Friday, January 15, 2016

"Tired, Hungry, and Angry"

Those are the words La Petite Belle used to describe how she felt after the doctors came in two days ago. (I wasn't able to post an update because the Internet here at the hospital is not really up to par. Some days, we just don't have it.)

We got even worse news on Wednesday when the doctors said that La Petite Belle's GVHD (graft-versus-host disease ... where the graft {donor cells} are attacking the host {body/organs} because they see them as foreign and not belonging to the body they're supposed to be in) is Stage 4, meaning the worst kind she can have and very serious. By late morning, we were also told that she not only is not be able to eat anything, but she now can't even have anything to drink. She is only allowed to suck on ice chips or have a few sips of water throughout the day. The reason for this is that her gut needs to rest. It's inflamed and anything could irritate it. There's risk of a perforation or tear in her intestines or colon.

This was not the news that we expected yet again.
La Petite Belle's emotions are totally acceptable right now. I would be angry too. She just feels miserable.

Yesterday, her hunger was gone and she only complained about being thirsty. You can imagine, being a parent, how hard it is to watch your child cry because they just want water and you can't let him/her have it. It's horrible.

She's been in a lot of pain so they increased her Morphine drip. They just really want her to rest and allow the drugs to do their work. She's on steroids and immunosuppressive drugs, and a slew of other kinds of things, like TPN again so that she has nutrition, since she's not eating or drinking. Because of the Morphine and some of the other anti-nausea drugs, she's been mostly in and out of sleep throughout the last couple of days. It really is the best thing for her to just sleep. She's really only up to go to the bathroom or if she's in pain, so sleep is the best.

The doctors have told us that this particular type of GVHD is the hardest to treat and that the gut takes the longest time to heal. We will be in the hospital for a while now until they see signs of that healing.

It's been a very rough week, but even rougher last few days for me and for Beau. We have cried a lot. We've cried because we're watching her hurt. We've cried simply because this is all heartbreaking. We've cried because she's already sad about her sister leaving on Wednesday and she misses her. We've cried watching her cry. And, we've just cried out to God to continue His work and healing in her body.

I think about the Scripture that speaks of the man with leprosy going to Jesus for healing and saying this statement, "Lord, if you are willing, you can heal me." And, then Jesus said, "I am willing" and immediately healed him.

Jesus is always willing. The healing is there. It just may not look like we think it should. I don't have a clue what God's doing, but I know He is ALWAYS willing to heal. We ask. He heals.

That's what we stand on as a family. God is a healer, plain and simple. How He does it is up to Him. When He does it is up to Him.

Again, as a parent, having no control over this situation is the worst feeling ever. I can't fix this. Beau can't fix this. There's nothing we can do but get our girl the best care possible, pray, and trust in God.

So, that's what we're doing.

We are believing for healing and a miracle from God for our baby girl.

The bit of good news is this ... (yes, there is a little) ... she has responded well to the steroids. Her respiratory system is normal now; her breathing is normal; her cough is almost gone completely. That means the steroids are working. They just take a longer time to work on the gut.

The illustration they gave us was this: Imagine you have a bad abrasion or wound on your arm and how long that takes to finally heal. It's the same thing in her gut, but it's on every inch of her GI tract. All the pieces need to rest and heal. Her counts are also still good despite all that is going on. So, we'll count that as another plus.

Specifically, these are what you can pray for in regards to our girl's healing ... Please pray that her gut heals, every inch of her gut. Pray that her nausea and pain would finally subside. Pray against GVHD throughout her system. Pray that her issue of being mixed cells does not come back because of the immunosuppressive drugs. We want the GVHD gone, but we also don't want to go back to mixed cells. We simply pray for complete healing in her body. God knows what she needs. He's the One who made her.

Also, pray for our housing situation to work out after we leave since we'll have to stay in Houston again after we're discharged. How long we have to stay, we don't know. It could be a few weeks. It could be longer.

Thank you for your prayers and support! We know God will be glorified in all this.

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.