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'

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!!!)

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,
Rosie

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)

Rosie, that is truly WONDERFUL news!!! I am so thankful and glad that Heather seems to be doing better. I know this has got to be such a blessing for you and your family, and something that was most desperately needed. The fact that Heather has improved 100% (or 500% as you put it) is truly a miracle! Thank God that she is (hopefully) on her way home where she can make continued and steady progress. Know that my thoughts and prayers are with you both! Take care and do keep us posted whenever you can.

Rosie,

Boy did you make my day!!! It just puts sunshine in our lives to hear good news about Heather. When I say our I mean my husband and me. I've kept him in the loop every step of the way.

Please let Heather know how happy we are for all of you...God bless.

Dinah

Oh Rosie,

You know how delighted I am to hear of Heather's improvement. It is truly a miracle and we all hope she continues to improve. This news just made my day.

Take care,
Eileen

Dear Rosie,

You are so right....miracles happen! Thank you so much for sharing your's and Heather's.

Love,
Mandi

Hi again,

For those of you who might be interested, I've posted some pictures of Heather at various stages of her journey. I've only done a few and I hope you can access them. I don't do pictures on the internet often, usually just those I post for my ebay auctions. But try this link - http://home.earthlink.net/~vidwiz2000/_wsn/page3.html Hopefully it will get you to my page. I'm not the best at taking and editing digital pics, so the quality isn't great, but they'll do for now.

The top left pic is the week before she went back in the hospital, right before we went to Johns Hopkins on April 3rd. Top right is how she was positioned for the best part of 5 weeks. Actually, she was leaning to the side a little. Usually she was straight forward, but you get the idea.

Next row is showing how swollen her tongue and face was. The face swelling had been worse. This was a couple days after it started to go down in her face, but the tongue hadn't changed yet. On the right was when the tongue swelling was decreasing.

Below that the tongue was almost normal size again. I don't have any yet showing that the tongue is totally back inside her mouth. You can ignore the bottom right pic. It's an old ebay one. I'd like to get more pics up, but it probably won't be anytime soon.

Rainbows & hugs,
Rosie

Rosie, I hardly know what to say. Your poor, poor daughter! You described her situation, but the pictures are SO much worse. It truly is a miracle that she can now sit up and that the swelling has receded. I am praying that the improvement continutes. Hugs to both of you!
Joanna