Sunday, September 3, 2017

Escape

I've been wanting to try one of those escape rooms. You know what I'm talking about, right?
It's where you get locked in a room, and have a certain amount of time to figure your way out based on the clues you're given. It's a puzzle. I don't know how good I'd be at it, but based on my TV detective skills learned from Law and Order and CSI, I feel like I'd be amazing.

Unfortunately, I live in a real-life escape room right now. 

It's an escape room of heartache. This type of heartache you cannot escape And, I don't know if I'd even want to.

It's a room filled with reminders of the past, great times with my Katie girl, and horrible times we lived the last few years since her diagnosis.

There is literally no way out of this room. Sure, there are a million "clues" of how to get out, but leaving would be forgetting, blocking the hurt from my mind, and "escaping" only by denial. So, I sit in here, for now. The difference is the door's not locked. I can walk out any time I'm able. I just don't know when that will ever be.

I can't escape the heartache no matter how hard I try.

I try to stay busy. That's the key, they say. It really does help to keep your mind busy. But, there is always a moment where a person has to just sit down, just be still. That's when the heartache is more intense.

Believe it or not, I have leaned into this heartache. God, it hurts.
But, I don't want to miss a single thing God is going to say to me. And, I don't want to forget anything about our Katie.

We leaned in immediately after Katie's passing. We looked at photos after her passing, talked about her every day, shed many tears over the things she would miss out on that she wanted to do. Then, realize she's not missing out on anything, we are. We're missing out on her and the life she'd be living on earth.

We didn't wait to do this. We went through all her things, touching them, talking about what they meant to her, gave away some things to people who were important in her life, and watched video after video of our sweet girl. 

Some people can't deal with it. They box things up, only to have to go back years later to face it. 

This pain is inescapable. It's not going to go away with time. It will just get more bearable.

I wonder how different our lives would be if we leaned into every heartache, every pain, every trial. Why tiptoe around it? God knows it's happening to us. Why don't we face it head-on? 

That has become my posture in this and with all things. 
Just lean in.
Face it. 
Deal with it.
Ask God what He wants to show you through it.
Ask God how you can give Him the most glory through it.

We're in the midst of this process right now. 

We have planned our own little escape for this month. At this moment, it's almost 5:00 am, in Sydney, Australia, where we will be for eight days. Jet lag is in full effect, after our over 30 hours of travel to get here. We've been up since 3:30 am, missing Katie, talking about Katie, crying over her being gone. 

We will never be able to escape her memory and the impact she's made on our lives. For the rest of our own lives, she will be a huge part, even through she's not here.

We've come to Australia to spend time with Kylie. I do worry about her here and how she's doing. But, just like no one can help me in my heartache and grief, she has to do deal with her own. Of course, she has amazing support here, which soothes this mama's heart, but, I still worry. It's just what a mama does.

We will be traveling for the rest of the month ... "escaping," but leaning in, listening to God speak, waiting for His direction, and reconnecting as a family, and as a couple, looking toward the future and what that looks like for us.

Thanks for keeping us in your prayers, as we continue on this unexpected journey.





Thursday, August 24, 2017

I don't know how I'm doing.

"How are you doing?"
That's the question I get asked most often, more than I ever have.

It's a simple question, but I find it difficult to answer because I don't know how I'm doing.
I don't know how to do grief.

I don't know if I'm handling this well. Honestly, it's a situation I don't think anyone can handle at all. The heartache is the deepest pain I've ever felt.

I spoke to another mom whom I befriended at Texas Children's Hospital. She lost her 16-year-old daughter last year. I've watched many parents go through this past year without their children. I watched them and had the same thoughts that others tell me now ... "I don't know how they do it."

There's just something different about talking with someone who's gone through similar circumstances. No situation is the same, but there's something different about watching your child fight for so long. You see things that no parent should see. You already have heartache for a long time, but this heartache surpasses them all.

I wanted her to tell me how I was doing. Did she think I was "doing ok?" We talked for about an hour, shared stories with trembling voices. I told her I didn't know how to do this, and asked her what I should be doing. Did I need to talk to anyone about this? Did I need to go to some type of group? Or could I just do this on my own? What were the steps and procedures to get through this? What was going to help? I want to do the right thing. I want my heart to stop hurting so much. 

Of course, she didn't have an answer for me,. She told me what she did and that I should do whatever I think I need to or don't need to do. So, that's where I am.

I do know one thing for sure: You can't rush grief.

I don't know how I'm doing.
I wake up each day, thinking about Katie (I'm going to just use her real name from now on here.) I go to sleep, thinking about Katie. I think about the last few years. I think about her last moments. I think about what an amazing girl she was and how blessed I was to be her mom. And, the thoughts go on and on. They fill my day.

I don't sleep. I can't shut my brain off. I pray. I plead with God to just let me have some rest. I toss and I turn all night. I'm exhausted.

I still tell God that I'd give anything just to have her back with us. I remind him that He has the power to just raise her up from that grave, totally healed. He could do it. I want Him to do it. But, I don't think that's going to happen.

I remind myself that her thoughts right now are not on us nor about anything here on earth. She's in the presence of her King. She's happy, free, and healed.

I get angry throughout the day, not angry with God, just angry that this happened. My emotions differ throughout the day and come through in waves. Some waves will just ease over me and pass, and others are larger and I feel like I'm drowning. These waves hit when you least expect them and anything could trigger an emotion or thought. 

Katie is everywhere for me. Everywhere I look, not just because her pictures surround me, but she's in the smell of cinnamon oils I used to diffuse for her and the lavender vanilla body wash she used. She's in the taste of the lentil soup she so loved from one of the Greek restaurants here. She's in the sound of every single song she introduced me to. I can't even listen to One Direction anymore because all I hear is her singing to the music or dancing around the house. She fills every portion of my brain.

I continue to cry every single day. I keep waiting for the day to arrive that I don't cry. However, I seem to be able to control my crying more than before. I'm not sure if that's a good thing or a bad thing.

I've visited Katie's gravesite multiple times. Even though she's not in there, I still tell her I love her and miss her so much. Funny thing is I feel such peace there. I sit on a bench, situated under a large tree, right near where her body rests. I think about what she's doing in heaven at that very moment and how much she loved Jesus. That gives me peace, but doesn't lessen the heartache unfortunately.

All this to say, I don't know how I'm doing. Am I doing grief well? I don't know. Do I want to be doing grief well? All the steps you read about ... I don't give a lick about them. Grief is way messier than that. You can't order the steps of grief or put labels on the "stages." Heck ... I don't even think there are stages. Each person handles grief differently. And, it's not something as simple as going through a set of stages. It's something you have to deal with the rest of your life.

My husband and I are at a crossroads in our lives now. We devoted our whole lives to Katie, to her health, to helping her get well, to fighting for and with her. We gave up our jobs and our home. And, we would do it all over again.

As of now, we are simply praying that God would order our steps, that He would only open doors we need to walk through. In fact, as I am writing this, my husband is getting dressed for a job interview. We don't know if it's the right thing for him or not, but, again, praying God will show us.

Next week, we are headed to see Kylie (using her real name too now) in Australia. The enemy has definitely stolen a lot from us and one of those things is time with our oldest daughter. We've missed a lot the last few years, from the time she graduated high school until now. We're so proud her and the way she's followed the call of God on her life. It has been a very difficult season for her as well. 

In the meantime, we are working on updating my blog and a new website will be coming soon. We are also beginning to write down all of the things we have wanted to say over the last couple of years. There are many things that have been left out. There are many things that God has done through this. I don't know how long it will take us to document the last few years and get everything down on paper, but we've started.


Our prayer is that whatever we do that it will honor Katie's legacy and glorify God.

Thank you for continuing to pray for us.

Monday, August 7, 2017

A Letter to My Daughter


My sweet girl,

It's been over three weeks since I've heard your voice. I remember your precious voice in our last phone conversation, where you called me at 1:00 am to bring you homemade sweet tea, a true southern belle until the very end. I didn't know that was the last time you would call me. I re-read our last text conversations and scroll through pictures and videos of you on my phone. I replay the last conversations with you over and over again in my head, trying to remember everything we said to each other, counting how many times I said that I loved you and how proud I was of you, and wishing I could tell you so much more. Our last moments together were too short. I hope you truly knew how much your daddy and I loved you. We did everything we knew to keep you here with us, to help you fight the hardest battle I've seen anyone ever have to fight. I ask myself if we could've done anything else, anything more. But, I come up with the same answer: We did everything. It's simply not right and not fair. I get angry when I think about all the enemy has stolen from you and us.

I truly believed that you were the one who make it through this. There are definitely a million thoughts and questions that continue to go through my mind on a daily basis, and emotions that are all over the place in regards to "why." Even though I know there are no answers, the questions and confusion keep rising up. I believed God would heal you here on earth. I saw His hand pulling you through so many obstacles that even amazed the doctors. "Resilient" is the word that was used to describe you. Each time you were faced with yet another issue, you came through it.

I miss you terribly. There isn't a day, an hour, that goes by that I don't think about you. The weight on my chest seems unbearable at times. It hurts so bad. I cry every day and in the moments I'm not crying, I feel guilty ... guilty that I'm doing everyday stuff, guilty that I'm living, guilty for any moments I'm not thinking about you. What I wouldn't give to snuggle with you in the bed again, to hold your hand, to have another conversation, to just be next to you.

The hole you've left in our lives is enormous. From the time you came into our lives, we were changed for the better. I think about how we were inseparable when you were a baby. You would cry for hours when I wasn't around. At the time, it exhausted me. But, now I cherish the moments when I bounced you up and down on my hip, rocked you, napped with you, held you. You finally gained your independence and you were a force to be reckoned with always. I love that about you. Even these last years, you stood up for yourself regarding your care. The strength you showed was incredible, physically and mentally.

I worry about your daddy and your sister. I don't want them to hurt. I want them to be okay, just like I always wanted you to be. They loved you so much. Our family is not the same without you, but we are still a family. We look different without you.

So, how do we go on? That's been the question of each day. How do we move on? Moving on doesn't even seem like an option. It seems impossible. My prayer each day has been simple: "Jesus, help me."

I know that you're up in Heaven, worshiping God in all His glory. I try to think about what it was like when you took that last breath and finally saw Jesus. I imagine you running into His arms, safe and sound.

I know that you will never read this letter. But, I needed to write it.

I love you, sweet girl. The fact that God chose me to be your mama has been an honor and a blessing. I know that you would be sad that we are sad right now. You hated what all this did to us and would always apologize for stuff that was never your fault. I can hear you apologizing now, just like you would apologize to the doctors when you would code and they would have to do extra work. Even that showed your heart. You always worried about everyone else. You cared and loved everyone. And, you were loved by so many.

Attempting to close out this letter crushes me, so I won't.

I can't wait to see you again.

Mama

Thursday, July 27, 2017

One Week

That's how long it's been since our amazing girl went to be with Jesus.
It's only been a week, but it feels so much longer.

There's an emptiness within my heart and our lives, a huge, gaping hole left behind.


I see La Petite Belle everywhere.
I see things she would like and hear things she would think are funny or not funny. I remember movies that she wanted me to take her to. I think of the guest list she made for her 17th birthday party and how excited she was once her doctor told her, just a few weeks ago, that she could go back to her home town for a weekend if she felt well. So many memories flood my mind. They don't stop. I don't want them to ever stop. Thinking of them stopping actually brings tears to my eyes. I don't want this to "get easier" because that would mean the memories of her have faded.

I hear her voice. The song she wrote from her hospital bed a couple of years ago, as she went through her bone marrow transplant process, replays over and over again. It literally wakes me in my sleep. I think of the last time I heard her voice. I struggle with remembering everything she said that Sunday before she was intubated for the last time. I know she said she loved me and I try to remember what it sounded like. I've watched countless videos on my phone of her from the past couple of years and we've gone through what seems likes thousands of pictures of her. She truly was a ball of joy wrapped in skin.

I don't know how to do this.
I don't know how to handle grief. I even hate that word - "grief."
"Handling grief" ... these words pressure me to get over this, to move on.
People don't want to be around someone going through this stuff. They don't know what to say. There really are no words and that's okay. Actually, that's better. I'm definitely not good company. My fun self has been replaced with brokenness.

I realize she's in heaven, a better place, no more suffering, no more pain, finally with her Savior. I'm thankful to have this assurance. But, I'm not ready to "rejoice" at this moment as some would say I should be doing. In fact, rejoicing is the last thing I want to do. I know that I'll be able to rejoice again. I'm just not there yet.

I just want to talk to my baby girl again. I want to hold her hand. I want to hear her sweet voice and laugh with her. I want to snuggle with her like she requested we do almost every single day for the past year.

I know that she's okay, but we're the ones who aren't.
This emptiness remains. This hole remains. It will always be there.
God will hold us. I have no doubt about that. He's been faithful to us and He always will be.

There are no answers to why this happened. I will never understand this. I truly thought she would be the one who made it. She was the strong one. She had overcome so much. One doctor told us that she had a "reserve and resilience about her" that made her so unpredictable. She always pulled through the toughest of situations. Her spirit remained strong, but her body couldn't take any more.

And, when the nurse backed off on some of her sedation that last night we were able to really communicate with her, Beau asked her if she was ready to be with Jesus. She opened her eyes and nodded her head "yes," a response we hadn't seen much of due to the amount of sedation she was on. It definitely reassured us that she was ready to go. My girl finally got her healing she so desperately wanted and fought for.

This morning I read a verse I've read a million times before, but it had new meaning to me today.
Trust in the Lord with all your heart; do not depend on your own understanding. -Proverbs 3:5

Although I don't understand, I will continue to trust.
I will trust will my whole heart, even the part that is empty.

I told Beau that I was gong to stop blogging, stop writing.
La Petite Belle has been over 75% of my writings and she's gone. I don't know if there's anything else to say nor write. But, he disagreed with me. This blog was started so that my girls would be able to read about their mom and their lives after I was the one who was gone. It wasn't supposed to happen this way.

I don't know anything. Zilch. Nothing.
I don't know what the future holds. 
I don't know where our path will lead.
I will keep this blog right here for now.
I will not depend on my own understanding.
I will trust with my whole heart.

Thank you all for your prayers and support through the years. We can never repay you, but we know someone who will. We pray God blesses you abundantly for your faithful generosity to us!

Here's one last tribute to our amazing daughter...


You can view her memorial service here. It was truly a wonderful celebration to who she was.

Saturday, July 15, 2017

"A Rock and a Hard Place"

I used to use that phrase all the time ... "It looks like we're stuck between a rock and a hard place."

Recently, La Petite Belle looked at me and said, "Mama, that's my whole life."
She's right. How true this statement is.
Now, she says it every time we get bad news. She looks at me with that sassy expression and says, "Well, Mama ... it looks like we're stuck between a rock and a hard place."


Each time we think the rock may be moving, it crushes us once again.
We are trapped again. Unable to move.
At times, unable to breathe.
Despite how hard we push, the rock barely moves.

Exhaustion sets in.
We're tired.
All of us.
From pushing the rock.
From having the hard place up against our back.

My husband constantly reminds me that we have no control over our life right now, over La Petite Belle's health. The only thing we can control is how we respond to what we're facing.
Do we respond with faith?
Do we respond with fear?
Do we respond with doubt?
Do we respond with complete surrender?

I have to be honest. I don't always respond the right way. 
I've been angry. I've been sad beyond belief, a brokenness I never thought I'd experience ... total despair. I've definitely been scared.


Then, my husband again becomes the voice of comfort when he reminds me that, no matter what happens, La Petite Belle will always be okay. He says, over and over, "She wins!" 
He's right. She will always win.
She wins because she has lived her life desiring only to serve God.
She has lived her life loving God with all her heart.
Many people have expressed how much she has been an inspiration to them in their faith, but she has been an even greater inspiration to us as her parents. I don't even think "inspiration" is the right word. It's much deeper than that.
(She had no idea I was recording this video, as she asked me to play this song on repeat. She sang the words each time, half asleep, half awake, many drugs in her system.)
video

As we sit here, stuck, once again in this place, we just have to keep trusting. God knows best. He loves her more than we can imagine. He's a good Father and His plans for her and us are always good.

That's not a hard thing to say or believe. He is always good. I have no doubt about that. But, it still hurts my heart when I remind myself of this because my idea of "plans for good" don't look like this. It's hard for me to understand, but that's what trusting in God is all about ... not understanding His ways, knowing they're good, and trusting Him anyway.

We've been through multiple setbacks since I've last posted. Things change so quickly that I can't even keep up with posting updates. And, honestly, a lot of times, I don't want to post an update. I want to post good updates, updates of improvements and victories. I don't want to post updates involving bad news.

Instead of posting an update, with an overload of details of the challenges our girl is facing, I'm just going to ask you to keep praying for a breakthrough for us and God's best for La Petite Belle.
Thank you, once again, for standing with us!
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, 
All gifts are tax deductible. All funds go to cover medical bills and expenses.

Sunday, July 2, 2017

Facing Facts

It's been over two years since we've been dealing with La Petite Belle's health situation. Most of those two years has been spent living at Texas Children's Hospital.

We know more than we care to know about the workings of the hospital. We know the procedures. We know what the doctors will say before they say it. We know how the hospital works, in general. We know a thousand and one ways things could improve. We know a thousand and one things that are great ... well, maybe just a thousand.

We are extremely grateful for this place, for the doctors, for the nurses. All have really become family to us ... as much as a family can be with HIPPA rules and regulations.

When you spend so much time in one place, little things start to annoy you, like the sound of the bell we have to push that allows us to get into the bone marrow unit. Each time I push it and hear the first tone, I want to rip it off the wall. I'm not kidding.

Let's not even talk about the security line you have to stand in if you're coming in after 9:00 p.m. It crawls at a snail's pace. Or how many times I've been asked if La Petite Belle's been immunized or if we're familiar with the hospital. Ugh ... read the chart, people.

But, I digress ...

Familiarity breeds contempt. It's a real thing. Really real.

The last few weeks have not failed us in adding to our standard exhaustion level. We've been in and out of the hospital each week. It seems like, as soon as the weekend starts to creep up, La Petite Belle gets admitted for fever. This is actually the first weekend in a while that we've all been home together, and we almost went to the emergency room earlier today (details to follow). Writing that statement at this time of the day makes me feel uneasy, because it could change at any given moment, and we could be rushing La Petite Belle to the hospital again.

I've been reminded lately about a post I wrote a while back, after La Petite Belle got diagnosed - It's a marathon, not a sprint.

We are definitely still running this marathon. The problem is I don't know what mile marker we're at and how far away we are from the finish line. At times, I feel like I can see the finish line. And, at other times, I feel like I'm sitting on the curb, hurting, not knowing if we'll move any further.

I'm coming to grips with the fact that we may be dealing with this for a very long time ... that we have to just try and live our lives in between times of not feeling well, hospital admissions, medical procedures, and therapies.

We did that last Thursday when La Petite Belle felt well and desperately wanted to get out. Each time she feels even a bit better, she pushes to have some enjoyment. We went to dinner and to the aquarium downtown. It was nice just trying to do something normal. It took a lot out of her, but this girl has such determination. Her desire to spend quality time with us and act like she's a regular teenager far surpasses some of the pain she's experiencing. I mean look how good she looked on Thursday!


As soon as we got home, she started hurting and the pain has only gotten worse through the weekend.
With that being said, I just have this feeling that La Petite Belle will be admitted tomorrow when she goes for her clinic visit and dialysis.

She's really feeling pretty bad and, and with her intensified back pain, she can barely walk. Hence, the reason by the almost emergency room visit earlier today.
Beau was working at a church this morning. La Petite Belle has been extremely weak since Friday, so she needs our help even more when just walking to the bathroom. It's hard for me to hold her up by myself when she is weak like this. Her norm has not been this way, but with this new back pain, it's getting harder for her to balance, much less make it from room to room. As I was helping her to get back to the bed from the bathroom, she, once again, became very weak and her muscles began to jerk and, despite my every effort, she fell on the floor. After that, she began to vomit and say I needed to call an ambulance because she didn't know if she could get up again or move at all. I called Beau and he rushed home. In that time that we waited, I cleaned her up and threw clothes on, planning to head to the hospital, as has become our regular weekend thing. After time passed, she sat up and said she was okay and not to call the hospital or go to the ER. Beau and I, together, were able to get her up and to the bed. I do think that something is different with her muscles, increased back pain, increased nausea and vomiting, not eating, and just overall weakness. She's not herself, even herself from Thursday. That's why I fully expect an admittance. She had no fever today, so I concurred and said if she could wait it out until morning for her clinic visit, we wouldn't go in. She, of course, said she wanted to wait. The hospital is the last place she wants to go, especially when she's overly tired and exhausted. There's no resting there.

I didn't imagine that my life would be waking up each morning and wondering what the health of my child would be for that very day, knowing that, in an instant, things could take a turn. It's sad to say that instances like what happened today are not unexpected. My memories from last year flood my Facebook feed, showing what a horrific time we had with her long PICU stays. Each day not knowing if she would pull through was heart-wrenching. This picture came up this week, and my heart ached like it did back then.


This was PICU. This was a daddy praying, crying, and then sleeping in this position over his daughter's bed. I took the picture so that I could show La Petite Belle how much her daddy loved her and how we were always there, even when she didn't know we were. During those days, when she was awake, she wanted us. She wanted our chairs right next to the bed and she wanted our hands holding hers. I remember these days, and thank God for how far she's come.

One of the hardest things is not knowing what will happen with each given day.
Will we have to rush La Petite Belle to the hospital?
Will we end up back in PICU?
Will she feel well today?
Will she beg us to let her sleep all day?
Will she feel good and want to take advantage of the moment by getting out?
Will she be sad and anxious and ask me to come home from work?
Will she get stronger today?
Will something bad happen that stops us in our tracks yet again?
Will we ever be able to take her back to our hometown as she's asked us to?
What will this day hold?

These questions and more go through my mind daily.

The future remains uncertain to us.
But, my hope is in the fact that it's not uncertain to my God.
I have to keep reminding myself that He sees us, He hears us, and He always has a plan for us that is for our good, for La Petite Belle's good.
I have to keep trusting in that fact.

The facts are that all this stuff is happening and continues to throw us for a loop.
No doubt about that. It's a fact.
But, the even greater fact is that my God is in control.

All we can continue to do is hope and trust.
Three years ago, I posted this statement:  "'Against all hope ... IN HOPE, Abraham believed.' There is hope in hopeless situations."

The full Scripture says this:
Even when there was no reason for hope, Abraham kept hoping—believing that he would become the father of many nations. For God had said to him, “That’s how many descendants you will have!” And Abraham’s faith did not weaken, even though, at about 100 years of age, he figured his body was as good as dead—and so was Sarah’s womb. Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. He was fully convinced that God is able to do whatever he promises. And because of Abraham’s faith, God counted him as righteous. Romans 4:18-22
We hope. We trust. We believe. We stand.
Thank you for continuing to pray and stand with us.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, 
All gifts are tax deductible. All funds go to cover medical bills and expenses.

Wednesday, June 7, 2017

"Do you have children?"

That's usually how it all starts.

I hesitate to answer sometimes, knowing that this one question could make the questioner sorry he or she ever asked. 

Yes, I have children.

The follow-up questions ensue.

And, after I've mentioned K Belle, Australia, and addressed the shock and awe of the possibility of me having an almost 20-year-old daughter, I mentioned La Petite Belle. More questions ensue ... how we came to Houston, our job situation, etc., etc., etc. 

At this point, I attempt to condense two years of suffering into a few minutes. It's pretty impossible. And, it definitely leaves the questioner in shock. Sometimes they don't know what to say. Actually, most of the time, they don't know what to say. I expect that. By now, I've had a lot of experience with that. I try to assure the questioner that it's okay that they don't know what to say and I don't expect anything out of them.

Just an everyday, getting-to-know-you "question and answer" can lead me to tears. It can lead the questioner to tears also.

This same question was asked by someone yesterday ... a sweet, innocent woman, making conversation. What was meant to be a few minutes of chitchat lead to close to twenty minutes of engaging conversation. Afterward, the woman said, that what I said to her "really ministered" to her and put a lot in perspective for her.

I get that. I'm thankful for that.
But, oh how I wish I wasn't the one who had to put things in perspective for people because my life seems so much harder than theirs. My life seems to cause other people to be thankful for the difficulties in their own lives. 

I'm thankful that God could use our circumstances to minister to other people, but, gosh ... I still wish it was different. Why can't I be the one getting things put into perspective by other people? I'd like that. I'm ready for that. 

This new reality of working an 8:30-5:00 job has been even more difficult than I ever imagined, especially with La Petite Belle being in the hospital again. I think about Beau and her all day long. I wonder what's happening. Not being there is definitely hard on this mama's heart, but this is where we are right now and we're desperately just trying to make this work. I just keep hanging on, waiting for life to change, for us to turn a corner.

I've been waiting to write an update until we had concrete answers as to what is going on with La Petite Belle, and now we do.

La Petite Belle was diagnosed with pneumonia over a month ago when we were inpatient. She was given antibiotics and seemed to get better and we were able to go home. We were home for almost a week when she spiked a fever. We ended up in the ER again and she was admitted yet again. Her pneumonia was still there and there was even chatter about removing her gall bladder. 

The gall bladder issue subsided. Thank God! That was not an option for our girl. But, the pneumonia persisted and showed not much improvement even with multiple antibiotics. After a week or so, and much discussion, the doctors performed a bronchial lavage and a lung biopsy to determine exactly what was causing this pneumonia. There are other types of pneumonia that aren't responsive to antibiotics because they are not brought on by bacteria or other types of infection. 

The biopsy revealed that the pneumonia La Petite Belle has is called Cryptogenic Organizing Pneumonia (COP). This was not the answer that we wanted. No one wanted it. The treatment for this is high-dose steroids. If you've followed La Petite Belle's story long enough, you know that this was treatment for the GVHD she had and lead to many more complications that she's still dealing with today.  The doctors are taking all of that into consideration when determining her dosing. But, this is the only treatment and it needs to get taken care of or it could get worse and even harder to treat.

It will be pulse-dosed, meaning one large dose once a week for at least two weeks. The doctors are hopeful that we will see some improvement after two weeks. Then, they will make a decision of how to wean the doses.

The danger with steroids is how much it suppresses your immune system. This leaves La Petite Belle susceptible again to all the viruses she fought last year (which live in her body) and any other type of infection. 

We are not expecting to get out of the hospital until La Petite Belle's need for oxygen is gone and her lungs are clear, at least anther week or two. When her lungs are better, barring no complications, we can be discharged again.

It's sad to say that hospital stays don't affect us as much as they used to. It's become our norm. La Petite Belle used to say, day-in and day-out, that she just wanted to go home. Now, she doesn't say anything and doesn't seem nearly as bothered by the whole thing.

She does miss Roxy Belle most of all and asks me if I can sneak her into the hospital sometimes. 

Granted, we all DO want to go home. But, we've become accustomed to this lifestyle. 
Is it difficult? Extremely. Is it exhausting? Definitely. But, it's what we have to do.

Please be in prayer for our amazing girl. She's still got more fighting to do. Pray that this pneumonia is gone quickly and the dosing of steroids can be minimal. Pray that La Petite Belle's body will not succumb to any viruses, bacteria, or fungus during this process. Pray for wisdom and guidance for the doctors as they make decisions regarding La Petite Belle's care.  

I ask also that you pray for another fighter ... Anais. Anais has her own story, but both of these amazing girls are fighting this same rare pneumonia, next door to one another on the 8th floor at Texas Children's Hospital. Anais' mom and I find it ironic that both of our teenage girls, who come from the same area of Louisiana, went to the same dance school for a short time, know so many of the same people, are now fighting this same "rare" pneumonia. Anais has also been at TCH for a long time and has recently undergone a second bone marrow transplant. 
As you pray for our sweet girl, please pray for Anais, as well.


If you would like to financially support Katie's (aka La Petite Belle) journey to healing, 
All gifts are tax deductible. All funds go to cover medical bills and exp