Friday, July 31, 2015

This girl continues to amaze me.

I've learned more than I even wanted or needed to know about bone marrow, transplants, blood, diseases, and the like. I've been absorbing medical information like a sponge. My brain is full of it.

I find myself explaining these medical things I've learned related to how La Petite Belle's diagnosis. As I explain, I start to use terms I have never used before. Most times I see people's eyes glaze over. At that point, I know it's time to wrap it up and just get to the point.

This is where I feel I will lose you in this post if I start to explain ALL the details of La Petite Belle's visit to the BMT clinic yesterday. So, I'm gonna break it down for y'all in it's simplest form. (That sounded so arrogant, like I'm a genius and know-it-all. I promise you I'm not.)

So .......

During yesterday's appointment, La Petite Belle got some platelets and we met with our nurse practitioners (Yes, we have two ... one's a newbie. That's why we have two.), whom we adore. 

Because Texas Children's Hospital is a research hospital, they do research. Great explanation, I know.

So, there are two studies that La Petite Belle will be a part of and we needed to give permission for that. One study just asks for her blood to study for future patients with her diagnosis and the other is a study on the emotional/psychological state of teenagers going through this process. She was pumped about doing this one, where she simply has to fill out surveys throughout the process, and she gets $10 for each one, with a total of $40. We joked about this being another "silver lining" to this process.

She filled out her first survey and got her 10 bucks. One of the questions was something like, "Do you ever just wish this would've never happened?" To me ... duh. My answer would be, "WELL, YEAH!"

But, her answer was this, "Well, no because obviously God has something He's going to do through this and use me in some way."

What a mature answer. I totally would've thought the opposite.

She admits that she's "tired and has a bad attitude" at times, which I totally get. But, as a whole, her outlook is amazingly positive. That's the biggest silver lining I have seen through this thus far. I am in awe of some of the things that she says. She just doesn't seem to be that worried about what is to come and has total confidence in God to carry her through. That's not to say she doesn't have moments of anxiety {we did have a minor freak-out moment Wednesday night when I had to drive to CVS to get Tegaderm to perform an emergency PICC line dressing change (which I'd never done) just to appease her and make her calm}, but she really is mostly positive and strong.

Yesterday afternoon, we met with our transplant doctor. He covered EVERY detail of transplant. He explained the chemo drugs La Petite Belle would be getting and all the possible side effects. And, he went through the timeline to Day 100.

It was so strange to see this on paper.

Day 100 = November 20th ... seems so far away.

That's her minimum time here. It doesn't mean we'll be going home on that day. But, we're hoping and praying that her recovery will even astound the doctors. She has been the picture of health until now and that is a great benefit to her treatment.

Now here's where I start talking all doctorly because this was an interesting finding from her bone marrow biopsy from Monday.

You see ... we all have 23 pairs of chromosomes in our cells, totaling 46. The thing that changed La Petite Belle's diagnosis was something present, or should I say not present, in one of her chromosomes, called "Monosomy 7" ... meaning one of her #7 chromosomes is missing. 
(Real medical definition: Monosomy 7 or partial deletion of the long arm of chromosome 7 (7q-) is a frequent cytogenetic finding in the bone marrow of patients with myelodysplasia (MDS) and acute myelogenous leukemia (AML). )

This Monosomy 7 was not found in the third bone marrow biopsy from Monday. When the doctors told me this, I asked what this meant. Did it mean she was not myelodysplastic? That she actually didn't have the MDS?

Long story short ... no.

Apparently, the Monosomy 7 can go away or be hidden or who knows what happens to it, but it can't be seen. They say it's still there. {There's an additional issue with trisomy 8 - three whole #8 chromosomes that I won't even get into and doesn't seem as important. I'm sure you're dying to hear about it.}

The doctor does not want to "under treat" this. And, because the Monosomy 7 was there, they have to treat it as such. If they would "under treat", it could come back. And, I say "under treat" because they would do less aggressive chemotherapy if she was only diagnosed with aplastic anemia. Transplant would still go on, but chemo would be different. This chemo she will be getting is VERY aggressive and will wipe out all of her stem cells; her bone marrow will be emptied out. That takes some hard drugs.

I have to tell you that God's hand has been in all this from the get-go. Do we want an instant miracle? Of course, we do. Everybody does. If you were sick or your child was suffering, you would want healing instantly. But, I'm learning that "quick" and "instant" is not always the best way to get things done. I mean ... look at oatmeal. Instant is good, but the time-taking, homemade oatmeal is way better. Ok, so oatmeal may not be that great of an example.

I'm just saying that there are many examples throughout God's Word where the people He used wanted instant fixes to their problems, but God had other plans. The problems always got solved, but in His timing, in His way, and it always turned out so much better.

So, instead of doing that thing that La Petite Belle says she's not doing ... wishing this never happened or wishing this was over ... I'm just going to look for God each step of the way, listen for His voice, watch Him move, and treasure the moments that He's going to give us ... moments with Him and moments with each other. He will work this out for La Petite Belle's good and He will use her through this, as she says.

We check into the hospital at noon this Sunday. La Petite Belle will be starting an anti-seizure medicine on this day to prepare for her first dose of chemo on Monday. The most common side effect to her first chemo drug is seizures. Join us in praying her through this chemo week, that her body would be strong and her side effects would be minimal to nil. I will continue to post as much as I can while we go through this journey. I believe it's not only good to share with others what's going on, but also good for me. Thank you for going on this journey with us through your prayers and support!

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!