childhood Cancers #1

Hello everyone, I am the father of an 8-year-old boy from China. My son suffered an epileptic seizure in August this year and was diagnosed with a brain tumor.

Puncture biopsy and craniotomy were performed, and the pathological diagnosis was polymorphic xanthoastrocytoma grade 2-3 (APXA), which is a high-grade glioma. Currently, I am undergoing radiation and chemotherapy.

Because this type of brain tumor is so rare, there is no subsequent standard treatment according to the guidelines.

Doctors told me there was no cure and that I had a limited time to live. I'm so sad to find this site. I wonder if anyone with the same experience can share some treatment experience. Thank you so much!

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  • Time_Travelling_mama
    Time_Travelling_mama CSN Member Posts: 4 *
    #2

    my daughter was diagnosed with Diffuse intrinsic pontine glioma in 2011 when she was 24mths old, this diagnoses was based on imaging alone as it affects the brain stem. she was treated for this with all the radiation a human is allowed and this was meant to give her 9 months to live, they were very sure of this so we never considered the side effects of the treatment as she wasn't going to live to see them.

    she has lived for 15 years disease free, but the everyday struggles from that much radiation to the brainstem have been a heavy guilt that I carry….especially since she never had dipg in the first place. it most likely was a low grade curable brain stem lesion that was hit with the most aggresive treatment for the something she didn't have. 2 weeks ago on her 17th birthday she was diagnosed with a glioblastoma bigger and deeper in the brainstem likely due to the 59gy of radiation that was given to her little 2 year old brainstem and there is no treatment options left and I cant ask that of her again, . don't settle for what 1 Dr says, get a second opinion search for new treatments, we have had great results from CBD to relieve symptoms of seizures and double vision and being grumpy from steroids.

    I definitely know that heavy gut wrenching feeling u have every moment your awake. Iv started to think that's she was always just to good and pure for this cruel world and she is lucky to be going somewhere where she is free and healthy and happy :(

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