A few weeks ago Elias had blood drawn for his HLA typing. While it is no where near time for them to need this information for the practical purposes of bone marrow transplant it is always good to know what kind of match types exist. This also helps with the decision process for timing and/or use of alternative options such as androgens, a hormone used to delay bone marrow failure in some cases. At any rate once this information is achieved the team can monitor the worldwide marrow donor list for potential matches. While matches are just compatible or closely related they are not guaranteed. When an individual signs up to become a donor when the time comes they may choose not to. They also must pass a series of test to ensure they are healthy enough and are able to provide positive samples. Finally, the donor may no longer be available. Regardless having an idea of what your prospects might be at any given time are worth knowing, be it positive or negative. In Elias case a search in the data base yielded quite a few full matches. This is positive news indeed as many unrelated donor are close matches, but not full. Having a full match helps increase the chances of engraftment (new cell growth) rates and other variables. It is still not a given as nothing with bone marrow transplants are, but it is promising. It means that when the time does come for his transplant there should be options and the ability to find a full HLA match. This positive news was welcomed and embraced today as the past few weeks have been very stressful with some issues on Elias upcoming surgery this week. One thing we all need to remember, this explanation is a very basic and simplistic description of the process. Bone marrow transplants are very complex and every patient is different. It merely provides an optimistic outlook particularly on the type of match for transplant we would more than likely be anticipating.
In other news, as we mentioned Elias has his Pull-thru surgery this week. This is the surgery that will repair his imperforate anus. We are quite nervous about this one. There has been lots of confusion, miscommunication, poor communication, and contradictory information thrown our way with this. It has given us a very uneasy feeling and quite honestly we feel very unprepared. The time to do this is now though regardless, so we are just turning to our faith that this is the time for Elias! We repeated labs and cultures because of this surgery to ensure that the c-diff and UTI is clear. The C-diff is coming back negative for now, but GI wants to keep him on the vancamycin through the surgery and potentially after. They say that a flare up could be very bad news since it is in the area in which they are operating invasively. The UTI organisms (there are 2 separate ones) is still active. They are going to give Elias antibiotics intraoperatively to try and kill these. We appreciate everyone’s thoughts and prayers for this. While in the operating room they will also repeat the ABR to try and figure out Elias hearing loss. We are equally as nervous about those results!
This past weekend Elias has done very well so we feel as though he is well enough for surgery despite the active results. Grandma O was in town for a short visit. It was nice and Elias was very playful. We think she enjoyed it despite her car breaking down, but she got an extra day with us out of the deal so it was probably worth it! Elias continues to develop rapidly learning new things everyday. If it was not for the timing of this surgery we would probably venture to say Elias would be walking in a few weeks, but not too sure how this might slow him down. He is really developing quite a little personality as well. Not that he hasn’t always had an animated one to begin with things are just different now. He is very deliberate with his emotions and looks, very age appropriate. His occupational therapist told us today how proud she is of him. She knew he would be doing all the things he is doing now, but she was not expecting them all so fast. That is a true testament to how hard he has worked! We will keep everyone updates on the surgery progress and results this week. Thanks again for all the thoughts and prayers.