Nicky’s Life Part 41

October 2010 – Nicky here was almost 14 years old when we went to Minnesota for a counsel for a Bone Marrow Transplant. My darling boy was just out of anesthesia here while we were waiting for our ride to take us back to the hotel. They had just taken some biopsies and did blood work to determine eligibility.  In the end Nicky decided against it for many reasons, too many to enumerate here, but I had to take him there to “explore” and get all the information he needed first hand so he could make an educated decision himself. He was old enough at this point to decide to do or not to do something this invasiveRead More

Personal Decisions

For many years now I often had people that care about Nicky telling me about or asking me why he hasn’t had a Bone Marrow Transplant. While I wrote in the book extensively about Nicky’s decision (because, make no mistake, he is in charge of his body and I’ve told him that since he was old enough to understand), I wanted to delve a little more into it. Nicky has given me a free pass to talk about EB as it pertains to his life long ago, so please do not think I am doing this behind his back. I wouldn’t do that. Never. As soon as I heard that Minnesota started doing the transplants back in… oh… 2007Read More