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


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.

Monday, April 18, 2016

This girl melts my heart.

La Petite Belle has always tugged on my heartstrings. Beau says she's always played me. I don't see it that way. She's my baby, that's all. K Belle would most likely agree that I've babied La Petite Belle, but, like I said ... she's the baby.

We had the sweetest conversation with our precious La Petite Belle last night.

She was particularly sad throughout the day. She ended up having some pretty intense nausea all day and, by the end of the day, vomited quite a bit of blood again. Obviously that all had to come out. Before that her hemoglobin was holding steady for almost four days, which was the longest it had held on in a while.

As you can imagine, vomiting blood is quite scary. I would be a little freaked out if I did it.

Her stomach settled down after that. I tucked her into bed and she began to cry. I asked her what was wrong, other than the obvious. Because there are times you have to just cry here, and there's not really one specific reason, but you just have to cry.

She looked at me, through tears, and said, "I love you so much."

I told her I loved her too.

She looked over at Beau and said, "I just want y'all to know how much I really love y'all."

I told her we did.

She said, "I feel like I have taken life for granted. We don't know what tomorrow holds and I want to make sure y'all know that. I haven't told y'all enough how much I love y'all. I want to tell y'all a lot every day."

Yes, there were tears.

She was a little down and definitely more worried because of the vomiting ... afraid of the unknown, afraid of what tomorrow holds.

Beau encouraged her. He reminded her that she still had a lot of life to live. She agreed and will continue to fight no matter how long it takes. In fact, she stated that very thing ... "I don't care how long it takes as long as I can live."

Sweet girl. This is a lot for a 15-year-old to handle ... a lot for a kid at any age. And, being a parent who is helpless in all this, you begin to realize all you can do is hold their hands, love them, comfort them, encourage them, and pray for them. 

Through this whole journey, I am getting to see what an incredible girl she is. She continues to amaze me with her strength and teaches me to make the most of every moment in life. Take nothing for granted. Live life to the fullest and always say "I love you" to those you love.

This girl has ALWAYS lived her life ALL IN! We love that about her!

Thank you for continuing to pray, stand, and believe with us for La Petite Belle's complete 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. 

Wednesday, April 13, 2016

Fight or Die

That's the choice I tell La Petite Belle she has when she wakes up in the mornings saying she can't do this for another day. I ask her what the alternative is. There are only two choices right now: fight or die. If you're not going to fight, if you're going to give up, then the choice is death. If you say you're going to fight, it's going to be hard, REALLY hard, unbearable at times, but you have to push through.

I say this to myself every day when I wake up with tears streaming down my face, knowing I also have to face another day of this ... a day of watching my child hurting, a day of no answers, a day of not knowing what the future holds, a day of waiting, a day of heartbreak over what has been stolen from my sweet girl and our family.  I cry. I wipe the tears away. I ask God for help. And, I get up again.

Is it hard? Absolutely.

But, I have no other choice. I have to fight for my daughter, as she fights for her life.

I am weepy as I type this because it is exactly a year ago today that I rushed La Petite Belle to the ER after lab work ordered by her doctor. (You can read the full story and her diagnosis here.)
This was the picture I posted of her that day. I scarcely can remember this fun-loving girl. Chronic pain and near-death experiences change a person.
When I've asked La Petite Belle, after she says she's scared, about what she's scared of ... fighting or dying, whatever it may be, she says she's not afraid of where she's going, just afraid of being without us. Oh my heart. And, this is why she fights. She said she would live every day in pain if it meant she could be with us. Oh my heart again ... aching, breaking.

There have been many ups and downs, many tears shed. Just when I think I have no more tears to shed, they come again.

I have had a broken heart before ... many times. But, never like this. I feel my heart break a little more each and every day. I think it's not even a heart anymore, but just crumbled pieces of what it used to be. Unrecognizable. 

I am unrecognizable to myself. We are all unrecognizable at this point. I have lost my passion for anything. I have no desires, no wants. I feel dead inside. My only desire, the only yearning of my heart is healing and health for my girl.

There are honestly days where I do feel hopeless, despite the fact that I know God is very present with me. Despair has become my closest friend. It's a very dark place to be. Lonely. Waiting for God to move, to answer, to provide the promise, to heal.

I'm sure you are appalled that such a "strong" Christian could be in such a place. But, I'm here to tell you that it happens. And, it happened to so many in the Bible who were close to God.

David wrote this and it so adequately expresses my inner self at this moment:
Day and night, I have only tears for food, while my enemies continually taunt me, saying, "Where is this God of yours?" My heart is breaking as I remember how it used to be. I walked among the crowd of worshipers, leading a great procession to the house of God, singing for joy and giving thanks--it was the sound of a great celebration! Why am I discouraged? Why so sad? I will put my hope in God! I will praise Him again--my Savior and my God! -Psalm 42:3-6

I weep.
The enemy taunts me, asking "Where is God, your Healer? Why would He allow this? Why would He not rescue your daughter from such pain? Where is He?"
My heart breaks a little more each day and I'm reminded of our life before this.
I'm reminded of the years my family has served in ministry. 
Our life has become something we don't recognize nor understand.
I'm reminded of all the truths I've learned throughout the years of serving God.
Yes, I am discouraged and sad ...

BUT STILL, I put my hope in God and praise Him for who He is.

No matter what, we will praise Him. No matter what, we will serve Him.
That's not to say we don't and won't hurt, but STILL we cling to Him.
It's the only thing we know to do. We know He is faithful.

La Petite Belle continues to fight as hard as she can against something fighting so strong against her poor body. We are into our 4th month inpatient and extremely heartbroken and frustrated. She continues to have some bleeding in her GI tract, but no specific spots where they could be cauterized to stop it. Her gut is just oozing. This is all still a result of the GVHD. Her pain is still severe, related mainly to that darn BK virus affecting her bladder. Her spasms and stomach cramping is excruciating. She is back on a continuous pain pump with demand doses when she needs them, but nothing really seems to touch the pain. The meds just make her extremely groggy. She's about on the 6th day of the new medicine since she's not responding a whole lot to the increase in steroids. At this point, the doctors don't have much more to offer other than just "wait and see". That's it. We wait. We see if she starts to really respond to something. This is the 3rd time she has had a bad flare-up and we took steps back in her treatment. The bad thing about this time is that she is on more steroids again after she had been weaned quite a bit and on a lot of pain meds, which had also been weaned. We were so close to really having a way to get rid of the BK virus. Her stomach is severely inflamed the doctors said, after her last scope. They couldn't even biopsy it because it was so fragile and they didn't want to cause more damage. So, day-in and day-out, we wait. I wake up each morning hoping for a breakthrough, for a miracle, for something to work. This is all very hard on a mama's heart, and a daddy's heart breaks just as easily, maybe more sometimes.

We continue to pray and ask God to continue His work of healing, that La Petite Belle's pain would be gone, that the virus would be gone, that she would respond to the meds ... honestly, just for a miracle in her body. Thanks to so many who are praying hard for us and standing in agreement with us for our baby girl's complete healing. We appreciate every single prayer.

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. 

Monday, April 4, 2016

No Words

(Our hospital room is full of Scriptures like this.)

When something tragic happens ... something really hard ... a difficult situation, whatever it may be, it's hard to find words to express how you're feeling and what's going on inside your head.

There's all the typical "Christiany" things you can say ... the same things people will say to you, hoping their words will help. But, unfortunately, they don't. And, unfortunately, everything you read that you think can help carry you through, really doesn't. Unfortunately, there are just no words sometimes. No words you can say to yourself, no matter how much Scripture you have memorized for such a time is this. And, no words that other people can say.

I find the only words I can say lately are "this sucks" and "there's nothing to say."

Have I given up on God?

Let me be TOTALLY honest with you .. the answer is NO. 

However, I have had moments where I've felt such despair and felt like I've lost hope. That's the worst place to be. Once you've lost hope, there's nothing to keep you going. 

I realize our ONLY hope is Jesus.

When all else fails, He's there, despite what I see and our situation.

There are many times I'm just angry ... angry that this happened, angry about everything the enemy has stolen from us, angry for what my daughter is missing right now as I scroll through social media and see everyone else's daughters getting to experience the things they should be right now. 

I have said "it's not fair" in my mind a thousand times. But, we all know life just isn't fair. Not at all.

There isn't a day that goes by where tears are not a part of our day. 

We feel sad. We feel alone.
We KNOW that God is with us so please don't misunderstand me.
You can still feel alone all while knowing He is still holding you.
That may not make any sense at all, but that's the best way I can explain it.
We do feel lonely.
This situation is hard and we are far away from pretty much everyone we love. That feels lonely.

The other part of this that hurts is seeing all the families who have come and gone in the matter of time that we've been here. Some have gone with not-so-good news, while most leave out of here better.

My heart has not only ached for our own situation, but for those here who receive the devastating words, "we've done everything we can do" or "they're just not responding to treatment." I cry just typing those words. There are families here who have experienced things far worse than we have.

Tomorrow marks exactly three months that we've been inpatient. January 5th we came with an overnight bag just in case we were admitted and we go into our fourth month continuing to not know when this will end.

La Petite Belle has had lots of ups and downs through this. 

The doctors expected we could be released by the end of this week, but don't think that's going to happen. She's been put back on IV meds and her steroids increased again because her GVHD has flared up again. This all happening after being weaned for so many weeks was heartbreaking. Her pain meds have been changed up a bit and a new one added which I think may be helping more than before. Thank God for that. She has started a new anti-viral to get rid of that BK virus that is the culprit causing so much pain. There are risks to it, so we're hoping it works quickly so she can get off of it.

I am ready for a "normal" and boring life. I am ready for a healthy daughter who can enjoy her life again. I am ready to feel like we're a family again. I am ready to get out of here and have a place that we can call home and all be together.

But, I am also realizing that I have to be content. Being content in every situation is what Paul talked about. That's where I'm struggling. I am not content about watching my daughter suffer day-in and day-out. But, I am trying to be content in knowing that God's got us in His hands and everything is under His control. If I say I trust Him, I have to be content. 

No matter how dire the circumstances are ... no matter how heartbroken I am ... no matter how many tears I cry ... I STILL have to be content. I have to be content in knowing He's got this. I can't be tossed back and forth every time we get a bad report. I have to trust and continue to be content.

Now, it's not easy. Not at all. Like I said, I literally cry every day.
Then, after I wipe my tears, I rest for a while.

So ... as far as an update goes on our girl and what's expected, I honestly don't know much anymore. Things change so quickly and I'm just trying to rest that, no matter how long we're here, that she will recover and be better for it. This isn't a short journey. In fact, this month marks a year since her diagnosis. 

We will keep pressing on ... trusting, crying, screaming, praying, believing, resting, hoping.
Thank you all for continuing to pray and believe for complete healing for La Petite Belle.

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, March 25, 2016

An Unpredictable Good Friday

I've often wondered why it's called "Good" Friday. It's the day Jesus was tortured, nailed to the cross, and died. I mean, I get it. It was for OUR good ... the good of all mankind. But, the Father God had to have been hurting on that day.

I can't compare our current situation with that of Jesus and the Father, but I have tiny glimpses of what He had to have felt. To watch His Son go through such agonizing pain had to have been torturous for Him, too. For His Son to ask Him to take the pain away if He could, and the Father to simply not be able to do that, had to have also been devastating for the Father's heart.

La Petite Belle has stripes on her back ... literal stripes. Her back looks like she's been clawed by a bear. The high-dose steroids she has been on have wrecked her skin. She had the MOST BEAUTIFUL skin ... the best in the family, that smooth, dark complexion. K Belle was always envious of it.

Every time I look at her back, I think of what Jesus went through to purchase her very healing.
I also think of what the Father saw and how He felt.

Just as it breaks my heart to see her in pain, I know it broke His. The difference is that He saw the bigger picture. I do not. In fact, I don't see ANYTHING but what today holds. I have no clue what tomorrow or the next day, week, or months hold. 

I know there is a plan and I'm just trying to trust in it. I'm just trying to surrender to a Holy God who knows way more than I do. I'm just trying to focus on who He is and what He says about us.

While I am thankful for the steroids, which have put her GVHD at bay, I hate everything else they have done ... the bleeding ulcer, the dark, red marks on her body, the high blood pressure, the high blood sugar, the insulin shots, not to mention the mental anxiety. There's probably more things I'm forgetting.

This "Good" Friday we spend in the hospital.

This Easter we spend in the hospital.
(our view of MD Anderson from our window)

But, as she lies here in the bed, I can't help to think about this being the day that Jesus paid for her healing. This is it. 

Despite what I see and the things that are going on, He paid for it. There's no doubt about it. When her body will line up with that fact is beyond me. I'm ready for it for sure. We all are.

This weekend, I will continue to reflect on Jesus' death on the cross and all that He went through, not only for humanity to finally be in communion with God the Father again, but specifically for humanity to be healed and whole. 

And included in humanity is our sweet daughter who continues to fight for this healing.

I have no idea what today holds. Each day is so unpredictable. One day, she seems much better, and the next day, she takes a nose dive and we seem to take a step backwards.

There has been actual talk all week about trying to get us discharged by March 31st. Whether that will actually happen or not is the question. She is not as far along in the healing process as everyone expected her to be today. She had a huge drop in hemoglobin yesterday so the search is on for where all that bleeding is coming from, yet again. She had actually been holding on to her blood counts pretty well after the other scare a couple of weeks ago. We seemed to definitely be on our way out.

I'm trying not to lose hope that it could still be a possibility. It could happen. But, also trying not to be filled with disappointment at the thought of another full week or more here.

Thank you for continuing to faithfully stand with us, praying and believing for La Petite Belle's FULL recovery and healing. Also, pray that she would be able to quickly gain her strength back. She has become very weak during the months we've been here, and she hasn't felt very well each time physical therapy has come around. Pray for all bleeding to continue to subside, her counts to remain stable, no infections, no more nausea, no more pain. I know I've said this before but ... enough is enough.

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.