Brain / CNS Tumors Support Group

My son was discovered to have multiple subependymomas in 2004. He was having headaches and went in because he thought they were migraines. An immediate CT scan - followed by immediate MRI showed hydrocephalus and several tumors. He had a craniotomy within a week which we understood at the time "debulked" the majority of the tumor and installed a shunt to continue to drain spinal fluid, because part of the normal path for the brain fluid circulation is blocked.. Luckily none of this left side effects. He had another MRI 6 months later, and then one a year after that. By now it was 2006 and the MRI showed that the largest tumor had tripled in size. At this point, he got several opinions and ended up at Mayo clinic. The doctors did not (and still do not) understand the sudden, rapid growth, becase subependymomas are supposedly extremely slow growing. He again had surgery with no lasting side effects. However, an MRI after all that debulking revealed a tumor that had been "hiding" (how can it hide from an MRI?) and in inoperable. Follow up MRIs over the next few months showed increasing size in that tumor and also "seeding" of new tumors (these are all contained within the lateral ventricles in is brain. So he then had "focused radiation on the affected areas of the brain. Thie took 5 1/2 weeks during which he needed to stay in Rochester because there were treatments every weekday. He came home on weekends and several relatives and friends went to spend time a day or two each week to help him through

His MRIs every 3 months after that continued to show tiny amoutns of growth until the one last spring. We finally heard "no change". That was good enough. His next visit to Mayo is in August 21. I've gotten fairly good at putting this worry on a shelf for period of time. He is doing great and has absolutely no side effects. However - I always start getting nervous about a month before his visits to Mayo knowing that we may walk in thinking everything is fine and walk out with devastating news, One teeny, tiny new tumor could change the direction of this life.

I am thankful at all the good outcomes he's had so far. He has a very positive attitude which is difficult for me because I'm a chronic, compulsive worrier. I have chronic pain and depression myself which complicates things for me. He and I are both single. He's always here when I need him and I try to be the strong, supportive mom that he needs. His father is not helpful, in fact, he and his wife bring more stress to the situation as soon as they get involved.

I want so much for these tumors to shrink from all that radiation (the Neurology oncologist he sees is wonderful, as so is the readiation oncologist). It's very hard to go to a place like that and hear "we've not really dealt with this type of tumor that acted like this (they've don multiple lab studies and taken his case to a tumor board) and needed to help someone live a long, happy life. These tumors are usually found in old age and are so slow growing that something else will kill the patient long before the tumor would. Their goal is to giving him 40+ more years of quality life. (he's 37 now). '

We're not a particlarly religious family, but we need positive thoughts and prayer sent our way - healing for him and strength for me to support him.
Posted on 07/26/09, 01:07 pm