And On Sunday, He Rested

Sorry there was no post yesterday. Matthew was here with Skibby and Grandma, and ran me ragged. He and I went to the Magic House, while Sadie and Skibby visited with Greg. Greg was feeling much better and they had a nice visit.

The previous night neither Greg nor I got any sleep, though. He needed blood, platelets, phosphorous, potassium, and antibiotics. All between the hours of 10 p.m. and 7 a.m. Plus, he had some major issues with the "Revenge." The night nurse came in and gave him Lassex at 10 p.m. (She’d been here since 6:30, but somehow didn’t get around to it until then). Then, she turns right around and pushes something through his IV. We asked, and she said, "Oh, that’s your Benadryl." (Pre-med for whole blood). Benadryl completely knocks him out, especially when given IV. Interesting way to start the evening. It was a loooooong night.

On the heart front, Greg’s heart rate is MUCH better. Last night his pulse was 83! The new drug is called Coreg, for those of you who are interested in those things. O’Maher’s stint ended yesterday, so unfortunately, unless she follows up on her own, she won’t ever know how perfectly right she was. Today, the new fellow came in to start his 2-week rotation. He’s very happy about this heart rate thing, and said the dose Greg is on is really a "baby dose." He wants to up it. The reason is, this drug can actually repair the damage done by 3+ months of congestive heart failure. That’s good news. Plus, this guy’s background is in cardiology. We were under the impression that the damage was irreversible. Oh, and there was no sign of DP last night. Maybe he was too embarrassed to stop in?

Yesterday Greg got his last dose of chemo, and his first dose of Tacrolimus, an anti-rejection drug. It’s a 20 hour IV infusion. Its so potent that it cannot be mixed with anything else, so instead of regular clear IV tubing, it uses an opaque, light blue tube. Matthew’s first question was, "Why are they giving you Gatorade dad?" That’s what it looked like.

Today is a day of "rest," with no chemo, but another 20 hour dose of the anti-rejection drug. That’s set to start at 2:30. But, he was completely unleashed for a few hours today, and before our company left, we masked Greg up & went down to sit in the enclosed courtyard for about half an hour. I think Greg enjoyed the breeze and change of scene, but its really hard to breathe through the mask.

His counts are starting to drop, but won’t bottom out completely for another week or so. Its weird that they can give him his cells while he still has counts, but they explained that these are cells that are still running around his bloodstream, even though his marrow is now completely wiped out. The counts drop because he’s not making any new ones.

So, tomorrow is the big day (Day Zero in transplant-speak). There’s a little confusion over what time to expect the transplant. Seems "MUD" (Matched, Unrelated Donor) cells aren’t usually frozen. They’re flown in "fresh" so to speak. However, the nurse thinks, (but is not sure) that his actually are frozen, and no one seems to know if that’s true and if so, why. She promised to check. With MUD transplants (that just doesn’t sound right, does it?), you get them when they arrive. Remember, his are coming from somewhere in Europe, so it could be 2 in the morning. Hopefully, we’ll find something out soon, but the lab, where they know the answers to these things, is closed on Sundays.

But, we had a great visit this weekend, although exhausting. They’ve put an addition onto the Magic House, for those of you who haven’t been there for a while. Matthew and I climbed and walked and went through obstacle courses. We spent about 4 hours there, closed the place down, then went to Ted Drew’s for dinner. (Missouri people: think Andy’s. Wisconsin people: think Leon’s or Kiltie. Hey, ice cream has calcium in it!). We were bushed. This morning, I went over to the hotel to go swimming with him. They just took off about an hour ago, and we’re trying to catch a nap before the afternoon/evening rush. I’m betting Matthew was asleep before they got onto I-44.

Greg says Hi to everyone and thanks to all for the comments. They keep us going! Thanks for the prayers & finger-crossing. If you have time, take a moment to send us some good Karma tomorrow.

Love,

Greg & Ann