Monday, August 24, 2015

What's today again?

I asked this question three times yesterday.

You really do forget what day it is. Actually you don't even care what day it is, only what number it is. As I write this, we are finishing up Day +11.

Some days are long; others go by quickly. It's hard to believe that we've been inpatient for over three weeks, and La Petite Belle and I have been away from home for over four weeks.

Our days, as I've said, are up and down. La Petite Belle can feel good one minute and then in pain or exhausted the next. Some days she can sleep almost the entire day because she says she's just so tired and weak. Other days, like yesterday, she's up and in good spirits. She was able to stay awake for most of the day yesterday and able to actually leave the room, which takes lots of energy. 

She was even able to spend some time with our new buddy, Colten. He's on Day +3 and such a little trooper! Colten's hair is starting to fall out so La Petite Belle showed him how to use the lint roller to get rid of it. They played the Wii and watched a movie, while eating a tiny bit of popcorn {six pieces to be exact - although Colten ate almost his whole bowl and wanted more}.

However, by the time we got back to our room, La Petite Belle was weak, nauseated, and simply exhausted. Things can change so quickly here.

I've been praying this whole time for God's best for my girl. 
God's best will always be better than our best!
So, wouldn't it make sense for us to pray that all the time? Yeah, I'm learning that.

With that being said, the "best" case scenario in this process is for patients with unrelated donors to get four mini-doses of a chemo drug called Methotrexate. The reason for this is that this drug helps prevent GVHD (Graft-Versus-Host Disease). GVHD is the main concern after engraftment, even more when the donor is unrelated.

Problem is a lot of patients cannot tolerate four doses of Methotrexate because of the severity of their mucositis and they only get the two or three doses. If she would've only gotten two doses, she would've been put on steroids for quite some time to fight against the GVHD. When La Petite Belle heard this, she said "Just gimme the medicine." (as in the chemo drug) She definitely is my brave, strong girl. If the patient gets the third dose, they usually can stop there without steroids, so we would've been okay with that. But, best-case scenario is that a patient take all four doses. Well ... check! Done. She was able to get the best protection they offer for GVHD.

The greatest news as of late is that they saw monocytes yesterday. Yeah ... I know, what the heck is that? Monocytes are a type of white blood cell which fight infection. They are the first ones to come back after a stem cell transplant. They counted 110. Yes! Now ... granted she has thousands and thousands to go, but things are moving in the right direction.

We continue to remain grateful and humbled by all God has done, continues to do, and will do through this journey.

After your season of suffering, God in all His grace will restore, confirm, strengthen, and establish you. -1 Peter 5:10

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses. Thank you for your prayers and support!

1 Comment:

sara said...

love that 1 peter verse!! continuing to pray for y'all and for continued good news!!! What a testimony your girl does and will have!!! please remember that my daughter lives in Houston as do some of my best friends if you need ANYthing!!