He's Doing Everything He's Supposed to Do -- So Far

OK, I'm sorry there's been such a lag in posts -- I know some of you get concerned that there's a problem if I don't post daily. Rest assured, if there's a major problem, I'll get the word out. The weekends get pretty busy with company, and Mondays seem to be turning into a day of recuperation from the weekend. But, its worth it. Matthew and I had a great time. I just wish we could see Eric as well, but with work, summer school, and ACT prep, its just not to be. But, we talk on the phone as much as possible. He seems to be in good spirits (he's too busy to worry!), and Matthew, although still having "issues" seems to be getting the hang of this, and seems to be figuring out that mommie and daddy just can't get home right now. I talk to him about 3-4 times a day. Bedtime is still the hardest. Grandma and Auntie Skibby are done torturing him, and now its Uncle Tom & Auntie Tammy's turn. They've promised no raw chicken -- unless he misbehaves! I've prepped him a little better, telling him Uncle Tom is even a better cook than Mommie. Its all about expectations! They have a fun week planned, so hopefully the time will pass quickly.

Greg is starting to feel pretty crummy, beginning late Sunday, but I've been assured that all is normal. None of this is beyond expectations. The main issue is his mouth. I've never seen mouth sores this bad. His entire mouth is raw, and it goes down into his throat and his inner ears. Its from a drug called methotrexate (sp???), an anti-rejection drug. The protocols call for three IV doses, spaced every few days after the transplant. His last dose, scheduled for last Sunday, was cut in half because of the mouth issues. The nurse told us that many people can't have the full dose just because of this problem. Unfortunately, his mouth won't start to get better until his counts start to recover. That could be several days yet. Right now he can barely drink anything, and food -- even yogurt, applesauce and the like -- is out of the question.

His counts have pretty well bottomed out now, and he sleeps a lot. His old bone marrow is wiped out now, and over the next few days he'll start the grafting process -- rebuilding his marrow with the donor cells. He got platelets two nights ago, and whole blood last night -- well, actually this morning. We finally figured that out. Loyal readers will recall that they draw labs between 2 & 3 p.m. every day, and if you need anything (blood products, electrolytes, etc) they start about 10 p.m. and do it all night long -- pretty much ensuring no one gets any sleep. The other day, Greg finally blew -- telling them just what he thought of the system (he was right! And WAY more tactful that I would have been at that point). He'd just get to sleep about 10, and the blood products would arrive about 11-ish. They have to take vitals about every half hour (and blood takes 4+ hours). So, he complained to the nurse, and, turns out there's an option that you can have your blood products start at 5 a.m. the next morning. No one bothered to tell us. So, the last two nights (mornings) we've done it that way and its MUCH better. He's actually getting to sleep some. He's getting his second unit of blood now -- as opposed to 2 a.m.

As an aside, Tom & Tammy took advantage of the much ballyhooed direct flight from Milwaukee to Branson. They found out from the rental car people (which they had to take a taxi to get to!) that the flight is being discontinued now that they're here. They will probably have to go through Atlanta to get home. And the airport has only been open about 3 weeks!

Other than that nothing much to report. Frances and Cindy are flying in from California to visit Cindy's parents here in St. L today, and will visit us tomorrow. We're looking forward to that. By that time, Greg's hair should be gone. Its falling out in clumps now, and the nurse promised to bring the electric shears sometime today. If I can figure out how to take a picture with my camera & get it on here, I will -- but no promises.

Thanks once again to all for prayers, thoughts, Karma, and every other good thing we know you are sending our way. No one is even talking about discharge yet, but hopefully, in a few days, we can turn our attention in that direction. If you need something specific to ask the Big Guy for, that would be it.

Thanks again!

Love,

Greg & Ann