Hi guys,

I've been putting this off, but since some of you have been asking, here goes....... Unfortunately, Heather is not doing well. We thought we were seeing small signs of progress, but some of what we thought was good, the docs are seeing just the opposite.

For example, Heather hasn't been able to lay flat on her back for quite some time now because it seems to restrict her breathing. Her position 99% of the time over the last month has been sitting up and leaning forward, almost doubled over. The last 2 days, she has actually been lying back with the bed elevated just a bit and a couple pillows under her head. So she is not quite flat, but close to it. We thought that was good because she can now breathe easily in this position where before she couldn't. We thought maybe that meant the tumors were shrinking and relieving the pressure on her airway. The doctors, however, think it means she is getting weaker and just can't hold herself upright anymore. But she still can get out of bed by herself to use the toilet. If she was weaker, shouldn't she have more trouble when standing up? confused

She is continuing chemo, but so far, there is not enough change to be able to say it is working. And her white cell counts have dropped below 1000. Her blood pressure started dropping , just after she started laying back flatter on the bed. The doctor sees no connection though, says laying flat is actually better for her blood pressure. And her oxygen level is down.

They are pressuring her to decide if she wants to go on life support if something bad happens, such as a blood clot, heart stopping, etc. She wants to, but they don't think she should because then her husband will have to make the decision when to take her off. They don't have any hope of her getting better and are only doing the chemo to appease us. They never did think it would help. We should have changed doctors months ago, but just never thought things would ever get this bad. How naive we were.

So, that's where we are. At the end of a very tautly stretched rope. I wish I had better news and we are still hoping for a miracle, but so far all avenues I've tried have been dead ends. I've talked to people at MD Anderson and the James Center and Brian has been trying his best to come up with something, but all to no avail.

All your thoughts and prayers for Heather are appreciated, but please don't anyone tell me what a great mother and caregiver I am. Right now, I'm just not in the mood to hear it. Hoping my next post will be better. And for all of you, never give up the battle. Keep fighting and WINNING!

Rainbows & hugs, wink
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.