Craig, this is a tough situation you are in. I personally would be having a fit, because one of my greatest fears is the fear of the unknown. We all have different fears, but your situation is so baffling! I am sure you get really exhausted with it all. I am aware you do a lot of reading and research, and if I were you I would keep it up. You never know what might be brought up that might, if mentioned, help the Doctors to go in the right direction. I think sometime it is just getting to the right person who can put everything together, and I am hoping they will be able to do that for you at Duke.

I guess sometime we just keep on keeping on, and you are doing a good job of doing that. We will all be interested to know how this comes out for you. Naturally, the most wonderful thing would be if they could find something that could be completely cured and at least halted where it is.

Lots of luck,
Virginia