Helping Children Find Joy in the Midst of Challenges
It was January 2021, the middle of the COVID-19 pandemic, when three-and-a-half-year-old Elliana was diagnosed with acute lymphoblastic leukemia (ALL). Elliana began her treatment at SickKids in Toronto.
It was an isolating time and her treatment was challenging and often painful, says her mom, Amy. While Elliana was in the hospital, the Campfire Circle In-Hospital Program Specialists would come to her room and do activities with her, such as making her favourite slime (with extra glitter) or singing songs.
Her treatment protocol lasted nearly three years, and during her clinic visits and follow-up appointments, she would meet up with the Campfire Circle staff to do one-on-one activities with them.
“She developed relationships with the Campfire Circle staff and would always want to drop by The Cabin [a dedicated Campfire Circle program space located within SickKids] to see them,” says Amy. “Now, she always asks which hospital we are going to because at SickKids she gets to see her friends. I think it really helped her feel like it wasn’t just clinic. She still got to do something fun while she was there.”
During Elliana’s treatment, she developed selective mutism, an anxiety disorder where the person isn’t able to speak in certain social situations. Amy’s mom started noticing that Elliana wouldn’t talk to the hospital staff during her treatments and she didn’t want anyone to touch her. She hated the painful procedures like lumbar punctures and needle pokes. She began junior kindergarten during the maintenance phase of her treatment and two months into school, the teacher reached out to let Amy know that Elliana wasn’t talking at all during the school day either.
“For two years she didn’t talk to anybody outside of the home,” says Amy. “She was too afraid. We did so many different things to try and help her.”
The family enrolled Elliana in different therapies, such as speech and music therapy. And she attended camp programming. She would communicate with camp staff during programs, often non-verbally. “She really likes music and dancing, which is something they do a lot of at camp,” says Amy.
Since Elliana’s diagnosis and the onset of COVID-19 pandemic, the family hadn’t travelled anywhere, but last summer Elliana, her younger sister Emilia, and her parents all went to a week of family camp at Campfire Circle Rainbow Lake.
“Camp was the only place I was comfortable going,” says Amy. “Knowing that there were nurses on site and someone was there in case something happened was so comforting. We wouldn’t go anywhere remote if medical care wasn’t available while she was in treatment.”
Elliana even went to a weekend at Campfire Circle Muskoka without her family last fall, and then the family participated in another weekend at family camp in Muskoka in February.
“It’s a time to disconnect from everything else and hang out and do things we wouldn’t normally do,” explains Amy. “It’s a safe space to do a lot of different activities and I feel like I have the support that I need to be able to do that with them. Having a family guide with us, having all the programming, having cabins modern enough to stay in comfortably, takes care of all that stress so I can focus on hanging out with Elliana and Emilia.”
“It was great for her and for us to see other families and kids who are going through similar experiences. COVID was really hard because we didn’t get the opportunity to play with other kids or meet other parents.”
This year, Elliana’s selective mutism has improved. She started talking more at school and now her teacher even describes her as a chatterbox.
Thank you Elliana and Amy for sharing your story!