Tuesday, May 5, 2015

And, now we wait some more.

Yesterday we had our visit with the doctors at Texas Children's Hospital in Houston.

This all still doesn't feel real to me. It's like I have a new life and I can't believe this is actually happening to us.

It was even more surreal as I sat in the waiting rooms with countless numbers of precious bald-headed babies and many other children in masks and wheelchairs. My heart was saddened. Not just saddened for my own child to have to go through something like this, but for all these children who are enduring these things when they should be concerned about playing and enjoying their friends. It just really broke my heart. And, I know it must break the heart of God.

If He is a good, good Father, He loves all of those babies and wants them well. And, I know He is and He wants my baby well.

We were at the hospital pretty much all day meeting with the hematologist and then the transplant doctor. Both were fantastic meetings. There was extensive discussion and the hematologist took more blood for more tests. 

The bit of news that I had not heard yet was that Aplastic Anemia is caused by something. There is something that triggers something like this. It doesn't just appear.

All of the tests for what could have caused it have come back negative. So, we don't have a cause. But, they are going to look at some genetic things through more testing.

There were a couple of additional tests that the hematologist ordered and more blood was drawn. And, then she said that we needed to another bone marrow biopsy to get a larger sample because of the lack of cells that were present in the previous sample. That looks like something we will be doing next week with our doctor here. Another hospital stay ... yay.

Basically, they will rule out everything that could be an underlying condition or exposure to anything as a cause because this could also affect the way this is treated. This could have been brought on by something as simple as a virus. That's crazy to me. But, true.

The doctor asked extensive questions even about Beau and I's health, K Belle's health, any little problem we ever had, my pregnancy, La Petite Belle's birth, family history, and so on. We covered it all. She was extremely thorough and we loved her.

When the doctor said this diagnosis qualifies La Petite Belle for Make-A-Wish, it struck me a little hard. But, she said that the foundation is not just for children who are dying, but children who have a diagnosis which requires lots of treatment and extended hospital stays, etc. That made me feel a little better. Of course, La Petite Belle was thrilled about that part. But, we won't even look into something like that until much later anyway.

After spending the morning with her, we went to meet with the transplant doctor in the afternoon. He went over the same things and examined her again.

We all got our blood drawn to be tested for a match for our sweet girl.


We learned that parents are not usually a match for their child, but there are instances where they have been. We each are half-matched, which means half of what La Petite Belle needs matches each of us. That's why a sibling is the best match for this because they get the same type of antigens (HLA - Human Leukocyte Antigen) from each parent. The statistics say that one in four siblings are a match. Well ... she's got one. And, that's all she really needs is one. So, we're holding onto hope that she is the only one she needs.

The doctor went over the entire procedure, risks and all, benefits and all. But, didn't want to get too far ahead until we had the tests back.

So ... here we are waiting again.

He says we could have the tests back as early as next week. Then, we will make decisions on treatment.

We spent a lot of our time laughing and giggling like we always do. I find that always stays the same no matter what we're going through. The doctor also said that one of the other positive things that will come out of this is that we will grow closer together as a family. I saw that happening from the beginning.

And, then .... K Belle left her bag at a restaurant in Houston ... yep, wallet and all. We discovered this as we unpacked our vehicle three hours from there. Apparently, someone stole it from the restaurant. Not cool. 

See! We're already growing closer as a family ... getting new driver's licenses, canceling debit cards ... all kinds of fun.

Thank you, Lord, for getting us through this.

1 Comment:

thirstysouthernsoul said...

Still praying for y'all.