Editor’s note: This is the latest column on grief and children that runs periodically. If you have an idea about a future column related to this topic, please be in touch: firstname.lastname@example.org
Last month, UNC became one of only a handful of cancer centers in the United States to bring on an adolescent/young adult liaison to provide psychosocial support solely for 13- to 26-year-old patients who are caught between the pediatric and adult oncology worlds. The story behind how this new position came to be captures how one local family channeled their grief and illustrates the healing power of “giving back.”
Three years ago this fall, Sophie Steiner, then a freshman at East Chapel Hill High School, was diagnosed with metastatic germ cell tumor, a rare type of cancer. She immediately began the first of six rounds of high-dose chemotherapy and later underwent numerous invasive surgeries. Her treatment required frequent, lengthy inpatient hospitalizations and left Sophie feeling ill and exhausted much of the time.
But Sophie was intent on not allowing cancer to consume her life. She sought out pockets of normality and stayed connected with friends and involved in activities she enjoyed. But it wasn’t easy. Cancer has a way of dominating one’s existence, especially for adolescents. Sophie saw other teenagers also struggling with the loss of independence and their sense of self – especially those not from Chapel Hill and far from friends and support networks. She began wondering how she and her family could help her peers.
Despite receiving the best treatments and the relentless efforts of her oncologists, Sophie’s cancer was too aggressive. She died at home in August 2013, ten months after first being diagnosed. Her family asked that instead of flowers, people could donate money toward Sophie’s wish of helping others.
With a surprising amount of support pouring in, her sisters Annabel (who was just starting seventh grade) and Elsa (who had just graduated from East Chapel Hill High School) talked to their parents about creating a foundation to support the psychosocial needs of adolescents and young adults with cancer. The Be Loud! Sophie Foundation was born – named after a poem Sophie had written, which includes the lines “Be loud / and move with grace / Explode with light / Have no Fear.”
Be Loud! (http://beloudsophie.org) flourished over the next two years, thanks to enormous community support. Schools held pajama parties and local businesses organized fundraisers. The Cat’s Cradle and Fearrington Village hosted benefit concerts featuring legendary local bands. A local Boy Scout troop calling themselves “Bike Loud” biked across the country from Oregon to Wrightsville Beach to support the cause. Meanwhile, the Steiners worked with UNC Hospitals to create the adolescent/young adult liaison position within the Lineberger Comprehensive Cancer Center and Comprehensive Cancer Support Program. They are thrilled that the position was recently filled by Lauren Lux, a clinical social worker. Be Loud! is now funding the position and the programming that goes with it.
Working on the foundation has been central to the Steiner family’s grief and healing. It keeps Sophie’s memory alive and vibrant, and ties the family to the community. The fundraising events are all planned to reflect Sophie’s quirky spirit. The website is filled with photos that Sophie took and her bedroom has been converted into the Be Loud! headquarters. As a result, the family doesn’t avoid talking about Sophie and instead openly embraces her memory.
When we spoke with Annabel for this column, she talked about how the foundation has helped assuage her grief. She is in a much better place than two years ago, but it is, of course, still hard. She started her freshman year at ECHHS this fall and thinks about how Sophie should be a senior, this being the one year they would have been in high school together. There is a “Be Loud!” student club at school, started by some of Sophie’s close friends. Annabel has joined and will help plan events this year, including a showcase for local high school bands.
As important as working on Be Loud! has been, Annabel understands that having one’s grief made so public has some downsides. She cringes inside when getting what she calls “the look,” that expression of pity and sympathy when people ask “So, how are you?” Annabel is a polite young lady, so she usually smiles and says “I’m fine.” But she sometimes wishes that people would either say nothing or just congratulate her on Be Loud!’s success. Still, trading privacy for the chance to fulfill Sophie’s wishes is a trade she would make any day.
Grief is multi-faceted. It includes deep sadness, adjusting to new realties and accepting unrealized futures. It also includes celebration and laughter. Over time, happy memories slowly eclipse the sad ones and the sharp edges of grief become a bit duller. For Annabel, this is thinking about her big sister hiking a mountain, hanging out with friends, or spending time as a family. Thanks to Be Loud!, many others are now getting to know Sophie’s story, and many young people with cancer will benefit as a result.
Hadley Kifner is a pediatric chaplain at UNC Hospitals. Justin M. Yopp is an assistant professor in the Department of Psychiatry at UNC.