I’ve been having a lot of trouble sleeping lately, so am up on the computer at odd hours. I received this poem late last night and must have read it 50 times since then. I am so thankful for the thousands of messages that I’ve received since this battle started, but especially over the past week. It is quite comforting to know that Layla is covered in prayer.

GOD SAID

“For a little while I’ll lend you a child of mine for you to cherish while she lives, and mourn for when she is gone. Look after her for me! It may be two or three years before I will call her home.

Will you care for her?

She’ll bring you love, joy and happiness and should her stay be brief, you’ll have a whole host of memories as solace from your grief.” I cannot promise she will stay, since all from the earth returns to dust, but there are lessons taught below that I want this child to learn.

Will you love her?

I’ve looked the whole world over in my search for teachers true, and from the masses that crowd life’s lane at last I HAVE CHOSEN YOU. Now will you give her all your love and not think your labor in vain and turn against me when I come to take her back home again.

I fancied that I heard you say to me: “Dear Lord your will be done, for all the joy your child shall bring the risk of grief we’ll run. We’ll shelter her with tenderness. We’ll love her while we may, and the happiness we’ve known forever grateful stay. But should the angels call her much sooner than planned, we’ll brave the bitter grief that comes and try to understand.”

“I’ll lend you for a little while a child of mine, God said, for you to cherish while she lives, and mourn for when she’s gone.”

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So, if you follow Layla on Twitter or Facebook, you know that we’ve been searching for a puppy the past few days. We had a Shih-tzu that sadly passed away the day of Layla’s tumor resection. Since then, we’ve wanted to get a new dog but the timing just wasn’t ideal. I had too many things going on to worry about something else to feed and clean up after. We were planning on getting a dog for my oldest daughter’s birthday the end of February. With the recent happenings, we figured we should get the dog NOW, NOW, NOW. When Layla’s not at the hospital, we’re at home together. How soothing and comforting for her to have a tiny little dog to cuddle up in her bed with her when she’s not feeling well. A soft little thing to touch and love and hold.

One of my very dear friends wanted to do something for us and made it her mission to find Layla a new puppy. I am SO blessed to have such wonderful, caring, compassionate friends who know my family so well.

Initially, she sent out an email request asking for names and numbers of breeders in our area OR anyone who knew of a Shih-tzu or Maltese puppy being sold with papers and immunization records. Of course I received a few emails from those who love to complain about something, asking “Why a specific breed? Why does it need papers and immunization records? Why not a rescue dog? Why, why, why?” So let me address those questions first…..Layla’s immune system is extremely compromised and we have to be VERY careful about what she comes into contact with. We don’t want a puppy licking her that has a disease. We were advised by her doctors that if we bring a new puppy into the home, we must know EVERYTHING about not only the puppy, but it’s parents too. This also explains why a rescue dog isn’t a fit for us at the moment.

For every one negative email (really, there were only 3), there were HUNDREDS of positive ones! Within 30 minutes of sending the email, people were coming out of the woodwork asking my sweet friend where they could donate money towards the new puppy. Seriously??!! We just wanted a few names of breeders! The puppy request email was revised to include donation options and sent out again. 2 days later we had the names of the breeders we were going to visit AND enough money to get the puppy and all her supplies. Praise God!!

Today, my friend and I loaded Layla and her little boy in the car and headed out to La Porte to do some puppy shopping. There were 4 Maltese puppies to choose from. The first 3 licked all over her face, nibbled at her clothes and were pretty busy! The last little puppy came up and licked Layla so sweetly on the arm then nuzzled her neck. Layla exclaimed “She yikes (likes) me!” God brought the PERFECT puppy to us and I couldn’t be happier with our choice!

To everyone who donated, I want to sincerely say THANK YOU from the bottom of my heart. I could go on and on about how much it means to our family to be able to provide Layla with a puppy, but I’ll let you see for yourself how excited she was to meet our new puppy, EVIE

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Since day one of Layla’s fight against cancer we have been searching for ways to give her an edge in this battle. We have tried to balance her diet as best as we can given her new food aversions (chemo makes everything taste weird). We have tried to reduce the number of gratuitous medicines she receives to save her liver and kidneys. We have also gone a long way to keep her spirits up because laughter is the best medicine. The problem we’ve had is that when it comes to any health choices not involving a doctor the world becomes a mushy soupy mess of conflicting ideas, snake oil salesmen, zealots, crazies, and downright dangerous concoctions. For all the talk of organic natural healing, the stuff we’ve come across more resembles religion than science. We have scoured the medical journals for research done on Neuroblastoma and other cancers like it, as well as alternative options for treatment.

What we’ve been unable to find is a common sense, science based, peer reviewed, clinically studied regimen of alternative (we’ll call it “supportive”) natural supplements that have a repeatable track record of improving the survival rate of cancer patients. While we pray constantly expecting miracles, we’re not sitting idly by as the walls burn around us. We want solutions for Layla but have been wholly unimpressed with the “supportive” treatment available. We are requesting information on “supportive” options that meet a few specific criteria. If you have information to share we would like to express our gratitude in advance, however please be respectful of the criteria we lay out here and help us by not overloading us with information that falls outside of what we are looking for.

What we are looking for:

• Dietary supplements or vitamins.
• Safe for pediatric use (i.e. labeled with pediatric dosing/serving amounts).
• Preferably something you have used and can personally vouch for.
• Preferably of natural (plant/animal material) origin.
• Preferably with documented clinical studies related to solid tumor cancers.
• Preferably published in a peer-reviewed medical journal.
• Preferably produced in the United States.

What we are NOT looking for:

• Replacing Layla’s current treatment plan.
• “Healers”. We believe in God, we pray, and we ask you to pray for Layla and we respectfully leave the faith healing to God.
• Drastic regimens that present any health hazard whatsoever.
• Anything promoted by only one Dr.
• “Procedures” of any sort.
• Illegal in the United States (no, medical Marijuana is not legal in Texas).
• Second hand stories.
• Anything involving a conspiracy theory “Big Pharma doesn’t want you to know about this!”
• Anything sounding even remotely kooky.

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Dying. Death. Last days. I never imagined that after all the shit Layla has been put through, all the sickness and pain she’s had to endure, that the cancer might win. I had hope and faith in God that he would heal her little body completely. That he already HAD. I had faith that we would get scan results and celebrate. I prayed fervently that she would be part of that 30% that survived this vicious monster.

Friday we got news that the cancer was winning. While we were bombarding her body with chemo and radiation, while we were poisoning her to the verge of death, while she was unable to move in her bed from pain, the cancer was growing and multiplying. She has a new tumor that is invading her one good kidney. That kidney is functioning at 59% right now, which means surgery (and any possible damage to that kidney) is not an option. While there are a few options in this general scenario, Layla is not eligible for any of them. Her kidneys must be functioning at 70% for any clinical studies or more radiation. If God works a miracle in her and restores her kidney function, we could hop on a plane tomorrow to Sloan Kettering Cancer Center in New York and continue treatment that is not offered at TCH. Unfortunately, that isn’t an option at the moment.

We are left with 2 options. Both offer the same results. The goal now isn’t to get rid of the cancer, it’s to slow down the growth. Her tumors are growing rapidly and if we do nothing, there’s a good chance she won’t be here for her sister’s 9th birthday on Feb 24th. We have chosen to do a daily oral chemo. Yep. Every day. For the rest of her little life. There are minimal side effects and there’s a good chance we’ll get to spend another 2 months with sweet Layla. After 2 months we will re-scan and see if there has been any growth. If there has not (and this is what we’re praying our hearts out for) then she stays on the chemo and we check again in another 2 months. Studies have shown that in 50% of patients, the tumor growth stops. Sounds great right? Take some chemo every day and just live with the tumors. They’re not causing her any pain yet, so theoretically, that wouldn’t be so bad. As long as that tumor doesn’t creep any farther into that good kidney, this would be the optimal outcome for Layla (aside from complete healing!!!). So what happens to the other 50%? Their tumors continue to grow. At the 2 months mark, 50% of patients have larger tumors. God forbid Layla falls in this category, we can try another type of IV chemo. The big problem with this one is that it will make her very ill. If the oral chemo didn’t work, the chances of the IV chemo working are slim to none.

So now we’re faced with a huge decision. Try the IV chemo and reduce her quality of life or not do anything and just control her pain as the cancer takes over her tiny body. So do we delay the inevitable, put her through more hell, and are unable to enjoy her in hopes that she falls into the tiny category of people whose tumors slow down? Or do we choose to do nothing, knowing we have precious few weeks with her but get to enjoy her? I feel like I’m playing God here. God, what path do we choose???

Basically, Dr. R told us to prepare like we have 2 months left with her. She’s one of the top Neuroblastoma Specialists in the country. She sees this every day. If she says 2 months, I believe her. However, I also believe in God. I believe that he can heal Layla and completely restore her body. I believe in miracles. In 2 months when Layla has scans again, I pray that we see the tumor growth not only stop, but the tumors shrinking. How glorious would that be??

I walked out of the hospital Friday trying to hold myself together and as I walked past the PICU, I saw a couple coming out with a clear plastic bag containing a child’s belongings….and no child. The woman was sobbing hysterically and the husband was doing his best to support her and be strong. I said a prayer for them and continued walking. I got about 5 steps then realized that would be me in the very near future.

How will I cram a lifetime of memories into 2 months? How do you prepare your heart for the loss of a child? How will I tell our other children? How will I walk by her empty room every single day? How will I keep the memory of her sweet voice and piercing blue eyes? How will I even get out of bed?

I know that when it’s God’s time, and he calls Layla home, she will forevermore be healed and pain free. I know she will see glorious things that us here on earth can’t even imagine. I have prayed daily… hourly, to God that he take her pain away and heal her completely. He will, I just fear it’s not going to be in the way I had hoped. I pictured her growing up and going to medical school, becoming a Neuroblastoma Specialist (there are only a handful of them in the US) and doing something wonderful with her life. Instead, I am trying to prepare my heart for the fact that at the tiny age of 2, she has almost accomplished what God sent her to do. And she has done a FABULOUS job!! She has drawn people closer to God, showed strength beyond comprehension, brought smiles to thousands with her constant happiness and made me count each day I get with her as a blessing. Those who know her personally are drawn in by her sense of humor and infectious laugh. Layla Grace is the perfect name for a perfect little girl.

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WHEW!! It literally took me 2 evenings to get this blog post out! I would write a sentence then stop to cry. I’d wake Layla up just to hold her. I *might* have just drank a bottle of wine as I typed, so if there are typos…please excuse them!!

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