Friday, February 5, 2016

I sit in darkness.

It's hard to tell the difference between day and night here.

The blinds stay shut.

The lights stay off.

I sit in silence. 

No voices.

No noise.

Just silence.

Day in, day out.

My girl wants it that way.

It helps her cope with the pain.

I sit next to her bed quietly.

Watching her.

Praying.

My heart ripping.

Aching.

Broken.

Wanting answers.

Expecting good news for this day.

Crying.

Waiting.

Tired.

Exhausted.

I sit longing for the day that light will break through this darkness.

The day when I can pull the shade up.

The day when she feels like her old self.

The day she sits up from her bed, looks at me, and smiles.

The day she laughs again.

It's been a long time.

My heart yearns for that day.

I'm ready for a breakthrough.

I sit in darkness today.

Waiting for the light promised in tomorrow.


I thank God today for His light that is always present even in our darkest hours. It's there even when we cannot see it .... when the darkness is overwhelming. Some days look pretty bleak. It seems like the darkness will never end. But, then the dawn appears. It ALWAYS appears. It has to. There won't be darkness forever.

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, February 2, 2016

Bright Spots.

I look for bright spots in our days here. Some days they are few and far between. Some days I have to just remind myself of the ones that have happened in the past because the day itself hadn't produced any bright spots at all.

Yesterday was a hard day. A really hard day for La Petite Belle, which means a really hard day for Mama Belle.

Her nausea and pain was extreme, despite the meds they had her on. Most of the days are filled with just trying to control her pain. As you can imagine, this is a lot for a parent to bear. I'm pretty much in and out of tears most of the day. Imagine your child crying in pain and there's nothing you can do. Imagine your child crying because they are so hungry and you can't give them anything to eat. It's definitely not something I would wish on my worst enemy. It really is a lot to bear. The days go by very slowly as I just hold her hand and pray for some type of relief for her ... for her healing to be seen quicker ... for good news.

Yesterday, at one point, she asked me to pray for her because her pain was so bad. La Petite Belle never really asks us to pray for her. We pray for her every day, but this time it was more of a desperate plea from her to me. Of course, I prayed.

Her pain subsided for a little while. She has moments where she's okay. They just happen to be small, short moments throughout the day.

Bright Spot #1: Her pain was gone for a brief moment.

Bright Spot #2 came later.

The nurse came in and said that we had visitors ... friends of friends. I peeked out of our window, but had no idea who they were. La Petite Belle was nauseous and not up for visitors, so I stepped out of the room.

Two lovely ladies stood there with gift bags filled with cards and stuffed animals. Turns out a local church, where Beau knows the pastors, gathered these things together for her. One of the pastors showed up a few days ago with a stuffed animal and prayed for La Petite Belle. She was having a good day that day and was able to really talk to him. I thought that was such a sweet gesture.

But, afterwards, that pastor went back to his church and had all his kids praying for La Petite Belle. They each made her cards and put gifts together for her. But, what one of the ladies proceeded to tell me next brought me to tears.

One of the kids said that he felt that God wanted him to give her this envelope.


The envelope included all of his Christmas money. I couldn't even believe what an amazing act of compassion and generosity was being displayed from such a young person, who didn't know my La Petite Belle at all. She is a stranger to him. My first instinct, as most of ours would be, was to give it back. But, I couldn't. I just stood there in tears. I hugged the ladies and they mentioned coming back another day.

When La Petite Belle opened up the envelope, neither of us expected to see over $200 inside. Wow. Still blows me away that a kid would do such a thing, when that's even a hard thing for an adult to do.

It also reminds me of the woman who gave all that she had as an offering.
" ... Calling His disciples to Him, He said to them, "Truly I say to you, this poor widow put in more than all the contributors to the treasury; for they all put in out of their surplus, but she, out of her poverty, put in all she owned, all she had to live on." Mark 12:43-44

This was all this kid had. And, as Jesus spoke about the woman being blessed, I know that God will honor this boy's giving and bless him also.

Let's call that last part Bright Spot #3 because it was such an unexpected act of kindness.

La Petite Belle especially loved the giant monkey at the top of her bed here. At one point, during her pain, she was sitting up and squeezing that monkey with all she had.


We are so grateful to everyone who is supporting us and helping to carry us through this. Saying "we are grateful" or "thank you" really just doesn't seem to express how deep our gratitude is.

We are continuing to trust God with every core of our being. He is good. His plans are always for good. He is our Healer. He loves us. He loves my sweet baby girl more than I can even imagine.

I don't understand this. I don't know why this is happening. I don't know what God's up to.
All I can do is keep trusting in who He says He is and how He's proven Himself to be faithful in the past, not only to others, but to my family and to me.


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, January 29, 2016

Months

Yes ... months. 

That's what Beau was told yesterday could be our stay here in the hospital with La Petite Belle ... not in Houston, but in the actual hospital. 

That's the last news I got before I had a good-bye breakfast with K Belle before I left her in Australia.

That's what was on my mind for the almost 20-hour travel back home by myself.

I spent a lot of time asking God how this was God's best for my little girl. I don't doubt Him nor His power. I don't doubt His love or His goodness. I don't doubt who He is at all. I know, beyond a shadow of a doubt, that He is faithful. Do I understand this? No, not at all.

Because all I see is suffering. I see my daughter suffering. I see my family suffering. 

Imagine the hardest thing you've EVER had to do in your life. Now, imagine you have to do it again, yet with worse circumstances. That's where we are right now. 

I will be staying every day and night in the hospital from here on out, as Beau will be doing more traveling back and forth because of work. We have been sharing an extra-large twin bed in La Petite Belle's room because we no longer have a place to stay. Let's not even talk about needing to do laundry. So, yeah ... those minor details aren't great at all, but they are simply that ... MINOR ... compared to the pain La Petite Belle is in. All we can do is continue to speak truth over her and pray for and with her.

We have a great bunch of people praying with us and supporting us through it and we appreciate that so much. But, truly, truly ... this is not just hard ... it's harder.

I wish I could tell you it's easier or everything's just peachy keen. But, it's not. There are plenty of blogs out there where you can read that kinda stuff. This blog has just turned into our own journey of our own hard.

Combine all our current life circumstances with leaving my oldest daughter behind in Australia for a year, and I was a complete mess all day yesterday. Thank God I was actually able to sleep a whole 10 hours straight on the plane. I guess I really was exhausted. And, an extra special bonus God worked out for me was that I had no one seated next to me, creating three seats I could lay across. Score! I was able to be weepy the whole way if I wanted to. But, I slept. So grateful for that.

I spent most of my time asking God questions I'd asked before, but mainly asking what He was doing in this. And, for Him to give me an enormous amount of strength. That's my prayer every time I think "I can't do this." I simply pray for God's strength to get me through.

As a parent, there's literally nothing I can do to help my child. Nothing. Beau and I have done everything we can. The doctors and nurses are doing everything they can. That's all we can do. God is the One who has control and heals. We have to just continue to trust Him.

There's not much new medical news to tell you except to say the doctors add more meds, take some away, add more. But, she is getting everything she can right now, short of chemo (which they wouldn't consider giving her because of the fact she had that mixture of cells). Now, we just have to continue to wait. We've been here what seems like forever, but it's only over three weeks ... four weeks on Tuesday ... already a whole month. Unbelievable. We will stay here until her GI tract heals. She won't even be able to eat or drink anything until her GI tract heals. It's been almost five weeks since she's eaten. She's lost some weight, but she's getting her nutrition intravenously. She's bored. She's hurting. She's thirsty. She's hungry. She's over it. And, frankly we are too. Enough already. Trying to have patience through all this is one of the hardest things. The days are long with especially with slow progress.

Thank you for continuing to pray for La Petite Belle's healing and for her pain to disappear. We know God is a Healer.

K Belle did get all settled into her apartment. The trip to Sydney had some great moments and some not-so-great moments, but I am happy that I made the decision to go. {I'll have to post a more detailed post about that later.} 


Now ... for more sleep. I woke up after a few hours of sleep, wide awake and hungry. So, as I write this, I'm sitting in the family room alone close to 1:00 am, sipping sleepy time tea, and working on getting back on schedule.

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, January 19, 2016

Torn

I have never felt so torn as a mother.

The current circumstances of our lives has forced me to make one of the most difficult decisions I think I have ever made. And, with that, I feel like my heart is literally being split in two.

What do you do when both your children need you at the same time? Not the kind of need where one needs you to wipe her butt and one needs you to make her a peanut butter sandwich. I long for those days where you can teach just a little bit of patience in your child and compromise on the timing of the need.

Unfortunately, that's not the case with me right now.

While La Petite Belle is still lying in her hospital bed, K Belle is off to Australia tomorrow.

The plan has always been for me to go with her. Plane tickets were bought; hotels were booked. Plans were made. I know I've posted before about making plans and realizing that those plans may not always happen, but almost six months ago, our medical team here assured me (as much as they can assure anything here) that by the end of January, La Petite Belle should be doing fine and I should definitely book the trip to take K Belle to Australia. So, I did.

Now, we find ourselves in another unplanned, difficult situation.

For the last week, I have debated on whether to go and was pretty much set on canceling my trip. However, the doctors, after much questioning by me, disagreed with me canceling. In fact, the whole staff here kept telling me I should still go. The doctor said that she did not see La Petite Belle taking any steps backward and that she is stable. That was definitely good news because honestly, we hadn't seen that big of a change in her symptoms.

But, just this morning, we saw a little glimpse of progress. For the first time in weeks, La Petite Belle sat up and began talking to us. K Belle claims it's because she's here, but La Petite Belle's nausea didn't seem to be an issue. She even requested to brush her teeth. We had a good couple of hours until ... one of her drugs was hung - Foscarnet. This particular drug is targeted to cause any of those viruses that were in her system in the past to not rear their ugly heads during this time that they are suppressing her immune system. Within 20 minutes, the nausea appeared again. Of course, one of the side effects of the medicine is nausea. So, the doctors are considering reducing her dose to once a day and I'm hopeful that this will also reduce her nausea. It was such a joy to see a little bit of my girl back this morning! It was the most she'd talked or been awake in days.

It's been difficult even thinking about leaving her. Just leaving for the weekend hurt my heart.

I wavered for days, weeks now about canceling my trip.
In the midst of my decision-making, I got a phone call from my parents. They had booked my mom a flight from overseas to help Beau out with La Petite Belle while I would be gone. They also encouraged me to go.

As Beau said, "Mama can't be in two places at one time." He told me to go. So, the plan remains. I did shorten my trip to only be in Australia six days. It will definitely be a whirlwind trip for me.

Seeing La Petite Belle this morning gave me a little peace about leaving tomorrow with K Belle. I so wanted to see some improvement before I left.

As a mom in this situation, I was going to feel guilty, no matter what decision I would make. I'd feel guilty for leaving La Petite Belle in the hospital, and for putting so much on Beau. Seven days in a hospital room can get quite depressing without a break. Your mind starts to mess with you a lot. I'd also feel guilty for not going with K Belle. There is a lot to be done for the year she'll be in Australia ... furnishing her room, opening bank accounts, handling cell phone issues, and just plain old doing the going-away-to-college-Mommy thing. Putting her on a plane to a foreign country to fend for herself and handle everything would have made me also feel like a bad mommy. Once your children turn 18, you don't just kick 'em to the curb and say "fend for yourself." They still need you as a parent. And, a girl will always need her mama.

I would love to be there for both of my girls at once. But, unfortunately that's not humanly possible.

So, tomorrow evening, K Belle and I will fly out on that long flight to down under. We're so proud of her for chasing her dream and following the call of God on her life. I know God's going to do something awesome in and through her.

It's been such a joy being her mom and watching her mature and grow.
I'll definitely miss her something fierce, but this is just another area where I can trust God to take care of my children.


Again, thank you for agreeing in prayer with us for La Petite Belle's complete healing.
We appreciate all your love and support!

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, January 15, 2016

"Tired, Hungry, and Angry"

Those are the words La Petite Belle used to describe how she felt after the doctors came in two days ago. (I wasn't able to post an update because the Internet here at the hospital is not really up to par. Some days, we just don't have it.)

We got even worse news on Wednesday when the doctors said that La Petite Belle's GVHD (graft-versus-host disease ... where the graft {donor cells} are attacking the host {body/organs} because they see them as foreign and not belonging to the body they're supposed to be in) is Stage 4, meaning the worst kind she can have and very serious. By late morning, we were also told that she not only is not be able to eat anything, but she now can't even have anything to drink. She is only allowed to suck on ice chips or have a few sips of water throughout the day. The reason for this is that her gut needs to rest. It's inflamed and anything could irritate it. There's risk of a perforation or tear in her intestines or colon.

This was not the news that we expected yet again.
La Petite Belle's emotions are totally acceptable right now. I would be angry too. She just feels miserable.

Yesterday, her hunger was gone and she only complained about being thirsty. You can imagine, being a parent, how hard it is to watch your child cry because they just want water and you can't let him/her have it. It's horrible.

She's been in a lot of pain so they increased her Morphine drip. They just really want her to rest and allow the drugs to do their work. She's on steroids and immunosuppressive drugs, and a slew of other kinds of things, like TPN again so that she has nutrition, since she's not eating or drinking. Because of the Morphine and some of the other anti-nausea drugs, she's been mostly in and out of sleep throughout the last couple of days. It really is the best thing for her to just sleep. She's really only up to go to the bathroom or if she's in pain, so sleep is the best.

The doctors have told us that this particular type of GVHD is the hardest to treat and that the gut takes the longest time to heal. We will be in the hospital for a while now until they see signs of that healing.

It's been a very rough week, but even rougher last few days for me and for Beau. We have cried a lot. We've cried because we're watching her hurt. We've cried simply because this is all heartbreaking. We've cried because she's already sad about her sister leaving on Wednesday and she misses her. We've cried watching her cry. And, we've just cried out to God to continue His work and healing in her body.

I think about the Scripture that speaks of the man with leprosy going to Jesus for healing and saying this statement, "Lord, if you are willing, you can heal me." And, then Jesus said, "I am willing" and immediately healed him.

Jesus is always willing. The healing is there. It just may not look like we think it should. I don't have a clue what God's doing, but I know He is ALWAYS willing to heal. We ask. He heals.


That's what we stand on as a family. God is a healer, plain and simple. How He does it is up to Him. When He does it is up to Him.


Again, as a parent, having no control over this situation is the worst feeling ever. I can't fix this. Beau can't fix this. There's nothing we can do but get our girl the best care possible, pray, and trust in God.

So, that's what we're doing.

We are believing for healing and a miracle from God for our baby girl.

The bit of good news is this ... (yes, there is a little) ... she has responded well to the steroids. Her respiratory system is normal now; her breathing is normal; her cough is almost gone completely. That means the steroids are working. They just take a longer time to work on the gut.

The illustration they gave us was this: Imagine you have a bad abrasion or wound on your arm and how long that takes to finally heal. It's the same thing in her gut, but it's on every inch of her GI tract. All the pieces need to rest and heal. Her counts are also still good despite all that is going on. So, we'll count that as another plus.

Specifically, these are what you can pray for in regards to our girl's healing ... Please pray that her gut heals, every inch of her gut. Pray that her nausea and pain would finally subside. Pray against GVHD throughout her system. Pray that her issue of being mixed cells does not come back because of the immunosuppressive drugs. We want the GVHD gone, but we also don't want to go back to mixed cells. We simply pray for complete healing in her body. God knows what she needs. He's the One who made her.

Also, pray for our housing situation to work out after we leave since we'll have to stay in Houston again after we're discharged. How long we have to stay, we don't know. It could be a few weeks. It could be longer.

Thank you for your prayers and support! We know God will be glorified in all 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.

Wednesday, January 13, 2016

This is not what we expected. {Day 153}

As Christ-followers, we are taught to believe the best in all things and in all situations. I've always believed that. I graduated from Oral Roberts University, where the motto is to "expect a miracle." I've had that drilled into my head and I have always, whatever the circumstance, expected the best outcome. No matter what.

I expect the best from God. I expect miracles. I expect all situations to work out for good. I expect God to be true to His Word and His promises. I expect that, again, no matter what, that everything will always be okay.

That's the statement of the year in our household. I've said it over and over again. Any time we get another bad report or things don't work out as planned, I say, "It'll be okay." Because, in the end, it WILL all be okay.

I know God's in control. I know He's still got us. He'll still provide. He'll still be with us. He'll still guide us. He'll still continue to heal our La Petite Belle.

As I write this, I'm sitting in a place I never thought I would write in again ... the hospital room in the bone marrow transplant unit at Texas Children's Hospital. We're here again. We've been here a little over a week.

We've had some extremely scary moments ...  moments I wouldn't wish on any parent. I've cried my eyes out. Beau's cried his eyes out. And, last night, La Petite Belle cried her eyes out. 

While we know that God is with us, it's still a hard place to be again.

Two nights ago, we didn't really know that our girl was going to make it. It was the scariest thing I've ever faced. I listened to her moan in pain, in her sleep, as she was on pain medicine. And, all I could think of is that she was making the same sounds my grandmother made as I sat with her in the hospital when she was dying of cancer. It was horrible, knowing that not much could be done about the pain. 

What was even scarier was being here so long with the doctors not knowing what was going on so they could treat it properly. There was lots of waiting and no answers while our child was suffering.

Then there was a moment. Everything shifted.
We had been praying, along with tons of other people.
And, as we knelt to pray with her one last time before we all went to sleep, within 20 minutes, she popped up and said, "I feel better."
It was like night and day ... death and life.
She went from lying in a bed, moaning in pain, to ready to watch a movie, change her clothes, and brush her teeth. It was pretty amazing to experience and we give God all the glory for that!

These picture were taken about 30 minutes apart. She wasn't just sleeping in the first pic; she was lifeless and it's how she'd been for days. She's in the same hospital gown she had been in for days too.

The doctors did realize that they needed to change her medication and that helped a lot too and helped her through the next day.

The blow that we didn't expect was the diagnosis that she was given. Remember ... I only expect good things, especially in our current situation. The doctors said she has GVHD (graft-versus-host disease) ... severe GVHD in her gut. The reason it took them longer to figure it out is because her symptoms were unique and she didn't present the standard symptoms associated with GVHD. The other thing is that it is not just in her gut, but is more systemic and has affected other areas, including her respiratory system, which was why she was having breathing problems.

With that being said, we will be in Houston for a while longer. Even if La Petite Belle gets discharged from the hospital by the end of the week, they still want us close by for a little while for sure. Apparently, GVHD of the gut is the most difficult to treat.

We always knew that this was a risk, but never thought it would happen because we always expect the best. They did tell us this may happen and they are no strangers to this disease.

So, we find ourselves in the same place for a while longer.
Let me tell you ... it sucks. There's no other word for it.

Not only does it suck in general, but the timing sucks. K Belle and I leave for Australia next Wednesday. Yes, Beau and I have made the decision for me to still go with her as planned. It's an easier decision even now, knowing that he and La Petite Belle will be in Houston anyway if there were any issues that arise. He said, "Mama can't be in two places at one time." So true. If La Petite Belle is being taken care of, there's no reason for me not to go to get things done with K Belle. I mean ... she will be gone a year in a country on the other side of the world. There's a LOT of things that need to happen. So, I'm working on trying to get back to the states sooner, but we'll see if that all pans out. You know how airlines can be. I definitely need some favor there.

La Petite Belle is beyond upset. In her words, "I'm just sad." She just got home. She was just starting to get back into a routine and now we're stuck here again. Not only that, she's missing her sister something fierce. And, even more knowing we will only have a few days with her before she leaves for an entire year. We're all pretty sad about that. We already spent so much time away from her, and now her last week, we're apart most of it again. Ugh.

Now for the good news ... (yes, there is some in all this!) 
La Petite Belle responded amazingly to the steroids. Overnight, she was a new person. She still has some pain and is on pain meds, but it's definitely not as bad as it was. The doctors have said that we will wait to see what the next 24-48 hours hold as far as when we will be released. We are hoping for the end of the week.

Other good news is that we may also have a place to stay again. That's all in the works and we should find that out soon. When I ask the doctors how long they think we will stay, of course, they have no answer. It could be a few weeks for sure, but maybe a little longer.

We are thankful that she is in the place that she is, where we know she's getting the best care possible. It's surreal being back here, but very different this time. It's weird to say, but this feels like normal life for us. I so don't want it to be. And, I know there will be a day when it won't be, but for now, it's home again.

We know and are still expecting that God is working out our daughter's healing in His way and in His timing. All we can do is continue to trust His faithfulness and His Word.

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, January 4, 2016

I am the fun one. {Day 144}

Really I am the fun one.

Ask around. Ask my friends. Ask anyone who knows me. They'll tell you how much fun I am. It's usually the word I've heard people use to describe me most. I promise.

But, lately, I don't like what I see ... every single post is about sickness. Sure, it's mostly thankful and hopeful, documenting this journey we're on. But, geez ... who wants to read about sickness and hard times EVERY. SINGLE. DAY??

Not me.

I would probably just de-friend myself. I think some people actually just don't want to hang around me as much right now, which makes me giggle because I totally understand. I think there are too many expectations, not from me, but from them. These expectations are ones they put on themselves to say the "right thing," whatever that is. There is no "right thing" so everyone is off the hook! We're just trying to be normal.

People like to read happy stuff and stuff that makes them feel good. I get it. I want to read that. They want to be around fun, happy people too. Nobody wants to hang out with someone who may break down in tears while sharing chips and salsa. I don't.

Trust me. I want to have fun. And, I want to be the fun one again.

I've gone from 99% fun to 52% fun ... still fun, but not as often and the fun is mixed in with tears.

So, don't worry ... the fun me is still in me. My posts will be returning to light-hearted commentary on life and stuff as soon as I can get there. I would LOVE to write about my love for Vic's VapoRub, circus people, or biscuit cans again. Just not there yet. Soon, my friend, soon.

Day 144

We're struggling a bit this past week. 

Let me start with the good news though! La Petite Belle is 100% donor in her blood and T-cells.
Praise God! We are thrilled and so grateful for this news.
It's what we've been praying and waiting for.


With that said, La Petite Belle has been very sick for almost a week now. The symptoms run the gamut ... severe headache, fever for days, skin rash, elevated liver levels, and we're now going on day four of vomiting and intense stomach pain. My girl hasn't eaten since Friday.

We've been chasing symptoms and working with our doctor here and at Texas Children's Hospital to try and get this thing figured out. Two ER visits and a doctor's office visit, but no answers as of yet. However, she and I will be traveling to Houston tomorrow to get her checked out. Our nurse practitioner said to come prepared for an admission just in case. {insert frowny face here}

Please pray for us when you think about us. La Petite Belle and I will head to Houston early in the morning. Hoping and praying for relief for her!

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.