Wednesday, May 27, 2009

Results ...

We received the results we were waiting for yesterday afternoon. Dr. Ochs, along with other key opinion leaders (KOLs), thinks that a bone marrow transplant is the best option for Hunter. Now we must decide where to do the transplant. Our options are Children's Hospital Los Angeles and Seattle Children's Hospital. Obviously, L.A. would be more convenient logistically but Seattle has a very strong BMT program. We are going to speak with the physicians in Seattle to see what their protocol is and how different it is from that of C.H.L.A.'s.

Hopefully, we will have all of the information we need soon so that we can make a decision promptly. We know that it is in Hunter's best interest to have the transplant done this summer. It is better to avoid a transplant during the fall/winter months, cold/flu season as part of the process involves total suppresion of the immune system.

Tuesday, May 26, 2009

More Transplant Info ...

Once the decision is made to go to transplant, the doctors determine when they have space for admission. The Unrelated Bone Marrow Coordinator then requests selected dates from the donor. The donor center approaches the donor with the proposed dates. The donor either picks one of those dates or comes back with a date of their own. Once everyone agrees on a date, the Coordinator lets us know and then schedules Hunter for all of his pre-transplant testing. The donor, in the meantime, has their testing done as well. The donors pass with no problems most of the time. There have been donors who did not pass their physical exam and were not able to donate. However, we are in good shape since we have two perfect matches and a backup donor if necessary.

A perfect match is a donor who matches all of the antigens/alleles that they test for. This is based on HLA typing. They test for A, B, C, DRB1 and DQ. Each of those have two sets of antigens and alleles. If those five areas match at both sets, there is a 10/10 match. Even though a donor matches perfectly in those areas, they do not always match in blood type. This does not make a difference for transplant purposes. They often give marrow that does not match in blood type. One of Hunter's donors matches him in blood type and one does not. They have not made their final decision on which donor to use. But again, blood type is not an issue in transplant. Sometimes the best donor is the one that does not match.

Tuesday, May 12, 2009

"Two perfect matches"

We received an email this morning from the Unrelated Transplant Coordinator at Children's Hospital. She wanted us to know that they have found TWO bone marrow donors that are perfect matches (10 out of 10) for Hunter. Currently, we are waiting on more information regarding Hunter's condition and have not made a decision about how we are going to proceed. However, this is excellent news considering our hematologist thought finding an unrelated donor that was even a partial match would be extremely difficult.

We hope a bone marrow transplant isn't necessary but we are relieved to know that there are available matches if it is.

Wednesday, May 6, 2009

"Within 4 weeks ..."

Hunter had his last blood draw (for this round of testing) this past Thursday. Dr. Ochs, our immunologist in Seattle, will run tests on all of the samples they've taken since February 17th. Each blood draw has gotten trickier because Hunter anticipates the insertion of the needle. However, through his tears, he always says "thank you" to the technician. The sweetest thing about his "thank you" is that he actually says it while the needle is still in his arm.

Dr. Ochs let us know in an email that "we have some backlog, but should be able to analyze all (of the) samples within 4 weeks." We try to remain positive about the time frames we are given by our doctors but over the last year "within 4 weeks" usually means something closer to 8 weeks. Although, I suppose, after all of the testing, different doctors and life changes what is another 4 weeks of waiting, right?