Hi Sorry to hear about your daughter she seems to have a rough go of this. I know what you are going through somewhat because my husband has had Hairy Black Tongue, Canadidta, and they gave the drug that Brian suggested and are still giving it to him along with Mircle Wash. It burns and his throat hurts all the time it seems like when we clear up one bout he gets it again. Its like and on going with his mouth since the treatments. When he went to the hospital with last week they gave him massive doses of the diflucan and a antibiotic in IVs that helped the bacterial part but it has a ways to go with the fungus. I think its a problem that is going to always exist. Hope she feels better soon Bobbie

Thank you Bobbie, WZ, Brian, Eileen & everyone else!

The candida seems to be getting under control. And, although it probably did cause some of the nausea, we think they have finally found the reason for the vomiting.

Saw the doc yesterday & he ordered another test. A VERY long day - left the house @ 9:50 AM & didn't return until 4 PM! BUT the test showed that her stomach wasn't emptying properly. Some of the barium they put in the PEG tube went to the top of her stomach and just sort of hung there. That's why she kept throwing up.

They gave her a medication to help her stomach empty. So, unless they have missed something else, she should finally be able to get some proper nutrition and start the healing process. She does have more swelling than before and lots of pain along her jaw where it was cut and is having a harder time swallowing, so they are a little concerned about a deep infection and necrosis of the bone. She is on an antibiotic and, hopefully, getting some good nutrition will help clear these things up, but she will be monitored more closely now.

Thank you all for your concern and all the information you have offered.

Rosemary

Yeah Rosie,

I am so glad you persued this and finally found out what was wrong.

Here's to the healing process!!!!

Take care,
Dinah

Hi Dinah,

Thanks for the good wishes. It means a lot to hear from all you great people who have "been there, done that". No one else really seems to understand. We had a birthday party for Heather last Sunday. Not a very happy affair since she was still really sick. But she appreciated it and it was very small, just a few family members, so she just stayed on the sofa and relaxed.

Anyway, since I see her every day, I forget how bad she looks to other people that don't see her as often. A couple days after the party, my mother-in-law called and wondered if she should send her preacher out to see Heather. I guess Heather looked so weak and sick that she thought maybe the end was near. That was a real shocker! She might be having a lot of problems right now, but this fight is far from being over!

That made me realize again how valuable this forum is for patients and caregivers. I feel so sad for people that don't have this kind of support. I know I would be lost without it. Cheers to everyone who participates and especially to Brian!!!.

Thanks!
Rosie

Hi Rosie, your experience brings me back to the time when I was hospitalized during treatment. Relatives who visited me shed tears when seeing me so skinny and weak on the bed. My neck was all burned and bruised. But with the painkillers, in fact I didn't feel pain. I was only too tired to talk. They exaggerated my pain and suffering. Don't bother about what other people think about Heather. The most important is you stay with her, support and encourage her.She is so young and can definitely fight her battle through and be the winner in the end. I absolutely agree that very often it is the caregiver who suffers more. My husband's daily routine was seriously upset by me during my first several months of ordeal. For many times he wept! Rosie, a rainbow is awaiting you and your daughter after the thunderstorm. Be strong!

Karen, stage 4 tonsil cancer diagnosed in 9/01.

Thanks Karen,

We are hanging in there and are anxiously awaiting that rainbow. It can't come too soon! We are having a very hard winter in PA this year. Lots of cold & snow, sort of gloomy like Heather's treatment. Maybe the rainbow will coincide with Spring, an early one if we're lucky!
Thanks to everyone for their good thoughts and prayers.

Rosie

Hey Rosie,

You know when I was at my worst no one ever said anything to my face, but as you get better people start telling you how good you look!!! And that's when you still look bad. So, it makes you wonder how bad you really looked.

Heather will start getting stronger and better now, thank goodness you finally found out what was wrong. It will be gradual I'm sure and you may not notice right away because you see her everyday. But it will happen.

Give her our best and you keep us posted.
Dinah

Hi Dinah,

Heather was able to take 2 full cans of Ensure Plus today, 1/2 can at a time spaced out through the day. I'm sure some people are probably thinking "only 2 cans?", but this is the most nutrition she has had in almost 3 weeks. It all stayed down, no more vomiting! I'm sure it will take time for her to feel better, but at least we are back on the right track.

We saw the radiation onc. today and he figures she is about 3 weeks behind in the healing process. He also made the remark that, although her case is the worst he has seen, young people usually do have a rougher time with RAD. He's not sure why, but it seems that the RAD hits them harder. So I wonder why we were told in the beginning that since she was young and otherwise healthy, she could handle the full dose of RAD, chemo, etc. It seems like it is just the opposite.

Of course, she had to take the full dose of RAD and the aggressive surgery in order to have a fighting chance, but her age did not necessarily give her an advantage. Oh well, I guess it doesn't really matter. It is just interesting the things the docs tell you AFTER you're done.

Thanks again for all the good wishes. And we wish an easier recovery for all of you that are still in treatment!
Rosie

Hi Rosie. That's great news that Heather has been finally getting some good nutrition albeit a few cans of nutrition shakes - but hey, that's a whole lot better than before!! That is quite an accomplishment. I remember when my husband could only drink milk mixed with Ovaltine or chocolate syrup (choc. milk) and not much else - not even the shakes.....it took some time, and he did have some nausea and a few bouts of vomiting - but things did start picking up eventually. Please give Heather all our best wishes and tell her we are in her corner rooting for her!

Hi Rosie, Glad to know Heather is making progress on her diet. I am not sure how far your oncologist is true about radiation hitting young people most. At least he shouldn't say that Heather's case is the worst he has seen. This upsets people around.I think your previous doctor is right that not everyone can stand a full dose of radiation and people at a younger age can stand better. This was what I was told when given a full dose of radiation that if I had been 10 years older, I wouldn't have such treatment. ( I am in my 40s)Rosie, you must keep the strong faith that since Heather is young, she can certainly recover gradually. Don't compare with those who had a speedy recovery. Everyone is unique. Take care.
Karen.