Wednesday, June 15, 2016

The Perfect Formula

I've been praying a lot for La Petite Belle. Every day, my prayers seem to be the same. I continue to seek, to ask, and to knock on that door. I will not stop. I will knock on that door to the point of annoyance. At some point, the door has to get opened for the knocking to stop. I know that if someone were knocking on my door for over a year, I wouldn't be able to stand the sound anymore. 

But, of course, I'm not God and I don't understand His ways most of the time. His ways are bigger than my pea brain can comprehend. I go round and round in my own brain about the "whys" even though I know there are no answers. I go round and round about the "whats" and "hows" and "whens" too, not knowing those answers either.

There are honestly days when I feel that God is silent to my prayers. I know He isn't. I know He hears. But, our circumstances, at times, seem hopeless and just plain sad. The ups and downs are exhausting. There are days I don't know what to think. I try not to let my mind take over too much and to simply take all thoughts captive. That's pretty hard when you're sitting in an ICU hospital room all day, all night ... when you continue to see your child suffering. You question where the "good" is in all of it. And, you know God would NEVER plan this for a child and He could step it at any moment. But, still you wait, knock, and hope.

Beau and I talk often about what we've each been praying and about thoughts on our life situation and La Petite Belle's healing.

I told him yesterday that I wish there was some perfect formula to my prayers that would cause La Petite Belle to be healed and outta here ... that maybe I'm doing it all wrong ... maybe my prayers aren't right ... maybe I'm not holy enough ... maybe if I were better at fasting ... maybe I don't rebuke the enemy well enough ... maybe I'm not as close to God as I thought I was ... maybe, maybe, maybe.

I realize there isn't some perfect formula.
But, these days, these are the kinda thoughts I have.

If La Petite Belle's healing hung on how good I was or how perfect my prayers were, she'd be in sad shape.

If anyone's healing was dependent on us, we'd all be in sad shape.

There's NOTHING more that I can do than what I'm already doing. That's hard for me to come to grips with. As a mom, I want to just fix it for her. Every day I have new ideas and questions to ask the doctors. La Petite Belle has told me to stop making suggestions. I just can't help it. The ability to solve problems is what moms do best.

When I look in the Bible, EVERY time people went to Jesus for healing, He did only one thing:
He healed.
Every. Single. Time.
He was ALWAYS willing and never turned anyone away.

And, there was no perfect formula.

In fact, the only things I see each person doing are:
Asking Jesus to heal.
Believing that He would.

That's it.
A lot of the people He healed weren't church-goers (synagogue in those days) either.
Some were even those dastardly Samaritans.
Some were what most would consider unholy and not good enough.
They didn't pray at all, much less fast.

And, what did Jesus do? He healed them.
He told them their "faith" made them well. They believed He could heal.

Basically, we're in the same boat.
WE ALL (especially La Petite Belle) believe Jesus heals.
La Petite Belle's faith has remained strong through all of this. If you ask her today, as she lies in a bed in the ICU, whether she believes God is healing her, she will absolutely tell you "yes."

This hangs on La Petite Belle's ICU room wall.

It's a reminder that the faith we've had all along is the same faith that believes Jesus always heals.

There is NO perfect prayer formula or anything I can do for my daughter's healing than to simply follow the example of all of those healed by Jesus ... Ask and believe.
Seems simple. And, these are the things we do every day.

We do grow weary, of course. This has been a long road and we've been through the gamut of emotions. But, ultimately, I know that I don't see everything, and God does. So, I'm trusting despite what my eyes see. That's actually the definition of faith. Is it easy? Seems like it should be. 

But, in circumstances like this, it is definitely difficult at times. I've cried deep cries and had some emotional talks with the Lord about all this. 
I always come back to the same conclusion: God is good and He is a healer.
I may not ... actually I should say I DON'T ... understand His ways, but I have to trust Him anyway.

As far as an update on La Petite Belle goes ...
She's pretty much the same as my last blog post. The only thing different that has occurred is that they think she might have a bacterial infection. She had very low blood pressure and extreme shaking yesterday. She was also in more pain. Blood was drawn for cultures and now we're just waiting for them to come back. They did start her on a couple of new doses of stronger antibiotics, just in case. Of course, these can be harmful for the kidneys, so they're watching the levels carefully.

Continue to pray for these kidneys to wake up. Again, this is what is holding us down here in ICU, and causing her to become more weak due to her being in the bed for so long. I want to just SCREAM at these kidneys to stinkin' WAKE UP! And, I may have scolded them "in Jesus' name", of course. But, something's gotta give here. Enough is enough. I know that the enemy is loving this and that just makes me even more angry. 

Thank you for all your love, prayers, and support. We are thankful for each of you, who, whether you know it or not, play a part in helping us through this.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.

Friday, June 10, 2016

Repetition - A Day in the Life

I could probably title every post I write as "Exhausted."

That's literally all I feel. That would get repetitious.

But, our lives have become just that ... repetitious. It's the same thing every day without much change at all. It was that way on the BMT floor for months, but it's definitely worse now in ICU.

My day starts and ends the same way most every day.

I wake up and throw on some sort of workout pants, t-shirt, and tennis shoes. I pull my hair back into a ponytail and put on only enough make-up to make me look alive. I pack up my backpack and anything La Petite Belle might want from the apartment and head over to the hospital.
(Because she's in ICU, the only option available for sleeping parents is recliners in the waiting room. We used them the first two times we were in ICU and knew that the use of them for an extended stay was just not gonna work. Talk about exhaustion! Every night we return to the apartment to sleep.)

Beau heads off to work most every morning, but is able to sit with La Petite Belle some mornings/days. This is a huge break for me.

I make the short drive to the parking garage and then make the trek to the hospital ... third floor, ICU. I check in and get my daily "I don't have flu symptoms" sticker and my badge that allows me back in the room. Only two visitors are allowed in the room at a time and must have the badge. At this point, I walk in and the receptionists don't have to ask what bed number badge I need. They know me.

I pass through the waiting room. I pass by snoring dads and grandpas. I pass by moms weeping. I pass by chatter filled with medical terminology. I pass by friends and family holding each other, consoling each other. I pass by new parents getting the speech on how the ICU works.

I get to the hand washing station and wash up, then press the intercom button to have the door unlocked. 

I head to La Petite Belle's "room", or should I say "bed" ... Bed 29. Today marks five weeks she's been in this bed.

I talk to her nurse, ask about the evening, go in and let her know I'm there. 
This is the start of her day. She's just starting to wake up.

She gets physical therapy late morning. Before that, there's all kinds of other things that have to happen: she has to get off dialysis, she has to take her oral meds, try to eat a little something, and MOST importantly get her pain and anti-nausea meds before they start. I feel like I have to get with the nurse whom we haven't had in days or weeks and review the plan with them so that they are up to speed on everything. It's SO easy when we have the same nurse multiple days in a row. That does happen, but not enough, in my opinion.

Physical therapy is a chore for her. She's in pain and she's going to be in pain until she is stronger. I'm not sure if I've been clear about how weak our once-super-strong girl actually is. La Petite Belle is unable to hold herself up due to weeks of being in the bed. She can sit up in the bed with the support of the bed, but cannot hold herself up. Therapy for the last couple of weeks was just getting her to sit at the side of the bed with her feet hanging off the bed. The compression fracture in her back has made her pain pretty bad at times, mostly during physical therapy. She has been able to move to the side of the bed with help and support, then hold it for short amounts of time. She does exercises lying down in the bed also to try to strengthen her legs and arms. She's also been having some neuropathy in her feet and toes. That's another thing she gets pain meds for.

Now, the last couple of days, the goal has been to get her from a lying position in the bed to a reclining wheelchair. The therapists physically move her from the bed into the chair that is actually flat like a bed. Then, they slowly begin to elevate her head and back, while lowering her feet and legs into a chair position. This whole process is difficult and painful for her. It's extremely hard to watch and to hear her moan or scream in pain as her parents. There are days when she says she can't do it, but we make her do it anyway. Each day she doesn't do therapy or sit up is a day she gets weaker. Each day she does do it, she's getting stronger.

Today, she was actually able to pass and kick a beach ball while in the chair. This was huge. Every day, they try to push her a little bit more. Even if everything else was going great with her condition right now, we wouldn't be able to leave because of how weak she is. She HAS to be able to sit up and be stronger to leave.

When she gets back to the room, the transfer back to the bed is just as hard as the transfer to the chair. Once she's settled, I try to get her to eat something.

You see, her GVHD has improved. That's something to be thankful for. She's actually been able to eat a little bit. The only problem is she says that nothing has a taste. EVERY SINGLE THING we try of the foods she can eat ... no taste. It's frustrating for her and for us. Eating is something that should be enjoyed and give her some comfort and she's not able to have that. We want her to eat to see how her stomach will absorb nutrients and then her IV nutrition could be reduced. The doctors say she will probably be on IV nutrition for a while until they know for sure she's absorbing. They are starting one of her IV meds orally today and then will check her levels on it. That could be the sign to show us she is or is not absorbing. (My idea ... I told you I'm like a doctor now.)

The rest of the day includes waiting for doctors and trying to make La Petite Belle comfortable and distracted. The days are long.

(in the corner of her room where I get to sit every day)

(my view every day)

The nurses are great and one amazing nurse rearranged her whole room to give her a different view. Now, she can see out the window. When her BFF came to visit yesterday, the nurse had bought decorations for them to use to brighten up her room.


That was a great day. I thought seeing her friend would make her super emotional. She had cried the day before the visit, saying, she "always wanted to be a role model for her," and "like a big sister because she didn't have that like she did" with K Belle. I promised to bring her friend over for a very long visit when La Petite Belle makes it outta here.

She misses her friends and her people from back in Louisiana so much. Visits are a bright spot in her long, dreary ICU days.

I don't think I realized how much La Petite Belle has changed until I saw my friend's reaction when she saw her yesterday. To me, she looks like she has been looking the last few months, but I see her every day. After months of not seeing her, it was emotional for my friend, who has always been close to my sweet girl too. I don't think La Petite Belle thinks she looks much different. She knows she's changed, especially thanks to steroids. Her puffy face is the most significant change that people see.

As she rode in the wheelchair on the busy third floor yesterday, out in public, for the world to see, there were pity stares. It didn't bother me at first. We got that when she lost her hair or had to wear her mask. It wasn't a big deal. But, at one point, I just wanted to scream ... "This is not who she is." When people look at her, all they see is a very sick kid. They wonder what's wrong with her, what's her story.  They feel pity. I don't blame them. But, I want to tell them, "She's SO much more than this!" I could give you a list of things that describe her, but "sick" is not one of them.  Just writing about this makes my eyes swell up with tears, so let's move on.

Sometimes La Petite Belle is up to watching a movie, sometimes nothing. Some days she just wants to nap. Last week, she gave herself a manicure. But, every day I encourage her to do something. Sometimes I succeed; sometimes I don't.

By evening time, Beau arrives at the hospital from work. We talk, try to spend more time with our girl if she's up to it. Shift change happens. We make sure La Petite Belle is good and tucked in ... make sure she's got her phone, her bunny, her eye mask, and any other things she might need overnight. We tell her, once again, how AMAZING she is and how GREAT she's doing. We read her devotional and pray before she goes to sleep.

We make the trek back to our parking garages and head back to our apartment. At that time, I know I have a good hour or two to eat, bathe (FINALLY a good non-hospital tub!), maybe do some laundry, clean up a bit, and watch some TV.

Then, I go to bed and do the same thing the next day.

As for more of an update on La Petite Belle's progress ...
Yesterday, a meeting was held between the BMT docs, renal docs, ICU docs, and physical therapists to create a consistent plan for her care, to make sure everyone was on the same page. I was brought in there at the end so they could discuss it all with me. 

The plan is that she needs both physical therapy and dialysis every day. Those are her biggest issues right now ... acute kidney injury and overall muscle wasting/weakness. 

Of course, the kidney issue is really starting to worry me. I know I shouldn't worry, but that's really hard for a mom to not do, especially in our situation. I fluctuate between worry and strong confidence every day. I know God is in control. I'd just like Him to control it my way if that could be possible. But, I'm trusting in who He says He is ... loving, good, mighty, all-powerful, sovereign, righteous, faithful, Provider, and ALWAYS Healer.

Until La Petite Belle is able to produce urine (yes, she is not peeing right now and really hasn't since she's been in ICU ... hence, the fluid overload) or they are able to reduce her IV nutrition and meds, she will have to stay on the CRRT (24-hour dialysis), only coming off for two hours each day (minus weekends) for physical therapy.

Thank you for continuing to pray and stand with us for our amazing girl's healing.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.

Sunday, June 5, 2016

Five Months

It's hard to believe that today marks five months since La Petite Belle has been inpatient at Texas Children's Hospital. Really hard to believe.

I still have to remind myself daily that this is real. Our life has changed. And, changed drastically.

I walk outside and immediately think of how much La Petite Belle would enjoy the sunshine, fresh air, birds chirping, and the smell of freshly cut grass.

When I wake each morning, I think about how I'd love to hop up and cook up some breakfast for her and plan what we could do for the day.

I think about how we never got to go to the movies or shopping to spend her Christmas money, as planned, after Christmas, because she got sick.

I look at all the social media posts about her friends getting their driver's licenses, going to dances, and attending summer camps, and it makes me sad that she's not getting to do those things.

These are the kinds of thoughts that run through a mama's head on a daily basis when her child is fighting for her life in a hospital bed for what seems like an eternity.

I still cry. A lot.

I wish it wasn't so. I wish I could be much stronger. 
I will never get used to this kind of life that we're living. I will never get used to seeing my daughter hurting. Never.

As Beau said last night, while I was crying yet again, "You're just a mama."

So true. I'm just a mama who wants her child healthy, not hurting, enjoying a normal life.

That's all.

I try to be positive.
I ask the doctor's for the "best case scenario."
I find things to be thankful for each day. I encourage my daughter to do the same.

But, this doesn't get any easier.
Time doesn't help. It makes it worse. It makes it harder.

Don't get me wrong. I still trust God. I still believe He's here with us. He's not forsaken us. He's holding us through all the hurting and all the pain. Why His plan doesn't look like the good plan I have in my head I'll never know. But, I have no other choice than to trust a loving Father, who is always faithful and always good.

But, it doesn't make things hurt any less. It doesn't make me less exhausted. It just gives me hope that there is something better and beautiful coming no matter how impatient I am waiting for it.

{Sidenote: If ONE MORE doctor utters these words, "we just have to be patient" or "this is going to take time," I'm going to throat-punch them. Ok ... probably won't throat-punch, but I have told them to NOT EVER say those words to me again. Yes, I have. Each doctor. Every doctor. Every new doctor. Because dadgummit, I HAVE been patient. I mean, do we really have a choice? Don't worry, the doctors love me here. I just peaced-out rounds here in the ICU with, "That's all I have for you today" like I'm in charge. I got laughs so I think they get me.}

La Petite Belle is still as sweet as ever. Each day, I see more and more of how thoughtful she is. She started working on doing her nails. This was a two-day event due to how shaky her hands still are from the steroids and how her vision is somewhat blurred from the other medications. But, she got them finished and each day offers to do the her nurse's nails "if she has time." It's cute and funny because her nurse never has "time" because she's so busy taking care of La Petite Belle. I told her I'd rather the nurse not sacrifice her care because she's giving her a manicure.

I also try to focus on how many other people and parents who are going through and fighting similar battles. I pray for them. I hurt with them. That's what we do when we're in this kinda life. We see each other and we truly know each other's hearts.

So ... here's the latest update on La Petite Belle's progress ...
Yes, we are STILL in ICU. The reason we're still in ICU is again because of her kidneys and this CRRT (Continuous Renal Replacement Therapy) that can only be done here. She seems to go off and on. She did tolerate the intermittent dialysis, but they were not able to pull as much fluid as they would've liked to. So, now she goes on CRRT for two days and off a day, mainly so she can get some good physical therapy in. Since she's been here, our very strong girl has gotten very weak. Right now, she needs help sitting up without the support of the bed. So, physical therapy is working with her to get her to sit up on the edge of the bed with her feet hanging off, working on trying to get herself to hold herself up. Meanwhile, I forgot to mention in the last update that she has a compression fracture in her back that she's dealing with, so there is some pain with the sitting and moving around. The fracture is caused by ... you guessed it ... STEROIDS. I have developed a love/hate relationship with steroids. They save lives, but damage many other things in the process.

Speaking of steroids, they are continuing to wean them. Today, she will reach half the amount she was originally on. That is all good. Like I said before, her GVHD seems to be improving. We're taking baby steps toward drinking and eating tiny amounts of food that is easy on the stomach.

Her skin is also super sensitive and damaged from the steroids in many areas. As she gets more vitamins and the steroids are weaned, this should improved.

The main issue right now is getting these kidneys to work. It's been a month now that they've not been functioning. This needs to happen in order for us to move forward. And, as long as she's on CRRT, she has to be in ICU, so no moving to another floor until then.

Our prayer has been, of course, for complete healing of La Petite Bell's body for over a year now. Our specific prayer right now is that her kidneys would kick back in and work as God has designed them to work. She was such a perfect little baby when she was born. I remember every inch of her being so peachy perfect. I know that God created each part of her and knows every detail of her body. Our prayer is that her kidneys would work again and work at 100%. With this kind of kidney injury that she has (they call it "acute kidney damage/injury"), it can take days, weeks, months to recover. It's already been over a month and we are praying for increased function sooner than later. When you do think about our sweet girl, please join us in prayer for this healing.

Also, pray for strength ... strength in her body, strength in her mind, strength for Beau and me. Any ounce of strength that you may think we have only comes from God. I pray daily for just the strength to get through that day and each moment. 


Thanks for continuing to pray for and with us through this time. We appreciate every prayer, every message, every word, every gift.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.

Tuesday, May 31, 2016

Waiting is exhausting.

My entire day is centered around waiting.

I wake up and wait.
I wait until the time I go to bed.
Then, I wake up and do the same thing all over again.

I wait on doctors.

I wait on procedures. 

I wait on tests. 

I wait on results.

I wait on good news.

I wait on a breakthrough.

I wait for a good day.

I wait for healing.

It is exhausting.

Even when I sleep, I wake up exhausted.
My eyes hurt.
My body is tired despite the fact that I sit all day.
I sit and wait.

I always knew waiting was never easy. This is not the first time I've had to wait in my life. Waiting just seems to be a part of life ... a huge part of life. I just never knew how much it could consume your life.

Obviously this whole process has aged me. I look in the mirror and don't recognize who I see. I'm tired and old. Each day seems to age me six months.

I gave a couple of doctors the death stare when they each said how tired I looked after I had actually gotten a pretty good night's sleep. "You look tired" should be a phrase stricken from the English language. No one ever wants to hear it even if they are tired.

I've been so thankful for some good nights of uninterrupted sleep and a few hours to get a break out of the hospital each day thanks to my parents being here. It's been incredible having help. I always knew having someone here to help would have been huge, but now that I've had it for a few weeks, I'm convinced it's vital. Sad thing is that my parents leave tomorrow and I'm back to doing the majority of this hospital stuff on my own since Beau has to work. Thinking of my parents being gone just made me even more tired.

La Petite Belle is tired, more tired than ever. She's been stuck in ICU for almost a month. Her spirits are pretty low. She's sad and feels isolated from everyone, even her "8th floor family" (as she called them). Lying in bed for almost a month in the same room can be quite depressing. She continues to work with physical therapy when she can and definitely needs to build her strength back up to get out of the bed.



Her kidneys are what's keeping us here in ICU. Until they show that they are gonna step back up and do their job, I have no idea when we'll leave. She is currently off the CRRT (24-hour dialysis) and has been tolerating intermittent dialysis daily (3-4 hours). The renal team is still discussing what the next step will be for her. Ultimately, the goal is that her kidneys would wake up and get to business and dialysis could be less often, and then for her to not need it at all. But, as of right now, we have to wait. There's no knowing when her kidneys will recover. We're praying and hoping for that to happen soon!

We are waiting for that breakthrough that will send us back to the 8th floor and the even bigger breakthrough that will send us home.

I'm hanging on to this Scripture and trusting the Lord for strength to just get through each day:
Those who wait on the Lord (trust in Him) will find new strength.  Isaiah 40:31a

We continue to pray with La Petite Belle and encourage her each day.

She received this precious prayer blanket from a church back in Lafayette.


Each ribbon represents prayers said for her. It lies on her bed and so many nurses and employees say how pretty it is. When they mention the blanket, she says, "You can say a prayer if you want." Of course, they all do ... some out loud, some silently. La Petite Belle continues to express her faith, even in her weakest moments. She's even got the nurses praying! Whether they pray on a regular basis or not, she doesn't care. It's interesting to see the expressions on people's faces when she says they can say a prayer and tie a ribbon. Sweet girl.

Thank you for continuing to pray and stand with us. #PrayForKatieMac

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses. 

Tuesday, May 24, 2016

Train Up


Yesterday morning, I leaned over my baby girl and kissed her forehead. I hugged her as much as I could hug her over all the lines attached to her body. And, I said what I say every day to her, "You are an amazing girl. I love you."

Then, I said, "I am also amazed at how hard you are fighting this and not giving up."

She said to me, "It's because of you."

I said, "What do you mean?"

And, my sweet pain-med-induced girl said this: "It's what you always taught me ... Train up a child in the way he should go and when he is old he will not depart from it."

Tears streamed down my face.

If you only knew how much pain medication my girl is on, you would appreciate even more the fact that she could quote Scripture. Most people can't quote a verse fully lucid.

To again say how amazing she is just isn't enough.

We've seen how simply pure-hearted this girl is through this whole process. People say lots of stuff on pain meds, usually not good stuff. Everything that has come out of our girl has been pure ... at times, frustrated and angry ... but, always pure. Beau and I are just in awe of her and her faith.

Our time in ICU has been tumultuous, up one day and down the next. Just when we think we might have a shot at getting out, something sets us back.

La Petite Belle's kidneys are tired. They're tired from the medications. They're tired from all the fluid. They are saying she has an "acute kidney injury". This will take time to heal, especially as long as she's requiring lots of fluid. They tried to pull her off for a day to see if her kidneys would simply respond to diuretics and they did not. 

She had another GI bleed last Friday, which set her back and has prolonged her being on CRRT (Continuous Renal Replacement Therapy - 24-hour dialysis). Her bleed didn't last very long after more blood and platelets were given. However, she's still requiring too much fluid to attempt to take her off again.

And, now we have another issue which they think may be pancreatitis. How bad the pancreatitis is has not yet been determined. All we know is she is in a lot of pain and now they are having to put her back on pain meds she had stopped. According to the doctors, this can be extremely painful and can last days or longer. But, it can also be mild. We are definitely praying for mild and quickly resolving for her. She has been through enough.

Her liver levels were also elevated last week, but ended up leveling out after a few days. Thank you, Jesus! 

It seems like we're in this cycle ... a GI bleed, kidney issues (or new organ issues), bleeding stops, less fluid, attempts to get off CRRT, a GI bleed, and so on. This GI bleeding needs to STOP. I mean ... TOTALLY STOP ... as in NO MORE. That is the key to most issues because it affects how much fluid she gets, which affects her kidneys.

She's also losing lots of strength and has muscle wasting from lying in the bed for so long. She cannot get out of the bed as long as she's on CRRT. She has been working with physical therapy and occupational therapy every day to simply do exercises in the bed to help build her strength up. This is all very taxing on her. She sleeps on and off throughout the day. I'd personally rather her sleeping. The pain meds they are giving her are pretty hard-hitters and sometimes she's very forgetful. But, honestly I'd love for her to forget a lot of stuff she's had to go through. 

My mama's heart still breaks every day as I watch her hurt. I don't think that will ever change. And, I don't think there will be a day where I won't cry. I didn't know a person could actually cry every day for so long. 

However, I do rejoice in this ... that my sweet, precious daughter knows Jesus. And, not only knows Jesus, but has always wanted to serve him her whole life. I rejoice over the tremendous amount of faith she has and how much she is teaching us as her parents.

As you've read this post, you know specifically what to pray for in La Petite Belle's body. And, I thank you immensely for that. Thank you for praying, believing, and standing with us for La Petite Belle's complete healing.

I read this Scripture yesterday - Luke 11:8b-9a:
"... if you keep knocking long enough he will get up and give you whatever you need because of your shameless persistence. And so I tell you, keep on asking, and you will receive what you ask for."

And, so, I will keep knocking.
I will keep asking.

Thank you for doing the same with us.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.

Wednesday, May 11, 2016

Everything DOES NOT happen for a reason.


This is one of the things I've heard the most on this journey with our daughter.

I never liked hearing it. I wasn't sure why, but it just annoyed me ... like God is allowing this suffering to better His plan ... like God needs my daughter to be in pain and face death for the betterment of other people or us ... and the list goes on and on.

I don't think "everything happens for a reason" is scriptural or true.

Sure, God has a plan.

Yes, He sees the future.

Of course, the "steps of a righteous man are ordered by God."

But, could it be that the hard things we go through are just that?? Hard things caused by life. Hard things directly related to one of the central truths of Christianity ... the fall of man.

We are not exempt from hard stuff and tough times. We should expect them. Why? Because we live in a fallen world.

I think that God does know when we are going to face some very tough things. I think He hates that for us. He weeps with us. He wants it better. He always has our good in mind and the good of humanity.

God does not need to cause or allow pain in His children to further His plan. And, He doesn't punish us by making us sick. The world does that. Life does that. And, of course, the enemy would want nothing better than believers to be dead.

I think that it's all about how we handle the hard stuff that matters. How will we face the hard stuff? Most of all, will we bring glory to God through it all?

I do think people like to make sense of things by saying "everything happens for a reason." It helps them to think that, like there's going to be something good coming out of every bad situation. 

This is not always the case. A person doesn't always become better because they go through some trial. It definitely always changes them, but mostly making them harder, angrier, less trusting, depressed, hopeless. 

As Christ-followers, of course, we would hope that this would not be how we would respond. We hope that we would run to God with all our might and desperately search for healing.

When bad things happen, God simply wants us to cling to Him. Yes, "all things do happen for the good of those who love Him." Because, despite tragedy, God can heal ... God will heal when those who love Him trust in Him.

And, yes, God will use our story and anyone's story for His ultimate glory.

We've simply been trying to trust God through this past year. We've gotten angry. We've hurt. We still hurt. But, we are trusting in God to do His work through this situation and be glorified. Of course, He heals and will heal our La Petite Belle. There's no doubt about that. I don't know how or when, but He will.

We got some good news today, actually great news. We've waited so desperately for any bit of a good report.

I sit here right now in La Petite Belle's ICU room. Her scope was a few days ago. She was intubated and on a breathing tube. She is currently on 24-hour dialysis to continuously pull off excess fluid that has built up due to multiple transfusions meant to stop her bleeding. 

Her tube was pulled out just a couple of hours ago. It was actually one of the most beautiful things I've seen because as soon as the tube was out, she began crying, and said, "I'm so happy. God is my healer." It was pretty amazing. She then said, "God is my healer," several times after that. She continues to amaze me. Her faith in God to heal her of this is so strong.

The whole team of doctors met today to look at all her biopsies from January until now and compare them. They needed to determine if the GVHD was getting better or worse and then the  continued course of treatment. 

Our doctor came in just a couple of hours ago to tell us that her GVHD was indeed better than it was when she was admitted in January. The bleeding issue she is having is more related to the meds she is on, mainly high-dose steroids, to cure the GVHD, more than the actual GVHD itself. The coarse of treatment will be to continue to wean steroids slowly and a couple of the other immunosuppressive drugs. They will monitor her bleeding and continue to transfuse as needed. This all was the good news we had so desperately been waiting to hear.

While we are quite a way off from being released and she has lots more healing to do, we are thankful for the news of the day.

The nurses have said how sweet she's been. She holds their hands, and had our nurse today in tears, telling her a few times how much she loved her.
Thank you all SO MUCH for praying and interceding for our sweet girl. 
Please continue to pray. God is definitely her healer.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses. 

Tuesday, May 3, 2016

Unrecognizable

This blurry picture popped up from seven years ago. It's horribly blurry, but is such a great representation of La Petite Belle's personality. I miss this girl.

The constant barrage of Facebook and Timehop memories seem so distant and far away.

I don't recognize my life anymore.

It's so unfamiliar to me. I don't understand it.

Sometimes I have to convince myself that THIS is really it. This is my life.

It hit me even harder this week when Beau went back to Louisiana to load up all of our belongings to bring to Houston.

All my stuff is here. My hubby's here. My daughter's here.
But, my life seems so far away.

I'm missing a daughter who's on the other side of the world.
I'm missing the friendships I intentionally invested so many years into.
I'm missing the church where I sacrificed so much of myself for and loved so dearly.
I'm missing my hometown, where I know every road and building, nook and crannie.
I'm missing sleep ... comfortable, restful sleep in our peaceful home.
I'm missing the love of my Roxy Belle.

I'm missing time with Beau. Yes, he's here. But, he works. I sit at the hospital. He relieves me to go home for a while. And, I'm back again to relieve him. That's what our relationship has been. I miss him. I really do miss him.

I'm missing what our lives used to be ... the easy life really.
Life was easy. Of course, I didn't think so at the time and I worried about the trivial things that I never should have worried about.

La Petite Belle has said on many occasions while we've been here at TCH, that she just wants to "go home," and "misses our old lives."

Oh, how I echo her sentiments.

But, our home is here now.
Strange, unfamiliar here.

I don't like it. But, it is what it is.

Again, I sit here helpless.
I feel helpless in every aspect of the word.
I want to fix this. I want to fix everything.
But, NOTHING I can do will fix this.
The ONLY thing I can do is pray.

So, that's what I do. I sit on the couch in La Petite Belle's room and I pray throughout each day. My prayers are pretty much the same every day. I pray. I stand. I believe that God's got her best interest in  mind and I continue to pray for HIS best for her. It's hard to believe sometimes that this could be HIS best, but I know that God's best has to be better than mine. And, my best for her would be healing. So, HIS best for her has to be the same, no matter how bad the days look. I have no idea what the future holds, but He does. And, He works for our good.

We've had a rough few weeks, ending up with a dialysis catheter being placed in La Petite Belle's neck and her being on 24-hour dialysis for a few days in the ICU. The doctors say she has some kidney damage due to a lot of the medications, and her kidneys are just really overworked with all the fluid and transfusions she receives on a regular basis. Within the first 24 hours, she immediately started to look less swollen and the fluid came off. They will continue to monitor her to see if she will need intermittent dialysis. We're hoping that this is a temporary thing and she will show even greater improvement once she's off a lot of these meds and fluid.

La Petite Belle was also intubated due to fluid and infection in her lungs.This was definitely a scary thing. A sample was taken from her bronchial tubes to test for what it might be. It seems to be some type of fungal infection, which she is being treated for with additional anti-fungal meds. That has also improved and she was breathing on her own again several days ago.

This experience is definitely traumatizing to anyone, but even more to a child. And, although La Petite Belle is 15, she really is still a child. With so many medications, her mind definitely gets foggy. She gets anxious and overwhelmed. We pray for peace of mind for her daily. Some days are better than others depending on what's going on.

Not only does she get overwhelmed, but so do we. We want to be strong for our daughter, but we break too ... quite often as a matter of fact. It seems the longer we're here, the more we break. You would think we'd be used to it by now. But, we will NEVER be used to watching our daughter go through this. The longer she fights, the harder it is to watch.

Her once-strong body has become very weak and she needs help walking at this point. She will need a lot of physical therapy going forward. It's sad to see her athletic, muscular body deteriorate. I know that she can get it back, but it's going to take some time for sure.

There was no room available on our regular 8th floor, which has pretty much become our home these days. So, we were sent to the 7th floor ... another unfamiliar place, where we begin to have to explain things OVER and OVER and OVER again. It's exhausting. I see the looks of pity from the doctors on this floor when they're rounding, after reviewing her medical chart and history. Standing there listening to them review is heartbreaking. Her poor body has gone through so much. It's definitely showing signs of being tired. It's funny how I stand there and every suggestion they think is a new one regarding her medications and treatment, I shoot down as already been tried. Then, I get the pity look again. I honestly feel like I'm giving some of the new nurses quite a good education when it comes to La Petite Belle's care ... actually ... some of those 14-year-old doctors too.

Please continue to pray and lift La Petite Belle up. She went into this over a year ago so strong, but there's only so much a body can take, even a really strong one. Please pray for strength for all of us to continue to press on. Most of all, keep praying for complete healing of my sweet girl's body. Words can't express how much we appreciate all the prayers, love, and support. Thank you a million times ... thank you!

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.