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#1181 - 05/21/03 09:03 AM ROSIE-Where are you?
Desiree' Offline
Contributing Member (25+ posts)

Registered: 04/25/03
Posts: 41
Loc: New Jersey
Rosie-
You updated us last week on Heather, and haven't since. We are all concerned and would love to know how she is doing this week. Does she seem to be improving, will she be able to come home soon? Keep in touch at your earliest convenience.
Desiree'

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#1182 - 05/21/03 02:15 PM Re: ROSIE-Where are you?
Desiree' Offline
Contributing Member (25+ posts)

Registered: 04/25/03
Posts: 41
Loc: New Jersey
Okay-Rosie e-mailed me today, here is a copy of what she said. I don't think she'll mind if I share it with you. We are all very concerned about Heather and she is just so busy lately, she has no time to post updates.......

Hi Desiree',

Sorry I didn't reply sooner. I did 2 days and nights in a row at the hospital and got behind on other things. Heather will probably be in the
hospital awhile yet, in a regular room. We were supposed to get the MRI results yesterday, but didn't. Now supposed to have them this AM. Will post on the forum as soon as I have them.

(SO, SOUNDS LIKE ANSWERS ARE SOON TO COME!!!)

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#1183 - 05/22/03 11:37 PM Re: ROSIE-Where are you?
rosie Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/19/02
Posts: 546
Loc: Pennsylvania
Well, we got Heather's MRI results and the conclusion is..........inconclusive!!! They really don't see much difference in the size of the tumor in the spine. And the oropharyngeal tumor was diagnosed from a biopsy, not an MRI. Her first MRI in March was inconclusive because of all the radiation damage, so it's not a good comparison. But, the surgeon says the only feasible explanation for the trismus getting better is that the oropharyngeal tumor is shrinking. And the chemo oncologist also thinks something has to be happening to the tumors. People just don't improve like she has for no reason.

Everyone who has seen her in the last few days is amazed. She looks 100% better. Actually. more like 500% better! She is communicating again and SMILING. She hadn't smiled for about the last 5 weeks. Her tongue had been so swollen it protruded about 2 inches out from her lips. Now it is normal sized again. I wish I could show you some pictures. It is just such an amazing difference.

She is having another chemo treatment tomorrow. She also is taking Vioxx on the chance that the Cox-2 inhibitors are helping. It has been shown to help combat lung cancer, so I asked the docs to add it to the regimen. Who know, maybe it was what made the difference.

Sorry, I just realized how disjointed this post is. Hope you can follow it. The bottom line is that Heather has improved greatly. We, her family and friends, are convinced the tumors are shrinking. So she will continue the chemo for awhile anyway. And we are hopeful that she can come home within a week or two. As long as her blood counts and pressure don't drop real low again and the Zofran continues to control her nausea, she should be okay. At least with her mouth opening up, it won't be life-threatening anymore if she vomits. It was a real concern that she would get it in her lungs and be asphixiated (sp?).

She has been in the hospital 7 weeks now. Between her sister and I, we have been with her round the clock, 24/7. I will be soooooo glad when she comes home.

Anyway, when you consider that just a couple weeks ago, the doctors said they never expected her to leave the hospital, this is truly a miracle. I know it doesn't mean that she will go into a total remission, but just knowing that she will soon be good enough to come home is wonderful. 2 weeks ago, we were discussing life support issues and hospice care. Now it looks like we will have her here with us awhile longer. Who knows, maybe a lot longer.

So, for all of you who are having a rough time right now, take heart. It seems that perhaps miracles really can happen. There is always hope and "it's not over 'til the fat lady sings"!

I'm doing the next 2 nights in the hospital, so I'll check the forum before I leave tomorrow, but then won't be back online til Sunday. Everyone have a nice holiday weekend.

Rainbows & hugs, wink laugh smile cool
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.

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#1184 - 05/22/03 11:42 PM Re: ROSIE-Where are you?
Joanna Offline
Patient Advocate (1000+ posts)

Registered: 03/23/02
Posts: 1140
Loc: Pacific Northwest
Oh, Rosie! How absolutely wonderful. I think you have reported nothing less than a miracle! I know I speak for everyone who has been following Heather's difficult journey when I say FANTASTIC!

Joanna (who will not let down on the positive thoughts)

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