What a difference a day makes -- Can you say crappy....

I tried to tell you yesterday would be a great day to call Trish. Today is not. She started her Cytoxan at 4:00a.m. (right about the time I was finally getting to sleep -- but more on that later). Trish has done well with Cytoxan in the past, but the dose this time is much higher than what she received in the past. She had some nasal burning and they gave her Benadryl -- but a bit too much (even though we told them her dose level). The Benadryl made her anxious -- she feels like she is about to jump out of her skin. To counter act that for her they gave her attivan. Attivan will make her sleep. So while she was full of energy and wandering around the hospital all day yesterday. She is in bed today and feeling awful. To top all of this off they also gave her Oxycodone which she hates -- and we also asked for alternatives for...I spoke to her nurse today and she is getting with the doctor to insure that the adjustments are made. I thought we were on top of the game, because we know each time you get a new group of nurse/doctors they have to learn the needs and we told them up front this time, but I guess no one did anything about it. This too shall pass.

She will get Cytoxan today and tomorrow. Tuesday will be the transplant day. She'll have two days of rest and than get two more days of Cytoxan. This second dosing is designed to keep Graph VS Host disease at bay and is a clinical trial being done here at Hopkins. They have had good success here using that to control GvH before it gets bad and they treat it. Many hospitals use steroids to treat/prevent GvH.

I am groggy today today -- though no where near the grogginess of my beautiful bride. I was up till about 3 or 4 this morning waiting for Matt's lost luggage. If we knew for sure what plane it had come in on I would have been much better driving back to the airport. After 3-4 hours of rest, I woke the boys up and after they consumed their fill of Aunt Mary's famous pancakes. I took them to camp before coming here to the hospital. They are all checked in at Hokins LAX camp and should have a fun week. They finish camp on Wednesday at about 3:30. Trish's Mom and Sister come up on Thursday.

While you may have missed your chance to call Trish yesterday, today would be a good day to say a special prayer for her. In fact, I think I'll go down to the hospital Mass now and grab a light bite to eat -- it is going to be a long day.

SUNDAY UPDATE 2
It's now about 3:15pm.... About 45 minutes ago Trish arose from her slumber, but was very restless and had the anxiousness that she had early return. She couldn't get comfortable. She said her arms and shoulders felt sore. The doctors came in checked her out and ordered a CT scan. It was a tough time for me. Today has been reminiscent of the "bad" days of the earlier chemo treatments. Days like today are bad on both her and me. They are considering getting a sitter for her tonight and I may stay too. We'll see how she does later - I really need to get some good sleep to be useful.