Friday, November 27, 2015

Thanksgiving and Grits

It actually seemed like our lives were normal this week.

Mostly normal.

La Petite Belle is bored to tears and we still have to be careful about who she is around and where she goes ... but we are as close to normal than we have been in a while. When you take a people-person away from people, they have a hard time with it. She has always been and continues to love people ... the more, the merrier. She's desperate for company and something to do pretty much every day. 

Homebound schooling starts Tuesday for La Petite Belle. I don't think she's too thrilled about that part of seeing people, but it's gotta be done. Good thing is she left the Houston school district with straight A's. Now, let's see how she faces Lafayette parish.

I can't tell you how many times I've answered the loaded question of "How's Katie?" since we've been home. The answer is pretty lengthy so "she's good" is my standard. And, she is "good" right now. She's glad to be home. She feels fine. It's only the internal things that are any issues for us right now, which we hope and pray will be remedied soon. We're continuing to believe for great results from all her labs and testing. 

People are pretty amazing. They seem to genuinely care and love my girl and my family. It's humbling and awesome. 

We spent the week unpacking (yes ... still unpacking), doing more cleaning, prepping for Thanksgiving, and just trying not to think about having to go back to Houston for our clinic visit Monday. It's gonna be a long visit and I have to do this one alone. Driving to and from Houston is not my favorite.

Thanksgiving Day was great! 
We had a quiet lunch and some of our closest friends came over. It was relaxing and seemed very stress-free.

I woke up that morning with my heart full of gratitude. And, went to bed with an overflowing heart of gratitude. I prayed a prayer of only thanksgiving that night. It's all I could do. My heart ached with gratitude for  where we are now, what God's bringing us through, and how He's guiding every step of the way. Has your heart ever ached with thanksgiving? It's overwhelming for sure. 

I thanked God for blessing me with these three amazing individuals in my life. I wouldn't trade them for the world and treasure them more than I can explain. I thanked God that over twenty years ago, He saved me, He called me to a greater purpose, and most of all, He loved me despite of myself. I thanked God that His plan is so much bigger than what I see and that He is ALWAYS going to do what's best for, not only me, but my family.

I conned the family into taking a picture. There was some complaining, but we made it happen.

And, y'all ... I made grits.

Not just any grits.

Zea's Corn Grits.
(For those of you who don't know Zea's, it's a fabulous restaurant here in Louisiana and corn grits is one of the many delicious dishes they are known for.)

I haven't been up to cooking a whole lot, except for what La Petite Belle has wanted, which tends to be macaroni and cheese and pizza. So ... I'm finally back at it and can start sharing recipes again. Y'all know I like to cook, as much as I like to eat!

I only share the yummiest recipes here, so trust me, this was DE.LISH!
You'll thank me later.
WARNING: This dish has lots of cream and butter. You know it's gonna be a good one!

Zea's Corn Grits

2 c. water
2 c. heavy cream
1 c. yellow grits
1/2 pound butter (yeah, I know)
1 T. salt
1 ear grilled corn (I used more.)

Bring liquids to a boil. Stir in grits. Add butter. Cook at simmer until thickened. At end, stir in corn.

That's it. Easy peasy.

Happy post-Thanksgiving! Hope that you got to spend some precious time with the ones you love!

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

Saturday, November 21, 2015

Day 100

Well ... we've made it to a milestone.

Day 100 is today.
It's been 100 days since my baby girl received her beautiful bag of stem cells from a generous stranger, who I hope we get to meet and thank in person one day.

We still have a long road ahead.
As Beau said to me, "We're still closer to the beginning than we are to the end."
In the grand scheme of this journey, that is true for our sweet La Petite Belle. Her journey will continue for the rest of her life.

At this point, our main issue is those pesky T-cells. Her percentage of donor T-cells needs to be 100% or close to that. Unfortunately as of last week, the results show she was only 14% donor T-cells, meaning the other 86% are La Petite Belle's. This test was after her initial T-cell infusion (DLI - Donor Lymphocyte Infusion ... that's the actual medical term for it) of 500,000 cells. We are set to return to Houston the Monday after Thanksgiving for another dose; this time the dose will be doubled to a million cells. It'd be great if you could join me in praying for a miracle with those T-cells and that the results come in from this week's test with a much greater percentage. God is able. And, He's always in the business of defying numbers and percentages.

La Petite Belle feels fine, other than getting tired pretty quickly when she attempts to do any type of physical activity. She rode her bike up and down our street with a friend last week. After 15 minutes, she was exhausted. Baby steps, baby steps.

She has had no sign of the main concern after stem cell transplant ... GVHD (Graft vs. Host Disease). She's also had no infections, only minor viruses that we dealt with following transplant.

Her personality has come back and she's starting to be her old jovial self. Only problem is that she's limited on where she can go and who she can be with, which means that bubbly personality is wasted on only us. I'm sure she'd love to be able to share it with anyone else besides us. And, we could have someone else respond to her daily, "I have a question." Actually, we get that about three to four times daily and some of the questions, there are no answers to. I'm sure she's figured out by now that Mom and Dad don't actually know everything.

 She's still to avoid crowds until six months post transplant, which takes us to February. She can go places, but there are all kinds of factors that have to be taken into consideration when and if she goes. We're taking one day at a time, one event at a time. I just wish I could hang a sign around her neck that says, "Please don't touch or breathe on me. And, could you wash your hands, please, even if you don't touch me? It's just good hygiene so that you don't spread your deadly germs to me or anyone else you come into contact with. Because, believe it or not, everyone has deadly germs on their hands and we could keep each other healthy if we all just washed our hands throughout the day.  I'm not trying to be mean. I do appreciate your concern and would love to hug you if I could, but I just had a stem cell transplant. Thanks for understanding." That's a lot to write on a sign.

So ... I guess I'll just stand guard over her like a Mama Bear and preempt hug attempts. You should see how I spring into action after I hear someone cough!

For now, we remain simply thankful. Thankful for all God has done in La Petite Belle's body, physically and spiritually ... for what He's done in and through Beau, K Belle, and me ... for what He will continue to do ... for proving Himself faithful.
What an amazing Thanksgiving for our family!

We still have a long way to go, and come January 1st, start all over with our high insurance deductible. We know this will be a challenge for us with me not being able to work full-time like before as of right now and the travel expenses and appointments still to come. So, we thank all of you who have given to support us through this. We greatly appreciate it!
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses.

Friday, November 13, 2015


That's such a big word.

It actually comes from the verb "appraise", which we all know means to set a value on or a price. This is probably why people themselves like to know they're appreciated, that they're valued. Everyone wants to feel valued. It's natural.

We think we appreciate things in our lives. We think we understand how valuable even the little things are in our lives. I'd venture to say, we even think we show our appreciation and gratitude enough on a daily basis.
But, I'm convinced that true appreciation follows something hard.

All of us here have grown to appreciate certain things more now than ever ...
from the little things like, tucking our kiddos in bed, Saturday morning family pancake breakfast, and answering question after question from our inquisitive La Petite Belle ...
to the big things like, every single second we get to spend with K Belle before she leaves for Australia in two months,  having a job, family and friends nearby, and most of all, sharing some pretty major, gut-wrenching moments with our La Petite Belle in this whole journey of saving her life.

Beau and I have each grown and expressed to each other things that matter to us most and those things we truly appreciate. It's in these moments where you forget the crap (yes, crap ... there's no other word for it) and push it to the side and learn to treasure the things that really matter in your life. For us, it's our God, our family, and our friends/community. There's a lot of junk that you can cut out of your life when you keep these things in the forefront.

Something I didn't expect was how much La Petite Belle would grow in appreciation for life and the things of life, large and small. I never wanted her to have to know this at such a young age, but thankful that she's got a grasp on what's important.

There have been moments when she has gotten gifts or received thoughtful texts or calls, where she has cried or expressed how grateful she was for them. In the past, she would've been thankful, but the appreciation goes a lot deeper now.

Yesterday at our clinic visit, our doctor asked this question:
"Do you want to go home for the weekend?"

Granted. We are not Day 100 yet. Today makes Day 92.

It caught us off guard. 
We knew the plan was to go home next weekend, but we didn't expect to be able to go home beforehand, even for a quick trip.

La Petite Belle's eyes started to well up with tears once the doctor walked out. I asked her if she wanted to go home. The answer, of course, was "yes." 

Even if she couldn't go anywhere, she still wanted to go home.
She wants to see her sister.
She wants to sleep in her bed.
She wants to see that other dog. Ugh.
She wants to see some friends.
She just wants to be home.

There is an appreciation of home like never before. Home, of course, is where we all are. And, finally, for the weekend, we will all be together under one roof.

We have no new news regarding her T-cell test and infusion, only that her own old T-cells last week were starting to multiply. The T-cell infusion was done just at the right time. Now, we wait longer. It could take a couple of weeks to get the full results of the infusion. Then, the doctor will know if we need to do another one.

So, we will be home for the weekend.
We will return to Houston on Monday to await our next appointment.
Then, hopefully be home again the following weekend, returning once a week for a clinic visit. This once-a-week thing will continue until there is some good results from the T-cells.

Please continue to pray with us about those T-cells, that the donor cells would multiply and take over, that La Petite Belle's T-cells will be no more.

Thanks to everyone, for praying and believing with us!

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

Tuesday, November 10, 2015

Our lives will look differently.

I've posted before about how life's circumstances, especially like these, change you. They change everyone close to you. It can be a good thing or a bad thing.

Here's the truth ... There are definitely some places in my heart that have been hurt through this. I wake up some mornings and ask God to make things not hurt and, most of all, not allow hurt to turn into bitterness. I ask God to make all of the hard things change me for good, make me a better person, allow me to be a part of the bigger plan in this.

But, there are also some amazing moments that I hold close in my heart, that I go back to and thank God for, that I recall when my heart gets heavy. God's done some awesome things and I know He will continue. 

God's character never changes even though our life does. He is good even when our life is not or our life gets really hard. 
Suffering doesn't negate God's goodness.
He's good no matter what. That's just one of the many things God's shown me in this. When we know who God is and His character, it makes trusting Him a lot easier. He is good. The end. He can't do evil. It's not possible. This makes my love for Him even greater, knowing His plans would never be to harm me or my child or any of His children.

With all that said, I know that our lives will look differently from here on out. It's not like we will get home in a couple of weeks and "BAM", everything is back to normal. It won't be. It will be better for sure and progressively getting better. But, it will be different. This will be a life change for us and especially for La Petite Belle. She will be dealing with check-ups for the rest of her life ... hospital visits at Texas Children's Hospital (yes, throughout adulthood), all kinds of testing, and the anticipation of test results. I hate that for her. But, again, God is faithful.

DAY 89+ 
We are a little under two weeks from being able to return home. We're "planning" on leaving next weekend.

The doctor doesn't love us going home right now because we still don't have all the results from those  T-cell tests. A test was done last week before she got the additional donor cells and then blood was drawn yesterday for another test. It may take a couple of weeks before any sort of change shows up from the T-cell infusion.

However, because La Petite Belle doesn't have any issues ... hasn't run fevers, shows no signs of GVHD, no infections, kidney and liver functions are fine, counts are stable ... there's really nothing here to hold us, especially since her PICC line got pulled out yesterday.

Yep. It's out. Not because we wanted it out but because it was getting clogged every week and La Petite Belle was having to get poked anyway, so why keep it in? We opted to take it out. 

The only reason it was kept in was because of lab draws and possible infusions. If it wouldn't have kept clogging up, we would have kept it in case she would have needed more T-cells. If that does happen, they are able to infuse through an IV. But, we are hoping and praying that the first infusion did the trick.

Now, here's the not-great news for us ... we will have to travel to Texas Children's Hospital once a week for now because of this T-cell test. This particular test is only done here and can't be done through our doctor in Lafayette. So, for now, we're driving once a week. The results of each test will tell us when we can start coming here less and less and begin to use our Lafayette doctor for lab draws.

So, yes ... we will be home before Thanksgiving. Praise God!
But, we will be returning to Houston weekly for now.

Please pray for these donor T-cells to do their job and that any remaining cells from La Petite Belle would be gone. Also, pray that the donor cells would continue to grow and multiply, so that her counts can keep rising. It has been kind of a slow process, but we know the marrow is working. 
We're also praying for La Petite Belle to remain infection-free, bacteria-free, virus-free, germ-free, etc.

Thank you for your continued prayers and support!

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

Monday, November 2, 2015

This kinda stuff changes you.

That's an obvious statement, I know. Any time someone goes through tragic circumstances in life, it changes them.

I've learned that what you need to decide in these very moments is how you will let this situation change you. Will you allow this to make you better? Or will you allow this to destroy the very person God created you to be? Will you allow it to diminish who you are? 

I'm going to be honest with you right now (like there's times when I'm not). I've wanted to hide. I've wanted to give up on anything God had ever called me to do. I've used this moment as a reason to quit any type of ministry altogether. No one would ever blame me for quitting it all, for wanting to just focus on my family, to lay low, to hide away. Lots of people do it.

And, then there's those others who would ask why wouldn't I just do that. It makes perfect sense.

Honestly, I'm still searching for answers on all kinds of stuff from God. I don't have all the answers. Actually, I don't have ANY answers. I know that I have to take La Petite Belle to a clinic visit today, help her get through her online school lessons, and I have two more loads of laundry to do when I get back. That's pretty much the only things I know right now. I've already written numerous thoughts here on God's plans versus my plans.

When my children overheard me talking to Beau about not wanting to do ministry anymore, their faces got all disappointed and sad. Beau did the same thing.

But, I don't want to stay in anything JUST because of disappointing someone, not even my family. I also don't want to stay in anything because of my own selfish desires. I ONLY want to stay in something because I KNOW God wants me to be there. I'm waiting on God. I know He'll answer me in His time. I'm pretty sure He knows I've got a lot on my plate right now. All He's calling me to do is be right here where I am right now. To be Jesus. To care for my family the best way I can. And, to care for everyone else the best way I can.

I have always been the kind of person who likes answers RIGHT NOW. I never liked being in limbo. But, I've changed a bit. I'm not rushing God on this. I'm not rushing myself either. I'm going to just be still. I'm going to listen. I'm going to look. I'm going to wait. And, I'm not going to worry.

I know God is faithful. It makes it easier to rely on Him when you get that.

The other thing that REALLY changes about a person going through hard circumstances like these: there's a lot of stuff that just doesn't matter anymore. Stuff that was important isn't anymore. Stuff that you allowed to take up space in your mind before just isn't there anymore.

It's hard to not say, "WHO CARES?" or "That's so stupid. It doesn't matter," as other people around you talk about trivial things. That's definitely a downside because and that wouldn't be very nice to say. So, I try to stay interested and concerned even though my mind may be going all over the place.

That guy who said, "Don't sweat the small stuff," was onto something. In a moment's notice, your life can change and the only things you will be focused on are those things that are important and really matter to you. If only we could see through those type of eyes every day. 
God, let me never forget what matters and forget about what doesn't.

Today is Day 81+ ...

Getting to the eighties seemed so far away. But, we're here.

We're still going to clinic visits twice a week. Today, we will be at clinic and we are hoping that the collection of T-cells from our donor will happen tomorrow. If that is the case, we will be back at clinic on Wednesday for that infusion. We are definitely ready to get that done and it seems to be happening quickly, so thank you all for praying specifically for that. If it is done this soon, that allows the doctor to really keep a good eye on La Petite Belle for the next several weeks for any signs of Graft-Versus-Host-Disease.

Last Friday, we got to see our good friend, Colten, at clinic for all the fall festivities. Although La Petite Belle felt a little out of place, she dressed up to see her buddy.

Texas Children's Hospital is fantastic with activities for patients. The only downside is that most patients are younger kids. I know that La Petite Belle feels out of place and alone quite a bit because of that. There's just not as many teenagers. I do wish that she would've had others her age to talk to, not that she'd be able to be with them because of the whole germ issue. But, even just meeting some and being able to contact each other via text or social media would've been great.

I met one other patient her age while La Petite Belle was getting her Pentamidine treatment (to prevent pneumonia) earlier last week. Her aunt, who was her primary caregiver, began to tell me how this 16-year-old lost all of her friends and has actually never returned to school because she's so far removed from that environment. Like I said, this changes you so much. I can't imagine La Petite Belle going back and relating to others her age, just shooting the breeze about nail polish and the latest boy band. She's matured in the things that I never thought she'd have learned this early. She knows what's important, but longs for the days when she can care more about what eye shadow to wear rather than how she's going to cover her bald head (because she's said she doesn't want to be "that girl,  the one who's sick"). She's just ready to be a normal teenager again. It'll take some time, but it will come.

I know that people will think once we get home, everything will be back to normal. We'll still be far from normal, but inching our way back there nonetheless. Our lives will never be the same, changed forever. We're still working on making decisions about La Petite Belle's future with school (she won't be going to school at all this entire year due to her new immune system) and how my future job (yes, there will be one at some point) will be affected by it.

This has definitely changed us all. It's changed, not only the physical and everyday aspects of our lives, but it's changed who we are on the inside.

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

Wednesday, October 28, 2015

Nothing's definite in this world.

That's kinda where we've lived for the last six months.
Wow. Has it been six months since my girl's diagnosis?
No, it hasn't ... it's actually been almost seven months. Unbelievable that we've been on this journey this long and still more paths to travel.

We've learned that things can change on a dime, in a moment, in a second.
Don't plan. Don't predict because you just don't know.

I find myself not saying things out loud about the possibility of us leaving because I don't want to jinx it. I know jinxing is not an actual thing. 
However, I feel like giving words to MY plans leaves less room for God's plans. 

I'm at the point of just trying to trust and not plan.

You can make all the plans you want, but the Lord's plans will prevail. - Proverbs 19:21 
(That's my version.)

That's a hard thing for people who are planners and like to maintain and have control. Really hard. Because my plans are pretty good. I know them. They make sense. And, I trust them.
But, God's plans are better. They may not make sense. But, I have to trust them.

Today is Day 76+ ... 76 days since La Petite Belle's stem cell/bone marrow transplant, which means 24 days until Day 100+.

This journey is filled with bumps, stops, and turns.

La Petite Belle is doing well. She feels fine other than being tired. Her blood counts are still holding steady in all areas. However, her white blood counts could use a little boost. 

She was 100% donor in her marrow, which is most important. But, she still has some of her own cells in her blood. The issue now is that the majority of her cells that remain are T-cells, which are a type of lymphocyte (white blood cell) vital to her immune system. They're pretty powerful white blood cells. Her other white blood cells seem to be mostly donor cells. In order to knock out her remaining T-cells (they wouldn't want them to try and take over the donor cells), they will be requesting T-cells specifically from the donor. They are hoping to have the collection next week and will get them infused into La Petite Belle. They will also collect enough to freeze in case she would ever need more. Due to the fact that La Petite Belle will get more of these power-packed cells, her risk of Graft-Versus-Host Disease is a little heightened and we will all be watching her closely.

With all this being said, we are still hoping to be home the week of Thanksgiving barring any issues. As I said, we just don't plan that much anymore. Nothing is ever definite in this world. The doctor did seem to think that even though we would be getting this special infusion, we could still go home around that Day 100+.

We are beginning to really feel the effects of being away from home for so long. Some days are particularly depressing, while others are no problem. We are trying to keep our spirits up and not grow weary.

Please continue to pray for us and this new issue. Pray that the donor cells could be collected quickly and La Petite Belle could get them quickly so that our stay isn't prolonged. Also, continue to pray for the marrow to produce even more than it is now and that all of La Petite Belle's cells would be completely gone.

We thank God for all He has done and continues to do within La Petite Belle and our family. He is fighting for us. He is on our side. We stand in awe of His grace and faithfulness.

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

Friday, October 23, 2015

We think we know.

This picture showed up this morning on my Timehop app. 
(Sidetone - How great is Timehop?! As if I'm not already super sentimental and hormonal, it leads me to tears sometimes. Get it if you don't have it. You'll laugh and sometimes cry.)

Two years ago, I left my job of seven years. My hubby was my boss and I worked at a place I loved. It wasn't perfect. No place is. But, I loved the people and loved the things that I got to do.

Beau and I each prayed earnestly about me leaving when another job opportunity presented itself. It was a great opportunity financially for us. It was scary for me because it was a field that I had never been in. I was definitely more comfortable where I was.

Beau and I each believed that this new job was an open door for us to get out of debt and a way for us to provide more for our children, especially at that time, K Belle.

K Belle was determined to go to Hillsong College in Sydney, Australia (where she will be attending this coming January). It'd been a dream and something on her heart for years and she wasn't backing down. This would be quite costly for us, but we knew this was what God wanted for her.

Me getting this new job would allow for us to better afford to help her go to Australia for a year or possibly two.

At least, that's what we thought.

We thought this new job was for those specific purposes.

Little did we know God was preparing us for something way bigger. A storm was coming and we needed to be ready.

I now know that those almost two years at that job was preparing us for this time we would need to be available to care for La Petite Belle.

Looking back, I see God's hand all over our situation to prepare us financially.

We can make all the plans that we want, but they really mean nothing to God. And, our plans were GOOD plans. God does want us to plan, of course. But, we can make our plans for all kind of good reasons when God could be using our good plans for something totally different.

I've learned that God's plans are the best plans whether we see what they are or not. A lot of times we don't see what God's plans were until after the fact. And, I'm learning that His plans are always for our good no matter how things look in the moment. We are all walking that truth out right now ... learning to trust more, learning to believe more, learning to know Him more.

And, now I'm jobless so that I can care for my daughter. But, I know that just as God provided almost two years ago, He will provide again.

Here's a quick update on our girl ...

DAY 71+
La Petite Belle's counts are good. Sometimes they rise. Sometimes they stay the same.
She did battle HSV last week, but has kicked that nasty virus.
We continue to go to clinic two times a week.
There is still a small amount of her own cells showing up in her blood. That's what I would ask you all to pray against the most ... whatever cells she has remaining would be gone and the donor cells would multiply immensely. The good news is that she was 100% donor cells in her bone marrow. As our doctor in Lafayette told us, "The bone marrow is like looking into the future. Whatever happens in the marrow will eventually happen in the blood." If this is the case, we pray for that 100% to show up in the blood soon. 
We are about four weeks away to Day 100+ and we can't be more ready to go home than we are now.

Thanks again for praying and believing with us for our girl'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:  All funds go to cover medical bills and expenses.