Globe trotting

We flew to Houston on Tuesday morning and the flight went better than Tyler thought it would. We were both very thankful that he didn't have much pain in his ears from the cabin pressure. He was worn out from all of the hiking he had to do in the airport (as well as the early alarm clock) and laid low for the rest of Tuesday.

We met with the doctors on Wednesday morning (starting at 7am CST!) and learned that Tyler's platelets were back down at 1. He's waiting to get a transfusion now, but the doctors are pretty much done with us. They offered him the choice of continuing on the ponatanib and Ty chose to continue for now. There really aren't any other good options, so we are kind of stuck with it.

It's a relief to know that Tyler will have a drug to take for at least another month, but the ponatnib really isn't maintaining ENOUGH control over the disease to be a final answer. Our doctor in Seattle thinks that Tyler's CML may be multilingual -- meaning that it communicates along more than one pathway in the DNA. They are researching other pathways, but that research isn't far enough along yet to be of great help. I hope that some new clinical trials open up soon though!


Tyler has gotten progressively worse with each hospitalization and is finding it very difficult to regain his strength after his most recent inpatient stay.