Amy C and Garron, you've got my prayers, and the mouth pain could be thrush [which is really hard to control]. Hopefully your trip to Houston will find the reason and get it fixed. Glad to hear he has been able to eat some tho. Don't let him get dehydrated! Push those liquids by peg if necessary. By the way, we probably had 4 or 5 mouth rinses on the shelf , any of which might work on alternate days, so don't quit experimenting. Amy in the Ozarks

It is definitely a struggle! I had increased mouth pain at 6 weeks, and found I had thrush. It just adds more pain to the mixture. I took meds to treat this, but still have pain in my throat.

I see a nutritionist to help devise some things that I can tolerate eating, as it is important to regain swallowing capability. I too have the peg tube so that I can get enough nutrition. I feel like an infant coming off the bottle! The struggle goes on, and it is a long process.

I didn't eat any solid food for about 4 1/2 months. I lived on Ensure and some weight gain powder (mixed with milk) I got at the health food store. Didn't have a PEG, either, so nutrition was a real struggle everyday. Between the sore throat, sore mouth, nausea and constipation I developed an aversion to food. As time went on, however, my sense of smell improved and I began experiencing hunger. Little by little I tried different foods. I managed to eat some, but not most, of them. Keep encouraging him, and don't get discouraged yourself. He will come around and level off at the 'new normal'. Just have him make sure he gets enough nutrition and hydration everyday in the meantime.

Hello everyone:

I first have to say that we got good news this week at MD for Garron's 6 weeks checkup. CAT showed complete response to treatment. We are thrilled with the news. However, I am somewhat concerned that his CAT was done with partial contrast. For some reason every time Garron has a CT he vomits 1/2 the contrast. Everyone is a bit unsure as to why this happens. They premedicated him with Zofran and Ativan, but he still got sick. Nonetheless, the radiologist felt that the scan was clear. Chest x-ray was also clear. Labs were back in check.

As far as eating goes, it is hit and miss at this point - mostly miss. He had again started trying some soft foods, until he got sick during his CT. It aggravated his throat. Not to mention the hose up the nose thing and the fingers down the throat thing. He was not a happy camper with all that stuff. They told him at MD this week they wanted him to sit at the table 3 times a day and try to eat something. They suggested drinking the Boost Plus instead of putting it down the PEG. Only use the PEG at this point for supplementing calories and hydration. I am not quite sure how this is going to play out. I know, be patient right

Amy C. and Garron

well yeah but that's always easier said than done. Drinking the formula - and blending it into a smoothie with ice cream - worked well for Jack. It's a process that gets better over time. I think Jack also had success with scrambled eggs, and pureed dinty moore beef stew. Soups work too. I do remember that he could only tolerate a few bites of things in the beginning and it took him a long time to even do that. so small frequent trys could be better.

When Garron is up to it find one of those all you can eat buffets and experiment.

Great news on the scan, that's very encouraging.

Regards JoAnne

Thanks JoAnne. I think I am probably the most impatient person in the world and Garron is no different. However, I am becoming much more patient. The challenging thing for me is Garron is a finicky eater, even before his diagnosis and treatment and is no different now. He seems to turn his nose up at anything soft. I have very patiently asked him to please be open to try things that maybe he can tolerate and not things he would like to eat but knows he can't. He wants pizza, hamburger, steak, etc. A little over achieving. I understand it has been a long time since he has been able to eat the things he really likes, but I am having a hard time pursuding him to give other things a go until he can tolerate the things he really likes. I am afraid he will keep waiting to eat what he likes and will get in trouble with the swallowing situation. I have beef stew cooking now. I hope he will give it a try.

Thanks again,
Amy C. and Garron

amy c, Is Garron doing mouth stretching exercises? Hopefully someone has explained to him the the steak, hamburgers, etc. will require his mouth to open wide Since he has the peg to get nutrition down, he can turn up his nose at the soft foods to eat, but, if he doesn't do the stretching exercises, he may be in big trouble when he does feel like eating his favorites again. Glad to hear his tests were good. Amy in the Ozarks

Amen to what Amy has just posted above! While a whole team was working to successfully eradicate the cancer. nobody thought to explain trismus. As a result, any hamburger I eat is with a knife and fork. While there is a device to help open one's mouth wider (Therabite) popsicle sticks or tongue depressors will do it too, even your fingers. Just a little reminder from the Voice of Experience to keep opening your mouth wide.