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Medulloblastoma

DevsDad
Posts: 6
Joined: Aug 2011

On July 25th, my son Devin was diagnosed with a brain tumor which turns out to be Medulloblastoma. On July 27th, he had brain surgery. There were actually two tumors, and only part of one tumor was removed. One in his brain stem was not touched. August 15, Dev began his treatment. He is getting chemo and then radiation 5 days a week for 6 weeks. Then followup chemo for about a year. Devin is 17. The first week of treatment was very rough, he was throwing up so much that he had to be readmitted to the hospital. But this week he is doing much better. Still, my wife and I are having a hard time adjusting to this new reality. This is all such a shock to me and my family.

connsteele
Posts: 232
Joined: May 2011

So sorry to hear about your son's diagnosis. Our son was dx with a medulloblastoma in 1985, when he was 8 years old. He had surgery and the surgeon said he got "everything he could see" whatever that meant. He too underwent 5 weeks of radiation and chemo (CCNU, prednisone, vincristine). He did really well for 26 years. He did have permanent side effects of the radiation, such as being hypo-pitutary, including growth hormone deficiency. As a result, his adult height is 4'9". He aslo had some mild learning disability. Since your son is older, I'm sure that growth won't be a factor. Our son went on to lead a successful life, including making national honor society in high school and attending college. He lived independently and had a good job until last April, when he was diagnosed with a second primary brain tumor: this time astrocytoma III. The docs are saying that the initial radiation when he was 8 probably caused this second cancer, cause the tumors are located in the cerebellum where he received the highest dose.
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For a long time I felt guilty for agreeing to the radiation when he was 8. But in talking with other docs, they assure me that if he hadn't had it back then, he wouldn't be here today.Plus, today the technology is more advanced and they can target the beams better.

It's a hard decision.I would talk with his radiation doctor about this as I understand that as more people are surviving childhood cancer, they are seeing these secondary cancers more and more.

yes, living and dealing with cancer changes your life. But things do settle down into a "new normal." Just take it one day at a time. I know that is a cliche but it does work. All the best to you and your son.

DevsDad
Posts: 6
Joined: Aug 2011

I understand that life long MRI's will be part of Devin's new normal. I'm sorry to hear about your son's second cancer. This is a big fear for us too, but I'm confident that we made the best choice with aggressive treatment now. Today he feels like he is loosing cognitive abilities, but I'm hoping that is something temporary, due to the meds. He really has a beautiful mind, and we all hope there is little damage to that, but we understand that it is a real possibility.

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