Michele, Here is something I have done since we first started battling this disease a year ago. I have a notebook beside me all the time. I write down every question that pops in my head under the Doc's name I want to answer the question. I take this note book to every appointment we have and ask the questions and write down their answers. They have gotten used to me during this past year and come in asking to see my list of questions. These questions are organized and pertain to a specific event in John's treatment or pain or problem he is having. And they may be about something I have read here. And I always get an answer[which I sometimes argue with] Remember, the people treating Jesse have not been through this personally, so you can push for answers, demand help and attention when you need it and generally be a pain in the neck if you have to be. I think you should express to these Docs that you are feeling fragmented and not well informed about Jesse's treatment- maybe ask for a meeting with everyone involved. It's really gonna be tough for awhile and I hope you can stay strong. Just remember your goal is to get him well. Amy