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Does anyone out there have a child or know a child with a brain tumor ???

Does anyone out there have a child or know a child with a brain tumor ???

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My 8 yr. old son was diagnosed in June of this year with a Pontine Glioma or brain stem tumor, high grade. I would appreciate any information or support that anyone could give me. I look forward to hearing from anyone, Misti H.

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Brenda_E_1

My son had this disease and he survived for 2 years after he was diagonosed. A diet with vegetables and fruit it what got him through it. I let them do anything they wanted on him at first thinking it would improve his chances but finally decided to go another route when he only got worse. Herbal therapy and natural foods helped his progress and he lived a lot longer then anyone would have expected.

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Misti_H_1

Hi Brenda, Thanks for replying. How old was your son? Zach doesn't eat anything right now. The smell of food makes him sick. He isn't doing any form of treatment at this time. The only thing he can tolerate is water and not very much. Any suggestions would be greatly appreciated!! Misti

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Kathy_D_1

Have you asked your Dr. about meds to help their appetite? My 15 yr. old daughter was dx with a brain tumor called choroid plexus carcinoma in January 2002 so it's been almost a year & between chemo and radiation she couldn't eat. It's not the same kind of brain tumor you're dealing with but her Dr. put her on a drug called megestrol, it does seem to help her, along with zofran for nausea. There is another drug to help with appetite called marinol (excuse spelling) if the megestrol doesn't help. Good luck.

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Lori_K_4

Godbless you, and I will pray for Zach. My grown brother, 27 years old, has an oligo-astrocytoma brain tumor, it has just been an awful couple of months, and I have 5 children of my own, I can't imagine all that you are going through. Just know, that I am praying for Zach now too. Lori

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Brenda_E_1

Hey, I'm sorry to take so long to answer you questions but I haven't been on the computer for a while. My son was only two years old so there is a big age difference and where I could fall back on baby foods and etc. you probably won't be able to do that with your son. Pediasure mixed with baby cereal and banana's warmed is all I could get my son to eat. Banana's are really high in sugars and protein and the cereal just adds some vitiamins and grains. Ensure could be used in place of Pediasure and it taste a lot better if you make a shake with it maybe with some icecream. Custards and puddings might taste good to him and go down easily. I hope I helped some! Hang in there! Brenda E.

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NancyC_S

If you are still looking for information on brain stem cancer treatments contact me. I can tell you of a Dr. in Houston in clinical trials who is getting some good response with minimal side effects(often no side effects whatsoever).

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Spongebob

Hi, I have a son who was diagnosed in June of 2004. I would like to know anything you might have to share. I hope all is well with your son. Leslie

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Hopefully

Hi Misti, I wanted to let you know of a website written by a young boys mom about her son with a glioblastoma multiforme brain tumor. (the deadliest form) I recently spoke to her on the phone about my mom who was dx four weeks ago with the same tumor. Please visit David's site as it is wonderfully uplifting and inspirational. It is as follows: www.caringbridge.org/fl/david.com My thoughts and prayers are with you. Dana

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Hopefully