Drum Roll, Please

I know that many of you are wondering what our next step is going to be. We have made a final decision to NOT transplant Oliver.

Unfortunately, the benefits from the umbilical cord blood transplant are not great. There will be no cognitive improvement, because the cells cannot pass through the blood-brain barrier. The doctors have seen behavioral improvements and the physical deterioration is slowed in patients who have been transplanted. When we add all of the benefits up against the risks (he has an 85% chance of surviving the transplant, but still at risk for graft-versus-host disease or other very serious infections) & the impact on our family, especially Waverly, we just don't think the transplant is the way to go.

As a mom, my instincts are to do whatever I can to help my dying baby. Saying "no" to doctors who think they can do something to help Oliver, is the absolute most difficult decision that I have ever had to make.

We did not want to sequester our family for an entire year; away from family and friends, schools and church, playgroups and parks. We are choosing to relish in Waverly & Oliver - to never pass a carousel without taking a ride, always taking the time to pick up sticks, carrying a balloon all over town, and making as many trips to Disney World to see Pooh & his friends.

We will now embark on a long journey of decisions. We are trying to determine if we can fulfill our commitment to another year in London. We feel like there are SO many doctors and specialists we need to see, that a move back to the US will most likely be in our best interests. We are also trying to figure out where that move will take us. There is so much to consider. Thanks to all of your for your support. Thanks to Duke for being such a pioneer in this field and wanting to help kids with Sanfilippo so desperately.