Michelle...don't beat yourself up about asking Jesse to try the Ethyol. All we can do is ask questions and make the best decision we can with what info we're given. When your told that this drug has the possibly of lessening the side affects of the treatment and can help maintain a better quality of life long term, of course you want to try it. I did the same thing with Jimmy. It was given to him both ways...IV and sub-cu. His side affects were the same, either way it was administered. It gave him so such excruciating bone pain, fever, and violent chills that I would lay on top of him and hold him as tightly as I could just to try to stop the shaking. This would go on solid for 12+ hours. He was already on the feeding tube when they started giving him the Ethyol but he couldn't tolerate being fed. Jimmy took it daily for about a week inspite of the side affects. But at the end of that week he said stop because he couldn't stand it any more. The doctors gently pushed him to keep taking it but he wouldn't. When he stopped taking it, all those side affects ended almost immediately and didn't return. In the group of people we met while going thru treatment, we only met one person out of about 6 that could take it. Is Jesse still taking it?

How is he doing with PEG tube? That was another hard "pill" for Jimmy to swallow. He tried to eat mush as long as he could and wouldn't feed thru the tube. But, he kept losing too much weight. The doctors had to get a littel stern with him about using the PEG. I'm not really sure why using this was such an issue for him. I think having to use it was like "giving in" to him and made him feel like he was losing more and more control over his life. But in my mind, the PEG tube was the best thing ever as far as nutrition goes. At least with it, I new he was getting the calories, vitamins, etc. he needed. We did have a lot of trouble with infections due to the tube. They finally had to replace it because the one he had was "defected." I don't know if this is normal or not. We don't know anyone else that had a tube.

As far as the comment you made about this not being the worse part yet...things will worsen but they will do so slowly. And as things do worsen, there will be people around you that will help you cope with each step. At least for us, the progression was slow (except for the Ethyol). And then after treatment, things will slowing get better. Jimmy finished treatment Nov21. He still isn't back 100%, but he makes improvments each week. And when treatment is over, Jesse will too!

Hang in there girlfriend! Thinking of you