Wednesday, July 27, 2016

A Hope and a Future

As I started writing this post yesterday, La Petite Belle had just finished asking, yet another nurse, what her "religion" was. She's never been one to mince words.

She asks people this when she starts to talk about the t-shirt she designed. She shows them a picture of the shirt and then references the Scripture printed on it:
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future." Jeremiah 29:11

La Petite Belle selected this Scripture that we've all been standing on and referencing through this whole journey.

I've heard many sermons preached using this Scripture. We all have.
The truth behind the Scripture lies in reading the whole book of Jeremiah, and not just the one verse. It is often misused when taken out of context.

The best explanation of this verse, in my opinion, was written in Relevant magazine ... the article, "The Most Overused Verse in the Bible," by Chris Blumhofer.
"We often read Jeremiah 29 like it is good news, plain and simple. But to the first people who heard those words, they were a tremendous disappointment. God’s people had suffered terribly. They had lost their land, their throne, their temple. Before Jerusalem fell in battle, the people had given in to cannibalism. They were then force-marched 800 miles and paraded (literally) through a pagan city in which they were now considered as the living symbols of the power of that city’s god.

It was into this kind of despair that Jeremiah offered God's promise: "I know the plans I have for you .... plans for your welfare and not for your harm, to give you a future and a hope." They were not easy words to hear. Jeremiah promised that God had a plan that was certain and inevitable. But it would not unfold on Israel's timetable. It would not simply undo Israel's hardship. Yet the promise stood: God would fully restore His people and bring them out of their desperate situation, but He would not do it in the way any of them would have planned it."

There's so much truth in that last section. When you're faced with horrible circumstances, it's hard to hear good news, and honestly, even believe that good will even come out of whatever the situation may be. But, this is precisely when you need to keep reminding yourself who God is and what His promises are. If you don't, you will just fall into despair. I've been both places and so has Beau. I've felt such deep despair, but also such tremendous hope for the future.

Through everything that has happened in our lives over the past 15 months, we, just like the Israelites, definitely would have preferred a quicker timetable and not to have experienced these hardships.

There are many things that parents should never have to see and experience. This last year, especially the last almost seven months, has been something I would never want anyone to have to face, to have to witness happen to their child.

Despite what I think and how I feel about it all, it's what has happened, and the road we have had to travel. We continue to travel it, constant changes, new battles, and all.

But, just as God's promise stood for Israel, it stands for us. He fulfills His promise in His own way, in His own timing, and not always the way we want it. God's promise for us, as His children, is "a hope and a future." This Scripture ABSOLUTELY refers to us, as Christ-followers, as co-heirs with Christ, and through Christ as descendants of Abraham. God never promised that life would always be easy and peachy-keen, but He did promise us "a hope and a future."

We can count on this. He never changes, and neither do His promises.
This is part of the hope we can hold on to.

Hope has gotten us through some dark days. We have held onto it for dear life.

Yesterday, we received the best report we've had since we've been here at Texas Children's Hospital.

The doctor printed the report out from La Petite Belle's last scope and biopsies.
Look at the beauty of the sentence circled in red.

{Tears flowing over here, accompanied by a heart full of gratitude}
We have never heard or read that sentence: "No evidence of Graft Versus Host Disease."

The full report showed that in her esophagus, stomach, small intestines, and colon that there was no sign of GVHD. The only part of her GI tract that showed anything remotely like GVHD was her large intestines and it was mild/moderate in some scattered parts. This is awesome news!

The pictures from her scope even looked so much better than the previous scope a couple of months ago.

Now, with that being said, La Petite Belle still has a lot of nausea and cramping and issues related to her GI tract. Our doctor said that they ultimately go by a patient's symptoms and how they are doing clinically. While she is definitely better, she has gut issues that she has to deal with on a daily basis. She's so ready to feel better and not have to go through this day after day. The doctors are continuing to work on scheduled anti-nausea/cramping meds to help her.

The steroids are also continuing to be weaned. As they get weaned, other parts of her body will heal better and faster.

As far as her kidneys go, she is still on dialysis four days a week, four hours at a time. La Petite Belle hates it. Good news is she is producing some urine; actually more than she has since her long stint in the ICU. Now, we just need those kidneys to fully wake up and actually clear the toxins/waste in her body. So, even though she is producing urine, she's not clearing those things out. We're hoping to see even more urine and for her kidney levels to stabilize and become normal again.

And, last, but not least, her biggest challenge right now is physical therapy. She has had several days of standing for up to a minute with help. This is quite painful, but she's a trooper and does it anyway. She can sit up on the edge of the bed more and is now starting to work with physical therapy and occupational therapy separately each day, giving her two sessions a day.

When you think about La Petite Belle, please continue to pray for strength in her muscles/bones and complete healing of her gut and kidneys. God is a Healer and His promise is for "a hope and future" for our precious girl. We are overwhelmed by the support of so many friends, family, and others who are simply touched by La Petite Belle's story. Thank you from the bottom of our hearts!

If you'd like to purchase La Petite Belle's shirt, which she designed, you can go here
(10 days left to purchase)

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.


Em Carr said...

Awesome news. Praying every night for all of you

Judy Boudreaux said...

Praying for La Petite Belle daily. I purchased her shirt and I absolutely love it. Prayers for you and your family as well.

Judy Boudreaux

Judy Boudreaux said...

Praying for La Petite Belle daily. I purchased her shirt and I absolutely love it. Prayers for you and your family as well.

Judy Boudreaux

Dr. Greg Robin said...

How great to have good news!