When Wendy Avery’s 15-year-old son, Nick, died in 2006, less than a year after receiving a diagnosis of acute myeloid leukemia, there were mornings when she didn’t want to get out of bed. She had quit her job to spend much of the year by her son’s side at St. Jude Children’s Research Hospital in Memphis. Now, back home in Canfield, Ohio, she felt lost.
“You go home and think, ‘No-one understands,’ ” she recalls. “It’s a whole new world to come into this cancer world when you’ve had healthy kids.”
In Avery’s case her sister, who had also lost a child to illness, became a lifeline, calling or emailing daily. But most parents who lose a child enter a realm that is starkly different from any place they ever expected to inhabit, a path upon which few others can truly join them.
“They don’t feel understood. They feel lonely,” said Justin Baker, chief of the Division of Quality of Life and Palliative Care at St. Jude. “It can feel like almost complete and total isolation. People who’ve been their friends don’t understand what they’ve been through. Even family and friends who want to help often don’t know what to say.”
Recognizing this, the hospital, which treats children with cancer, runs a program for parents of children whose cases are terminal, matching them with other parents whose children didn’t survive.
The program, which began in 2014, currently has 21 parents who act as mentors, typically to more than one family at a time. Since the families come from all over the country, the mentors may never meet the mentees in person. But they stay connected by phone, text and email, reminding them that there is someone else available to lean on who has felt the same unfathomable grief.
While many hospitals, including St. Jude, match parents of newly-diagnosed patients with parents whose children have been cured, this model is less traditional.
Wendy Avery (left) and other parent mentors at St. Jude Children’s Research Hospital in Memphis (Peter Barta)
“For a long time, discussing this with bereaved parents has been frowned upon because it was seen as potentially harmful,” Baker said. But he has found the opposite to be true.
Acting as mentors can help parents “find once again the meaning of their children’s life and the purpose of their death,” he said. “It never makes the death okay, but it gives them another source of strength.”
It may also help them in the long term, he said, adding that “We know that bereaved parents have worse mental health outcomes, worse physical outcomes…they miss many more days of work.”
Mentors undergo five days of extensive training, and they are vigilantly screened. They cannot join the program until a couple years after the death of their child. Red flags for screeners can include “if they’re still too hung up on their own grief and bereavement and not going to be able to help with newly-bereaved parents,” Baker said.
Avery became one of the program’s first mentors, after having already joined a family advisory council at the hospital a few years earlier. When they first asked her to join it, she hesitated.
“I had to really think about it,” she said. “It meant me going back to the scene of the crime. Even in the main picture of the hospital you can see the window of the ICU room where he died. I had to go back to that and I had to go back there alone.”
After agreeing to join the council, she learned a lot about the resources that were — and weren’t — out there for parents like her. One hospital connected parents of children who’d been cured to families of current patients, but when Avery asked what happened if a mentee learned his or her child wasn’t going to survive, the answer was jarring.
“They said, ‘We have to drop the family if they get bad news, because we don’t have the support to give them,’ ” she recalled. “We said, ‘We can’t do that.’ ”
Since the program began, 89 families have been matched with bereaved parent mentors, who work with them for about 15 months, which can be extended for an additional six months to a year if needed. All work on a volunteer basis, and former mentees sometimes become mentors themselves.
After Wendy Avery’s son, Nick, 15, died of leukemia, she became a mentor to other bereaved parents. (Steve Avery)
Lisa Trumbo, whose 4-year-old son, Trevor, died in 2014, 14 months after being diagnosed with a brain tumor, started out as a mentee. When the hospital later contacted her to see if she wanted to become a mentor, she initially wondered if she was up to it.
“My first instinct was, I really don’t feel like I can do that, I don’t have anything to offer, I’m not a counselor, I don’t have a way with words.” But then she thought about what her own mentor had done for her.
“She wasn’t a professional guidance counselor,” Trumbo said. In fact, the two never met face to face; their interactions consisted largely of the mentor leaving phone messages. But it helped. “I really found comfort to know that…somebody else was checking on me that knew what I’d been going through.”
Now, as a mentor herself, “I do get kind of nervous. But I know that I’m not there to give them answers or make things better, but just to be a listener to somebody who might need to vent,” Trumbo said.
It’s not always easy. Talking to a mother whose son is currently in hospice care “does bring up a lot of emotions of what I went through,” Trumbo said. But like other mentors, she sees her participation as a way of honoring Trevor, a little boy she recalls as “the happiest kid.”
“It brings purpose to my son’s life,” she said. She paused as a sob welled up. “To be able to share my story when she asks, to feel that he didn’t just come here to live and die.”
Avery agrees. Her son Nick was known among his peers as “a gatherer — he would notice the kind of kids who were outcast and normally wouldn’t be brought into a group, and bring them in.” Now, while mentoring, “I really feel him so close to me, cheering me on and walking beside me,” she said.
“It makes me stronger and it makes the other person stronger, because…the worst thing that could possibly happen to a parent, we’re going through it together.”