By Amy Robins
SAN DIEGO — My son Sean Lewis Robins dreamed up The Seany Foundation in his bed. Sean, 16 at diagnosis, had been trapped in his illness, Ewing sarcoma, a rare pediatric bone cancer for six years already. Due to his isolation and inability to have a normal teenage life, Sean reached out on the internet to chat with other teens with cancer and the messages poured in. He learned of the vast population of suffering young people all in the need of camaraderie, better treatments and cures. “It just isn’t fair!” said my young son. Of course it wasn’t, but what can you say?
When Sean passed away in late 2006, we wanted to pick up his torch of empathy and concern for young cancer survivors, so we launched his legacy, The Seany Foundation. To be completely honest, I couldn’t comprehend how we’d be able to run a foundation. I was grieving and exhausted and couldn’t see past my current sadness and pain, even selfishness. My husband Mitch on the other hand dealt with his own grief in a different way and was determined to bring Sean’s dream to reality. And so he did.
Mitch and I had been Sean’s caregivers for so many years. We divided our roles into two main areas: My part was the day to day treatment and routine of fighting and thriving through all that cancer brings on, and Mitch took on the role of “morale officer” with gusto, positivity and adventure for Sean whenever and wherever he could. Each of our roles were important and contributed to the best possible life for Sean at that time.
During Sean’s illness we tried to meet the needs of our other two children as well. At Sean’s initial diagnosis in March of 2000, Sean’s older brother Alex was finishing up high school and considering which university to attend. Sean’s younger sister Emily was only 11 at the time and was very close to Sean. Alex and Emily were each at such a crucial point in their development. Alex spent all of college and beyond living his life out of state (at my behest) but juxtaposed to his sick brother. Emily had to live side by side with Sean’s pain, frustration and disappointment throughout middle school, high school and into college. Siblings suffer in so many ways – experiencing feelings of guilt, anger, sadness, neglect and depression – and continue to whether their sibling survives or dies.
None of us were prepared for Sean’s death.
The Seany Foundation began as a research foundation, funding scientific research that might lead to enhanced therapies and cures for pediatric cancer. But we also wanted to improve the in-patient quality of life for teens suffering from cancer. In 2010 we funded the “Seany Teen Lounge” on the new oncology wing of Rady Children’s Hospital in San Diego to make life better for the teen population in real time. We were content with our mission.
After seven years of operation, The Seany Foundation raised over $2 million and we’re very proud of the things we had done. Yet Mitch and I began to feel like our mission needed to change. We learned that the best way to spend our money and honor our amazing supporters was to help the pediatric cancer community in the moment, providing indispensable opportunities for them to live their best lives now. We learned that important cancer research would be funded through much larger institutions and donors. So, The Seany Foundation evolved and focused on funding and enhancing quality of life for kids, teens and families affected by cancer—our new mission.
As serendipity would have it, The American Cancer Society (ACS) decided to give up their work and funding for pediatric cancer summer camps all across the country. In San Diego these camps were called Camp Reach for the Sky and had a huge following of campers and counselors who had participated for decades. With the threat of losing this precious and powerful camping experience, The Seany Foundation stepped in to fulfill our new direction. We hired Robby Medina, cancer survivor, past camper and counselor and current ACS camp director. Seany’s Camp Reach for the Sky began to offer and provide free camp each year to hundreds of kids and teens throughout Southern California.
All of the counselors are still volunteers, and most were previous campers themselves. It’s an enormous family of shared experience and love.
The three flagship camps are ROC (Resident Oncology Camp), Sibling and Day Camp. They are each separate weeklong programs. ROC and Sibs are overnight camps in Julian. ROC serves those who are currently in treatment or out of treatment. Sibs Camp is for the siblings, an equally important group of young people who suffer and are affected by their siblings’ disease. Mitch and I had experienced this personally in our own family. Day camp is for the little ones, both cancer survivors and siblings and takes place locally in Balboa Park.
Over the past five years The Seany Foundation added three other distinct camping programs, again all free of charge and staffed by volunteers. Teen Winter Weekend camping session caters exclusively to teens on or off treatment for cancer and their siblings. Families experiencing a parent cancer diagnosis attend Seany’s Family Camp. Staying true to our mission, Family Camp’s primary focus is on the children within these families. Finally, Family Camp: RyanStrong is for families who are dealing with the loss of a sibling or parent due to cancer.
The Seany Foundation and Seany’s Camp Reach for the Sky are one huge family! When one of our campers hurt, we hurt. When a recurrence or new diagnosis occurs (as a secondary cancer) in the camper or counselor population, the whole Seany family provides support and love. When a much beloved camper named Kimi succumbed to her cancer after 10 years, from the age of 3, The Seany Foundation founded Tribute to Life to serve as a forum to come together at this difficult time. Kimi was a very special young lady and all who knew her loved and admired her courage and resilience.
Though The Seany Foundation is non-denominational, The Robins Family is Jewish. Mitch thought the Jewish tradition of “Sitting Shiva,” where relatives and friends come together to laugh and cry and tell stories about the recently passed, would be a fitting memorial for Kimi and others. A local brewery donated space, and The Seany Foundation invited everyone who knew Kimi to join in memory of her. Those who wanted to speak or tell a story did so. Kimi’s father Peter connected with those who loved his daughter and talked about her to those she loved. It was healing for him and everyone there.
Through our Tribute to Life (Seany’s Shiva) we provide a safe space for families, campers, camp counselors, TSF staff and any volunteers who would like to honor the individuals’ memory through shared stories, tears and laughter.
The Seany Foundation is honored to provide quality of life programing for the cancer community. I know our son Sean would be proud of the things we have done and continue to do for kids, teens and families affected by cancer. Please visit www.theseanyfoundation.org for further information about our mission, our programs, our fundraisers and especially our camps which are free to all who fit the criterion. (You do not have to live in San Diego to participate but you do need to get here.) Please inquire through the info page or contact (858) 551-0922.
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Amy Robins is a San Diego County resident.