No hope for a child with medulloblastoma?

User - posted on 08/26/2012 ( 3 moms have responded )

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my niece was diagnosed with medulloblastoma when she was 12 yrs old. She had radiation followed by chemotherapy. She completed her chemo, but a follow up MRI showed that a 'spot' on her spinal images was actually another tumor. They started her on a high dose of chemo, and were waiting to retrieve some of her own stem cells so that they can give it back to her after she completed treatment. She almost died during her first course, which was the lowest one. Her most recent MRI showed two more rumors in her spine, and they are saying there's nothing left to do for her. She's only 15. They just keep saying 'she's going to die from this cancer' which is the most devastating thing to hear about a child. I keep going online, hoping to find answers, but I keep coming up empty handed. Is there anyone else going thru something similar to this, and if so, what options have you been given?

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Lourdes - posted on 09/06/2012

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My son has Pineoblastoma which is very similar to medulloblastoma. After 4 months of being "cancer free" the last MRI showed new tumors in his brain. We are in a clinical trial of Irinotecan and Temozolomide at NYU. This is a clinical trial for recurrences. Please tell your sister not to give up. Chinese herbal medicine, acupuncture, along with the traditional treatment can make a difference. Every day they are coming up with new clinical trials, Memorial Sloan Kettering, Duke University has a dendritic vaccine trial. Don't give up. I am praying for your niece.

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Karen - posted on 12/18/2012

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If you want other options also consider using holistic treatments as well as the orthodox ones. Our son had medullablastoma and although he had surgery and radiation we have also put him on a good diet with no sugar, very little dairy product and more raw foods and some protein such as fish. We have also given him a multivitamin/mineral tablet and make him drink more filtered water. (We used to have to force him to drink water before).
We are using a combination of holistic concepts as well as pharmacy medications for his headaches, when necessary. He also has regular MRI checkups.
If he ever has another problem we are going to send him to the Burzynski clinic in Texas, where they treat brain tumors with a totally different approach and with good success. Their treatment boosts the body and kills the tumor but doesn't make the person sick.

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