Patient Stories

The Fessenden Family's Story

Pediatric Team Cares for the Whole Family

Riley Fessenden is a typical 7-year-old, obsessed with her new puppy, cheerleading, Taylor Swift, arts and crafts, and playing with her three siblings and many friends. But, she’s also a fighter, having endured 55 radiation treatments and nine rounds of multi-week chemotherapy.

Riley, of Beverly, was diagnosed in May 2013 with esthesioneuroblastoma, a rare form of cancer that started as a tumor in her nasal cavity and has spread to her brain. The treatments she’s received at the Dana-Farber Cancer Institute’s Jimmy Fund Clinic slowed the cancer growth, but in December 2013, Kamie and Todd Fessenden received the news that their daughter’s cancer was not curable.

"I had known elderly relatives on hospice, but I had no idea that children could receive hospice care while still receiving medical treatment," said Kamie. "I’m a planner, so as soon as they talked about Care Dimensions and Kaplan House, I called to get a tour and meet the team."

Care Dimensions’ pediatric team, led by pediatric palliative care specialist Tamara Vesel, M.D., has coordinated care with Riley’s specialists at Dana-Farber. "It’s great having a doctor and a nurse come to the house instead of having to drive all the way into Boston for everything," said Kamie.

"Though I can manage Riley’s care myself at the moment, I wanted the hospice team on board now so we can all get comfortable and trust each other, before there’s a crisis," explained Kamie. "The hospice team has been so helpful and lifted such a burden for us."

"Before, when I had to get Riley’s prescriptions filled, it was always a fight with insurance about what was covered and it was so stressful going to pick it up," said Kamie. "Now, our nurse Lisa Carey manages all the paperwork and ordering, and it gets delivered to our door."

Social Worker Angie O’Keefe has coordinated community resources and helps with other services. "It’s great to have a team to rely on. If I just mention something that we need or that I have to do, they jump right on it and coordinate it. I don’t even have to remember to call, because I know Angie will be calling to check in on me," said Kamie.

The visits that Riley most looks forward to are with Care Dimensions' child-life specialists, Kristen Brandolini and Kristin Kowalski. Weekly, they join Riley and her siblings Drew, 11, Meghan, 9, and Daniel, 3, in their playroom to build a special art craft or play a game and talk about their feelings. "It’s their time away from Mom and Dad, where they can talk about what makes them angry, scared or frustrated. It’s been so helpful for them to share and know that the others are feeling the same thing. Riley is the one with cancer, but it’s obviously affected our whole family," said Kamie.

"I’d tell other families not to be afraid of hospice. If it can help relieve some of the stress and provide support for your family, take advantage of it as soon as you can, so you can focus on what’s most important – your family," she explained. "We just want Riley to be a kid and experience all she can."