Monday, May 5, 2008

Day -4, Day 1 of Cytoxin

Well, today is actually Day -3! I started this post last night, but got sleepy.

Hello everyone. Uncle Mack is back in Minneapolis so I can pass along first hand information about Gracie. Today was her first day on Cytoxin. This is the drug that will eventually cause hair loss. :( It's so strange. To look at this kid, you'd never know she was a week+ into chemotherapy. She's a little bloated from all of the fluids they are pumping through her, but otherwise she is just having a ball most of the time. She plays and flirts just like she always has. I did see her spit up one time yesterday, but it was pretty much mid-play and a non-event for her. She's the best sport ever!

Anyway, Sarah mentioned a wicked diaper rash. Whoa!!! I had no idea what that meant. It's terrible. Despite changing diapers every 60 to 120 minutes, it's just next to impossible to keep the harsh chemo drugs off of her skin, as she gets rid of them (pee-pee). Especially around her "no-no" area. And because she has fewer and fewer white blood cells, she can't fight the rash to make the area better. It's tough to see, but understandable now that diaper changing time is not her favorite time.

The unit staff gave us some sort of cream to create a physical barrier between her skin and the pee-pee once it comes out. Jimmy compares it to spackle. It seems to be working pretty well, as the area appears less irritated and she is less fussy during changes. A rule with real spackle is that you are supposed to let it dry before anything touches it. Well, we don't have that luxury with this human spackle. Gracie is too active, and we have to be sure that we catch all of her pee-pee so the nurses can weigh it (in the diapers, people). They need to know that she's pushing the chemo out of her body fast enough to prevent kidney infection, and to make sure the dose in her body is appropriate at any given time (that explains all of the fluids and the bloating). So, she has to have a diaper on. The diaper sticks to the spackle a bit, causing the diaper removal process to take a little while.

Gracie is doing more cool stuff, even after being gone just one week I can see a difference. She stands up pretty much by herself, just hanging on to mommy, but mommy doesn't have to hang on to her. She is "talking" a lot more too (she even said da-da). She has lots of stuff to play with, and she's

Mommy and Uncle Mack got out yesterday for a bit. The weather here is amazing. About 65-70 degrees and sunny. So nice! We went to the two story target in downtown Minneapolis. We walked in, and they announced "closing in 5 minutes!" Despite our mad Target dashing, they eventually had to turn out the lights to get us to come to the checkout.

It hard to believe that This Thursday is the big day. More to come later.

5 comments:

Kelsey said...

So glad that she seems to be doing well. The rash just sounds like no fun at all, poor thing. Glad that she is still happy and active! That is great about standing up and talking more, way to go Gracie!!!
And a 2 story Target? Wow that is almost woth a tip up north, lol.

Auntie Chris said...

wow, I can't believe the big day is coming up...will be sending great thought's to Gracie...can't wait to hold the lil darling in my arms, give her a hug from me! Take care guys, love ya!

Rylie Suzanna said...

Sarah,

Chance's family told us the only thing that helped his bottom was bag balm. We've been using it, and it's been a lifesaver. No bad bottom for Rylie! It's a little green jar from the pet section at Wal-Mart. Poor Gracie's toosh! Hang in there!

Jade, Lyle, and Rylie

*Adriann* said...

hhmmm I am so curious about this spackle you speak of. After all, you told me to use the Lansinoh and it rocked! I can only imagine the spackle must be gold in a tube.

I hate that she has the bad rash. You know that HAS to be uncomfortable.

LarrySue21 said...

Diaper rashes stink in more ways than one! The "spackle" you speak of is good stuff and Jimmy was right in naming it as such . . .there is seriously no other way to describe it. But it works. Gracie, Jimmy and Sarah are in Central Florida Sunshine's prayers! We love all of you!
---Aunt Bee