Change of Plans

Technically today would have been the last day of Olivia's pre-transplant work-up. She had been scheduled to have her central line placed and be admitted to the hospital on Monday, July 6th (her 3rd birthday). I say "had been scheduled" because we've had a change of plans. We're delaying things one more week so we're now anticipating that Olivia will receive her central line on Monday, the 13th and be admitted that afternoon. I think I mentioned it earlier at some point but when Peter was born we decided to bank his cord blood. At that time Olivia had just been diagnosed with Sanfilippo Syndrome and we discussed the idea of banking Peter's cord blood with several doctors. They all told us that there were not any treatment options using Peter's cord blood that would be able to help Olivia. They stressed that if we did decide to bank his cord blood it would most likely remain in storage unless (God forbid) Peter might need it someday. Despite the advice of the doctors I really felt that we should bank the cord blood so we chose a private blood bank and paid to collect and store the cord blood. Four months after Peter was born I learned that there were doctors at Duke University Medical Center performing cord blood transplants on patients with Sanfilippo Syndrome. I was shocked, none of the doctors we had been working with knew about this treatment option. When we came to North Carolina this past March to see if Olivia was a good candidate for the transplant we hadn't received the results of Peter's tests yet, at that point we were not sure if he also had Sanfilippo Syndrome. We found out that Olivia was a good candidate for the transplant and we began working towards getting insurance approval and moving to North Carolina. We learned that Peter was not affected with Sanfilippo Syndrome.

As part of Olivia's pre-transplant work-up we revisited the topic of Peter's banked cord blood. The doctors gathered some initial information about Peter's cord blood sample and were very impressed, impressed enough to put things on hold a week to see if Peter is a match for Olivia. IF Peter is a match it would make some aspects of the transplant much easier, I will get into the details of that in a later post if it becomes necessary but we don't want to get ahead of ourselves here.

I'm just absolutely reeling from this news. The whole situation is just so surreal. You can't help but appreciate the complexity of God's plan in this entire situation. A sample of Peter's cord blood will arrive here in North Carolina tomorrow for further testing. We hope to know sometime next week if it will be a match for Olivia.