Today we’d like to introduce you to Shanna.
Alright, so thank you so much for sharing your story and insight with our readers. To kick things off, can you tell us a bit about how you got started?
I was a happy and healthy child. No ear infections, no endless days spent home from daycare with fevers, busy playing outside, making friends, and finding new adventures each day. Until February of 1998, when I was 7 years old and my left leg developed a deep ache, which turned quickly to a sharp, debilitating pain in my knee. By March 11, 1998, my femur had broken in numerous places, and a visit to my primary care led to a following day of tests at Mayo Clinic, where I was diagnosed with a 1 in 2 million type of osteosarcoma – a rare childhood bone cancer.
Due to the aggressive nature of the tumor, I underwent 42 weeks of inpatient chemotherapy, with some of the most toxic medications available. The side effects were brutal, and cancer was my family’s entire life for the majority of a year. Halfway through treatment I had my leg amputated and reconstructed to use my ankle as my knee in a procedure that was newly used in cancer treatment called rotationplasty. This change meant I would use a prosthetic for my entire life.
While in the hospital I had few long term survivors who served as mentors, but I DID have many peers who became an extended family. We would organize our pre-treatment visits to the clinic around each other, do our homework together while in the hospital, and share the one video game system that was available while we were inpatient (Mario Kart battles were the real deal). We also had an unspoken, inherent level of trust that was hard to replicate in any other setting. Each day we faced harder battles than others might ever face in their entire lifetimes, and to us, it was just another day of treatment. As kids and teens, we were living alongside of, and despite our cancer diagnosis – unknowingly coping the best we could only because we had each other. Those relationships with friends who are both still alive, and who have left us, and the feeling of belonging that came with them drove the passion I have for building community now.
In the 28 years since my treatment (and subsequent diagnosis with a genetic predisposition to developing further cancers), I have felt most alive when connecting with others to highlight the joy and strength that can be experienced alongside trials. In many ways, life’s greatest joys appear because of those trials, and I have never tired of watching others experience that fully. Shortly after treatment, I started providing mentorship to new amputees and children diagnosed with cancer. This continued for more than a decade, and also provided incredible stories to be shared on stages as a professional speaker visiting venues as large as 25,000 in the decade after that. I worked alongside non-profits, research organizations, fundraising entities, and awareness campaigns, experiencing a wide variety of methods to help others.
In 2019, while completing my MBA at the University of Minnesota, I decided it was time to start something that brought together the healing power of connections between families affected by childhood cancer, while also raising awareness and funding for childhood cancer research. And thus Childhood Cancer Community came to be.
Today, I serve as the president of the organization, developing strategy, building partnerships with hospitals, non-profits, activism organizations, while managing volunteers who make the work we do possible. My parents remain very involved in the work, assisting with direct relationship building with families diagnosed, and operations. We serve more than 250 families across the upper Midwest, and our services are available for anyone in that area newly diagnosed, in treatment, or post treatment or facing bereavement due to childhood cancer.
I’m sure it wasn’t obstacle-free, but would you say the journey has been fairly smooth so far?
My personal journey with cancer and amputation had the challenges that one would expect: side effects, hospital visits, scans, anxiety, and grief, but that experience has also shone a light of perspective on the rest of my life’s journey. Challenges always arise in business as well, but they are pale in comparison to the challenges that arise when our health is in jeopardy.
The largest challenges that come in non-profit management are the continual pursuit of regular financial support, growth by way of volunteer staff, and balancing future goals with current operational priorities. We have been so fortunate to have a team of volunteers who remain dedicated, smart, and hard working, and they have made our success in service possible.
Thanks – so what else should our readers know about Childhood Cancer Community?
Childhood Cancer Community exists to provide meaningful connections to families affected by childhood cancer to promote positivity and purpose throughout their journeys. I founded it in 2019 after spending nearly 2 decades working closely as a mentor to hundreds of childhood cancer patients and amputees personally, investing time in international patient education and empowerment for amputees, and speaking professionally across the United States. Its purpose is near and dear to my heart, but it is also a place where the community members can make it their own. Everyone has a role and every role provides healing.
We provide regular opportunities for families across the upper Midwest to connect over meals, fun activities, and support group and educational gatherings. We work to ensure that newly diagnosed families have an immediate and relevant connection in another family who serves as their mentor. Anyone affected by the cancer diagnosis is welcome to join the group – the patient, a childhood cancer survivor, siblings, parents, and families that are bereaved.
From the logo to the decorations at events, we are most proud that each interaction with CCC provides hope, encouragement, and understanding. Families facing the impossible deserve to be welcomed into a safe space that feels “normal” to them. We work with local community groups to provide resources, meals, and gifts with the aim being that the families do not feel like beneficiaries of “charity” but instead that they have found a place filled with goodness when other things may feel overwhelmingly challenging.
This organization is different than others because it actively empowers the individuals who join it. We encourage survivors to become volunteers, parents of survivors and the bereaved to become mentors, and long term families to step into leadership roles. This brings a constant purpose to the cancer journey, and allows individuals to continually be involved when the challenges that come with life after childhood cancer treatment arise.
Additionally, CCC is designed to bring families together so that we can also raise awareness of the realities of childhood cancer. We donate 5% of our unrestricted gifts to childhood cancer research each year, work with advocacy projects, and use our social media presence to continually shed light on the need for more funding for childhood cancer research.
What do you like and dislike about the city?
Rochester is a truly incredible place. Known, of course, for being home to the world’s best hospital, the city is a place of service. The stories of those who visit Rochester are complex and often sobering, but are also filled to the brim with hope. I’ve been a resident of the city for 15 years now, and am happy to be raising my children in a place where we offer visitors directions, listen to their hopes and struggles, and value relationships above all else.
I will always advocate for a city to be more walkable, more bike friendly, and more open to connecting via “third spaces” and I think we can certainly continue to improve in this capacity as well!
Contact Info:
- Website: https://www.childhoodcancercommunity.org
- Instagram: https://www.instagram.com/childhoodcancercommunity
- Facebook: https://www.facebook.com/ChildhoodCancerCommunity
