Monday, August 31, 2015

Day +19

It's hard to believe that yesterday we began our fifth week in the hospital.

We've become very familiar with Texas Children's Hospital and the city of Houston. We know most of the nurses by name and even seen some of their engagement pictures and pictures of their dogs. I've also become quite confident in my getting around Houston and rarely use Google maps anymore. I hate the way it sends me places anyway. If I go a different direction from the hospital to the apartment, I play a game, like "Let's See If I Can Find My Way Home." It's the most entertainment out there nowadays.

We still do a lot of waiting.
Waiting, waiting, and more waiting.


La Petite Belle has definitely improved over the week. Her blood counts are going up. We were so excited a few days ago when the doctor said her ANC was 360. It had doubled in a day. We thought if it doubled again, we could be on our way home to the Houston apartment. Well, yesterday, it did not go up again, actually down just a tad, so the doctors gave her something to boost her white blood count. We will see this morning how well it worked.

Her platelets and hemoglobin have also been climbing higher and she hasn't had a transfusion in quite some time.

Our projected date to leave the hospital was September 2nd, which marks a month in the hospital. Because her ANC did not reach 500 yesterday, we know that we will not be able to leave then, but are hoping and praying that her ANC jumps and stays where it's supposed to and then maybe we could leave by the end of the week.

La Petite Belle is still battling nausea and vomiting. There are moments in the day where she is not nauseous and feels like she can eat, but they are few and far between. She tries, but it just doesn't work a lot of the time. Most of the time, patients do still have nausea once they leave the hospital and go home with anti-nausea meds.

We are thankful that we are starting to see progress in the right direction.

She hasn't been up and out of the room very much in the last week. She's been sleeping a lot, and just honestly doesn't have the drive to get out. It doesn't mean she doesn't want to, it just takes a lot of energy. But, she is missing her little buddy, Colten. We keep planning "play dates" but neither one seems to be up to it by the end of the day. But, there have been tiny glimpses of her old personality coming out here and there. That's been a joy to see!

All of last week was a whirlwind because I needed to fly home for a women's ministry event that I'd been working on for quite some time. It was a quick flight in, and then home, but I was so blessed to see good friends and blessed by the event itself. 

I actually ended up being honored at the event, which was totally a surprise to me. What in the world?!?! It caught me totally off-guard. It made me very uncomfortable because I'm not used to that kinda stuff and I was already a ball of emotion to begin with. Honestly, as I was there at home, I felt like the only place I wanted to be was back here with La Petite Belle in that tiny, boring hospital room. I did have a couple of breakdowns even while I was home.

I mean, does this look like the face of comfortable? I like to be the one doing the honoring, But, it was extremely humbling and I am ever so grateful.

Being home helped me to see that "home" really is where your family is and at this time, we are homeless, per se. Yes, we have a home. But, our home in Louisiana is temporary. Our home in Texas is temporary. Our home at the hospital is temporary. 

I was obviously overwhelmed while I was home, seeing as at almost 11:00 at night, I drove home to my old house that I sold a couple of months ago. Yeah. I can't even remember WHERE I live. It's nuts.

I know that as we get released from the hospital, it will be a little easier on our family. Believe me, we long for that day. This has been the hardest thing we've ever faced as a family. We each have good and bad days ... La Petite Belle and her parents.

Some mornings I still have to pinch myself when I think of whether this is real or not ... Is this my life now? Is this our life now? What is to come?

La Petite Belle finally had a breakdown of her own emotions. We'd been waiting for it. Sure, there'd been tears here and there, but nothing like this. She sobbed, uncontrollably, for over an hour. She expressed so many things to me that she was feeling and at one point cried over the fact that maybe she hasn't been a good "Christian witness" to her friends. Her heart broke at the fact that her friends might go to hell. Wow. 

It made me think about myself and when was the last time I sobbed over some of my own friends who don't know Jesus. That I don't even remember.

She cried about how her friends are consumed with unimportant things right now like popularity and boys and how that's SO not important. There are a lot of friends who have abandoned her at this point. I mean ... let's face it ... this is a long time to continue to keep in touch with someone who's not around, especially for teenagers living in their own little world. Actually, the same thing happens to adults ... outta sight, outta mind. I explained that people do love her and care for her, for all of us, but do have their own lives. And, that this is a great lesson in friendship for her at such a young age. She will truly know what a good friend looks like and how to be one. Because let me tell y'all something, there is not one thing fake or phony about La Petite Belle. What you see is what you get, like it or not. And, she is the BEST friend anyone could ask for.

She also cried about wanting to get married, see her sister married and have children, and not ever wanting her parents to lose a child. It was an amazing conversation that I got to have with her.

I was able to speak the truth of God's Word to her ... that He has a plan and a future for her. Always had; always will.

After that late conversation, she got the best night's sleep she's ever had in the hospital. It was a great release off of her. The things she spoke in that conversation were some heavy things to carry deep inside. We prayed and were immediately surrounded by the peace of God. It was a great night's sleep for both of us!

Today, when you think about us, pray for peace for La Petite Belle and that her cells would start to multiply. Also, pray that her nausea would start to subside and she could get some relief. We so appreciate all your prayers and support! We look forward to being home together, as a family, more than you'll ever know.

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

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