A Long Day (D+6)

"You're going to go through tough times - that's life. But I say, 'Nothing happens to you, it happens for you.' See the positive in negative events." - Joel Osteen

Elise had a tough night and day today. We'd hoped that she would avoid the mucositis  as it's the reportedly the most painful side effect of the conditioning for BMT. It's also common so they'd premedicated her with palifermin which can reduce or eliminate the symptoms. We we're hoping for eliminate, now we're hoping for reduce.

She had some minor swallowing soreness the past couple days, but it either subsided on its own or went away with Tylenol. Last night though she got the full effect. She had painful mouth sores and diarrhea as mucositis can affect mucosal tissue through the body. Between the pain and the visits by the nurse and the Dr on duty, it kept her mostly awake from 12 am till about 5 am.

Besides the pain factor, mucositis can result in increased weight loss (from not eating), infections (from the mucosal barrier breaking down) and longer recovery periods in general.

Tylenol was able to knock the pain down enough that she got some sleep around 5am, but it was back by about 8am. They decided to switch pain relievers since Tylenol might mask a fever from infection, so they gave her the lowest dose of oxycodone. It took about 1.5 hours to kick in but when it did - wow did she get loopy. She looked like me after my first beer. A little too loopy they decided so they will be dropping the dose back to 1/2 of the smallest dose. Hopefully that will allow her to eat, sleep and function somewhat normally until the mucositis passes.

As if that wasn't enough for one day, once they sorted out the pain meds, her temperature spiked above 38C. That's the magic threshold they use to decide if they should be concerned. The protocol is to draw blood cultures in every possible way and then treat immediately with a broad spectrum IV antibiotic ("Zosyn") and then do a chest xray. The blood cultures can take days to come back with results (which we learned on a vacation to Florida a few years back), so they need to treat without knowing exactly what they're treating. Zosyn is designed specifically for this purpose.

We've known it was a matter of when, not if she'd get some sort of infection. Everything we'd read had warned us of that, so we haven't gotten too worried yet. Her neutrophil count dropped to "effectively zero" today, meaning she has no immunity right now to anything, so it was only a matter of time. We're crossing our fingers that it not something difficult to treat. I've also read that they rarely ever find out what the initial infection was caused by - it's knocked out with the prompt treatment before they can figured it out.

We did get some good news today. She'd had the sniffles the past couple of evenings and so they did a swab and culture and then put her on "respiratory isolation" (masks for all my friends). That culture turned up negative so she came off isolation today. And they ran a PCR of a poop sample and it came up negative for the various GI infections that might be common (e.g. c.diff) so they're pretty sure the diarrhea is from the mucositis rather than something else.

Another good thing is that the rash from the palifermin is nearly gone. A few small red bumps remained on her forehead and cheeks, but looking at her you might just assume it's light acne (she's 13 after all). It's not itching at all and hopefully in a day or two it won't even be a memory.

And the last good thing I'll report is that I got Elise to try a milk shake. For some reason she didn't want to try one (!) but I convinced her and she liked it. She can have one with each meal and it will add some nutrition that also feels good on the throat. There are several flavors to choose from but she seems to like the "cookies and creme". They have some other similar options (slushes made with italian ice, "Boost", etc), so we'll be having her try those. She's a finicky eater though.

So the rough stuff has started, but its clear that the medical team here is all over it. They have a game plan and everyone knows it. I feel Elise is in very good hands.