I'm writing to see if I can get some information from some of you out there that have survived medulloblatoma or have children that have survived.
My son was 10 years old at diagnosis, had a resection, radiation treatment and 8 rounds of chemo. He was not High Risk.
During treatments and for a time after he received help with occupational therapy, speech, and physical therapy. He lost his hearing, mostly high frequencies, but seemed pretty good after we finished his treatments.
He was put on growth hormones, and testosterone at different times.
In the past year and a half, I have watched as my son seems to me to be 'declining' in his overall health. His hearing seems to be getting worse. He was recently seen by an ENT who wants to do surgery because he has developed a 'hole' in his eardrum that is tearing away from the bone.
Last year he weighed 89 lbs but couldn't seem to maintain that weight. We took him to a nutritionist. Finally after working for several months with him and keeping a record of what he was eating she suggested that we see a doctor because she couldn't account for why he wasn't gaining weight with the amount of calories he was eating. He has complained for years that he has trouble swallowing. Tests showed that he has nerve damage on the left side of his throat. We haven't done the GI test or the colonoscopy.
Recently, my son weighed himself to find he's lost weight again. He now weighs 82 lbs. He's tired all the time. And his speech seems as though it gets slurred more lately. (is this because he's tired?? I don't know)
He is also being seen by a therapist for anxiety and depression issues related to having had cancer. (I've thought many times that maybe that was some of the issue associated with him losing weight) But it also seems like he can go forever without eating. He forgets so much lately. My husband and I have to remind him to do basic things...like when he was young. "Did you brush your teeth" (which he hates because his gums bleed) "Don't forget to shave", "Do you have everything you need" as we are getting ready to leave.
Are these things 'normal' after treatments?? I take him in for regular visits to his regular doctor, and they don't seem to be able to do anything to help him. So I am reaching out to you guys to see what some of you might suggest. Any insight in to what might be going on would be helpful. ( I hope I got everything down to help you guys understand our situation, if I've left stuff out, please ask...My head and heart are so full)