Story
I have set a personal goal of cycling 200 miles in August 2023.
I’m doing this in memory of my daughter Elayna, who should be riding with me.
Unravel is a non-profit organization that helps fund cutting-edge research so that we can find cures for pediatric cancers, and this cause couldn’t be closer to my heart.
On April 13th, 2014 my wife and I heard the unimaginable news that my own 5-year-old daughter, Elayna, had kidney cancer (Wilms). Those words felt like the biggest punch to the gut that a parent could hear. How could our perfect child have a tumor growing in her body? Among the onslaught of new information we received in the following days, my wife and I were told that Wilms was the ‘good cancer’ to get because the statistical survival rate was very high- over 90%. I was looked in the eye by a doctor and told that I had no reason to doubt that I would still walk my daughter down the aisle one day. That assurance struck a chord with me. Elayna was going to be okay. There was a plan and I felt we would all come out the other side, having beat the cancer.
Elayna went through the established Wilms protocol- multiple surgeries, chemotherapy and radiation therapy, until she was shown to be in remission in late 2014. We were devastated again in the fall of 2015 to discover that the cancer had returned. We were back in the fight. Treatment for relapse Wilms was far more toxic and not as statistically successful. Suddenly, we weren’t fighting such a ‘good’ cancer anymore.
As Elayna fought this battle, standard treatment protocols were exhausted too quickly. Her amazing doctors helped us with any option they believed might stop or even slow the disease, but it became apparent far too soon that there was no script for our path anymore. Her fight became a balancing act between trying new chemotherapies to fight the tumors, while also considering how they were destroying the rest of her organs, mental health, and livelihood. All the while, we knew these toxic drugs were completely unproven. The research just hadn’t been done yet. As smart as our doctors were, current science had failed them. It had failed our family. It had failed Elayna. We needed the science of the future, but it didn’t come in time.
In August of 2018, after fighting cancer for nearly half of her life, Elayna passed away at age 9. We lost our daughter, one of the brightest souls in our family. I lost my best buddy, and life will never be the same again.
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It’s my hope that this biking challenge will help keep her memory alive for those who knew her, and spread her story to those who might not know it, all while helping in the search for real cures to help other kids still fighting cancer- and those who will be diagnosed in the future.
Before cancer, little Elayna loved riding her bike. She got her first two wheeler with training wheels for Easter when she was 4. It was a pink Disney Princess bike with white tires and a basket, which many of her stuffed animals rode in. We often took her bike to neighborhood parks and made lots of fond memories of her riding as fast as she could.
After her diagnosis bike rides became more infrequent and much shorter because of her reduced energy.
In the months of remission we enjoyed, my wife Lucy and I purchased bikes and the three of us began riding bikes as a family. I remember one day in particular we rode on our neighborhood trails all the way to our favorite frozen yogurt shop. Elayna was pedaling so fast on that princess bike, I thought the training wheels were going to fly off.
After the cancer returned, that princess bike of hers didn’t get used as much again. We would still take it to the park sometimes, where she would ride for a little while before needing to retire to the swing set, which was easier for her. It was hard to see her not having as much energy as other kids around us.
We bought Elayna a new, larger bike when she was 9, in the spring before she passed. She rode it a few times, but by that summer her body was so weak that we were pulling her in a wagon instead of even having her walk in our neighborhood, let alone having enough energy to pedal that bike.
Both of her bikes still sit in our garage. Both of them still have their training wheels on. Elayna’s body was never strong enough for me to teach her to ride without them, and her weakened immune system meant that we couldn’t take risks. During treatment, a scrape on the knee alone could have put us in the hospital for days because of possible infection. I have many great memories with my daughter but watching her ride away, solo, balancing on two wheels isn’t one of them. It may seem like just one small thing, but it’s actually one of so many moments that cancer has robbed from me.
Now, when I ride those same neighborhood trails past the frozen yogurt shop, I like to imagine Elayna riding beside me. Sometimes, I glance down at the memorial tattoo of her name on my arm just to remind myself that she’s really gone; that losing her isn’t some bad dream I’m about to wake up from.
While our journey has been unique to us, there are thousands of other families who have also lost their child to cancer. In the United States, of all the federal funding put toward cancer research, only 4% is dedicated to pediatric cancers. That number is unacceptable. There are far too many families with a child’s bike collecting dust in their garage because current science has failed their family, like it failed ours.
I hope that you will join me during this challenge by getting on your bikes and riding in Elayna’s memory, or in honor of someone you love. You can commit to whatever goal challenges you or your family.