Tag: hope

Tell Me Again, About the Rabbits

.Reading time 5 minutes.

This year has been an odd one for me because I have read much more than I’ve written. I began working down a list of the “100 greatest works of fiction.” I had read many of them, but I found two giant holes in my library: modern books and American literature. So I dove into Harry Potter, The Help, and Game of Thrones interspersed with Melville, Hemingway, and Steinbeck.

That last one, Steinbeck… he hit me in the teeth with Of Mice and Men. I respect his ability to pack such deep, meaningful characters and a heartbreaking story into 112 pages. That is genius. Most authors today seem to write for the trilogy or get so enamored with their own words that 112 pages is barely a back-story. It also hit me because I could identify with Lennie and the rabbits.

The impoverished and simple Lennie just dreams of holding a rabbit in his palm and stroking its soft fur. But he can’t. He can’t and never will. So he constantly begs George for stories about the rabbits.

bunnyTell me again, about the rabbits

The rabbits represent something of substance that a hopeless drifter has no chance of claiming. The rabbits are a thing just out of reach – a dream that could never come true. That thing we want, but cannot have.

We’ve all dreamed of things we couldn’t have. Sometimes it’s a person or a relationship. Often it is just that we want more: more money, more stuff, more recognition. More would make it better and fill the void.

Most of the things we spend our time dreaming about are material. With the right preparation, bankroll, or a stroke of luck, they could be attained. But like Lennie, the thing I want I cannot have. I want it so badly that I often feel my bones ache to fill the void.

Tell me again, about the rabbits

Labor Day Weekend four years ago brought news that Kylie’s cancer treatment had failed. We were scheduled for a five-day hospital stay; but they sent us home while they planned a new course. Because of the unanticipated time with her sisters, Kylie was thrilled. But that news marked the beginning of a downward spiral. We never got ahead of the cancer until we lost her months later.

I will never hold her again, or hear her say “daddy”, or see how she reacts to the attention of boys. I’ll never be able to see her on stage, share a cup of coffee, or walk her down the aisle. Those are things I want and cannot have. I can never have. I will never have.

Contentment is elusive when you see people all around holding their rabbits and your rabbit is but a memory.

But along with the ache that comes from wanting something you will never have comes a paradox. While I live in jealousy of rabbitful families, I don’t begrudge them their rabbits. I want everyone to have their own and joyfully hold them forever. I just want mine, too.

Tell me again, about the rabbits

And so, like Lennie, I dream. I am a drifter in this life who dreams an impossible dream about holding a thing I will never again hold. I smile, I work, I play, I have laughter and fun… and yet the allure of the rabbit’s soft fur always tugs at my heart. It’s a beautiful dream that necessarily awakens to a sobering reality. My palm is empty… there is no rabbit. There will never and can never be a rabbit.

Tell me again, about the rabbits

Lennie settles for stories about rabbits and so must I… in this life.

But I believe there is a day coming when my dream will come true… when Kylie will take my hand and show me a land of promise and reward to which no work of fiction can compare. That belief, though resolute, rarely makes the waiting here easier. I see now that this life will be difficult until that day.

But still, I will dream.

Tell me again, about the rabbits

bunny

 

Crossing a Threshold

.Reading time 5 minutes.

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