My New Backpack

When I got my first job, I went out and bought a briefcase. It was nice – brown leather with the combination clasps. The problem was that I had nothing to put into it. Let’s be honest, my entry-level position wasn’t very important. I was basically a cut-up and had no intention of transporting critical documents home for late evening work. So I loaded it with old files and a few magazines to make it look like I had important stuff going on. Every morning I would plop it on my desk, turn the combination, and pretend to get things out of it like everyone else. I forgot the combination at some point and just quit opening it. Nobody noticed…

Briefcases are another one of those things like rotary phones that are quickly becoming relics of a bygone era. Backpacks have become the modern-day briefcase. With the weight of laptops it makes much more sense to put it on your back rather than lug it around. I’m very picky about my backpacks. How do you rate them? Strong straps, durable construction, roomy compartments, easy access. All of those things are important.

But I have a new backpack.

I’ve been a big lummox all my life. My first Army ID listed me as 6’ 3”, 197 lbs. Over the years, I’ve lost on one side and gained on the other. When these petite little girls started coming in my life, I loved putting them on my shoulders like a backpack. Their favorite way to get up there was to have me swing them back and forth a few times, and then arc them up and over my head until they were seated on top. I did that once at a Braves game and the whole section gasped as if I were throwing her out onto the field. Calm down, people… this is how we do things in giant-world.

DSCN0328Sometimes I would carry them two at a time on my back. It was a trick to get them up there but they could sit comfortably front to back.

I wonder what the perspective is like from someone’s shoulders. Like many childhood things, there comes a time when you are too big to get on top of another so you must look for yourself and your own height is all you get. When my girls got too big, I started carrying the family supplies on my back like a pack mule.

But my new backpack.

My new backpack is neither functional nor roomy. In fact, it has one small zippered pouch barely big enough for my phone. Still, I love it. I love it because it reminds me of when my life was whole and my family intact. It is as whimsical as the unchallenged man I used to be… before my Kylie died.OLYMPUS DIGITAL CAMERA

I carried Kylie on my shoulders more than any of them because she couldn’t keep up with her sisters on her little legs. When we would go to the zoo, park, or anywhere that required a lot of walking, she would inevitably hold her hands in the air to be picked up and I could never resist that smile. So I carried her. I carried her around the house when her leg began to hurt and I carried her when her body was depleted from chemo. The night she died I carried her to the hearse so there would be no stretcher in my house. And now my shoulders are empty because I can’t carry her anymore.

But maybe there’s a way…

This is my new backpack.

It’s a penguin because Kylie loved penguins. I have carried it around the zoo, the beach, and now Disney World. I probably look like an idiot… in fact I’m sure I do. But I’ve never cared much about that. You see, for some peculiar reason, when I carry it I feel like I’ve got my little girl on my shoulders and she can see things she might have otherwise missed. I know it’s stupid, but lots of things in life are stupid and most things about death are, so I’m just going to carry my penguin around.

If you’re on vacation somewhere and see a big, dopey guy with a little penguin backpack, stop and say hi. I’m not as crazy as I seem, although that is debatable.

The way I see it from up here, I’m just sharing life with my baby the only way I know how.

Photo Oct 11, 5 43 29 PM

Crossing a Threshold

Smiley for Kylie is a non-profit dedicated to finding a cure for childhood cancer. The mission was not hard to decide upon because it was exactly what Kylie told us to do before she died: cure childhood cancer. I am excited to say that we just crossed a threshold. Since Kylie was diagnosed in April of 2014, her impact has now driven over $100,000 into childhood cancer research.

Our little non-profit ended 2017 with a flurry of giving that took us to $111,000!

I am blown away by the generosity and hard work of family, friends, and people who never even met Kylie. Kylie’s family would also like to thank our Board of Directors who support us in everything we do. We love giving away money to fund research and I would like to share a little backstory that will help explain what guided our decisions.

When Kylie was diagnosed with Ewing’s sarcoma, my employer urged me to have the DNA of her tissue mapped. He was funding genetic research at MD Anderson and facilitated the testing of Kylie’s tumor. The hope was that the results would show which genes were over-expressed and causing the mutation of cells. At the time, this type of research was making its way into adult treatments for cancer. We soon found out that with children, we weren’t there yet.

The mix of chemotherapy and radiation she received was decades old. In fact, if I had gotten the same cancer when I was her age, I would have received the same treatment. With all of our advances in science and medicine, most treatments for childhood cancers have remained the same for forty years. While our doctors received complete DNA results from her tumor tissue, they had no use for the data. Her treatment didn’t change one iota because just three years ago, genetic testing had yet to impact care in children. But that is changing.

CURE Childhood Cancer has committed $4.5 million so that Children’s Healthcare of Atlanta can establish The Aflac Cancer Center’s new Precision Medicine Program. Joining a handful of existing programs, this innovative entity will take the fight against childhood cancer to the genetic level by identifying the root cause of the child’s cancer and targeting specific therapies directly to the wayward cells. No longer will we paint with a broad brush. Soon we will be able to isolate the offending cells and destroy only them. With success, this could become frontline treatment in the future; a child is diagnosed, their genes are sequenced, and a treatment is tailored specifically to their cancer.

Based on our cancer experience, this is a great step for children fighting cancer and Smiley for Kylie is proud to be a part of it by awarding a majority of our funding to CURE for this purpose. I wish we had more to give.

Another portion went to 1 Million 4 Anna – a non-profit that focuses solely on Ewing’s sarcoma research. The organization was founded by the Basso Family in honor of their lovely daughter, Anna who, like Kylie, succumbed to the disease.

Could 2018 be the year of great breakthrough? We hope.

And how would I feel if in 2018 our little organization had a small part in finding a cure for childhood cancer? I would be ecstatic. It would be the realization of my newfound and unfortunate life purpose. But I know there would be that small side of me that would ache that it was discovered too late for my little girl. I admit that I’m jealous now when I see good results posted and when I see the bell rung signifying the end of treatment. It hurts just a little because in Kylie’s ten months of treatment, we never got good news.

It doesn’t take long for me to snap out of it. Of course I want every child to beat this disease. I’m jealous, not inhuman. That is what Kylie would want, too. And I figure if I can be just a little more like her, maybe we can make a dent in this thing