Our Story

From Gavin:

Our youngest co-founder’s chemo ended poorly, but there is more to his story

My name is Gavin Shamis. I was diagnosed with leukemia when I was 8 years old and started three and a half years of daily chemo. I did my best to stay active while on treatment. Two and a half years in, my liver was failing due to the chemo and my treatment was ended early. Eleven months later, I was named to the USA Luge Junior National Development Team. I am now training for the 2022 Olympics.

The years of treatment were long and brutal. I looked for role models who beat cancer as kids and went on to do great things, but we could not find any. They told me what I could not do, but I wanted to know what I could do and then did it. There was no need to focus on the negative. Cancer leaves kids damaged, but for me, these are challenges to overcome. For most of us, there is no reason to give up , we just have to try harder and smarter.

If it were not for luck of timing and opportunity, I could easily be dragging at the back of the pack, giving up after each of the many setbacks. Now, two years after my last chemo, my legs still do not function properly and I am lucky to be doing rehab. Most kids don’t even know they can be helped.

A few months after making the luge team, I met Bryan Fletcher, the US Nordic Combined National Champion, who also had leukemia when he was a kid. We decided we wanted every kid who survived cancer to have the opportunity to thrive. We were then joined by two more amazing childhood cancer survivors, Lacey Henderson and Melinda Marchiano. There are now four of us who started out as typical kids with cancer, but should there be 4,000.

With our work and your support, this is going change. That is why we created ccThrive.

I am Gavin Shamis and I am redefining what it means to survive childhood cancer.

From Bryan:

In the run up to the 2014 Sochi Olympics, I began talking to the media about my path to becoming America’s top Nordic combined athlete. Of course I spoke a lot about the skiing, but I also spoke about my battle with cancer.  When I was three, I was diagnosed with leukemia. At age six, while still on chemo and recovering from a stroke, I got tired of just driving past the ski jumps in my home town to Steamboat Springs, Colorado and asked my parents to let me try ski jumping. I had so much fun on the first day that I enrolled in the program mid-winter. Suddenly, I was so enthralled with Nordic Combined I was splitting my time between Denver and Steamboat for chemo treatments. Fast forward a bit, and after 8 years on the US Ski Team and injury that kept me out of the 2010 Olympics, I finally had the opportunity to represent team U.S.A. in the Olympics. I was ecstatic to be on the 2014 Olympic team heading to Sochi, Russia.

Once I started talking more about my cancer experience, I was contacted by parents and organizations from the childhood cancer world. People were surprised, but more relieved, to know a childhood cancer survivor could become an Olympian. Many wondered if their kids could succeed in sport, and without examples, had been doubtful it was possible. In August 2014, I heard from a father whose son had a similar story to mine. Like me, Gavin was diagnosed with acute lymphoblastic leukemia. Like me, he endured the toughest chemo for any cancer, for adults or children. Like me, he could not be held back.

When Gavin was first diagnosed, his parents were told that although there was an 80% survival rate, the question was how badly he would be damaged by the treatment. Heart damage, bone death requiring hip and knee replacements, learning disabilities, infertility were just a few of the possible late effects of treatment. The priority simply was to keep him alive, and if he was alive, that was good enough. But, Gavin would not accept that.  Before he was diagnosed with leukemia, Gavin was a competitive swimmer and like many other kids, determined to make it to the Olympics. Just weeks into treatment, weak and swollen, Gavin was back in the pool training 90 minutes a day. He continued training and competing while on treatment, when his health would allow it.

With Gavin successfully back in school and now on trajectory for the 2022 Olympics as a luge athlete, his father was fully aware how easy it would have been for Gavin to be a survivor, but still lost. What if Gavin’s tryout had been rained out? What if his parent’s had been cautious and not allowed him to swim when his immune system was barely there? What if Gavin accepted his limitations as a cancer kid?  When I was a kid, there were no role models for cancer survivors. Perhaps the biggest similarity between Gavin and I is that both of us felt there were no childhood cancer survivors we could idolize and look up to during our treatments.  Of course, there were adult survivors who went from fame, to cancer, and back to fame. Their stories become the infamous standard of what to hope for after cancer. But childhood stories were less common. Therein lies the connection between two childhood cancer survivors who went from chemotherapy to Team USA athletes in obscure winter sports.

In October 2014, I met Gavin and his dad, Andrew, while I was competing for the 2014 US National Nordic Combined Championship in Lake Placid, NY.  After meeting and hearing more about each other’s stories, we decided to focus on what we felt was an enormous need in the childhood cancer community today. We decided it’s time that kids going through treatment know, and realize, that despite any cognitive or physical limitations they may face from treatment; they can still be anything they want to be when they grow up.

The easiest way for us to raise awareness was to share success stories.  We knew there were few public accounts of survivors and their accomplishments. Gavin had been searching for these since he was diagnosed.  We realized many kids don’t share their story because they do not want to be perceived as the “cancer kid” their entire life.  So many organizations, and people, view cancer as the image of the sick, bald child. This image is a powerful tool to help in the fight against cancer in so many ways. However, there is one unintended consequence that has become apparent – kids are forever stamped, viewed, and perceived as that sick and bald kid. They have a life long excuse not to reach their potential because of what they have been through.  Many people give them praise for partially accomplishing their goal citing, “they did great considering they once had cancer.”  One cannot help but wonder if they were held to the same standard, could these very kids rise to the level and achieve more?  Do they possess a maturity or characteristic traits that are above average for their age?  Quite frankly, without sound research we cannot be sure.  But what we do know is that no kid should be held back by this image.  It does not have to define their life, their abilities, or their goals.

We created ccThrive – thriving after childhood cancer, and three programs we felt could make the biggest impact on childhood cancer survivors -the ccThriver program, the mentor program, and the grant program. Each is designed to achieve a specific goal.  Through the ccThriver program, we use individuals with high profiles to share inspiring success stories post treatment that will make each child dream bigger, challenge themselves, and achieve more.  Our mentor program helps them through those challenges, providing support and encouragement to achieve their goals. Lastly, the grant program helps those who need financial support to pursue their passions or goals at the next level.  These three programs will change the face of survivorship today.

Gavin and I were lucky to be in the right place at the right time. Had we not, who knows what path we would each be on today.  However I am certain that we would still be defined as the “cancer kid” regardless of where we ended up.  Thankfully we have found the right mindset to be able to use that “cancer kid” title to our advantage and we hope to empower many more to do the same.   After all, it is, and always has been about long-term quality of life for each and every survivor.  Thank you for reading our story and thank you for you interest in ccThrive.  We hope you too will feel empowered to help redefine what it means to be a survivor. Together we can turn surviving into thriving.