Tuesday, October 13, 2015

People want to hear good news.

That's just another conclusion I've come to through this journey we're on.

People don't want to hear bad news. They don't want to hear about someone feeling worse or someone's situation getting worse. 

I think the reason they don't want to hear bad reports or news is because it forces them to try to counsel or say something positive. You see ... people really don't know what to say when bad things happen. They don't realize that it's okay not to know what to say. It really is okay. Even if they just sit there in silence or hold a hand or give a hug, doing that and not saying a word is really okay and honestly, much appreciated.

On the same hand, I don't like to give bad news. I don't like to say we're having a hard time because the opposite is also true: I don't want to make people feel uncomfortable or awkward for not knowing what to say.

So, guess what I say EVERY TIME?

We're good.
La Petite Belle is good.

Because "How are you?" is really just such a loaded questions.
Ain't nobody wanna open that can of worms?!
So ... we're good.

With that being said, we got a not-so-good report last Monday involving La Petite Belle's blood counts, resulting in more not-so-good reports about having to do another bone marrow biopsy. We were all less than thrilled about that one. But, you can imagine how La Petite Belle felt. There were tears.

That day was a really bad one for me. I sat in the waiting room crying ... trying to stop crying ... then crying again. I was the lady crying in the greeting cards aisle at Target while reading through all the "daughter" birthday cards. Every card made me cry more, knowing that this news came the day before her 15th birthday, which I had wanted to be such a great day of celebration.

The news was concerning her white blood counts. They kept decreasing, low enough to where she was neutropenic again. She was given another injection to boost counts, but that only worked a little. The low white blood counts didn't phase me as much as the news that was to follow. La Petite Belle's bone marrow had already been suppressed by some medications she was getting and her white blood cells were fighting that nasty CMV virus so we didn't expect them to be super high. It takes time for this fresh, new marrow to recover after fighting a virus.

The other bit of news was that there were some of La Petite Belle's own cells showing up again. With the disease she was diagnosed with, we don't want ANY of her cells to be present. She needs to be 100% donor. Her not being at 100% donor is a very bad thing. That's all I'll say about that.

The biopsy was done last Wednesday. We got results on Friday that all three of the tests that were done on her bone marrow were negative for disease. Great news, right!? Yes! Thank you, Jesus!

We were able to relax and have an awesome weekend with great friends. La Petite Belle was able to spend some time with one of her best friends, which was such a special treat for her! And our sweet K Belle also came over for a visit.

She and I got to go to church and eat a yummy lunch.

Oh right ... and we met Brian Houston and as they rushed us through the line, they took this gem of a picture. This was just before I put my peace signs up. Great job, picture-taking lady.

I was expecting a great clinic visit yesterday. I just knew La Petite Belle's counts were going to be amazing. Well ... they weren't amazing, but good. They were a tad bit higher than before on each level. I was thankful for that. The doctor told us that we were just going to wait it out some more. She is still neutropenic and her white blood counts are still low, but she is producing more cells. So, we wait some more. They are moving in the right direction, but, of course, we want them to move it along way more quickly.

The doctor also told us there was still another test result to get back and that's the test showing donor cells vs. La Petite Belle's remaining cells. We will know something about that this week.

She is off of all her medications except for Vitamin D and a few over-the-counter things. The doctor weaned her off of her drug that prevents Graft-Versus-Host-Disease early so that her donor cells could attack any of her own cells that might be remaining. We are hoping and praying for NONE of our girl's blood cells to be remaining and that her new marrow would just continue to grow.

Thank you for praying with us!

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.