Teen fighting pediatric cancer says Camp One Step has brought light and hope and enabled him to be a kid again

Eighteen-year-old Trevor Pavey has been on a tremendously challenging pediatric cancer journey since being diagnosed with medulloblastoma in 2016. After his initial brain tumor was found, he faced surgery, chemotherapy and radiation, followed later by the discovery of a second brain tumor, more painful treatments, a diagnosis of chemo-induced leukemia and two risky stem cell replacements.

And yet – despite the difficulties that have altered his daily life and his future – Trevor is a cheerful, funny and hopeful young man who spreads positivity to those around him.

Trevor and his mom, Michelle Pavey, say much of his often-joyful demeanor can be attributed to his experience with Chicago-based nonprofit Camp One Step – particularly the CONNECTED digital programming that was a lifeline during the pandemic, and again as he recovered from the stem cell replacements and complications that have resulted.

“A pediatric cancer diagnosis can suck the life out of you,” Michelle says. “But for our family, Camp One Step has brought back some of the light that was missing.”

Camp One Step by Children’s Oncology Services was founded in 1978, to provide opportunities for pediatric cancer patients and survivors, along with their families, to enjoy free year-round camp experiences that foster joy, belonging, confidence and lifelong friendships. The in-person and virtual activities bring support, strength and hope to hundreds each year. The organization has served more than 20,000 campers in its 45-year history.

Today, Camp One Step has 11 traditional in-person camps, with a knowledgeable on-site team of volunteer doctors and nurses meeting participants’ medical needs. Trevor has attended Brain Tumor Family Camp, Summer Camp and Sibling Camp in Wisconsin with his mom, his dad David and his two brothers, 21-year-old Jonah and 20-year-old Owen. In addition, Trevor has taken part in two camps on his own: Utah Ski Camp in Park City and Dude Ranch Camp in Wisconsin.

These experiences have enabled Trevor to make new friends and be a kid again. The impact is evident in his smile as he recalls many of the adventures. The camps also have given the Paveys, of suburban Bolingbrook, the opportunity to bond as a family and find support from others who “get it.”

But Trevor says CONNECTED, the digital arm of Camp One Step, has made the biggest difference – because it has been the one reliable bright spot when he was stuck in the hospital at his lowest.

CONNECTED was created in 2020, after the pandemic forced the cancellation of in-person camps and activities.

“Children and families who already felt isolated suddenly found themselves even more alone,” says Jeff Infusino, president of Camp One Step. “We knew how important Camp One Step was to our families, so if they could not physically attend in person, we would bring camp to them. We immediately began rolling out user-friendly online content that provided an opportunity for engaging virtual activities and connections with others. Families really embraced the free digital programming, and CONNECTED quickly became an essential means of support and a much-needed link to normalcy.”

Today, CONNECTED has moved beyond being simply a pandemic resource. Infusino says that as COVID restrictions have eased, it has been apparent that digital programs are still needed and wanted by children and families who might not be able to attend in-person camps. So Camp One Step has kept CONNECTED going strong and, in fact, has grown its offerings and is spreading the word so that many others can benefit from it.

This is welcome news for Trevor. In the wake of his stem cell replacements, he has had to spend up to 11 weeks at a time in a tiny hospital room, seeing only his immediate family and members of his medical team. The hospitalizations have been followed by confinement at home, with visitors limited due to the fear of him contracting an illness while in a weakened state.

Michelle says Trevor, normally a gregarious kid who loves to sing and dance, has struggled during these times. She says it was hard to stay positive and keep his spirits up during those long weeks. But CONNECTED made a big difference. It provided the opportunity to interact with people outside of the hospital environment, and it was something to plan for and look forward to, which matters a lot when there aren’t many bright spots in a day.

The benefits of CONNECTED extend to parents as well. Family programs include virtual breakout groups that give the adults a chance to share their stories, ask questions and offer support to each other. The in-person camps also provide plenty of opportunities for parents to connect.

Michelle says this is often where they find their people – not in the Facebook groups, which can be filled with bad news, and not in their social circles, where friends try their best but don’t always know what to say or do, and often end up retreating. She adds that seeing kids and families who are doing well and thriving can provide a lift and needed inspiration for others.

CONNECTED offers resources in a variety of formats. There is on-demand programming that lives on the website and can be done independently at any time, such as science experiments, crafts, cooking, meditation and yoga. Then there are scheduled single- or multi-session “live” programs that participants can do along with other children who have been diagnosed with cancer and their families.

The scheduled programs include four days of online and offline activities. The online activities are done together through live video chat, while offline activities can be done independently or with family or friends. The next scheduled CONNECTED programs will take place in August and November.

Trevor says it’s exciting to receive the care packages that come before each CONNECTED session – boxes full of supplies for the art projects, games and other activities. One highlight, he recalls, was receiving an ice cream maker and gift card to purchase supplies for the live ice cream-making demo. Other virtual group projects have involved making donuts, waffles, candles, flags and tie dye shirts.

But for Trevor, the best thing about doing camp through CONNECTED is the opportunity to hang out in the chat rooms and take part in informal virtual activities with kids his own age who are going through similar experiences. He points to the online dance parties and a New Year’s Eve party as highlights.

“Especially during COVID, when there was no social interaction, actually being face to face talking with friends was pretty big,” Trevor says, adding that many of the kids he sees in the digital programs are campers he’s met in the past.

Michelle stresses that for teens, this opportunity for bonding and friendship is crucial, because social opportunities are lacking for older kids who are facing serious illness.

“Teens are not always served well in a hospital setting,” she says. “They need a different level of intelligent discourse, and you can’t leave that up to a staff that’s already overworked. Whether in person or virtual, Camp One Step fills that role, by giving teens a real-time connection to other kids their age.”

Pavey family members are incredibly thankful for their strong faith and church community. They say the people they have met through Camp One Step also have given them strength and support when they’ve needed it most.

“When your child has cancer, all you think about is getting him through each day. It’s something no one can truly understand unless they’re living it too,” says Michelle, who has taken four leaves of absence from her job as a dental hygienist and has been by Trevor’s side every step of the way.

Today, Trevor’s brain tumors are under surveillance, and he continues to recover from his second stem cell transplant in October 2023, which was done to treat his leukemia. The transplant left him with deficits and presented him with ongoing battles to fight over the past several months.

But Trevor’s positive outlook is ever present, as he looks forward to his future opportunities. He graduated from high school in May, has already taken some online college classes and wants to join his brother Jonah as a Camp One Step counselor. His brother Owen also plans to become a counselor.

Michelle calls Trevor’s illness “terrible but treatable,” and says the situation is “nowhere as good as it should be, but it could be worse.”

How has the family managed to maintain such hope? Michelle says that she, her husband and her sons believe in getting support from others who have been there, and then offering support to those who are just starting the journey.

“There will always be someone in front of you and someone behind you,” she says. “That’s the magic of the safe space and support that Camp One Step provides.”

To learn more about Camp One Step, visit camponestep.org.