Cycle 1, Day -2: More Chemo

Steven received another dose of cyclophosphamide today, just like yesterday. He woke feeling OK but not great, still nauseated.

His teacher at St. Jude, Miss Brooke, showed up for a visit, and Steven, who had been lying in bed trying to sleep, suddenly wanted to sit up. After she had chatted with him for 15 minutes or so, Steven, who had been flat on his back in bed since Monday morning except for getting up to pee, suddenly got out of bed.

I asked him if he wanted to pee and he said no, he wanted his shoes and to go for a walk. He can't leave the room without a mask so I took off to get one. When I got back his shoes were on and he was unplugging his IV pole. I asked him if he maybe wanted to try sitting up in a chair for a bit before actually taking a walk.

He decided that was a good idea and after sitting for about 5 minutes, started feeling a little nauseated again. Still, he sat on the couch next to his teacher and talked with her for over an hour until she had to leave.

Five minutes after she left, he was very very sick, the worst he's been since beginning chemo, but he was so happy to have a visitor, I think he held it off so he could sit up. I told her to visit any time, Steven catalogs the people who visit him, even when he's out of it and can't talk. I think just the presence of someone who cares enough to come comforts him.

Steven perked up again later in the afternoon, and left the room to go to a play area just outside where he played Sorry! with Sean for 2 hours. Later, he crashed again, more nausea and vomiting.

Thursday January 8:

No chemo today, this is his day of "rest". Tomorrow he will get his stem cells back.

His teacher came again to see him today, again he got out of bed and sat beside her on the couch. I haven't seen him do this for anyone else who comes.

Then back to sleep. He seems a little less nauseated today, but he hasn't touched any food since Sunday night, a little apple juice Monday morning before the chemo started, otherwise nothing at all.

He's getting IV fluids, so dehydration isn't an issue, but if he doesn't start drinking and eating before they send us home on Saturday, he will have to leave with IV fluids hooked up in a backpack.

- Kathleen