Monday, January 26, 2009

Be Ye Warned:

So begins the festival of suck.

A little medical knowledge for your brains:
"Mucositis occurs when cancer treatments break down the rapidly divided epithelial cells lining the GI tract, particularly in the oral cavity, leaving the mucosal tissue open to ulceration and infection. Mucositis can occur anywhere along the digestive tract..."(
Trust me, you wanted me to put the "..." in there.

To help prevent this, or at least make it as mild as possible, we have to give Lila mouth care 4 times a day. This consists of shoving tiny sponges with 3 different types of oral hygiene solutions into her tightly closed, unwilling to cooperate mouth. We have been doing this since we were admitted and she has never liked it, but she particularly hates it now and it just so happens that it is even more essential that we do it now. Awesome.

She is really starting to feel miserable, which is miserable for me to watch (let's make this all about me, shall we?). She woke up screaming every three hours or so last night. I didn't hear it of course, because I was nestled all snug in my bed, but Ben had the privilege of dealing with it. She is now on PCA which is basically drugs on demand. They are going to monitor how often she needs the painkillers over the next 24 hours and then decide whether or not it would be beneficial to put her on a continuous fentanyl drip. From the looks of things so far today, I would say the drip is on the way.
Although I really have no idea exactly how she feels, I would venture to say it's like having the flu (times 10). She is nauseated and aches all the time. She can't swallow because of the mucositis, so she's drooling a lot (I know, that's not a flu symptom). It is going to get worse before it gets better, so they say. Even more Awesome.
She will start to get fevers and likely develop a rash, which her nurse today said is good news ("What kind of hotel is this?!"). It means that her body is starting to engraft the transplanted cells and make more. Today, so far, has consisted of a lot of really pathetic sounding cries and this:

She's not hungover. She's sleeping.


lindsey said...

Poor little thing...we're rooting for her from Scotland! (And you guys too!)

Valerie said...

I know she always sleeps like that, but she looks so sad. So sad.
Ugh, good luck, lady. Both of you.

Anonymous said...

TuTu Grandma wishes she could take away the hurt. She is such a little angel and usually in such good's hard to see her being so sad and hurtingun

Jeff and Stacey said...

that is so sad, i freak out if my baby has to cry when she is hungry! I'm sorry!

Anonymous said...

I'm so sorry.... it is difficult to see you both in pain. Wishing you good luck and quick results. Cindy

Timbri said...

That has got to be awful for all three of you! I am so sorry. Think of you all often and continue to pray. Hope things continue to go well and she is feeling better fast.

Andy Donkin said...

Let me just say that Lila is a hard core bad ass... and I caught the Tommy Boy reference in there. Don't think it escaped my all-searching movie quote eye. Tell Lila that creepy guy says hello.

Shiloh said...

Hang in there Yaya.

"heart" Pete

Tracy Whitt said...

Thanks for the updates on your post. Our prayers are with you all! You are amazing --- Tracy

Anonymous said...

Hi Annie, I'm Marianne Thompson a friend/former roommate of your awesome S.I.L. Kimmy. She told me about Lila a while back and I was excited to find your blog from Brittany Krallis' blog. This summer will mark my brother's 5 year "new birthday" from when he got his stem cell transplant. I have been reading about Lila's experience so far and she is absolutely amazing. The transplant process is brutal and greuling. Your baby is handling things so well (while looking adorable). I can't imagine much else being harder than watching your child suffer for her own good. You are an inspiring family. I look forward to updates on Lila, she has a cheering section in Washington.

Mandy Stewart said...

Wow... it sounds like she has a cheering section all over the world. Add Arizona to that list! I can't imagine. Hang in there guys! How much longer are you all staying at that expensive HOTEL?