Waiting for Philly

ALL moves fast. Chris is getting noticeably sicker by the day. He had platelet transfusion last Friday which is good, because we then didn't have problems with bleeds over the holiday weekend. But his level of fatigue is now very limiting: he gets tired sitting in the car. The last 48 hours, he has had lots of nausea and then vomited when he tried to eat. His color is fading.

I have this troubling movie in my head of blast cells bubbling out of his marrow, pushing aside all the healthy cells, denying Chris proper oxygen transport, clotting, and the rest of the stuff blood is supposed to do.

I don't know what sort of treatments can be given to him. The options are limited by restrictions for the clinical trial.

Speaking of which, we go for evaluation next week. It is my dream that he will be accepted, that the docs will reassure us that he can be well-managed through the weeks before infusion, and that they have successfully treated folks like Chris many times before. I worry that they will deem him too sick. What if the blast cells have pushed out all the T-cells needed for the re-engineering?

I am also trying to plan how to travel with him so weak. Taxis and wheelchairs will help.

Emotionally, Chris is showing some wear and he makes almost casual remarks sometimes about dying. Alex is aware of what is happening and doing his part by trying to act normal but even he is solicitous with Chris and unusually helpful around the house.  Olivia visited over the weekend and got to see all this.  I think it was hard for her.