We're Here & Rolling!

We got here about 4 p.m. yesterday, after driving through a couple of very heavy rainstorms. But we arrived safely and got organized, at least as much as one can be in a room this size. Yes, its "urban camping" again. We're actually getting pretty good at this now. I packed pretty efficiently, and we managed to remember most of the little extra things you need to be comfortable, which aren't provided. Saw some nurses and staff we recognized from previous excursions, as well as some new faces. I'm almost positive we're in the same room we were in last summer. The good news is, we're on the side of the building that provides the good Internet access. The bad news is, I'm having even more connection troubles (just different ones). Hopefully, I can get them resolved soon. (To paraphrase my brother-in-law: "How'd your computer get broken?" "Same way the Coke machine got broken." "How'd the Coke machine get broken?" "I threw the computer through it.")


They don't waste any time around here, even on a holiday weekend. Greg got his first dose of chemo shortly after arrival. He's getting a drug called Busulafan to start with. He'll get 16 doses, each 6 hours apart. This is strong stuff. The nurses gown up with a "chemo" gown just to hook up the IV. One of the side effects is seizures, so he's on an anti-seizure med, too. I've asked several nurses, who all said that they've never had a patient sieze yet, so I figure the risk is pretty low. After that, he'll get Cytoxan (sp?) for 2 days, then a 2 day rest (although they start him on the anti-rejection drugs during that time. The magic day is June 1. That's the day he'll get his new cells. Its also called "Day Zero." So, today is "Day minus 8." Then we start counting over, with "Day plus one" and so on.

He got two doses of chemo overnight, plus (surprise!) he also needed plateletes. We figure he'll need red blood tonight. So, the rule against allowing anyone to actually sleep while they're here is still in effect. Plus, someone actually came in at 2:30 this morning to take a chest X-ray. I'm beginning to think this place is staffed by vampires.

His ankles are already very swollen (some was left over from the last hospitalization), so the docs must be happy. We're already talking about lassix. He's sleeping now, so I've moved down to the family lounge so I don't wake him up when I throw the computer through the window. The Cardinals are about to begin a game against the Brewers. I have too many loyal readers from both camps, so I'm not even going to mention who I'm rooting for. (Well, no one actually. Its not like its a hockey game for goodness' sake!).

He's still running neutropenic fevers, so he had to have a complete change of everything a couple of times last night, too.

The worst news we've had so far (and lets keep it that way), is that no one here thinks he'll be out in 3 or even, probably 4, weeks. But, for right now, he's where he needs to be, so I can't complain.

Thanks to all for the prayers, comments & good wishes. If people want to send via snail mail, you can look up the address on the web (I don't have it with me) and put his name, Unit 5900, room 5927. Cards & letters only. No flowers or edibles. That's one of the few rules around here. If you send flowers, the nurses get to keep them at the nurse's station. Much as I like all of them (they do a great job), I really don't think you want to spend your hard-earned money on that!

Thanks to all for everything, as ususal. I know I sound like a broken record, but its true. You all mean so much to us all.

Love,

Ann & Greg

P.S. I keep forgetting -- no Total Body Irradiation. Seems he had too much from St. John's in 2003. Your spinal chord is like a giant electrical grid. Any more radiation and his spinal chord could short out & he'd be paralyzed. Glad they figured that out BEFORE they gave it to him!