Monica Henderson was diagnosed with rhabdomyosarcoma, a rare and aggressive cancer, at age two. After a year of chemotherapy and radiation, she became cancer-free by age nine. However, like many childhood cancer survivors, Henderson continues to face long-term health challenges resulting from her treatment.
Recently, Henderson participated in Photo Voice, a program organized by the Childhood Cancer Survivorship Clinic at Golisano Children’s Hospital at Penn State Health Milton S. Hershey Medical Center. The initiative is funded by Four Diamonds and aims to help adult survivors of childhood cancer process their experiences through photography and writing.
The project involved five adult survivors who worked with an art therapist and social worker to explore issues such as body image, relationships, and self-identity—common concerns among childhood cancer survivors across the country. Their work was displayed during an exhibit at the Tree House Café in Penn State Health Golisano Children’s Hospital on September 30.
Dr. Smita Dandekar leads the clinic’s multidisciplinary team, which includes professionals such as a neuropsychologist, genetic counselor, social worker, nurse coordinator, and nurse practitioner. She said: “Four out of five children are now cured of their cancer, and these children will live another several decades. We feel a sense of responsibility in pediatric oncology. The treatment doesn’t end at being cancer-free. We must help them thrive and survive in every way.”
Four Diamonds supports the clinic by covering all medical expenses related to cancer care not covered by insurance for eligible patients. Its mission is to defeat childhood cancer through quality care, comprehensive support services, and research efforts.
“Having a multidisciplinary program like ours is uncommon,” Dandekar said. “We’re so grateful for Four Diamonds for supporting the services we provide in our program, including the role of our social worker, Meredith Noel.”
Noel assists survivors with various needs ranging from financial assistance to mental health screenings and navigating appropriate health plans. She started Photo Voice with Alexis Steefel, an art therapist also funded by Four Diamonds.
Each week during the program, participants discussed different themes about survivorship before taking photographs that reflected their experiences. Many felt isolated before joining the group; Henderson noted she did not fit into existing programs for either pediatric or adolescent/young adult survivors.
“It was really nice to be able to acknowledge both identities I have as an adult survivor of pediatric cancer,” Henderson said. “I deal with unique challenges that people older and younger than me may not face. Being treated as a child and now as a young adult is its own experience.”
Noel explained: “We gave them photography tips, but the biggest tip was that we didn’t care what the photos looked like… Looking at the art and talking about it gave them enough structure to continue the conversation.”
Steefel added: “When we looked at the first week’s photos and essays, we had to stop ourselves from crying… They were just so powerful. We never expected the level of depth that the photos and narratives portrayed.”
Dandekar emphasized that addressing emotional consequences is crucial: “There is a mental health impact of being a childhood cancer survivor… When they’re cured, we tell them to go be a kid, but they find that forming relationships can be a struggle because they are more emotionally mature than most of their peers.”
Henderson shared her perspective: “Receiving that response was just a reminder not to talk about it because people don’t know how to react… I never emotionally healed from having cancer because I never fully processed it.”
Reflecting on the September exhibit’s impact on families involved in Photo Voice, Dandekar said: “All the parents found me at the gallery and expressed how positively the project had affected their daughters… One mother was in tears, saying the project uplifted her daughter’s spirit. She had finally found her tribe.”
