22 year old daughter with Madulloblastoma

I took my daughter to the emergency room on October 4 thinking she just had a bad migraine headache. They did an MRI and found a 5cm tumor in her cerebullum. The next day we drove from Tallahassee to Mayo Clinic in Jacksonville, FL, calling the neurologist on the way. We got there at 9:00 a.m. and by 3:00 p.m. that same day, she was having brain surgery to remove the tumor. It was a four hour surgery, the longest four hours of my life. They got all the tumor, the spinal MRI and spinal tap were clear and the PET scan was clear, thank God. She is now undergoing six weeks of proton radiation at the UF Shands facility in Jacksonville. She has had 2 treatments so far. We bought a wig today because they told us she will lose all her hair in a few weeks. She is a full-time college student and held a full-time job. She is trying very hard to be brave but I know she is scared. They say this type of tumor tends to recur. Normally, this is a childhood tumor and occurs in children under 8. We are trying to navigate our way through this and trying not to read too much of the scary information on the internet about it. Has anyone had a child go through proton radiation? It is fairly new and there are only about 6 centers in the country. It is supposed to be better than traditional radiation treatment with less side effects so we are hopeful.

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  • 18 Year Old Son in the Same Boat...

    Hi,

    I hope that you are still monitoring this thread and that your daughter is doing well. My son was diagnosed with Medulloblastoma last year as well. We are from South Florida and actually went to Duke University, in Durham, NC for 10 months to have him treated. We returned last April. They used a treatment protocol developed specifically by St. Jude for Medulloblastoma and other PNETs.

    Our protocol required full brain and spine radiation, as opposed to more targeted proton radiation. This was done to help reduce the chance of any microscopic tumor development sites that remained unseen on the MRIs. Another factor that we learned about is that the subtype of MB is important in dictating the treatment protocol used. As I'm sure you know by now, there are 7 subtypes of MB, and each one responds a little differently to the various treatment regimens available.

    I hope that all is well, take care,
    Charlie