Several times throughout the day we sat back in total awe of the turnout. The months before the event were a tumultuous mix of planning, nerves and expectations. Seeing everything actually come together was truly amazing. The crowd started gathering before noon and never seemed to stop! Although the day was spent bouncing around from area to area making sure that everything was under control, I kept pausing to capture the memories- kids with sticky fingers and snow cone stained faces, fathers giving piggy back rides to their tired little ones, people sitting on the grass listening to the music, entire families enjoying a day out together. I wish you could have seen the sea of people that flowed through the restaurant tent. A picture is one thing, but actually weaving your way through the crowd with a plate of samples, trying not to trip over the feet next to yours while salivating over the food – that is a whole different experience. And the squeals of laughter coming from the kids area as they enjoyed the moon walks, clowns, crafts and sweets brought smiles to all of our faces. We could not have asked for a better result for our first event.

Huge thanks to all of the restaurants, vendors and volunteers who had a hand in making this happen. I could go on and on about how pleased we are and how blessed we feel to be surrounded with such an outpouring of support, but instead I’ll leave you with some pictures taken by the talented Christie Lacey. (To see the rest of the pictures you can visit the Layla Grace Children’s Cancer Research Foundation page on Facebook)

Stay tuned, we are cranking our gears this summer to get our new and improved web-site up and running, plan more fundraisers, create out-of-town opportunities and make even bigger strides towards ending childhood cancer. We know you are all eager to help and we would like to make sure that everyone is as involved as they want to be.

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The foundation we created in her name is official. Also, we’ve got a great logo now too:

We have our first big fundraising event coming up in Houston on June 13th from 12 to 4pm at the Northwest Forest Conference Center 12715 Telge Rd. Cypress, TX 77429. It’s going to be lots of fun. We wil have 40 local restaurants sampling their food and lots of stuff for kids. We are still accepting volunteers and corporate sponsors for this event. If you are in the Houston area and would like to volunteer or be a sponsor for this event please contact jennifer@laylagrace.org.

I was on local news recently to talk a little bit about Layla and how her sisters are dealing with their loss. Texas Children’s Hospital is really doing a lot of great things.

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Jenna and Claire seem to be doing better. Jenna cries less and is more willing to talk about how she feels, and Claire is beginning to understand that Layla is never coming back home. It is tough to answer the same questions everyday – “Where is Layla? When are we getting her from the hospital? Why is she in heaven?” These are daily questions from Claire.

We’re still just taking it day by day. We went to church today for the first time since Layla passed. That was pretty difficult. We’ve wanted to go every Sunday, but when Sunday morning came around, we just couldn’t go through the motions to actually get to church. I realized a few days ago that it was time for us to start going again and soak up as much of God’s word as we could. And let me tell you, I’m so glad we went! I left feeling refreshed and better than I have in days!

I understand that it’s really hard for some people to approach us. More often than not, I can tell that someone wants to talk to me but they don’t know what to do or say, so they just cry, then apologize for crying, then apologize for not knowing what to say. That’s okay! If I see you out in the community, I welcome smiles, hugs, tears, words of sympathy – whatever you feel like sharing. It warms my heart to know that so many people are still thinking about our sweet Layla and still praying for us.

Now for the exciting news….

I am SO THRILLED to finally share with everyone what I’ve been working on for the past month. When Layla passed, it became my mission to live out her legacy and do everything in my power to make sure other children don’t suffer the way she did. I’m proud to announce the birth of the Layla Grace Children’s Cancer Research Foundation! I have met with attorneys and accountants and signed papers, they have filed those papers and I will have my tax id# this week. I am SO excited to see what this new chapter of our life will bring! The Layla Grace Foundation’s primary goal is to raise funding for Neuroblastoma research, and we are also tossing around some ideas about how to directly help children going through treatment. Parking passes, meals, gifts, childcare for siblings, and of course – flower beanies!

Our first large event in Houston is being planned right now, and in about a week I’ll be in need of some volunteers who would like to help. Guys, this is going to be BIG and I’m going to need several volunteers. Also, planning for our second large event will start at the end of this month and I’ll need volunteers for that as well. At one point, I couldn’t keep up with all the people who wanted to help. I pray the Layla Grace Foundation will be blessed with an abundance of volunteers!!

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We have 2 other small children, so life still goes on. I can’t lay in bed and cry all day. I have plenty of moments when I cry driving down the road, doing dishes, watching tv or playing with my other girls. There are plenty of times they cry with me. And that’s okay. I’d rather we all cry together instead of me locked in the bedroom and them thinking that there’s something wrong with showing emotion.

I’m still finding her clothes mixed in with the laundry. Her favorite toys scattered around the house. Her car seat sitting in the garage that is a daily reminder that she won’t ever sit in it again. The hardest thing for me has been walking by her room every day. I have to pass her room to get to Jenna and Claire’s. We keep the door shut but occasionally I go in there and sit on the floor and just cry. Evie comes in with me and lays next to her bed. Eventually her room will be made into a “quiet room”. I’ll move all the girls books, puzzles and Layla’s favorite toys in there. I’ll keep the theme and colors the same. It will be a comforting place to go to read, reflect, pray and talk about Layla.

Layla’s Celebration Of Life on Saturday couldn’t have been more perfect. It was a BEAUTIFUL clear day. Breezy and warm, but not hot. The flowers were displayed on the stage to resemble a garden. They were perfect and vibrant – exactly what Layla would have chosen. Pictures and a few of Layla’s favorite things were mixed in with the arrangements. The music was equally as amazing. I hope to have the audio in the next few days and will post it. I could tell you how wonderful it was, but you’d have to hear it to really understand. I will hopefully have some pictures soon as well. At the end of the celebration, we did a balloon release. 1000 pink and purple balloons were sent up to Layla as we listened to Israel Kamakawiwo’ole’s version of “Somewhere Over The Rainbow”. I’m sure she was squealing with excitement

We had tons of flower arrangements. I took home about 10 and the rest we piled into 4 trucks and took down to Texas Children’s Hospital. We handed them out on the cancer floor and left some for Layla’s nurses in the Cancer Center. It was so surreal driving there, voluntarily, without Layla. I’ll do it again though. I’d like to go with something different each time – art supplies, stuffed animals, books, balloons….anything that will put a smile on the faces of the kids. Even though Layla’s cancer journey is over, there are new children starting this journey everyday.

I’m amazed at the prayers and support that is still being offered to us. I assure you, we are feeling it and are so appreciative.

A foundation in Layla’s name is in the early planning stages. Once we’re up and running, I have some BIG ideas. It’s my responsibility to live out Layla’s legacy. It will be tough because I have big shoes to fill, but I have faith that Neuroblastoma will become as widely known as other childhood cancers. I also have faith that funding for research will follow. If I can prevent even one family from feeling the pain that we’ve felt, then I know I’ve succeeded and Layla would be proud.

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Layla has touched so many in her short time on earth. Please join us at Layla’s Celebration of Life, Saturday March 13th at 10:30am at Bear Creek Baptist Church. 5901 North Fry Road, Katy, TX 77449-1807. We will honor her through pictures, music and a balloon release. Childcare will be provided.

A huge thank you to everyone who is inquiring about donating flowers for the service. Layla LOVED flowers!! Here is our florist information….

Autumn Leaves Florist
15210-D Spring Cypress
Cypress, Texas  77429
281-373-3332

Thank you for your continued love and prayers.

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The past year has been one obstacle after another. We’ve had doctors and others that have walked this road, try to help us by telling us what to expect each step of the way. While it’s been helpful, until you’re put right in the thick of it you have no idea how to react. The past 3 weeks have been pure hell. Watching Layla go through this suffering has been pure hell. Being away from our other 2 kids has been pure hell. The only think keeping me sane is faith. When I’m holding her and just want to cry uncontrollably, the only thing that holds me together is faith. That’s all I have left to cling to.

She’s still very aware of what we say, and who is in the room with her, so she can’t hear me crying all day. I have to be strong for her. I have to be the one to tell her that it’s going to be ok. That I’m so incredibly proud of her strength and grace. That I will take her short amazing little life and tell the story over and over again. That she WILL continue to do God’s work and she WILL make a difference in the lives of children with cancer.

My relationship with God has grown so much the past few months. That is all Layla’s doing. I’m so grateful that I was blessed with this angel on earth. She has taught me patience, faith, strength, grace and love. She has continued to amaze me over and over again.

Today, I’m going to ask for prayers for our other 2 daughters. Jenna is 9 and Claire is 3. They have been at my mother’s house for 2 weeks now. We didn’t want them to see Layla like this. We want them to remember her as a happy, bubbly 2 year old. Claire is too little to really understand what’s going on. She thinks it’s pretty neat that she’s getting to stay with grandma for so long and sleep in a pink princess bed. Over time, it will become more difficult for her. She’s used to Layla being gone for weeks at a time, but it will be a shock when she finally realizes that Layla isn’t coming back. Jenna is really having a very tough time. She’s been working with a child life specialist from Texas Children’s Hospital, learning ways to express her anger and sadness. She’s also writing in a journal. She’s being given tons of attention from family members. She’s still deeply hurt. Please pray for comfort and peace for her. I can’t wrap my head around what’s going on, I can’t even begin to imagine how this must feel for a 9 year old.

I want to say thank you to everyone who has taken the time to send emails, comments, tweets, messages, cards and sweet gifts. I can’t even begin to tell you how much it means to us. It’s very comforting to know how many people love Layla and are praying for her.

2 Corninthians 4:7-12, 16-18
But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus’ sake, so that his life may be revealed in our mortal body. So then, death is at work in us, but life is at work in you.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

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Still, we kept praying expecting a miracle. Never give up hope, that’s our motto. God doesn’t bring the bad, he brings the good. But we knew in the back of our minds that it might be part of God’s plan for her to return home to Him. It’s not too much of a stretch to believe that God’s work with Layla here on earth is nearly complete. She’s brought people closer to their families, closer to God, Shanna and I closer to each other. Lots of people have been touched by her. Lots and lots of people. Shanna and I still look at the number of Twitter followers she has and can’t grasp it. It’s unreal.

When we took Layla home to pass, the hospice doctors and Dr. R told us what to expect. It’s not easy to sit at home and watch your child die. Our only wish was that if Layla was going to pass, that it be in peace. It hasn’t exactly been like that. Layla’s pain has been difficult to manage. She is allergic to morphine and all of its cousins (i.e. everything that works) so we have to give her small doses of morphine anti-dote alongside her morphine otherwise she tries to tear her own skin off like a bad trip. Her intestines are stopped up and nothing seems to be working. They are probably occluded by tumors… that’s what happened the first time around when she was diagnosed. So because her bowels don’t move, all of the bile that accumulates in your stomach over the course of a day has to go somewhere. In her case it’s vomited out several times a day. Even worse is when your body is shutting down it doesn’t get hungry. You don’t eat. You don’t want to eat. Dr. R said that giving her iv fluids and nutrients will actually do more harm than good. Her body doesn’t need all the extra stuff and doesn’t know what to do with it. It can shorten her life opposed to prolonging it. It’s horrific, Layla is unrecognizable. She can’t even speak, she squeaks in this raspy pitiful voice that makes you want to break down and cry. It’s the most difficult thing we’ve had to cope with through this whole fight. Layla is literally dying before our eyes but not like how it works in the movies. I don’t want her to go but if God is going to take her we just want her to go peacefully, not like this. Lord, not like this.

I guess you are probably wondering how we manage to pick ourselves off the floor long enough to sit down and blog. It doesn’t exactly work like that. We cry…. a lot. We’re not made of steel, we’re not half as strong as many have made us out to be. We simply hope and believe that God has the power to change anything, even this. We cry and pray, and yell and pray, and shake our fist at God, it’s ok though… he can take it. We initially started using twitter just to keep us sane. Most of our friends have (or have had) small children and when something happens to a small child everyone feels it. When we first found out something was wrong with Layla our phones were blowing up with text messages and questions from friends and quite frankly we just didn’t have the nerves left to respond to everyone. As we began to discover exactly how deep the rabbit hole went, we knew Layla was going to need prayer…. lots and lots of prayer. So twitter, and eventually this blog, became a way to stay constantly connected with the prayer warriors out there beating down the gates of heaven for precious little Layla. Over time it has become part therapy too. Ever been so troubled by something that you wanted to climb on your rooftop and scream at the top of your lungs? Welcome to laylagrace.org.

Shanna and I have had Layla in our arms or lying by our side now for the past 10 months straight, cherishing every breath. We are so grateful for the support of the many people who have shared this journey with is. God bless all of you.

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Suddenly those pictures became a HUGE priority. Her “good” days were slipping by very quickly. One of our neighbors, Christie Lacy, is a fabulous photographer. We contacted her and set up a shoot for early the next week. Within 2 days Layla had deteriorated more and the doctor told us that we would lose her within the next 2 weeks. We called Christie on a Thursday afternoon and asked if we could move the shoot up. Her response was “Let’s do it now. I can be ready in about 2 hours”.

Great! But what do we wear?!?!

I rushed out to find something for the girls to wear. Did I mention it was 32 degrees that day? And had been raining all week so the ground was muddy? Also, it’s really difficult to find long sleeve dresses in February. There were already bathing suits on the racks!

I found the perfect dresses, rushed home to shower and throw some makeup on, and we headed out the door…down the street behind our houses. To the muddy bayou. But THIS is why Christie is SO amazing. She made the muddy bayou look gorgeous. Even though the kids lips were blue and they were shaking, you’d never know by looking at the pictures! After about 10 minutes (that’s all we could stand out there) we headed back to my house to take some indoor shots.

When your child is dying from cancer, the house is the LAST thing on the list. Dishes don’t get picked up, clothes don’t get folded, floors don’t get swept, toys the dog has drug around don’t get picked up…..to say the house was a mess would be an understatement. BUT, in the pictures, the house looks spotless!

Christie took beautiful pictures that day. Pictures that I will cherish the rest of my life. Not pictures I will walk by and glance at; pictures that will remind me of the last “good” day we had with Layla. The last day she was able to lift her head up without crying. The last day she was able to sit up and read a book. The last day she smiled. I am forever grateful to Christie Lacy. She has blessed our family tremendously by capturing a precious moment in time.

As if that wasn’t enough, she is still wanting to do more. If you live in the Houston area, check out her “Portrait Party For Layla” Benefit. Her work speaks for itself and this is your chance to get a session WITH prints for only $50!! She captures the beauty and personality in every child. See for yourself…

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Our time frame for miracles is running out. Layla’s PICC line (IV that is inserted in her arm and runs to her Vena Cava to administer meds) stopped working Sunday night so she spent Monday at Texas Childrens having it repaired. Thankfully, they were able to get it working again without surgery. Praise God! While there, they did an ultrasound to see what’s going on with the tumors in her little body. I’ve been praying all morning for some good news like “They’ve stopped growing”. Instead, we got news that there are new tumors. One inside her liver and another on the right side of her abdomen, where her kidney should be. The existing tumors are still growing.

This cancer is invading her body. NOW is the time for a miracle! She is very tired and lethargic. She is down to 18lbs. Her eyes are bruised and she can hardly pick up her head. We need a miracle NOW. Her breathing is becoming soft and labored and her heart rate is declining. She is sleeping more and more.

She still likes her own bed, so Ryan and I are working in 6 hour shifts sitting in her room watching her sleep. Her dog is planted at the foot of her bed. Amazing how animals know these things. Her 2 sisters told her goodbye tonight and went to my mother’s house for the night. I didn’t think Layla was going to make it through the night. Once again, she proved to me that she is stronger than I could ever dream of being. She is still with us and sleeping peacefully.

I take comfort in a few things. First, I know there are angels watching over her. I know they are sitting right beside her; that she is never alone. Her angels will usher her into heaven. Second, I know her death will not be in vain. She has done what God sent her here to do. She has gone above and beyond. I receive hundreds and hundreds of emails every day from people telling me their faith is stronger because of her. She has managed to do more Godly works in her short 2 years on earth than most people do in 80. I take comfort in the fact that when she returns home, she will be greeted by the Lord and hear “Well done good and faithful servant”. She will instantly be renewed and have a perfect heavenly body. There will be no more tears, no more pain and no more sorrow. She will see glorious things we can’t even begin to dream of. Revelation 21:18-21 says  The wall was made of jasper, and the city of pure gold, as pure as glass. 19 The foundations of the city walls were decorated with every kind of precious stone. The first foundation was jasper, the second sapphire, the third chalcedony, the fourth emerald, 20 the fifth sardonyx, the sixth carnelian, the seventh chrysolite, the eighth beryl, the ninth topaz, the tenth chrysoprase, the eleventh jacinth, and the twelfth amethyst.d 21 The twelve gates were twelve pearls, each gate made of a single pearl. The great street of the city was of pure gold, like transparent glass.

I’ve spent all this time praying for her to be healed. AND SHE WILL BE. It just might not be in the way I want. Within a few short days, one way or another, Layla will be healed and absolutely perfect.

A received this poem that was written for Layla. It is so beautifully written and conveys exactly what is on my heart.

Layla Grace, Layla Grace, with your sweet sweet smile and your angel face
You have moved many while running your race, darling Layla Grace
Though you are young and your years be few
God’s doing wonderous things through you
In present times we don’t understand
It can be hard to see His hand
But we know it’s part of a greater plan
We believe this to be true

For those on the outside looking in
We see a giant girlish grin
It’s hard to fathom endurance so great
And the fiesty fight of this featherweight
In the midst of suffering and enormous pain
Your parent’s steadfast faith remains
What a testament to all who view
The trials you are going through

We pray for a miracle, Lord once more
Pray more fervrently than we’ve ever prayed before
Have mercy on your witness small
Bring healing, peace, and rest above all
Lord, you alone know what’s to come
Bring peace and healing to everyone

To all of whom this girl did hear
Whether distanced far or nestled near
You’ve blessed us with a heavenly light
Her courage shining bold and bright
Bring her family peace tonight
Steady their ship and steer

And if you call this wee one home
No longer on this earth to roam
If her moments left are fleeting, brief
Comfort us admist our grief
Remind us of your perfect will
Hold us firmly, planted still
Let our hearts remain aware
That she is in your loving care

You will hold her tiny hand
And guide her through Your glory land
No more need for her to cry
As you sing her heaven’s lullabies
And rock her gently in your arms
Untouchable to hurt or harm

What a special treasure made in You
This precious child with eyes bright blue
A shining reflection of your glorious face
Lord, Thank you tonight for Layla Grace.
For each measured moment before family may part
Make sweet cherished memories to keep in their hearts
She’s made this world such a brighter place.
Lord, Thank you tonight for sweet Layla Grace.

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So I’ve spent the last few days in a quiet house, able to do whatever my heart desires. But all I want to do is wake her up and hold her. She doesn’t really want to be held much anymore. She prefers to be rocked in her dark bedroom for a little while, then laid down in her bed. She gets easily overstimulated by the noise of the other children downstairs. She wants dark, silence, peace and sleep. So we give those things to her. As much as it breaks my heart to not be able to hold her all day, I know her little body needs peace and sleep.

We have tried to put her in our bed with us but she screams. I’ve tried to rock her in my room, but she just cries. She wants familiarity. Her own bed. Hospice told us that when the time comes that we shouldn’t leave her side (i.e, she only has a few hours or days), she won’t know where she is and won’t put up a fight about sleeping with us. She’ll only open her eyes for a few minutes at a time.

We had plans to visit family in Oklahoma this week, to go to the zoo, the beach, the rodeo…outside to play. That will not happen. We had family pictures taken last week and I’m so happy we did. We can hardly get Layla to say a word, let alone give us a smile or lift her head up long enough for pictures. Family has come over to visit her the past few days without success. She doesn’t want to leave her room and they have come and gone without being able to hold her, talk to her, and some instances even see her. Our Pastor came by yesterday and we started making some funeral arrangements. At the end of his visit, he asked if we would like to have her baptized. We said YES and he baptized her right there in our kitchen. She was very peaceful and didn’t cry or make any noise during it. I truly feel like God was holding her in his hands and comforting her.

She is hooked up to a morphine pump and had a dose of Dexamethasone on Saturday. Sunday morning she ate 4 bowls of cereal and was in a fairly good mood. She sat up in my lap long enough to open her Valentine’s present and watch some tv. Since then, it has been a steady decline.

Please pray for her comfort; both physically and spiritually. Please pray that she knows how much God loves her and she isn’t scared about what she is feeling and what is happening. Please pray for minimal pain and suffering. Please pray for Claire and Jenna. They are so confused and uncertain about what is happening. They cannot fully grasp the finality of her impending death. I can hardly grasp the finality of what is happening.

Here are a few pictures of her FIRST bubble bath since May of last year (these were taken February the 12th), and Valentine’s morning.

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