Where do we go from here?

We've known for a several days now that our request for a transplant for Olivia was approved. It's finally starting to sink in that this is actually happening. So many of you have asked where we go from here so I thought that I'd share a little more about that.

1. Mike has officially requested a compassionate reassignment to Ft. Bragg, North Carolina. If this is granted then we will be moving in the next 3-6 weeks to North Carolina. If this is not granted then he will be leaving for Afghanistan in the next 4-6 weeks. We are hoping to find out if his request is granted next week.

2. The transplant that we keep referring to is an umbilical cord stem cell blood transplant. First they have to find a matching donor. They use umbilical cord blood that has been donated and is banked in a blood bank. Olivia will have to go through about 2 weeks of prep appointments at Duke. Then Olivia will be admitted to the hospital and she will undergo 7-9 days of intense chemotherapy. The chemotherapy will completely wipe out her immune system so that when the transplant is performed her body does not reject the new cells. After the chemotherapy is finished then they do the transplant. Olivia will need to stay in the hospital for approximately 3-4 months until her body begins to accept the transplant and begins producing new, healthy cells and her immune system begins to function again. We will then be allowed to leave the hospital but we'll need to stay very close to the hospital because Olivia will be returning almost daily for appointments. These will gradually decrease to a couple of times a week and then just once a week. Start to finish the process generally takes about 6 months without complications. After about 6 months we hope to be able to move closer to Ft. Bragg (which is about an hour and a half away from Duke). We will all have to be very careful for the first year to 18 months following the transplant. Olivia cannot be around sick kids, we have to be cautious about going into public places. She will most likely need to wear a mask when we're out and about. Olivia will have to get all her immunizations and vaccinations again. She will be on medications to prevent her body from rejecting the transplant for at least a year following the procedure.

Obviously this is not an easy procedure and the next couple of years will be pretty challenging. The transplant is also not a comprehensive cure. We are hoping that the transplant will repair the physical damage that has been done to Olivia's body and that it prevents future cognitive damage. Olivia will be the 5th child with Sanfilippo B to be transplanted.

3. The Pediatric Bone Marrow Transplant Unit is no place for an active little 6 month old so my parents have graciously offered to have Peter live with them while Olivia is an inpatient at Duke. Obviously this is ripping my heart apart but I just keep reminding myself that Mike (and thousands of other parents) have had to leave their children behind for much longer while they are deployed.

4. How can you help? We always appreciate your thoughts and prayers! We are working on some other ways that you can help so we'll be in touch with that soon.

We do have one more unique way that some of you might be able to help. If you are pregnant please consider banking your child's umbilical cord blood. There is generally not a charge for donating your child's cord blood to a public blood bank and you can get more information about donating cord blood by clicking here: Donate Cord Blood . As a result of Olivia's diagnosis we banked Peter's cord blood with a private blood bank, we chose to bank with CBR-Cord Blood Registry so I'm happy to share more about that experience with you if you're interested.