We had a follow up appointment with three of Jace’s specialists on Tuesday. His platelets were at a good level (122K), so we did not need a transfusion. We will be able to monitor his blood work from a local lab at home, and should we need a transfusion prior to our next appointments, we will make a day trip up to Stanford. We are scheduled next week for another IVIG, so if he needs platelets, both treatments will be done the same day. His health remains steady, and isolation is proving to keep him healthy up until the start of his bone marrow transplant which is crucial.

The search for a donor began this week, and finding a quality match looks promising. Once a donor is contacted, and follow up lab work proves to be a quality match, we will then be able to schedule a transplant date. We will likely be up at Stanford for about two weeks prior to the transplant, to do all the necessary pretreatment testing. All of our upcoming plans will be based on finding an available donor. We were also able to tour the Ronald McDonald House at Stanford, it is a beautiful facility which was recently remodeled and reopened last month. We will be able to have our own room for the 100 days post transplant, so it will be our temporary home away from home. If Jace’s health permits (and the weather in the fall/winter) we will even be able to walk from the Ronald McDonald House to the hospital for our daily appointments.

Jace will also be fitted for his helmet sometime in the next couple weeks, so he will be used to wearing it by the time he starts to crawl. He is already rolling all around his crib and the floor, so he will be moving in no time. We are slowly gathering things for our ‘move-in’ date, and are looking forward to beginning the transplant process. It will be here before we know it!

Love, Andrew, Becca and Jace