Medulloblastoma

Pamela - posted on 12/02/2009 ( 12 moms have responded )

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My son was diagnosed with Dissiminated Medulloblastoma at the age of 3. He went through 7 rounds of "kitchen sink" chemo as they like to call it, and one intense round of chemo. He also had 6 weeks of radiation. They could never tell me he was truely cancer free due to some shadowy areas on the MRI's but the shadowy area never grew or changed. However, after a year of no visible tumor 2 small tumors have returned and i was told he really didn't have any options this time around. Which from the research i did while he was first diagnosed pretty much told me this before, actually hearing it was devestating. They had an option of anti-tumor medications that could prolong his life by a few months, but would make him sick for the duration of the time i have left with him..and i opted no on doing it. Right now the tumors are still too small to really cause any side effects and he is just a happy little boy. I'm trying to take things day by day. My point to posting this is not for sympathy really, but just to see if there is anyone else going through this that may have a child with the same type of brain tumor as my son. I have yet to come across another parent with a child fighting the same tumor. Not only just this specific brain tumor though...any parent that has been told their child has no hope for defeating the return of cancer this time would be helpful.

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Ella - posted on 11/25/2013

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Hi there my message is never to give up hope. My daughter died 4 months ago she had pineoblastoma I watched her journey and the only thing I regret is letting her do chemotherapy, I turned to natural medicine which is the alkaline diet that dr bernado majalca used to save a little girl called Josie. My daughter was on herbs also by a Chinese herbalist, I believe it was working but the body can only take so much from what chemo does to your kids. I bought 6months extra time with me than my oncologists saying she would not last the week. Go with what you believe at the end of the day alternative medicine is all natural unlike chemo drugs. I'm a big believer that cancer is cureable only you need loads of money to be cured.

User - posted on 08/26/2012

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Pamela, 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 will pray for your son while I pray for my niece. I keep going online, hoping to find answers, but I keep coming up empty handed. I wish you & your son the best of luck.

Karen - posted on 12/18/2012

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My son had medullablastoma and so far he is ok after surgery and radiation but if it ever comes back I am going to take him to Dr Burzynski's clinic in Texas. He seems to have had great success with brain tumors using therapies other than radiation and chemotherapy. The only reason we didn't consider using this in the first instance was because we live in Australia and by the time my son was diagnosed, he had too much brain swelling to travel and we had to make instant decisions at the time.

Melina - posted on 12/04/2009

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Pamela, please don't give up! My son also had medullo. I am part of several support groups, one through Yahoo (Pediatric Brain Tumors) and another through ACOR (PNET/Medulloblastoma). I know LOTS of relapsed kids who have survived. Please join one of these groups, the knowledge of these parents is 1 millionX what I have learned from dr's. Please email me if you want to talk!!!!



Melina m/o Levi www.caringbridge.org/visit/levimayo

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Sarah - posted on 08/23/2014

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Donna... My daughter had the same post op experience called posterior fossa syndrome. She got most of her normal strength back over a couple years. With treatment it may not come back. Unfortunately my daughters medullo has just returned and doctors prognosis is poor.

Donna - posted on 06/11/2014

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My 4 year old grandson was just diagnosed with Stage IV Medulloblastoma last week on Tuesday. I am absolutely devastated. He had his surgery a week a go today and he is basically paralyzed in a wheelchair. He can barely hold his head up himself, cant walk, cant stand without the help of bars, cant move his right arm and his right eye is turned in and he can't see correctly out of it. He was so full of rambunctiousness just one week ago and today he cries everynight because he wants to stand up and can't. It is a heartbreaking cancer that no child or parent should have to face I am desperate to find some positive news on this cancer - but I have been unable to find anything that gives me much hope. I am just sick. I can't sleep, can't eat, can't really function. I can't hardly stand to see him this way. I've never been so heartsick and devastated in my entire life.

Vanessa - posted on 03/25/2014

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My daughter was diagnosed with stage 4 Medulloblastoma on January 16, 2013. She went through 33 treatments of full cranial & spinal radiation. That is the most a human body can handle. Followed by 8 rounds of intense chemotherapy. She had 3 types of chemo but the back bone chemo was really affecting her hearing so she only received 4 of those. I chose to stop that chemo because her hearing is very important because the cancer took her eyesight. She is legally blind & we discussed it with her. I am looking for other moms to talk with.

Lisa Dawn - posted on 03/09/2014

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just wanted to talk to other mom's who have lost children from medulloblastoma..

Lisa Dawn - posted on 03/09/2014

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trying to find more mom's who have had this diagnosis's and wanting to talk

Lourdes - posted on 09/06/2012

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Clinical trials. Dendritic vaccines, metronomic chemotherapy, there is so much out there. I have a beautiful 9 yr. old son with Pineoblastoma, the prognosis is grim, this is a recurrence but I will not stop fighting. Memorial Sloan, St. Jude, NYU, Columbia Presbyterian, I don't know where you are located, please let me know how I can help.

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