Monday, April 20, 2015

The Diagnosis

I have told this story countless times this week. It's almost not even real to me what we have just gone through and what we are facing. And, here come the tears as I start to write ...

A few weeks ago, my youngest girl, the one and only La Petite Belle, whom I've written about for years here, started to show some bruising. Not just your regular old bruise here and there, but extreme bruising. Bruises were showing up all over her arms and legs, along with patches of broken blood vessels (purpura). 

I made her an appointment to see the doctor. I really didn't think much of it since La Petite Belle is often bruised a lot due to how hard she plays, and soccer had just started for her. If you know her, you know she will go to extremes to get the ball or win at any cost. Kinda competitive ... from her dad, of course {wink}.

So, I got in quickly with a doctor, who didn't seem to think it was too much to be worried about, but ordered blood tests to be safe. After all, La Petite Belle was acting totally normal. No symptoms at all but the bruising. No rush to get the labs done that day. We would wait a few days when Beau or I could leave work and bring her. However, by the weekend, she informed me that she had been on her cycle for two weeks. That's when I got a little worried, and Beau took her at 8:00 on Monday morning to get her labs done.

About an hour later, I received a phone call from the doctor. He told me to take her immediately to the ER. Her platelet count was a 5, which normal is 150-350. Platelets give your blood the ability to clot, which also explained why her cycle had not stopped. She could have cut herself or hurt herself somehow at school and her body would have not been able to stop itself from bleeding. Thank God I only work about five minutes from her school. I rushed over, and soon after, we were at the ER, where we would stay for the entire day, until we were admitted late in the afternoon.

La Petite Belle has always had a fear of needles. She was stuck multiple times ... more blood drawn, more tests, then the IV. By the end of the stay, her fear of needles seemed to dissipate.

We were admitted because her platelets were so low that she needed a platelet transfusion. We were also admitted because, not only was her platelet count low, but her red blood count, and white blood count. All three were low. The blood tests could only tell us so much. We would wait until the next day for more detailed results. 

La Petite Belle received her transfusion throughout the night. The doctor came in the next morning and told us that the blood tests were inconclusive and he would have to get the results he needed from a bone marrow biopsy/extraction. As he said, "When you look at the bone marrow, it's like looking into the future." What happens in the bone marrow, the building blocks of the blood, will eventually happen in the blood.

We questioned him on what this could be. What would he be looking for in the bone marrow? There were three things that could be causing La Petite Belle's condition: a viral infection, aplastic anemia, or leukemia. 

That was something we never thought we'd have to face.

When La Petite Belle heard the word "leukemia", she got extremely quiet, as we all did. Once the doctor and nurses left the room, she began to cry. I cuddled up in the bed next to her, held her, and cried with her. Beau began to cry.

But, through our cries, we spoke truth to La Petite Belle. The truth is that God is a healer. God is good. God loves us. God doesn't want La Petite Belle sick. God still has great plans for her, just like we've told her all her life. We prayed and believed and hoped for the best. We quoted Scripture to her. Countless people came and prayed for her, as we continued to hold onto our hope.

The next morning, the test was over pretty quickly, and the doctor immediately checked the labs before sending them off to the pathologists. He gave us a preliminary diagnosis of aplastic anemia. We were extremely grateful it was not leukemia and continued to pray for an even better report after the final labs came back. I, of course, began to research aplastic anemia since I had never heard of it. No one had ever heard of it. In fact, our doctor, who has treated hundreds of leukemia patients had had only one other aplastic anemia patient in this area. It is very rare. Only one to two people per million per year are diagnosed with aplastic anemia. That's about 300-600 cases a year in the U.S.

Aplastic anemia is a disease of the bone marrow. The bone marrow stops making enough red blood cells, white blood cells, and platelets for the body. Any blood cells the marrow does make are normal, but there aren't enough of them. Again, we were thankful it was not leukemia, but this was not a good diagnosis.

Because La Petite Belle had received a second platelet transfusion, her count was good enough to go home the day after her procedure. The doctor was convinced it was aplastic anemia and told us to start thinking about how we wanted to treat it. We would meet with him the next day after he extensively studied all of her lab work. La Petite Belle was able to go back to school the next day and perform in her theatre show. She complained of headaches, but seemed to be OK for the most part.

We met with the doctor Friday, where he confirmed his original diagnosis. La Petite Belle had more blood drawn to show her levels. The reason she was having the headaches was due to the fact that now her red blood count was low and she was very anemic. She will most likely need a blood transfusion when we see the doctor later this week. Until then, we keep watching her, almost like when she was a baby. I actually checked in on her Friday morning to make sure she was still breathing, like I used to do when she was a newborn. I think all mamas do that kinda stuff early on.

We discussed treatment with the doctor extensively.  He is awesome, takes his time, and explains everything in detail. The best treatment possible is stem cell transplant, which is what we have opted for. The doctor will be contacting Texas Children's Hospital (the hospital we have chosen) this week, to discuss how they'd like to proceed. We're hoping to be tested as donors when La Petite Belle goes to check her blood levels this week. Immediate family is always tested first and we're praying one of us is a match. However, the hospital may want us to go there to be tested. We will know more this week.

If one of us is not a match, then the doctors will search in the donor database for a match there. The doctor said that people have a 75% chance of matching a donor in the database. That's a pretty good percentage if one of us is not. The second option of treatment is immunosuppressive therapy, which we would consider after we have exhausted the other. But, we believe there is a match for La Petite Belle.

Until then, we just watch and wait. That is the hardest part. This mama has a broken heart. I know my God is bigger than any disease or any sickness or any circumstance that would come our way. But, watching your baby go through something like this is gut-wrenching.

So, what do I do in the meantime? I pray. I cry. I talk.

I spend most of the days just taking my thoughts captive. Our minds can go places they were never meant to go. As a thought comes into my mind, I may or may not start to tear up. I have to immediately cast that thought down, ask God to renew my mind, and begin to speak the truth that I know about God, who He is, and what He wants for us. It's all good.

So, now this blog may be filled with Debbie-Downer-type of posts. That's just the way it is. That's just where I am right now. I've gotten onto this roller coaster of emotions and events, and I'm longing for the day that I can get off. It's coming, I know. But, right now, I just went down that first drop and I'm scared and holding on for dear life. I know that God is on our side and He's with us always. At the same time, I feel scared, I can feel peace because I know again, He is ... well, just HE IS ... He is everything I need, everything my family needs, and everything La Petite Belle needs.

I have had this song in my head all week and La Petite Belle was even singing it yesterday morning ... these lyrics here just confirm that Jesus' name is above any name, and that includes the name of "aplastic anemia" ...

God is fighting for us,
God is on our side,
He has overcome, yes, He has overcome

We will not be shaken,
We will not be moved,
Jesus, You are here.

I will live, I will not die,
I will declare and lift You high,
Christ revealed and I am healed in Jesus' name.

We appreciate your prayers for our sweet La Petite Belle! 


sara said...

Daphne, I have been praying for you ever since I found out on FB and will continue to lift you and your family up. Praying a perfect match for you girl will be found quickly.

Julie said...

Praying for all . . .

The Hat Chick said...

My soccer girl and I are praying for your soccer girl. I will be watching the blog to see if you end up in Houston.

amy foreman said...

Praying for your sweet Katie

B & C said...

Standing in the gap in prayer, may God open every door that needs to be open! Protection as you wait, and the peace that passes all understanding for you all!

ThePineappleMamma said...

We've been praying over here too and will continue to. ❤️