Skip to main content

Rett’s Roost offers sanctuary to sick children and their families

by: Christian Seeber

Two of the runners from last fall’s Superhero 5K benefit run for Rett’s Roost enjoy the chance to have fun wearing their favorite superhero gear. COURTESY PHOTO

OGUNQUIT — Far from the hospital oncology departments, where days, weeks and often years pass as children valiantly stare down cancer, there is a place where peace is born, again, and again, and it’s called Rett’s Roost.

Rett’s Roost is a sanctuary for families with a child afflicted by cancer, offering a community of loving kindness and supportive activities in a peaceful, natural setting to ease their experience with the disease, said Deana Cavan, executive director of Rett’s Roost, the nonprofit she and her husband, Jim, founded in 2015 after their 10-month-old son, Everett, died of malignant rhabdoid tumors.

In the past three summers, the Cavans have welcomed into their hearts more than 30 families affected by cancer to nine retreats held throughout New England. These three-day, three-night retreats are lovingly orchestrated with delicious food, bonding support groups, playful children’s activities, nurturing therapies and time for the families to rest and breathe, to just be together without having to plan a single moment of their time.

This was the vision of the Cavans, to offer a free, intimate getaway for those families who have been touched by cancer. And there are many. In the United States, 46 children are diagnosed with cancer every day. Rather than raise money for research, which Cavan described as admirable and necessary work, she said offering “Open to Healing” bereavement retreats and “Positively Healing” survivors retreats gets to the immediate need of cancer families: finding camaraderie and even joy again.

“When your child goes through cancer treatment or you lose your child, not many people understand what you are going through, so being in the same space where everyone has experienced similar losses or the loss of the health of your child and the time you could have had with them over the treatment period, it feels like we are not alone anymore,” said Cavan.

Each weekend-long retreat costs about $10,000 on average for four to five families to attend, even more if the families are awarded travel scholarships and flown to New England. There are many ways to donate to Rett’s Roost, but the biggest fundraiser is the upcoming Oct. 22, the Superhero 5K and Fun Run at Throwback Brewery in North Hampton.

“Children facing pediatric cancer are superheroes,” Cavan said. “So we ask everyone joining in the 5K and fun run that follows to don their favorite superhero costume to lighten the mood and have fun.”

Last year more than 200 runners, many sporting capes and pushing strollers, ran in the 5K, helping Rett’s Roost raise $22,000. This year, organizers are hoping to increase participation to 300 runners raising a goal of $30,000. There will be a 100-meter Fun Run, a magician, superheroes in costumes, live music, face painting, yard games, delicious food and beer from Throwback. The 10 a.m. run starts at the brewery and ends at the brewery, while parking is provided at Timberland in Stratham, with shuttles bringing the runners to the brewery.

Newfields residents Jacqui Silvani, her husband, Adam, and their three children are planning to join in the fun next month. This past summer, Silvani and her family attended Rett’s Roost’s first retreat of the season in Eliot, Maine, at Shilo Farm Eco Lodge and Retreat center. Her son, Joey, had completed 18 months of intensive treatment with complications for neuroblastoma in January and the family had just come out of the haze of the experience.

“After all that stress and confusion, I felt completely taken care of, the way Deana had thought of everything exceeded my expectations. She didn’t want us to help clear the table, or do a thing, to just be and relax and talk to the other parents and have our kids hanging out with the kids from the other families. It was remarkable,” Silvani said.

Silvani said she was relieved to experience ease in sharing with the other survivor families at Shilo Farm.

“When you are around the other parents you don’t have to talk about the experiences themselves….There was this total understanding of our mutual experiences,” she said. “We talked about what our kids went through organically. It was nice to have the time to connect with the parents and take a breath. Shilo farm was just the most beautiful place to do it. We sat around the fire every night, it was a beautiful weekend. Deana and Jim and Jonas and Amylyn (Shilo owners) were amazing.”

In the six months after his treatment, Joey had gained a lot of stamina and was really able to benefit from running free on the farm, his mother said. Joey loved gathering the eggs each morning, petting the goats, playing with the farm dog, Shasta, whiffle ball, doing yoga with the dozen other children and generally having a fantastic time with his sister, Madeline, and brother, Jack.

“He just had his three-month scan and thankfully it was all clear. Joey started kindergarten and is really getting back to being his beautiful, cheerful self,” Silvani said.

That is music to the Cavans’ ears. They love to keep up with the retreat families and are planning to add a private group site online to create a venue for mutual support for all the families. To pull off nine retreats in the past two and a half years, the Cavans have rented inns and rental properties in Massachusetts, New Hampshire and Maine. But a new headquarters for Rett’s Roost has been secured here in Ogunquit by Rett’s grandparents, Thomas and Marcia Aulisio. The Cavans, along with their, daughter, Evelyn, and Deana’s parents are getting settled and planning this winter to prepare the home for the 2018 retreats.

“We are hoping to increase the number of retreats because it’s more cost effective to have a single location with all the supplies here on site, and we’ll be in close vicinity to all the wonderful therapists and volunteers who have driven all over New England thus far to help us nurture our families,” Cavan said.