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Oligodendroglioma in 10 year old

Alexsadvocate
Posts: 1
Joined: May 2010

My 10 year old son Alex, has been diagnosed as having an oligodendroglioma originating from his hypothalamus this week. The biopsy has narrowed things down but now there is a recommendation of a partial resection and chemo by his medical team since total resection would be impossible due to the location of the tumor.

I need to know of any other parents that have had children with this type of brain tumor or any resources or advice at all to help me to deal with the overwhelming amount of information and choices being presented to me now. Thanks for any replies.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

Hi,
My 12 year old daughter was diagnosed with anaplastic astrocytoma grade 3 in March of this year. She has had 2 brain surgeries to remove her tumor. I know that it is a different diagnosis but when it comes to our kids we want only the best care for them. If you have doubts about what your sons Dr.'s are saying it's ok to get a second opinion. It's hard to put our childrens lives in the hands of others. I have done alot of research on the computer and have found that there are many different clinical trials being done. I found that the best way to handle this whole situation is to keep ALL records of my daughters care and asked alot of questions. Sometimes I think that I drive my daughters Dr.'s crazy because I always have a list of questions with me. I ask the same questions over and over sometimes to see if I get the same answer. You are the only person who can speak for your child, so the more you know, the better off you are, even if knowing scares you. My daughter is having 7 weeks of radiation and taking oral chemo now and then she will have 1 month off and then she will start a higher dose of oral chemo 5 days on and 23 days off for 1 year. It's a long road and our lives will never be the same as she will always need to monitor this for the rest of her life. Try to keep positive and I'm here if you want to talk.

Fiona and Brad
Posts: 8
Joined: Oct 2011

Hi there, I read your post today regarding your son with anOligodendroglioma. My son also was dx with an Oligo 4 years ago when he was 8yrs old. He had a total resection with no chemo or radiation and is dur for his next MRI follow up in approx 2 weeks (fingers crossed). Kids with Oligo's are few are far between and I've been searching for someone else who has gone through this hell as well. I know other parents out there have children with cancer but it's comforting being able to know that there is someone else out there with the same kind of dx as your own child. Someone who has the same worries and questions about how these kind of tumours grow etc... I hope your son is doing well and wish you both the very best.
Fiona and Brad

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