What Do We Want? Boredom! (D+5)

"When you pay attention to boredom it gets unbelievably interesting." - Jon Kabat-Zinn

I haven't provided an update in a few days because, thankfully, there hasn't been much to report.

As predicted, the conditioning regimen has made Elise's absolute neutrophil count (ANC) drop like a rock. The ANC is a rough measure of the effectiveness of her immune system. In healthy adults the count is 1500 to 8000. Elise's dropped from 1090 on Monday to 510 on Tuesday and was 100 this morning. It should bottom out in the next week or so and then start rising again in the next few weeks. When it drops below 500 they say you are suffering from neutropenia and your risk of infection are significantly increased.

When the ANC goes below 1000 you get put in isolation, so starting on Tuesday Elise has been isolated in her room. Well people can enter if they take precautions (wash hands, no or limited contact, etc) but she can't leave.

Her throat has been a little sore from what seems to be mucositis. It's mild so far and we're hoping it doesn't get too much worse, but they've told us you can't really predict it. She's got several different mouthwash options including one with lidocaine in it, but she doesn't like using them too much. Fortunately Tylenol seems to help.

She's also lost some of her taste sensation so most foods lack their normal appeal (and she's never been a big eater to start with). As a result she's not eating as well as she normally would and has lost some weight. The nutritionist says this is normal and they talked to us about some strategies to compensate. We're trying their suggestions and we'll see how it goes.

On Monday she got a rash from the palifermin which is meant to help prevent mucositis. The rash was mild and it's starting to diminish already.

And this morning Becky said Elise had the sniffles during the night, so they are running a culture and have her on an added "respiratory isolation" until it comes back negative. It doesn't impact Elise, but the medical staff have to put on masks and gloves when they enter the room. Kinda discourages drop-ins which can be good and bad.

She's in good spirits but lethargic. The good spirits are definitely welcomed, the lethargy not so much. In one sense the lethargy is a good thing: it would be difficult to contain a hyper kid in a small room. She's spent most of her time reading, watching TV or surfing the web (ie watching silly Youtube videos), but she did do some crafting yesterday with an art volunteer and she's spent time with her tutor as well.

So I think we're in for more of the same in the near future. We're hoping for little or no excitement. If the next several weeks were boring then that would be exciting for us.

Thanks to Babs O'Neil for the bug pillow cases. They are really cool as Elise loves bugs (but I think Becky was a little creeped out).