Layla Grace

Precious Layla's fight against Neuroblastoma.

Layla’s Celebration of Life

March10

I’d like to say thank you for the overwhelming support we’ve received the past few days. We felt loved before, but WOW, I’m completely speechless. In the midst of feeling like my heart is being ripped out, I’m also so thankful for the love for Layla that is being shown to us.

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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Still Praying

March7

There isn’t much change with Layla. She is getting weaker by the day. She’s refusing ice chips, juice chips, small bites of jello…basically she’s not opening her mouth for anything. She can no longer sit up on her own and can hardly lift her head when laying on my shoulder. This is much slower and much more painful than we could have ever imagined.

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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Not Like This

February28

Dad again here; a few weeks ago we learned that bad news had gotten worse. The doctors initially thought that we maybe had a couple of months left with Layla, but instead it was going to be more like two weeks.

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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Family of Five

February24

We found out on January 22nd that Layla’s cancer had come back. The doctors told us to expect to have 2-6 more months with her. I started planning and making a list of all the things we were going to cram into the next few months. One of those things was a family photo shoot. I had tons of pictures of the kids, but had never had any taken of all 5 of us. So I added that to my ever growing list and set out to find the perfect outfits. I wanted to have the pictures taken in the spring so I was casually looking for the perfect dresses for the girls. Towards the beginning of February, Layla became very fussy. After a few days of this, I took her to the doctor. During the exam, the doctor felt a large mass that wasn’t on the scans 2 weeks prior. She had another scan done that day that revealed 2 large new tumors. We were told to prepare ourselves for only about a month with her.

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…

Jenna and Claire

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Donations to The Layla Grace Foundation are for Neuroblastoma research and other foundation activities to support children and families with Neuroblastoma.

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