Michelle,

Cati is 7. She was 6 when Heather died. Please don't apologize for causing me pain. It is my choice to continue following the forum. Sometimes I stay away for awhile because it is painful, but I always find myself wondering how everyone is doing, so I come back.

Spinal collapse is my wording. The term may not be medically correct. The tumor actually destroyed Heather's 5th vertebrae. With C-5 gone, her spine started to bend (or collapse) and the spinal cord was pinched between C-4 and C-6. That was what caused Heather the terrible pain that the morphine couldn't control. It also caused the paralysis of her arms. I'm sorry I even mentioned it, because if Marcy's tumors continue to grow, I would expect the same thing might happen to her. Although I don't know what areas C-1 and C-2 control. C-5 obviously affects the arms.

I asked if Marcy was on chemo, because sometimes it can slow or temporarily halt the tumor growth. The Irinotecan seemed to halt the growth of Heather's spinal tumor, at least for a few months. I think it was paired with Docetaxol. At this point, though, it would only be a palliative measure. It won't be a cure. And with all the discomfort that chemo causes with nausea and such, it may not be worth it.

I don't know how much you and Marcy have discussed and it is certainly not a pleasant task, but you need to know her end-of-life wishes. Not just the big issues like whether or not to go on life support, but other things as well. For example, there were some personal possessions that Heather wanted to go to certain of her friends. When she mentioned this to her husband in May, though, he couldn't handle dealing with it and for some reason, she didn't tell me or her sister. Anyway, when she started improving, I guess she thought it not important anymore. Then she started to get worse and by the time she finally accepted that she wouldn't get better, she was so weak and in so much pain that it was hard for her to write much (and she couldn't talk) and she just didn't want to bother. It's not a real big deal, but we will always wonder what her wishes were and we are sorry we can't carry them out. It will be extremely painful, but you really should discuss such things with Marcy while you can.

Take care,
Rosie

Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.