After dinner a few weeks ago, , an eighth-grader, redhead, and expert Irish step-dancer, updated her friends on her life. Her mother, Kerry, was getting her regular three-month scans to make sure her cancer had not come back.
“We were hopeful that [the tests] were going to be all clear,” she said.
Her friends might not have understood the specifics of the tests. But they understood her worry.
All of them have parents or grandparents who are sick with cancer. They met on 10 Friday afternoons over the past five months, a rare support group for kids whose parents or grandparents have cancer, and one of the first of its kind in New England.
Support groups for adults with cancer are prevalent. And some hospitals offer ill parents counseling on how to help their kids. There are bereavement groups for kids whose family members have died. But sick parents have little emotional support for their children other than private counseling, even though a 2010 study estimated 562,000 children are living with a parent in the early phases of cancer treatment and recovery.
Julia, 14, was wary about starting the Kid Support Program at Cancer Support Community in Norwell in January. “For the past year and a half, my life has pretty much revolved around cancer,” she said. “And I wasn’t sure I’d want an extra cancer activity.”
She was relieved to find that it wasn’t all about cancer. The kids drew and meditated and did yoga. They ate before the activities began and talked after they ended.
Soon she realized that these strangers understood more about her life — at least the cancer part — than friends she’d known much longer.
“It’s hard to relate because they don’t know what’s going on exactly,” she said. “I know that when I come here, everyone is going through the same thing. Whether we talk about it or not, there’s that sense of security and . . .”
“Understanding,” said Justy Carney, 13. His grandmother has lung cancer and is getting sicker. Justy has pulled his baseball cap, which says CELLY — a celebration, especially in hockey, his passion — backward over his dark hair.
“Exactly,” Julia said. “Understanding.”
Research has been mixed on how parental cancer affects children’s development. Some studies have found these children are more likely to be anxious or depressed; other research has suggested that they may not suffer long-term effects.
To be a child whose parent, or grandparent, has cancer is to suddenly face adult worries. Grownups who once seemed invincible are vulnerable. They may spend a lot of time in the hospital, or sleeping, and be too sick to take care of their kids. Regular life — from meals to soccer practice to vacations — may be disrupted.
Kids know their parents are sick, but often don’t want to worry them more by talking about their own anxieties, said Linda Maerov, an oncology social worker who coordinates the program.
‘If the parents are worrying about an upcoming scan, the kids are right there. They’re worrying about the upcoming scan.’ --Linda Maerov, Oncology social worker
“If the parents are worrying about an upcoming scan, the kids are right there,” she said. “They’re worrying about the upcoming scan.”
Although the first group officially ended — the next group starts in the fall — the members have grown so close that the program will host reunions and the families themselves plan to continue gathering socially. Seven kids between the ages of 9 and 16 joined the program, which is free.
Grants from several foundations and businesses paid for the program, which the staff hopes to expand in the future. The Cancer Support Community — Massachusetts South Shore is an affiliate of the national group, and a division of the Norwell Visiting Nurse Association.
At one recent group meeting, Laura Tryon Jennings, an artist and expressive arts facilitator, led the kids in an exercise to draw with oil pastels, to express how they felt about cancer. “Sad, angry, scared, worried, and confused,” said one boy.
Tryon Jennings also worked with the kids at the first session and noticed how much more open they were a few months later. “I really did see a huge progression. Huge,” she said. “It was like leaps and bounds.”
Isolation is one of the most difficult parts of being a kid with a relative who’s seriously ill. The kids in the support group know what it feels like to lie awake at night, a bad feeling in their stomach, worrying what a parent’s latest medical tests will show. They know how cancer can take over the whole house, even if it’s not in their body.
At the first session, Justy was cautious, the last person in the room to speak. He didn’t reveal much. But he realized the other kids were talking — cautiously — about their feelings. Gradually, over the weeks, he became more comfortable talking about his own.
“I think opening up has helped some of the stress,” he said.
Julia’s mother was diagnosed in 2013 with a rare form of digestive tract cancer. Surgeons removed the cancer in a major operation involving her pancreas, bile ducts, and other organs. The next day, she hemorrhaged and the surgeons went back in. She spent the next five months in bed and then started chemo.
She has been regaining her strength but will need to get regular scans and blood tests for the rest of her life. The reminder of cancer will always be there.
“We’re never going to be the people that we were before we had this cancer,” said Julia’s mom, Kerry Griffin, the adult education coordinator at the Carolina Hill shelter for homeless families. “So it’s creating what the new normal is.”
Her most recent scans looked good. Her bloodwork was inconclusive, so her doctors will do more tests soon.
Support groups for children whose parents are ill may be rare because they can be difficult to fill. When a parent has cancer, families may already be struggling to keep up with extra appointments, said Dr. Paula Rauch, director of the Marjorie E. Korff Parenting At a Challenging Time Program at Massachusetts General Hospital Cancer Center. They may find another scheduling meeting burdensome. In addition, some children are reluctant to attend support groups.
“In many locations, the experience has been that it is not easy to set up and sustain groups while a parent is ill,” she said.
Rauch’s program works with parents, talking with them in the program’s office, while they’re getting chemotherapy or by phone, answering questions and helping them talk to their children.
“We believe that the majority of communication to support a child’s resilience comes best from parents themselves,” she said.
But, she said, programs like the Norwell group benefit children whose parents are ill by offering them more choices of support.
Tim Cummings, program director of the Norwell Cancer Support Community, is a testament that life continues after cancer. June 12 is the 31st anniversary of his diagnosis with testicular cancer. He was successfully treated and decided to turn his social work career toward oncology. Many of his clients know his history.
While the kids gather, Cummings leads a discussion with their parents. Sometimes, the parents, mostly mothers, emerge with red eyes. But sometimes, their children are mystified by the sounds they hear coming from the lounge.
“That’s one of the most common questions,” one of the mothers said one week. “What were you guys laughing about?”
One of the mothers, who asked not to be identified, was 10 when one of her parents got cancer. No one talked to her about it, so when she was diagnosed with breast cancer when her daughter was 10, she figured she wouldn’t say much to her own child.
But she learned times had changed. Dana-Farber Cancer Institute gave her a binder on “How to talk to your children.”
“I’m like, I can’t read this thing and say these things. Are you kidding me?” she said. “I needed somebody else to say these things, and somebody that I trusted.”
At the end of the final group meeting, the kids wrote letters to their parents.
“One thing that I want you to know is that I love you and you are the strongest woman I know and you inspire me,” Julia wrote to her mother. “I hope that you get everything you wish for and are cancer-free forever.”Kathleen Burge can be reached at firstname.lastname@example.org. Follow her on Twitter @KathleenBurge.