Christmas in Houston

We heard from the Houston folks this week and they have (ever so kindly) invited us to join them in Houston later this month.  I think we'll be crazy flying around the country the week of the Christmas, but it is definitely worth it for Tyler's health.

His immune system has still not recovered, which should have happened by now if the medicine was working.  I am nervous that they will take him off the Ponatnib at this next visit, but we may not know until after the doctors review Tyler's health and his lab results.  Our doctor (Dr. Oehler) is attending a Hematology conference next week, so we hope to hear more from her on exciting new therapies that Tyler can try.

With his current poor health, he is not in great shape for anything else treatment wise.  Our focus is on getting him to eat more and exercise more over the next few weeks so that we can give him as many options as possible.  He continues to get transfusions of platelets every other day, but is getting through those okay.