Rett’s Roost honors memory of an ‘energetic force’
by: Christian Seeber
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 www.rettsroost.org or visit them on Facebook.
WANT TO HELP?
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 www.rettsroost.org. 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 www.rettsroost.org.
