Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Thursday, February 19, 2004

Cycle 2, Day +7: The Post BMT Rollercoaster

If something seems too good to be true, it usually is.

Steven was doing so well after this last bone marrow transplant (BMT) that we took it for granted, after 72 hours of not throwing up or becoming nauseous and eating, we became lax about giving him his antinausea medications

Monday morning he woke up vomiting, and we couldn't really get it under control. He couldn't take anything, including his antibiotic, which is essential with his dropping blood counts, or the medications that might make him stop vomiting.

Doug carried him down to the car and I drove him to the hospital, where I got a wheelchair and took him to the bone marrow transplant clinic. They put him in a room and gave him his antinausea meds intravenously in his line. We got him feeling better, not great but much improved, and brought him home, where he went to bed at 5:30 pm and stayed there until morning.

Since Monday I've been setting the alarm and getting up in the middle of the night to give him his antinausea meds around the clock. He's been doing better since, although has had a few bouts of nausea.

Our daily schedule at the hospital consists of a trip to the lab, where they draw blood out of Steven's line, weigh him and take his temperature. While they are analyzing his blood, he goes down to the schoolroom, a room with two teachers and a variable number of patients of different elementary school ages.

After 1 1/2 hours of school, we go to the bone marrow transplant clinic, where they give us the results of his blood test and tell us whether or not he needs a blood or platelet transfusion in addition to his daily infusion of GCSF. The GCSF infusion takes about half an hour, blood and platelets take three hours. Yesterday (Wednesday) Steven received GCSF, blood, and his Day +6 infusion of vincristine.

As of Tuesday, Steven's ANC is zero, this means he is neutropenic. During his last cycle, he got a fever during the time he was neutropenic and we spent another week in the hospital, since he has basically no immune system at all right now, he will spike a fever if he gets any sort of bacterial or viral infection.

So, he wears his HEPA mask any time he is out of our apartment, we keep him away from crowds, he eats his eggs hard-cooked, his meat well-done, we throw away any food or drink that's been sitting out an hour or more, we give him individual serving packages of food and drink whenever we can, no fruits that don't have thick skins or can't be peeled, no nuts, dried fruit, unpasteurized cheese or uncooked vegetables. He can't go out on the golf course because of piles of leaves and freshly turned dirt, which carry fungus (the golf thing is a little difficult because it was a sunny 65 degrees here today).

But, the doctor OK'ed a trip to the zoo as long as it isn't crowded and he wears his mask. So, if he manages to avoid a fever, we're going to the zoo on Sunday to watch them feed the Komodo Dragons (Crowds are definitely not an issue, I'm beginning to think we're just about the only people in Memphis that are interested in the reptile feedings, if there are more than two other people there we'll be shocked).

So, we're all praying for no fever while we wait for his stem cells to engraft. Fever is not the end of the world, but it will earn us another 7 or so days in the hospital. I realized the other day that Steven and I have spent more nights in the hospital than we have at the Target House apartment. He at least gets to sleep in a bed, I sleep on a pullout couch next to his bed positioned such that when the nurses come in and out during the night, the door bangs one end of the couch. Around 5:15 am, there is a flurry of activity as the nurses get ready for their shift change. Steven and I are coming to believe that the compensation of the nurses is dependent upon how much he pees on their watch. The nurses come in at 5:20 or so and stand him up next to the bed, still asleep, while they beg him to pee in a cup.

Then there's Ken Bertang, the bone marrow transplant nurse practitioner, all 6 feet 6 inches and 300 lbs of him, who comes in to visit every morning before 8:00 am and sits on the couch, whether or not I'm still in bed. If I'm not up, he tells me I can't expect to soar with the eagles if I fly with the owls. Ken is also famous for ordering Lasix for Steven, a diuretic, which for some reason is never administered during the day, it's always shortly before midnight that he gets it. Lasix causes Steven to need to pee every 15 minutes for about 3 hours. Maybe that's what he means by flying with the owls.

Needless to say we'd rather be at home than back in that hospital room, so we're praying for his counts to come back up soon and no fever, and an opportunity to see the Komodo dragons eat.

- Kathleen

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