Saturday, September 20, 2003

Saturday, September 20, 2003 4:51 PM CDT

Luke here...I'm back at the apartment in the middle of the afternoon. Nathan was napping in the recliner when I left. Things are still going well overall. Nathan has been feeling pretty well given the high doses of chemo he is receiving. He vomitted twice yesterday, but it never really got him down. This morning it seemed as if he wouldn't have an appetite, but he ate a tiny bit for breakfast and a good lunch as well as a snack in the afternoon. He is really tired today. The chemo does that to him. This afternoon is the first day he has napped.

He is doing well, but he really doesn't like all of the "stuff" that happens. So far, here is how his day usually shapes up. He wakes up around 7:30am. We are back in his room by the time he wakes up. He has been waking in a fairly good mood. He has breakfast pretty soon and then the nastiness begins. He has his morning oral meds. At this point, it consists of a crushed up vitamin mixed with water and an anti-fungal that supposedly tastes somewhat like banana. After the oral meds, it is on to mouth care. This consists of swabbing his mouth with something they call troche. Then we wait 20 minutes and swab his mouth with peridex. He tolerates the troche but hates the minty taste of the peridex. The Fellow for the oncology ward ususally rounds in the morning, but we don't see them for long. His attending is the on call doctor from his clinic and they round at about 9am. He is continuously on IV fluids and chemo. Every hour he has his blood pressure taken. One of the chemo drugs can cause low blood pressure. Every four hours they take thorough vitals where they listen to his heart, lungs, bowels, take his temp, and measure the oxygen in his blood. He has blood drawn for labs at around 4 or 5am and then again in the afternoon. After lunch he has mouth care again. For the next couple of days we are cleaning his catheter site twice a day, so that happens in the afternoon. After dinner we give him a bath and then do the nightly catheter site cleaning, give him his oral meds, and then do the third mouth care of the day. Then we settle in and watch tv or play for awhile. At around 8pm we clean up his room and put a video on for him. When we are ready to leave and he is ready for bed, he really wants us to leave so we take off. Apparently he is perfect for the nurses throughout the night. I guess one night he called the nurses to his room, but he really hadn't. He was asleep but had put his head against the call button. Another night he did wake up and ask for us, but calmed down and went to sleep. He is doing great with us being gone in the evenings. He complains about most of the things that we have to do (oral meds, mouth care, line care). For the most part he holds still, but complains. It is difficult. He will get pretty sad and ask to go home or scream, "Get me out of here!". That is hard. We are trying a sticker chart with rewards after every N stickers. He won't fall for that for long though and as he begins to feel bad, it will probably get harder. At some point if it gets bad enough we will lean on the nursing staff more for them to be the bad guys. All in all he does great though.

So far his counts are still pretty good. He has today and tomorrow of chemo, and then we wait until Thursday to get his stem cells. His counts will likely begin to fall soon and he will likely feel pretty bad.

So far so good though.