Elena: The Courage in Being Human
How Elena Sweet Survived Cancer and Found Her Voice
When asked about herself, 13-year-old Elena Sweet doesn’t hesitate. “I’m the biggest drama queen you’ll ever meet,” she says.
Liz, Elena’s mom, shares a more generous framing: “She has a strong spirit. She lives out loud. She has always let us know exactly how she’s feeling and what she needs.”
As a young child, Elena’s penchant for drama manifested as elaborate imaginary games. As she grew, she explored new worlds as an avid reader and passionate stage performer. Elena was participating in a theater class in San Francisco when her Dad, Josh, first noticed the limp.
It was the summer before her 11th birthday when Elena began to feel an ache in her right leg, which a pediatrician attributed to growing pains. But over Thanksgiving break, the pain got worse, and one night, Elena collapsed on the way to the dinner table.
Josh and Liz rushed their daughter to UCSF Benioff Children’s Hospital Oakland where she was diagnosed with Ewing Sarcoma, a rare form of bone cancer. As a doctor relayed the news to Liz in a crowded hospital hall, she thought to herself, "This is the moment that everything changes."
Everything Changes
Elena’s prognosis was good, but the journey would be arduous. Over 10 months, she received 14 cycles of chemotherapy, spent 115 nights in the hospital, and underwent multiple surgeries, including a 15-hour procedure to salvage her leg.
"Suddenly she’s exhausted," Josh recalls. "She’s sleeping all the time from the pain medications. She’s on the couch because she can’t walk up the stairs. She’s in so much pain. She’s very, very sick. Nothing was making her feel better."
As Elena’s parents agonized over how to comfort their child and doctors ran the gamut of pain management options relief came in surprising places. One day, Hania, a child life specialist, brought Ahbi, Oakland’s beloved facility dog, for a visit. Ahbi put his paws on Elena’s bed, then climbed up next to her, and she put her arms around him and held on. "I think it was the first time she actually felt some real comfort," says Josh.
UCSF Benioff Oakland’s Braddock Emotional Support Team (BEST), which offers psychological services for hospitalized children, worked closely with Elena to address her fear of needles. Together, they came up with a "poke plan," empowering Elena to dictate the timing of the poke, vocalize her concerns, and advocate for herself. "They helped me realize that I could get through this by expressing my feelings."
"Everyone, the doctors, nurses, child life specialists, psychologists, music therapists, massage therapists, educators, they were all focused on treating our whole child and keeping her spirits lifted,” says Liz. "UCSF Benioff Oakland became our family, our home. We felt so held."
Designing Survival
Elena always believed she would survive the cancer. "I’m an optimist," she says. But coping with debilitating illness and prolonged hospitalization took creativity.
Elena sought connection with the people around her. She designed dream apartments for her nursing team based on detailed individual consultations. She organized events, including a talent show (which she directed) and a rousing game of sharks and minnows in the hospital halls. She ran a henna business for patients out of her hospital bed.
And she sought inspiration in the experiences of others coping with illness and injury. She devoured the stories of children who had battled and survived cancer. After a year in a wheelchair, she developed a deep empathy for people with disabilities and has since become a vocal advocate for inclusion and equal opportunity for people with impairments that prevent them from fully participating in society.
Elena’s experiences have inspired her to pursue a career in health care. After considering nursing (I don’t want to give needle pokes), becoming a doctor (I don’t want to be in school that long), and child life (they don’t get paid enough), she has settled on social worker: "So I can help more people, and do a little bit of everything for everyone."
Elena's Courage
Elena is now in remission. After missing most of her 5th grade year, she rose from her wheelchair to walk, assisted only by a crutch, across the stage to accept her diploma to deafening applause.
And she’s back to doing what she calls “the normal things” – watching TV, reading books, hanging out with friends, and going to school. But life has also grown richer. For the past year and a half, she has served as a Patient Ambassador, sharing her story at events across the Bay Area to help raise awareness and funds for the hospital that saved her life. She is also working on a graphic novel about what it was like to survive bone cancer.
In honor of her triumph over adversity and her contributions to our community, Elena was awarded the 2024 Colin Powell Medal of Courage at the Dreamfest Concert for UCSF Benioff Children’s Hospitals. She insists that courage isn’t about heroics or putting on a happy face, it’s about being human, connecting with others, expressing your feelings, and asking for help when you need it.
"Well, I think she’s pretty brave,” says Liz with a smile. “She made this journey her own."