Jun 24, 2011 - 7:58 am
My son (GBM dx 4/18/11 at age 34) just finished his 5 week Temodar/radiation regimen. Because he had radiation to that same part of the brain when he was 8 for a medulloblastoma, the doc felt that his brain tissue couldn't tolerate the full standard radiation dose, so he just had 2/3 of the standard dose. While I wish he could have had the full dose to help fight this thing full tilt, I can see that cutting back on the radiation was best as it has been really hard on him re: balance, vision, fine motor, and memory issues. He was put on 24 mg. of Decadron as the doc was thinking that it was radiation-induced swelling and not tumor progression causing this rapid decline, although we won't know for sure until the follow up MRI in three weeks. He's now down to 16 mg Decadron and we're hoping that we can continue weaning him off as it's been hard on him too.
Our main issue for now re: independence. He has been living alone in the Washington DC area for 10 years. We live in western Ohio and have been staying here in his small apartment since his surgery on April 18 as he just can't live alone now (he's also a type 1 diabetic which really complicates things while he's on the Decadron.) He is unable to work and the docs agreed he should apply for social security disability. Our main problem is that he can't live alone(he has no support system here...no family, very introverted, no girlfriend or even close friends.) But we can't move here to DC area to be his caregiver/support system either. So the bottom line as we see it? He has to move back home with us. This is not going over well but we truly can't see an alternative.
His prognosis is poor: the tumors were inoperable and we've been told that treatment will not make them go away, just "slow things down." Living together in this small apartment under all this stress, with no support system for ourselves, is taking a toll on myself and my husband's relationship as well. With our son's sick leave running out, and only income disability, the cost of renting in DC area in prohibitive. Both my husband and I are retired and we can't afford to rent here either. I don't think our son realizes that things aren't going to get better and that he just can't live alone anymore. This is as hard to handle as the diagnosis, both for him and us.
We're hoping to make the move after the MRI and before he starts the 5/23 Temodar regimen.