After 28 days in the hospital we left the room for the first time. We got Rafi to put on the blue mask she will be required to wear for some time when out in public and we put her into a radio flyer with wheels and cruised around the hallways of 5D. Just getting her to wear the mask was difficult, but she continually surprises us. Previously, she had only held the mask up to her face for five to ten seconds at a time and never let us put it on her. So we made a deal with her. We put a hat on her and told her she could wear her sunglasses if she wore the same mask, the blue mask, that Jackie and I were wearing. After a little negotiating, and Jackie’s work on the mask, Rafi let us put it on her, and we left the room.

Today we started to wean her off some of the drugs she routinely takes. We stopped her Zofran (anti-nausea) drip and decreased her pain medication dosage. There is a lot to accomplish in what seems like an incredibly short period of time but we’ll get there in due time. Rafi will determine how fast we reach these new milestones, and I have a feeling that she will continue to surprise and amaze us.

She did have some bouts of nausea today and she was a little uncomfortable at times. At one point her temperature rose to 101, but that is well within Tylenol’s ability to handle. She did drink some water and asked for her Dum-Dums and popsicles. She has really done so well through this procedure. She is once again talking a lot, and surprising us with what comes out of her mouth. We are far from where we were before we started, and far from healed, but Rafi is getting there, little by little.

Today her white blood count was 1.3 and her absolute neutrophil count was .5. I am looking forward to seeing the numbers tomorrow. But most of all, I am looking forward to the time when Jackie and I can say to Rafi, “want to go for a car ride? Let’s go home”.

Until tomorrow………