Washington Here We Come

Well we are heading to Washington. It has been a questionable week of trying to figure out what will be our next step for Simons failing donor cells and what we should do. After talking with our immunologist and another doctor at the National Institute of Health, Dr. Orange at CHOP (Philadelphia Childrens HOspital) and our doctors at Childrens, Dave and I feel we owe it to Simon to make the trip out to Washington to the NIH to have the "experts" of NEMO look at Simon, his engraftment and any other complicated testing they can do at the NIH to help us decided how to proceed with this next stage of Simons treatment. Our doctors feel another transplant is inevitable with the donor cells continuing to drop. We are extremely heartbroken with the thought of having to put Simon, Marriana and our whole family through this again. With knowing what we are in for this time it makes it harder to think of the time in the hospital and the side affects that we incurred (some of which were very scary) with the hope it will work better. That is why we are heading to NIH to get all the information we possibly can to make an educated and safe decision for Simon. I will keep you all posted as to when we leave. We are waiting on paperwork and the word that they will fly us out there. Please continue to pray for Simon & Marriana to be safe and healthy through all of this and for Dave and I to find the strength to endure this once again. God Bless. Tracy and David. Please also pray for a friend of ours who's son is going through an equally difficult medical procedure. Thanks.