It's a marathon, not a sprint. We've heard those words a lot since Georgia was diagnosed and I am starting to understand why. It feels like we've been in battle for a long time but in reality we've barely begun. I am so thankful to be home from the hospital but feel like we are constantly going back there... last Monday was a clinic appointment, Wednesday an MRI and bone aspirate and Friday a consult with the orthopedic surgeon. This week we've been in to learn how to do dressing changes for her line and had a clinic appointment and found out today that Georgia is going to have her third biopsy tomorrow at 7pm.. we were an add on. Poor little bug has to stop eating at 11am tomorrow.
The biopsy is being done to (hopefully) determine that there are only dead cells left. From there we are working on scheduling a consultation with the transplant team and oncology radiologist to talk about the somewhat controversial radiation that has been suggested as part of preparation for transplant. The SCCA won't schedule our intake meeting until we decide if we are doing the radiation or not - they don't want to set dates with the donor only to change them later... basically they don't want to aggravate the donor and have them back out - this I appreciate!
I talked to someone at Children's Hospital at least five different times today, even when we're not there I can't get away from that place.
All of this and we haven't even had the meeting to discuss the transplant, let alone start the testing or meet with the doctors, dietitians, pharmacists and the rest of the transplant team.. marathon. I've always hated running.