TORONTO - What does cancer feel like? Look like? For most teens, cancer is a foreign word, a disease adults may have to deal with but one most adolescents don't connect with themselves.
Not so for Salome Oliveira dos Santos, 16, who knows what it is to have cancer and go through treatment. Last summer, after she developed mysterious lumps in her neck, she was diagnosed with Hodgkin's lymphoma, a malignancy that primarily affects the lymphatic system.
From the end of September until December of last year, Salome underwent chemotherapy at Toronto's Hospital for Sick Children and was off school until February.
“I felt very alone, no one in my family had ever been through chemo,” she said. “I didn't know anyone I could relate to.”
That changed when Salome signed up for Photovoice, an innovative program at Sick Kids Hospital that empowers teens with cancer through the art of photography - by having them take pictures as a means of expressing their feelings about their diagnosis and treatment, and sharing them with other adolescents going through a similar experience.
Sonia Lucchetta, who launched Photovoice with fellow oncology social worker Wendy Shama after hearing about the concept at a conference last year, said that while there are many programs for younger children with cancer, few are aimed specifically at teenagers, who face a different set of challenges because of their age.
“They're going through things that are really life-altering,” Lucchetta said. “They're confronted by their own mortality, they're thinking about life and death and changes and struggles.
“If you take the cancer diagnosis out of it, if you think just about this age group, it really is about figuring out who you are. It's figuring out who you want to become, it's a time when you're moving away from your parents.
“And really a cancer diagnosis disrupts all that ... So having an opportunity to meet other kids going through the same sort of things you are, it allows them to talk about what that looks like and feels like for them.”
Each of the participants was provided with a point-and-shoot camera. Once a week over seven weeks, six teens with various forms of cancer met to share two or three photos each had shot to illustrate five themes the group came up with - strength, fear, struggles, friendships and hope.
“We're always looking for creative ways to meet their needs,” Lucchetta said of patients aged 13 to 18. “And we thought, 'Wow, Photovoice was uniquely positioned to address those needs.'
“In this day and age, everybody has a cellphone, everybody's taking selfies and photos, and Photovoice brings together photography, group process ... (and) storytelling.”
Discussing the photos in the group with the two social workers helped the teens with cancer feel less isolated, especially when their friends outside the hospital had difficulty comprehending what it means to have the disease.
“In the beginning, I felt like I was the only one going through it,” said Salome. “And you learn you're not the only one - there's a bunch of people in the same situation as you.”
On Monday, Sick Kids launched an exhibition of the teens' photos. One of Salome's showed the blurred features of a moving car, demonstrating how rapidly her life had changed, from diagnosis through treatment, which cleared the cancer from her body.
The other - a photo of a poster showing the word “Mom” with a question mark through the centre - encapsulated her worry about whether she will ever be able to have children, due to chemotherapy's potential effects on fertility.
“Cancer makes you grow up,” she said.
One of her Photovoice program mates, Yasmine Dabir, 17, was diagnosed in June 2016 with acute myeloid leukemia. She went through three rounds of chemo between June and October of that year. A bone marrow transplant followed nine months ago, and she is now in remission.
But the process wasn't easy. At one point she was in the ICU for 10 days, which left her so weak she could barely walk.
One of her photos on display at the exhibition shows a winding staircase shot from above, illustrating her inability to climb stairs once she was sent home from the hospital. Her second photo is of a white lab shirt overlaid by a stethoscope, a visual of her wish to make a career as a pediatric oncologist.
Yasmine said the program allowed her and the other teens with cancer to connect in a way that wasn't possible with other kids her age.
“I still talk to my friends from school, but they don't know exactly what you've been through,” she said. “But the teens in Photovoice, they know.
“We all became very close. We follow each other on social media, we have each other's phone numbers.”
What Lucchetta found amazing was how quickly the teens opened up about their feelings within the group environment, far more quickly she said than would have occurred during a one-on-one session with a social worker.
“I think really what we saw each and every week was that they found a sense of camaraderie, they found that they were all speaking the same language, that they were in a space that was safe and supportive,” she said, adding that Sick Kids hopes to run the program for adolescents with cancer at least once a year.
“Clearly, there was some magic happening with the photos that we were able to talk about the issues.”