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

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.

Rett’s Roost receives $19K from Liberty Mutual Fundraiser

Mark McVeigh, senior vice president of distribution for Liberty Mutual benefits, left, and Tara Chaffee, program manager, marketing and distribution events, right, present a $19,000 donation check to Deana Cavan, co-founder and executive director of Rett’s Roost, and her daughter Evie, from money raised during Liberty Mutual Insurance’s fundraiser.

DOVER – Rett’s Roost announced a recent donation of $19,000 from the Dover office of Liberty Mutual Insurance.

Rett’s Roost is a private, not-for-profit organization that provides a sanctuary for families with children afflicted by cancer, offering a community of loving kindness and supportive activities in a peaceful, natural setting to ease their experience with the disease. 

Participants raised $9,500 during the 21st annual Mulligans event, which included a golf tournament at Wentworth by the Sea Country Club in Rye Aug. 29, and other fundraising activities throughout the preceding weekend. Liberty Mutual matched all donations, totaling a record $19,000 gift.

“We value the opportunity to come together as an organization and community to support such a great cause. Rett’s Roost plays an integral role in support of families afflicted with childhood cancer and we’re proud to help,” said Mark McVeigh, senior vice president of distribution for Liberty Mutual benefits.

“Liberty Mutual and the event participants took me by surprise with their kindness and generosity toward Rett’s Roost,” said Deana Cavan, co-founder and executive director of Rett’s Roost. “We are truly humbled by the award and inspired to use it to make next year’s retreats better than ever.”

Rett’s Roost was founded in 2015 by Jim and Deana Cavan, who invested their time and money to get the program off the ground. The organization has already held a number of retreats for bereaved families and families with cancer survivors. All money contributed to Rett’s Roost supports these retreats. For more information, including how to contribute, visit

Rett’s Roost honors memory of an ‘energetic force’

Deana Cavan talks about upcoming fundraising efforts and the first of many retreats that were created from funds donated during the illness of her son, Rett. Photo by Deb Cram/Seacoastonline

DOVER – Rett Cavan died Feb. 22. Not even a year old, he had been diagnosed with a rare and serious form of pediatric cancer after a rhabdoid tumor was discovered on his liver the autumn after his birth. But his mom, Deana Cavan, said he remains with her still, and will remain a presence in her life forever.

And so, she said, it was not surprising to her to learn that 222, the month and day of his passing, holds significance – and would become the centerpiece of a new organization she and husband Jim have started to offer retreats to families of children with cancer. Rett’s Roost, as the nonprofit is known, has as its motto “2 love, 2 live, 2 heal.”

“222 means to go forth with your dreams,” she said, “and that’s what we’re doing. We felt like Rett had a very spiritual life. He’s this energetic force around us, and he’s so excited for these retreats to be happening. I always say Rett is running this, not me.”

Rett’s Roost has already held one retreat in Leydon, Mass. in August, and is holding another this coming weekend at Shilo Farm Eco B&B in Eliot, Maine, run by Cavan’s former yoga teacher, Jonas Amberger and wife Amylyn. The couple is donating their inn for the retreat, and for an upcoming farm-to-table fundraising dinner to benefit Rett’s Roost set for Sept. 27.

Cavan, who was getting her PhD in environmental engineering at the University of New Hampshire when her son became sick, said she did not want to go back to UNH after losing Rett. “It’s not uncommon when you have these transitions in your lives. People wouldn’t know what to say. It’s not their fault, but they don’t necessarily know how to approach the situation.”

Now pregnant with the Dover couple’s second child, a girl who is due in March, Cavan said she feels more strongly than ever that she needs to be putting her energy into Rett’s Roost. Seed money for the organization comes from donations made to a Go Fund Me campaign while Rett was still alive. Fundraising and grants will be necessary to the future of the organization, she said, because the retreats are free to attending families.

The weekend retreats are “intimate,” she said, with no more than five or six families who can really come to know each other and share during the weekend. The first two were open to families of children who are transitioning out of treatment or in recovery, as funding is not yet available for a doctor to be available. The next retreat, she said, will be for families in bereavement over the loss of their child.

The retreats are geared for people who are interested in “holistic eating and alternative therapies,” as there is a significant emphasis on healthy foods, yoga and meditation. “We are looking for families who would want to be on that kind of retreat, or who are interested in exploring that lifestyle.”

But she said the retreats are also geared for pure fun. Toys abound, and the children are encouraged to play. Children’s book publisher Usborne has donated books, and each child is able to take a favorite home with them.

And there’s plenty of time for parents to talk. That was particularly important to Alison Paltoo of Brockton, Mass., who attended the first retreat last month. Her 7-year-old daughter Kailyn has been diagnosed with anaplastic ependymoma brain cancer. It’s a kind of cancer that will never leave her, said Alison. “It’s always there; it’s just waiting to come back and it will come back. It’s a sick waiting game, a constant ever-lasting fear.”

In debt from medical bills, her marriage on shaky grounds, Paltoo quit her job to take care of her daughter – a decision fraught with guilt. She said she desperately needed to talk with other parents.

“It’s almost all that defines me these days,” she said of her daughter’s cancer. “I find it hard to go to social events, and trust me, I’m not anti-social. We haven’t been able to go on any vacations with the kids, so this was something we could do together.”

She said the retreat “confirmed to me the way I’m living is OK, and I shouldn’t let other people make me feel bad.”

Among those she spoke with that weekend was Libby Giordano of Portsmouth, whose son Joey is in remission from brain cancer. She said at first, she was a bit wary of going to the retreat. “I thought it was going to be like an AA meeting. You know, ‘My name is Libby and my son had cancer.’ But it wasn’t like that. There were things to choose from and you could get involved or not get involved. The kids walked around in bare feet and had a sense of freedom. They played together, and they didn’t talk about cancer.”

Cavan was watching them that August weekend as well.

“Working with these kids, you couldn’t tell who the siblings were and who the kids with cancer were. The treatments are intense for these kids, the surgeries are intense. So just to watch them playing was so important. I feel like this is what I’m meant to be doing.”

For more information on Rett’s Roost, go to or visit them on Facebook.


Rett’s Roost has two upcoming fundraisers:

* On Sept. 27, there will be a Harvest Moon Gala – a farm-to-table dinner and auction at Shilo Farm Eco B&B on Beech Road in Eliot. Those attending will be able to make a final bid on auction items that are currently online at The tax deductible cost is $75 per person, and tickets are available for purchase at the website; or people can send checks to Rett’s Roost, 57 Forest St., Dover, NH 03820

* A “Spooktacular Children’s Festival” will be held at Stratham Hill Park in Stratham on Oct. 10. There will be train rides, performances by a magician and children’s musicians, face painting and Halloween-related activities. Admission is free with sponsors helping to defray costs and donate to the organization. For more information, go to

Rett’s Roost to help children, families fighting cancer

Deana and Jim Cavan of Dover lost their son, Everett (Rett), to a rare form of cancer. Monday, April 27 would have been Rett's first birthday and his parents, through the help of the Gofundme site used when he was sick, are starting a foundation in his memory. Photo by 

Deb Cram/Seacoastonline

DOVER – A local couple who recently lost their infant son to cancer announced plans to open a retreat center for families with children afflicted by the disease.

Deana and Jim Cavan have established Rett’s Roost to offer weekly and weekend retreats for free or by donation to families who have a child currently in treatment, in remission or who have lost a child to cancer. On-site programs will focus on healthy body and mind, such as yoga, meditation, arts and crafts, healthy meals and outdoor exploration.

Rett’s Roost is named for Everett, the Cavans’ baby boy who passed away in February after a five-month battle with rhabdoid tumors. Rett would have celebrated his first birthday on Monday, April 27. Throughout Rett’s illness, his parents shared their story in Seacoast Sunday as well as online through social media.

The Cavans’ vision is to provide families dealing with pediatric cancer “a community of loving kindness with supportive activities to ease their experience in a peaceful, natural atmosphere.” 

Deana and Jim, who will serve as executive director and board director respectively, were given more than $100,000 by friends, family and strangers who wanted to support the family during the months their son was in treatment. When their son died, they knew they wanted to use the funds to help support other families in similar situations.

But Deana wanted to do something more hands-on than simply creating a foundation or donating to cancer research.

“I wanted the people who donated to see where their money was going,” she said.

The idea for a retreat center came out of her realization that she was able to handle her son’s illness with unusual strength, and her desire to support others who needed it most.

“Throughout our ordeal, I was able to handle things,” Deana said. “Yet I would see other families in the hospital, and they just looked so sad and tired. It was heartbreaking.”

The Cavans have entered an essay contest to win a bed and breakfast in Lovell, Maine, but are also seeking opportunities to partner with a similar facility in New England. The ideal spot would be in a quiet location surrounded by nature but not far from major hospitals. It should also be large enough to host eight to 10 families at a time.

Rett’s Roost will be a nonprofit organization, started with funds from the Cavans’ GoFundMe campaign, but supported on an ongoing basis by donations, grants, corporate sponsorships and other development activities. There will be a staff of volunteers to operate the center, and provide medical support as well as program guidance. An advisory board has already been formed, and includes the Cavans’ medical team from the Dana Farber Cancer Institute. Elizabeth Mullen, MD, Rett’s primary oncologist, Neekesh Dharia, MD, fellow in pediatric hematology and oncology, and Sarah Brand, PhD, social psychologist, will all serve on the medical advisory board for Rett’s Roost.

“In a way, we were lucky,” said Deana, referring to Rett’s five-month battle. “Other kids who have cancer go through it for years. Ours was quick, and he didn’t suffer for long.”

But, she says, her son left them with an empowerment to help others. Prior to her son’s diagnosis in October 2014, Deana had been working toward her doctorate in environmental engineering at the University of New Hampshire. But, she says, right before Rett was born, she was having trouble envisioning her career. She took a leave of absence, as did Jim, while Rett was sick. It was during that time that she decided her life needed to change.

“I don’t have the desire to go back to my degree right now,” Deana said. “Rett gave us this opportunity to do something more meaningful. It’s as if he is telling me I need to try something new.”

For more information and to support Rett’s Roost, visit or follow them on Facebook.