When Janna Cheng’s husband Steve was diagnosed with a terminal illness in March 2007, it was devastating for the entire family but particularly their daughter Jenny, who was only 12 at the time.
“Jenny was always close to her father, but after the diagnosis things changed,” says Cheng, whose husband was diagnosed with Amyotrophic Lateral Sclerosis – also known as ALS or Lou Gehrig’s Disease. “Steve’s disease progressed aggressively, and Jenny struggled with this. Sometimes it seemed like she was avoiding him.”
ALS is a progressive, usually fatal neurodegenerative disease that causes degeneration of the nerve cells in the brain and spinal cord. As the disease progresses, the brain loses the ability to control muscles and patients may become totally paralyzed.
To help Jenny cope with her father’s illness, Janna was referred to Mount Sinai Hospital’s Max and Beatrice Wolfe Centre for Children’s Grief and Palliative Care. The referral was made by the ALS Clinic at Sunnybrook Health Sciences Centre, where Steve was being treated.
“Our society is full of kids grieving in lonely silence when a loved one is dying or has died,” says Lysa Toye, Counsellor and Expressive Arts Therapist at the Max and Beatrice Wolfe Centre. “The lifelong impact is profound.”
The Centre provides support for children and youth, as well as their families, before and after the death of a loved one. The counsellors help educate and support children through stories, play, music, movement and visual expressive arts.
Dr. Larry Librach, Director of Mount Sinai’s Temmy Latner Centre for Palliative Care, founded the Centre in 2006 after meeting with representatives from The Max and Beatrice Wolfe Family Foundation, who wanted to help provide professional support for children dealing with death or dying and an opportunity for families to grieve together.
The Centre’s interdisciplinary team of four part-time counsellors have backgrounds in nursing, child-life training, social work, expressive arts therapy, paediatric medicine and spiritual care.
“There is a strong sense of social justice that motivates the four of us,” says Toye, who has been at the Centre for two years. “We want to make our services accessible for everyone, and we struggle every day with the fact that we have a waitlist.”
In 2008, the Centre cared for 318 children from 160 families, all struggling to cope with a family member’s death caused by terminal illness, an accident, homicide or suicide. The children came from different ethnic backgrounds and neighbourhoods across the Greater Toronto Area. Clients are referred to the Centre by word-of-mouth, other palliative care units, social workers, mental health-care facilities for children, and Toronto Police Victim Services.
The Centre also sees a small number of children who themselves have been diagnosed with a terminal illness and are receiving palliative care in collaboration with doctors at the Temmy Latner Centre. This support enables families to care confidently and safely for dying children at home.
There is no charge for the Centre’s programs, which are unique in Canada. Along with individual education and support, the Centre provides opportunities to bring children and families together into group settings. Parent information nights give parents the chance to talk to the counsellors and each other, share strategies and provide support. During these sessions, the staff members run group activities for the children.
In January 2009, the Centre held an overnight camp for 30 children and recently received a prestigious 10-year grant from the Moyer Foundation in the United States to host an annual summer grief camp – Camp Erin – for 50 children. “These camps complement the one-on-one care children receive at the Centre, providing an opportunity for the children to meet new friends and learn that they are not the only ones dealing with pain and grief,” Toye says. “To grieve well is healthy,” she adds. “All of the Centre’s events provide meaningful opportunities to recognize death.”
Janna’s daughter Jenny felt isolated in her grief and did not talk about her feelings with her parents. But counsellors work hard to be flexible and provide counselling at the Centre, in the home or by phone. Toye spent more than nine months with Jenny before Steve’s death and helped pull the Cheng family together.
“Lysa was always straightforward about my husband’s disease and prepared Jenny to face her father’s death,” says Cheng. “She visited Jenny’s class to discuss death and grieving, but at Jenny’s request, did not mention which student was experiencing this situation. Because of Lysa, Jenny was brave enough to tell her classmates about her father’s illness.”
In December 2008, Steve died of ALS. More than 50 of Jenny’s classmates and teachers came to the church service to support their friend. Even today, Toye meets occasionally with Jenny to provide continuing support. “I feel better now than I did when my Dad was dying,” says Jenny, who turns 15 in August. “It was helpful to talk to Lysa because there weren’t a lot of people that I wanted to talk to. I’ve had time to get used to being without him.”
Janna agrees the Centre’s support has made a difference in her family’s progress since Steve’s death. “The support from the Centre for my family was amazing,” says Cheng. “I am very thankful and lucky to have had Lysa’s help and guidance.”