They've Pulled the Rug Out from Under Us

Friday, September 12, 2008 - late

Dr. Agura called today and asked the family to come to the hospital this evening for a meeting. Basically, they can't go forward with the transplant. A bone marrow test yesterday shows 90% leukemia in Steven's marrow. They wanted to discuss moving him to hospice care. Agura did say they could keep him at the hospital for up to a week so he could get blood transfusions, etc. They are moving him tonight to one of the other halls in the BMT unit, out of ICU.

Agura said he had called MDAnderson and didn't think there was anything to do that they hadn't already tried. He said that getting into trials takes time and that Steven doesn't have time. Steven has one of the fastest growing leukemias Agura has ever seen.

Steven was feeling better today and able to talk. Not confused. Walked, worked on his computer. Called a lot of people. Was laughing and asking how everyone was doing. They moved him tonight because he wanted a refrigerator and there isn't one in the ICU. The hospital is preparing for hurricane transfers. Once he arrived in the new room, with five of us to help him, he worked like a dynamo to organize everything just like he wanted it. I always reclean a new room when he moves in with Clorox wipes (amazing what the crew doesn't clean). Steven used to laugh at me or roll his eyes and say "Mother", now he refuses to put anything in place until we have done the antiseptic wipe down. So the six of us scoured the room before he could relax.

Steven needs some time to process all of this and make some decisions. He asked for no visitors on Saturday and no phone calls. After the meeting with Agura, he said he just needed to sleep. He is so tired. Lisa is spending the night with him tonight. Hoping I can get there tomorrow through the hurricane's tempests and take over the next shift.

We will post again here when Steven feels up to visitors and calls. We so appreciate everyone's concern and kind wishes.