Tuesday, April 28, 2015

We have a date.

And, I don't mean dinner and a movie. Honestly, that kind of stuff has been the farthest thing from Beau and I's minds the last couple of weeks. We've barely had any moments alone at all. And, if we are alone, we're exhausted and asleep.

I kissed and hugged him this morning, after apologizing for throwing his good shoes in the garage sale pile which nearly sent him into a nervous breakdown, and told him with confidence, that we'd have a few minutes alone soon. Hopefully. Maybe.

The date I am referring to is the date for our blood tests to see if we're a match for La Petite Belle. The date is next Monday. The nurse said it typically takes even longer to get an answer than we got. I'm thankful that God helped speed this along.

So, we will drive to Houston Sunday afternoon and spend the majority of the day at Texas Children's Hospital on Monday, meeting with the doctors - one doctor from the hematology department doing the testing and the doctor from the transplant department. We are not really sure when we will get the results back from the testing, but praying for more quickness there too. Waiting weeks for results, while my child is getting transfused every week is not ideal. You'd be surprised how vocal and protective mamas can get when it comes to their babies. I ask a million questions and expect answers immediately. Protection mode is in full force here.

So, until then, we wait ... and we go for infusions.

Tomorrow, La Petite Belle will be going for another transfusion ... two more bags of platelets and now, a bag of red blood. She needs both this time.

While the doctor also would like to boost her white blood cells, he's waiting until after the testing because this could affect the test. So, that may happen later next week. Until then, we use massive amounts of hand sanitizer and La Petite Belle will be wearing a mask this Sunday to church or any other crowded places. Y'all ... she's so ready to get out and not just to go to the doctor or hospital, as she told me yesterday. I did allow her to go to her small connect group last night. She said: "No offense, but you don't have to stay with me." She may be getting bored of me. I don't understand why. I'm pretty much the MOST fun person in the family to be home with. I even got outside and kicked the soccer ball with her for a bit a couple of days ago. We regretted it later when the bandage for the PICC line was hanging by a thread because she was sweating a bit. But, she felt refreshed, mostly from laughing at how "horrible" of a soccer player she says I am. Whatever. I'm not that bad.

We start Homebound today. A teacher will be coming to our home to help La Petite Belle finish up the school year. We will be doing this twice a week.

Everyone asks how we're doing. That's such a loaded question. I don't think anyone really wants me to go into it, so I say, "good." And, we are. We are dong well. God is sustaining us through this. 

But, our family does run through the gamut of emotions in a day, even La Petite Belle herself ... up and down, up and down.

In the midst of caring for her, which has become like a full-time job, we've been trying to be as normal as possible. I still have to work. Beau still has to work. Thank God that both of us have flexible jobs and great bosses who understand our circumstance right now!

Yesterday, as Beau stayed home and I went to work half the day, someone said to me, "You're still smiling."

And, I thought ... Am I? Am I smiling? I don't feel like I'm smiling.

But, what else can I do?

I have to smile.

I can only smile because of Jesus.
I can only smile because of the hope I have.
I can only smile because God is sustaining me through this.
I can only smile because I serve a good, good Father.
He loves me.
He loves La Petite Belle.
He loves our family.

So, if I'm smiling ... that's why.

I'm trying to keep as much normalcy that I can in our lives right now, which is very difficult. But, I'm trying.

The enemy would like nothing less than our family to be divided right now. I can see it so clearly. But, it's not going to happen. God will bind us closer together than ever before. Although this is a hard thing, and each of us are experiencing different emotions at different times, God will prevail. We can't let anything get in the way of that. And, the attack is fierce right now, but our God is fiercer.

In the meantime ... normalcy.

In the meantime ... our house is for sale. Tell all your local friends to come buy our house.

In the meantime ... K Belle's high school graduation is approaching and I'll be sending announcements out this week. What in the world? Where did the time go?

In the meantime ... Work.

In the meantime ... my brain may not work as well as it did before. And, we all  know what percentage I was working with before all this. So, pardon me if I forget or don't have a clue what's going on.

And, please, oh please ... don't be weird around me. I'm still the same old me. Same old me going though some hard stuff. But, it's still me.

Again, we appreciate all the prayers and support!

Monday, April 27, 2015

Two Weeks

Yes. It's been only two weeks since our world drastically changed. It feels more like it stopped to me. It feels like these last two weeks have been an eternity.

The weekend before that, everything was normal. I recall a specific drive to work where I was thanking God for how blessed I felt and how great everything was working out in our lives. So many wonderful things on the horizon for each of us as a family ... selling our home and moving, K Belle's graduation and getting ready for a move to Australia, La Petite Belle playing her first soccer game with a new team, La Petite Belle going to high school, Beau getting some extra work, and a new position at work for myself. Some really fantastic things coming up!

While these things are still coming up and still fantastic, in that moment of news about my baby girl, I didn't care about any of them. Not one thing, actually.

All I cared about was my baby girl's healing. And, how this was going to get accomplished.

One evening while we were in the hospital, after the doctor had told us the possibilities, La Petite Belle said, through tears: "I just wanted God to heal me instantly." (I had told her that sometimes God heals instantly and sometimes he uses doctors and medicine.) This was a walk we did not want to have to take. But, here we are. I know God will walk us through it. We're holding on to the hope He can only give us.

There have been a couple of good days or should I say moments, where we've been able to forget about the circumstance and laugh. Moments also where we've been able to enjoy the company of others. Moments where we've been able to enjoy each other's company.

And, then ...

we have to stop and do things like flush a PICC line.

My nurse-mom has come by each night to flush her line, while we watched. Last night was the first night I actually donned the surgical gloves and did it myself. It's not just flushing, it's also adding the Heparin, which helps it not to clot in the line.

La Petite Belle was nervous for me to do it probably because I've been so nervous to do it myself. So scared I could mess something up. I mean ... this is pretty important stuff here. I'm still amazed that the medical professionals trust me with this.

My mom watched as I stated each step before I did it, still with questions. There's two lines to flush. This isn't a quick process especially when you're as nervous as I am.

I may have made my nurse-mom proud last night. She'll come again tonight until she says I'm totally confident. It may take a few more times. Glad to have a mom who teaches nurses for a living to do stuff like this. Score!

Today we go back to the doctor ... PICC line check and new dressing, check levels, and possibly platelets.

And, we wait yet longer for Texas Children's Hospital to just call us. They've had our information since Wednesday so I'd say that's plenty of time to get the ball rolling with just scheduling our testing. Maybe I need to drive over there and push that paperwork through. Do I need to type it in myself? I simply don't understand why this kinda stuff takes so long. I know ... there's lots of people. Yeah, yeah, yeah ... since Wednesday guys and gals ... Wednesday.

More to come ...

Thursday, April 23, 2015

Now what?

PICC line is in for La Petite Belle. She got two units of platelets in her also. 

We were at the doctor's office from 9:00 am to 4:45 pm. It was a long day. A very long day.

While La Petite Belle was receiving her platelets, Beau and I had a long conversation with her doctor. I thought maybe his brain would explode from the amount of questions I was asking him, but nope. He's super amazing! I totally love him and am thankful that we have him. He's a smartie ... definitely what you want in your child's doctor.

I, of course, am ready to get this ball rolling. Come on, people ... let's get a move on! But, unfortunately my urgency as a mother is not felt among everyone else who sees this kinda stuff all day long. It's extremely urgent to me because this is my baby girl here.

So, now we are simply waiting on a phone call from Texas Children's Hospital about everything ... insurance, procedures, and most importantly, our testing.

We have made a slight change in our plans as far as treatment for La Petite Belle after our discussion with the doctor. The first plan and best option is us (Beau, K Belle, or myself) being a perfect donor match for La Petite Belle. We're talking 100% success rate with a perfect match from her immediate family. However, once we start looking at an unrelated match, the success rate drops to 75%. So, now we have opted for immune therapy if none of us are a match for La Petite Belle because that success rate is 80%, which pushes it up to second place. We would look to the unrelated donor only as our third option, which we are praying we won't even get to.

That's where we are right now.

And, right now, we wait. Just waiting on the phone call from the hospital. Just waiting on the test. Just waiting on the results (which take up to 10 days by the way). So, we're still a few weeks away from having answers.

The hardest part of yesterday was when the doctor said La Petite Belle could not be in crowded places or around a lot of people because of her risk of infection being so high unless she wore a face mask. Pretty devastating for a 14-year-old girl. School was already out, but now church is iffy. We did grab some masks on the way out and will play this by ear. Otherwise she's home. Maybe a run to the store or a less populated place, but not the mall on a Saturday unless she wears the mask.

She was very down yesterday, pretty angry and sad about the whole situation. I just cried some more. No matter how much I try not to cry, I still do. La Petite Belle said, "If anyone should be crying it should be me." I laughed through my tears. I said, "I'm crying because I hate this for you and you're my baby girl. That's all."

The only tears she shed yesterday were from some pain she was having with her PICC line toward the evening. It's sore and hurting a bit, but supposed to get better.

Y'all ... she's amazing. I'm totally amazed at the strength this girl has. So brave.

She could care less about the procedures, needles, blood, any of the scary stuff. She only cares about not being able to do the same things all of her friends are doing. I told her this would only be temporary, but temporary for a teenage girl seems like forever.

Now, I need to learn how to flush this PICC line every night and put the Heparin in it, which prevents it from getting a clot in it. I'm terrified of it. The nurse showed me, but still I am overwhelmed. Thank God my mom is a nurse! She's going to come over each night and continue to show us until we feel comfortable to do it ourselves. Thank you, Lord!

The dressing will also need to changed every week. We go back to see the doctor Monday where they will, once again, check her counts and determine what else she needs. Platelets only last 5-7 days so it's possible she will be getting them every week until decisions are made and procedures are scheduled.

That's where we are. We wait. We pray. We believe for a complete healing.

Wednesday, April 22, 2015

Day By Day

Today's the day La Petite Belle will be getting her PICC (peripherally inserted central catheter) line in. Her veins are done. They're just collapsing now. This line will allow her not have to go through multiple attempts at getting needles in every week. This line can stay in her for up to 6 months and they can easily give her blood or medicine.

After the PICC line gets put in, she will receive two units of platelets. Her platelet count is very low right now. Red and white blood counts are still low, but a tad higher than they were on Friday. I give credit to Jesus and beets for that. Yes, I've been trying to build her blood any natural way I can ... a good blood-building vitamin with lots of B vitamins in it, trying to get any beets in her that I can (not much success here, but it's coming), and dark, leafy greens.

When the nurse called me about the PICC line and explained what it was, I quickly tried to get off the phone, telling her I'd have to discuss it with my husband. But, I really needed to get off the phone because I was starting to cry.

The words "more permanent" and the explanation of how the line will end near her heart made me lose my breath. I couldn't breathe. My own heart ached and tears filled my eyes.

No, I do not want anything like this even close to permanent for my child. I was angry.

I cried. Alone in my bedroom, I cried. In fact, I want to cry just typing the words "I cried" because I can still feel the ache of that moment.

I do not want this for my child at all.

I could deal with this a lot better if it were me and not her.

I prayed like I do every time I start to lose it.

I prayed again that God would heal her of this. I prayed for a miracle. I prayed that God would renew my mind so that I can always trust and never doubt. I prayed that God would do what He's promised in His Word. I reminded myself that God is a good Father ... the BEST! What good Father doesn't want the best for His child? A good Father who loves my child even more than I do definitely wants the best for my child, His daughter.

These are the prayers I pray throughout the day because I have to. It's the only way I can make it through the day.

I have immersed myself in worship music. It really does change the atmosphere wherever you are and helps with whatever you are going through. I don't only need my atmosphere changed, I need my mind changed and my circumstance changed.

So, today as we go to the doctor's office for this extended period, I will sit next to my baby girl and pray. And, sometimes my prayers consist of only "Jesus, I need you." Because that's literally all I can say.

And, for the rest of the week, I will take each day as it comes. I can't look ahead. I just can't.

I can't make plans. I can't schedule anything. I don't know what we'll be doing next week or even what the end of this week will hold. I just don't know.

All I do know is that my number one priority right now is getting my baby well. That's it.

There are other things on my mind ... K Belle's graduation, her graduation party, putting my house on the market by next week, making sure my house is totally ready to be put on the market next week, getting my house sold quickly, my newest position at work, the things I need to do at work in this new position, and then there's the whole moving once our house does get sold ... the list goes on.

But, it's hard to think about these things when that one thing consumes my mind.

And, then ... I pray.

And, pray again.

Jesus, help me.

Tuesday, April 21, 2015

Smart Girl

It's amazing how your life can change in a week ... even in a day ... or a moment.

La Petite Belle is actually the MOST full-of-life, vibrant, happy child I know. She's pretty much been that way her entire life (minus that six months or so where she cried incessantly and only wanted me ... I wasn't a fan of that phase). One day, she just turned a corner and became Miss Personality.

But, I don't think the young boy who asked her to the 8th Grade dance thought she was so personable when she rejected him a couple of weeks ago. 

She relayed the story to me just Sunday night, as we made our way home from the ER. (Yes, we were at the ER Sunday night ... actually getting back home at 2:00 am, Monday morning. Her blood levels needed to be checked because of a low-grade fever she had, along with a bad headache and sore throat. All tests came back good enough for her to not be admitted, but she will be receiving more platelets Wednesday.)

I've spent a lot of time with La Petite Belle the last week. Been with her 24/7, even sleeping with her most nights last week. This has given us quite a bit of "bonding time." 

She proceeds to tell me that this boy asked her to go with him to the 8th Grade dance. And, she said the exact same thing I said to her daddy when he asked me out over 21 years ago, "Just as friends, right?" It worked out for her father, but I don't think it will for this boy.

The boy responded by explaining that he didn't just want to go as friends; he wanted to go as a real date. To which she responded, "I'm not interested in having a relationship right now."

Wow. Proud mom moment.

Except for the fact that I did feel a little bad for the poor boy, because she began to explain to him the reason why she wasn't interested in relationships at this time in her life. I laughed when she was describing this conversation with me. 

But, here's the best part ... she told the boy that he should ask one of her friends to go with him because she didn't have a date. Look at how cool she is. So, supposedly he's going to go with this other girl. He's going with her as a friend though. {more laughter}

La Petite Belle thinks she'll have more fun just going with her friends. I agree. Smart girl.

We're hoping that she will be able to go to this dance that she's waited so long for. 

Pray for us as we are making important decisions about her finishing out the school year at home with her current condition. We feel she would be safer at home than headed to school with a thousand kids every day, and we think she can finish strong here at home. I am headed to the school in the morning to discuss our options.

La Petite Belle will be having a PIC line put in on Wednesday, and she needs more platelets. She'll receive two units of platelets after her PIC line is inserted. This procedure will take 4-5 hours. Keep us in your prayers on Wednesday, too, as she goes through yet another procedure.

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! 

Monday, April 13, 2015

Back to the Basics

I think Christians, including myself, tend to complicate Christianity. 

It can become just a long list of dos an don'ts and confusion.

God has been whispering these two words to me: Love. Serve.

That's it. That's what Christianity is.

Love God. Love people.

Serve God. Serve people.

We've all heard the Scripture ... "Love the Lord your God, with all your heart, soul, mind, and strength." That's an easy one. Once you grasp who God is and what He's done for you, loving Him is easy.

Now, the loving-people part can be a little more difficult and tricky. I've come to learn that loving people gets easier once you understand what God's command for us to love one another is all about. He didn't say anything commanding us to like everyone, be best friends with everyone, hang out with everyone ... He just said "love."

When you truly love God, loving people is easier. Because the love He wants us to have is about showing care and compassion for others, desiring the best for them, helping them, and wanting them to have a real relationship with God. That's the love that God wants us to have for others.

But, God goes even further ...

Not only are we to love, we are to serve. That requires us to die to ourselves, die to our own desires, die to our (hard one here ...) pride. It requires us to put the needs of others above our own needs when society says we should put ourselves first. I mean, we deserve it, right? We work hard. We're busy. We have lots of stress in our lives. Our needs should be first and foremost. Unfortunately, that's not what God thinks.

Don't get me wrong. I do like to have time for me. We all do. But, we should be at a place in our lives, as Christians, where the needs of others should always trump the needs of our own.

When you search the Scriptures, every time we are given instruction on how to live, it always comes back to two things: Loving and Serving. And, when you truly love, you serve. It's not like they are separate entities. Serving naturally flows out of loving.

My prayer has been over the past several years that God would continue to put in me a true love for people. To see them with His eyes. And, if I could see them with His eyes, I would adore them.

God, help us to see others with Your eyes and love them with Your heart.