Monday, May 25, 2015

Counting the Good Days, Not the Bad

I'm learning to treasure the good days in the midst of the days that aren't so good.

That doesn't mean each day doesn't have moments of sadness or sets of issues. They do. But, sometimes the good so outweighs the bad.

Saturday, K Belle graduated from high school. It was a glorious, wonderful day!

There were moments though ... an especially tender moment, as night fell, family and visitors were gone, and it was just our little family at home, in the quiet. I donned my surgical gloves, gathered up my supplies, and began to flush La Petite Belle's PICC line, as I do every night. But, this time, she had a serious face ...  a sad face.

I asked her what was wrong. She began to cry.

I prodded her to tell me what was going on. Through tears, she said, "I just don't feel like myself." I knew she was tired. I knew it had been a long day, especially since we had just gotten home from a LENGTHY 15-hour doctor's appointment/hospital visit at 1:00 am that morning (a new PICC line had to be put in because hers had moved extensively thus causing transfusions to start hours later than expected, also causing us to finish the last transfusion in the hospital). She was emotional and hadn't been her typical, lively self that day.

She said, "I hate that I couldn't really be a part of K Belle's special day like I would've wanted to. I hate that all of you have to worry about me and my situation when it's her day." K Belle came into the room and asked her what was going on. And, I saw some true sisterly love, as she took La Petite Belle's hand and tenderly said, "You don't have to worry about it." K Belle lovingly reassured her that she had a wonderful day and she doesn't mind less attention from Mom and Dad {shifty face here}. 

Despite the tears, it was still a wonderful day and that tiny emotional moment actually made it more wonderful. I witnessed a moment where both of my children were truly being unselfish and loving.

Now, let's talk about the other sad moment, where tears were almost an issue.

The morning was beautiful. Everything was going as planned. We had made the decision that La Petite Belle would stay with my aunt instead of gong to the graduation ceremony, filled with people and their germs. I'm glad we did because I had a hacking cougher behind me. Cover your mouth, lady! La Petite Belle would meet us at the party afterward and had the job of helping to prepare for it ahead of time.

Beau and I headed out early, knowing that parking would be a nightmare with high school after high school were graduating seniors one right after the other. And, of course, there was a fair taking up tons of parking at the arena. Our city likes to book multiple events at one arena all on the same day, making parking nearly impossible.

We were less than a mile away from the arena 30 minutes before the event at a dead stop. Dead. Stop.  You know the kind ... where the light keeps turning green, but no one can move.We had made minimal advancements toward the arena and each of started to panic because we now had 15 minutes before the graduation started. We had to make a decision. I was on the verge of tears, thinking that there was a possibility we would miss her graduation. I couldn't have this. I needed this day to be a victory ... a good day ... no matter what the cost. I was on the verge of tears yet again.

I looked at Beau and said, "I am about to just get out of this car and make a run for it." He said, "Go. At least one of us will be there when it starts."

Really? Am I really about to get out on a main street in our city, filled with cars, and attempt to walk/run all the way to the arena. This was quite a distance to walk. But, I was a mama on a mission and I thought I could walk faster than the cars were moving. 

I got out of the car and headed to the intersection. I met another man there. We had a common goal. It's like we were partners in crime ... beating the system. We WOULD make it in time for graduation! So, we stepped into traffic, dodging cars because we disobeyed the hand signal telling us not to walk. There was no time for that because the light had not changed in 10-15 minutes, which caused the "don't walk" sign to also not change.

So, the walk/run began ... I even begged a police officer on the way to allow my husband, who had still not moved, to get out of line and traffic so he could see his daughter graduate. The response I got: "Call the school board. There's nothing we can do." Thanks, police woman.

I began to walk faster ... slightly jog. The little guy with me started to lag behind. He said, "How are you walking faster than me with heels on?" Listen guy ... I'm NOT missing my daughter's graduation. If I have to full-on run to get there in time, I will. Wedges or no wedges. Those suckers can come off at any minute and I will run barefoot on glass (which was a likely scenario where I was walking) to get there in time.

And, I did make it ... four minutes early, mind you. My hair was as flat as could be and I could feel the back of my dress damp from my sweat, but I didn't care. I had made it. I found my parents and had a seat, just in time to see my girl walk in. Beau made it in about 10 minutes after me. It's a sad day when walk/jogging is faster than driving.

The day was such an exceptional day! Amazingly proud of not just the accomplishments of my first-born, but more of simply who she is. 

K Belle ... your daddy and I love you beyond measure!

We were so blessed and thankful for all the family and friends who came out and celebrated her with us. Not only on this day have you made her feel special, but many of you have helped shape who she it today. I am grateful for you all.

Now onto more good days!

Tuesday, May 19, 2015

Plan B could be God's Plan A.

The medical field is not the only place where we like to have back-up plans. We have back-up plans in every aspect of our lives. Plan Bs and even Plan Cs, if needed. 

These plans make sense. Back-up plans are a good thing to have. Plans are good things to have.

But, I've come to realize, now more than ever, that our plans are really just that ... "OUR" plans.

We can plan as much as we want. Sometimes our plans work; sometimes they don't.

Plan A for La Petite Belle was that her sister would be a stem cell donor for her ... a perfect match.

Unfortunately, we found out yesterday, that K Belle was not a match for her sister. Yes, we were disappointed. It was a slim shot to begin with, but not slim enough for our God to work it out for us. I thought this could be what we prayed and hoped for ... that God would work this perfect Plan A situation out for us. That God would make it happen even if the odds were against us. But, it didn't happen.

We are taught to expect a miracle. To expect God to move. To expect good things for our lives. So, I did. And, I still do.

God could heal La Petite Belle in an instant. God could've made K Belle a perfect donor match for her. God could cause La Petite Belle's blood counts to miraculously go up. I expect that miracle to happen every time her counts get checked. Every. Time. It hasn't happened yet, but I still expect God to move. I still expect healing ... complete healing.

I don't know how God plans on healing La Petite Belle. All I know now is it's not through our Plan A, which was the best way according to the medical professionals. But, that's ok. While I'm somewhat disappointed, I'm encouraged in the fact that God will get us through this journey. "One day at a time, Mama" ... that's all I keep telling myself ... "one day at a time."

So, we move on to the "Plan B" which God can totally make our Plan A. He can use Plan A, B, C, D, E ... whatever we want to label it. He can use it to our advantage and to His glory no matter what we call it.

So, let's just call it "the plan for now" because it could change at any time ... here's how it will be unfolding in the next few weeks and months:
We will be starting immunosuppressive therapy June 1st. I don't want to get too technical with you guys and bore you to tears, especially since my knowledge has become so vast in all this {just call me Dr. Belle}, I could start to sound like a doctor myself and your eyes will skim over all the medical terminology and just scroll down to the bottom of the page. You can google "immunosuppressive therapy" if you're interested.

In a nutshell, the therapy includes three different types of drugs, which she will receive in the hospital over the course of 10 days. The drugs given help to accomplish one thing: killing the cells that are attacking the stem cells, thus causing the bone marrow to rebuild its supply of stem cells.We will be staying in ICU so that she can be closely monitored for any reactions to these drugs, not to mention the fact that her immune system will be compromised through this so there's always risks when that happens as far as infections go.

Until then, the pharmacy is ordering the drugs ... hello, not just any ordinary drug ... $50,000 drugs ... for one drug, mind you ... one drug! Yeah, crazy. Not a typical drug that pharmacies just have on hand.

We will also need to see a cardiologist to get a check on her blood pressure as precautionary measures before this treatment.

And, lastly the doctor will determine if her PICC line will be the best method or if we have to get a similar, more sturdy line in her chest. This was her main fear. She will be put to sleep and it would be surgically placed in her chest. However, surgeons will not operate or do something like this unless her platelets are 100,000 or more, which would require many transfusions beforehand. So, we're waiting to see what's the best way to approach that. The doctor does not want to have to deal with a PICC line that doesn't work halfway through treatment. Neither do we.

We have two weeks to get all these things taken care of before she's admitted.

We all have run the gamut of emotions through this. Please don't misunderstand me ... it's not that we don't trust God. We do. We always have and our trust only grows stronger the longer we serve and know God.

One minute you could be up ... the next hour, you're down. It goes for all of us. Mostly, Mom and Dad. This is definitely the most difficult thing a parent can go through. No parent wants to watch their child hurt ... physically or emotionally for that matter.

La Petite Belle struggles mostly with getting depressed about not seeing friends, not going to the pool, not hanging out in general. She's limited on what she can do. The nurse said she was in "bubble" mode yesterday morning after they read her counts, meaning her ANC (what fights germs and infections) was extremely low. But, La Petite Belle, feels totally normal. So, it's difficult for her to understand the severity of it.

I've been trying to let her do as much as possible ... having friends come over, allowing her to go a few places here and there, and to church if she wears that darn mask. She doesn't mind it at all. One girl said, "Why are you wearing that mask? It's not like we have Ebola or something." Mama almost lost it ... well, in my heart I did lose it ... but, then I kindly and sweetly explained what was going on to this girl. Duh, kid.

I hover a little. Just a little. Kinda my job.

So, that's the plan ... for now. God knows what He's doing. We may not know, but He always does. And, FYI ... the doctor said every test came back negative for every single possible cause for this. Every. Test. Negative.
So, there are no answers of what could've caused this. None.

But, it was not a surprise to God. He knew it was coming. He knew we would have to walk this out. He knows what's on the other side of it. We just have to trust.

Tuesday, May 12, 2015

This was supposed to be her time.

I've posted so much about everything we're going though with La Petite Belle. I simply have to post because for me it empties out my thoughts onto a page and frees space up in my brain for new thoughts. Space up there is limited these days and I need every nook and cranny.

Not only for that reason do I post, but also to journal as we go through this so that I can look back once we reach the other side on what I've learned and all God has done.

But, my thoughts are also with my precious other daughter, K Belle.

I am wracked with guilt over not being able to spend the time with her this last month and the coming months like I've always intended. I've told her this. Beau's told her this. And, of course, she understands. But, this was supposed to be her time. She says she could use less attention and it's all okay.

This is her last full week of high school. She graduates next weekend.

I had planned on spending mucho time with her, imparting as much maternal wisdom I had into her before she flew the coop.

But, my time with her has, of course, been limited. I'm trying to catch any and every moment to smother her with love and words.

There was senior prom ... no date, not because she wasn't asked, but because she just wanted to go alone. She figured she'd have more fun this way! I do love how independent she is. She really doesn't care what people think and does what she wants. Sometimes every decision related to this is not to my liking, but I love that quality she possesses.

She would've rather dressed up Oliver (aka demon dog) and taken him. Thank God, there were no dogs allowed.

And, here she goes with yet another dog ...

Now, I try to plan a graduation party. I'm not at 100% like I usually am when it comes to parties and such. You all know this is my area of expertise.

By the end of the week, we're hoping to know test results and plan out our summer.

As we wait, I try to be the best mom I can to both of my girls, who each need me now more than ever.  And, we try to live as normal a life as possible.

Monday, May 11, 2015

Be careful what you sing ... or say.

I firmly believe we shouldn't sing songs to God that we aren't willing to back up with our lives. Same thing goes for our prayers.

If we're going to say, "God, use me." We better be prepared for doors to be open to whatever area He chooses and then we should be prepared to say "yes".

With that said, there has been a nagging song lyric in the back of my head ever since our circumstances have changed exactly four weeks ago.

I know you will recognize the lyrics:
Spirit lead me where my trust is without borders ...
(Oceans by Hillsong)

I always thought about that particular line as I sang it in church, and especially as I lead hundreds of people in singing it with me.

I contemplated what that really meant and did I actually want that. Did they realize what they were singing with me?

What does "trust without borders" mean?

It means that I can say with my WHOLE heart, "God, I trust You in EVERYTHING!"

It's easy to pick and choose which areas we can give to God and trust Him with. That's trusting God with borders ... giving over certain areas, but then holding tightly to some areas that we don't want to give over to God. We like to keep control of those areas. And, we do that because then we don't have to make ourselves vulnerable to hurt. We keep it to ourselves to protect ourselves. It's human nature ... protection or self is part of what we do.

When we sing that line, we should be prepared for whatever may come our way. That's a HUGE statement to sing! Do you realize what you're saying to God? You're asking God to take you to a level where you can trust Him completely with anything and everything that will come your way.

God's been bringing that lyric to my remembrance, over and over again. "Remember what you said? Remember what you sang? Here's your chance to trust me more ... without borders ... in everything."

And, that's exactly what I've been attempting to do. Trust without borders.

To say to God, "No matter what, I will trust You. Even when I don't understand, I will trust You."

Now ... I know God doesn't cause something like what we're experiencing, but He definitely walks with us in it and always has a purpose through it. So, as we go on this journey, He draws close to us. He teaches us. And, we HAVE to trust Him more.

La Petite Belle will have her second bone marrow biopsy on Wednesday. This time the doctor will get a large sample for a second look.

I've been hoping and praying for K Belle to be a match for this possible stem cell transplant. I wanted that and have been praying for it because it's pretty much 100% success rate and then La Petite Belle would be healed.

Then, God brought those lyrics to me again ... Spirit lead me where my trust is without borders.

And, I realized I was putting God in a box {borders} and saying the only way La Petite Belle could be healed was through this perfect match transplant or miraculously. But, God showed me that He can heal her any way He wants through any means and definitely though treatment with less than a 100% success rate. It seems like God doesn't have to do very much with a 100% success rate.

So, I gave up control and have been praying differently ... "God ... whatever way You want to heal her, I'm good with that. It doesn't matter to me. You heal the way You desire to heal her."

That's not to say that K Belle being a match would be incredible! It would! We would celebrate that for sure, especially knowing that there's only a 25% chance she is (which is more like the kind of  percentage God likes to work with).

But ... if we have to go to other options, God can still heal. He is able. He is willing. Any time people came to Him for healing in the Bible, He never turned them away.

So, we trust without borders. We trust who God is. We trust He knows best. We just trust.

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.

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 ...