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Rett’s Roost to help children, families fighting cancer

by: Christian Seeber

https://www.seacoastonline.com/story/news/local/portsmouth-herald/2015/04/26/rett-s-roost-to-help/34691433007/

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 rettsroost.org or follow them on Facebook.