Posted by Steph in
Chemo Round 1, on Saturday, July 29. 2006 at 04:25
The first round of chemo is over and Asher is in the recovery period now. When asked today, "Do you think you're getting better?" Asher responded with a nod yes. That was Annie that came by and asked him that. A clinical nurse (or something, forget the technical term) that works with Dr. Etzl (who is now specializing in the care of the brain tumor patients because there are so many of them). Annie had been ill and was better so she was just getting into the PICU to check on him and go over a chemo schedule/calendar with me. Asher's numbers are looking up....ANC was 297 this morning (WBC .9 (began as 5.3 before chemo to give you an idea and was .5 yesterday)). I got some good news today....that part of the 2nd and 4th rounds of chemo is oral and could be done at home until his counts got low and/or he got a fever. To me this is good news, but of course scarey too. We'll have to see how it ends up going. Oh, but with the good news came some bad news. I didn't realize we actually have six rounds of chemo because there are five rounds and then the sixth lasts 6 days (which is "a year of chemo in 6 days" that kills his bone marrow) with a stem cell replacement after. It looks like this will all definitely continue into January of 2007, Asher's 4th birthday.
Anyway....
I spent 9 hours with Asher today while Scott went into work. It was so good to see a bit of my little boy returning to us today.
He didn't sleep much at all, only 1 hour of that time. I could tell he was tired but he was back in the fighting it off mood that he usually is! The thing about the 1 hour he did sleep was that he kept jerking, shaking, flailing his arms and legs, half opening his eyes, mumbling....I guess he was dreaming A LOT and I felt so bad for him that he couldn't get some rest.
The other 8 hours we colored (well, I did and Asher pointed and told me colors and got crayons out but didn't have the actual strength to color himself), played a mini-fishing game (he loves those games!), did a dinosaur puzzle one time, looked at some cards he got, opened some gifts he got, played Playstation (Ice Age 2 that he got today and PacMan) and watched parts of 3 movies that were on the hospital TV stations (101 Dalmations, Bugs Life and Madagascar....we see these a lot since they are on the TV there all the time).
In all of this Asher actually smiled a few times! The first few times I saw the smiles he didn't really move his lips up like a full smile you'd think of. I could tell his mouth hurt, but I still knew he was smiling! I do have one photo where a person who wasn't playing with him could know it was smile. Oh, and just to mention, he still doesn't drink or eat anything! The bottle of water he is holding in the photo is his comfort thing right now! I do hope his mouth heals fast. It was so inflammed today; his cheeks are puffed way out. Poor guy.
So the smiles were good to see today! He even had some old expressions during his play, words, movements, excitements. In between he was rubbing his incision a lot (where the shunt was removed in the back of his head), spitting cuz he still doesn't want to swallow still, rubbing his eyes and picking at his eyelashes a lot, holding my hand and rubbing his left ear so much it was red (not sure what is wrong with it....a bit afraid knowing some of what we're doing can cause ear damage (hearing loss) and we were told it would be more so on the left side (I think that is what the doc said and I'll ask again this weekend)). So, it is no wonder he was quite irritable today. Who could blame him.
Another cool thing happened today. Asher told me when to change his diaper. Also, when I asked him if I needed to change it towards evening he kept answering, "Not yet" or "I didn't go yet." This was cool because he was not fully potty trained before all his surgeries and hospitalizations and we had never been to the point of him asking us to get him out of a wet diaper (he used to not care). Yeah for Asher!