I’m like Jim C, I wish we lived closer so you and Norb have your syndrome family to lean on and talk to. I am one of the “oldies” from the old forum who still comes here.
Don’t hold anything back when you talk to Norb’s doctor, let him know the big things going on as well as the very small things that don’t seem important. Find out what treatments/medications/options can be tried. Find out if cytoxan can be tried. Some of our forum members have had great success with stem cell, but I believe you have to have no other health issues.
Your family is here for you to talk to. Can you feel the hugs I’m sending!