Focus 25
ONCOLOGY/MEDICAL IMAGING/PAEDIATRICS
Start the conversation because
moments matter By Helen Reilly
F
or kids escaping school routine, the summer offers endless possibilities of things to do, people to see and places to go. For children with life-limiting illness, the expectations of that same day are no less exciting, but they’re different. Emily’s House is Toronto’s first children’s hospice and only the sixth one in Canada offering hospice palliative care to children who will not recover from illness. The hospice officially opened in July 2013 with provincial funding for six beds and space to support care and respite for up to 10 children. Located in Toronto’s east end, the hospice offers specialized care in addition to support for children and adults in the community through the Phillip Aziz Centre. Unlike her classmates, topping nineyear-old Grace’s list of things to do during her winter break was a return visit to Emily’s House. As Captain of The Healing Cycle Ride’s Kids4Kids team, she and fellow youth cyclists visited the construction zone which was to be Emily’s House a year-and-a-half earlier to donate a cheque representing funds raised during the ride. She was eager to see the finished project. While many of us may avoid talking about the subject of death with our children, let alone each other, the topic is not actually a taboo one for many young people; it’s not even unique since many schools and athletic teams have rallied around children and families whose lives have been impacted by childhood illnesses. Perhaps the best proof that children readily embrace the topic of conversation is that Emily’s House has a Youth Advisory Council – kids supporting other kids with life-limiting illness. There’s a poignant les-
son in that children understand and embrace the possibility that while there may be no way to prevent death, there is an opportunity to improve quality of life for people with life-limiting illness. The day Grace visited was Rapunzel Day! A young client was proud to show off her golden locks fashioned from gold ribbon strands lovingly attached to a hairband with the assistance of a therapist. The colourful space and custom furniture designed to accommodate wheelal devices is chairs and medical drenched with natural light streaming in through the treess and the wall of windows no doubt incorporated in architectural design for this very reason. The hospice nd offers comfort and care for children and lti-discifor families. A multi-disciplinary team of medical professionals and therapists, chaplains and volunteers offers medical, spiritual, emotional and practical care to families through music and play therapy as well as bereavement support. “The Healing Cycle Foundation recognizes the essential need to support hospice palliative care programs throughout Ontario. We are working year-round to raise awareness and funds to support programming so that families have access to palliative care when they need it,” says Heather Campbell, president and CEO, The Healing Cycle Foundation.
The Healing Cycle Foundation is a volunteer-driven foundation raising funds and awareness for hospice palliative care in Ontario. This year marks the foundation’s 10th anniversary and a milestone for the organization, as it surpasses $2 million raised for hospice palliative care programs in Ontario Riders range in age from infancy (in ride-along accessories) to 75 years of age and come from all walks of life. They come from the bed as patients to the bedside, as physicia physicians, therapists, pat nurses, patients and fammem ily members to cycle 10K, 25K, 50, 75K and 100K bi bike routes in su support of palli liative care proggrams throughou Ontario. out The Foundation tion’s goal is to suppo hospice palsupport c liative care programs compas that compassionately provide quality endend-of-life support for patients and their families through hospice outreach services as well as fundraising consultation for hospices to encourage them to maximize their own fundraising capacity. Hospices entering teams in the annual ride retain nearly all funds raised by their hospice team. In addition, they have the opportunity to qualify for grants up to $10,000. To date, grants have been used to fund needs such as equipment, staffing, a food program, landscaping, bereavement programs and art programs. Through its support of hospices, the
Supporting the development of children at home Continued from page 14 I feel that you get the best gains when you are proactive vs. reactive,” she says. For the past five years, Rashmi has worked closely with Kusyati to understand Gabbie’s needs, help the family understand Ontario’s ‘complex health care system, and connect the family to a wide range of community resources and services. Rashmi has wrapped the circle of care around Gabbie and her family. She has arranged for the necessary supports for Gabbie to live safely at home. Rashmi anticipated the family’s needs in caring for Gabbie. She was able to source the necessary medical equipment through Easter Seals and the provincial assistive devices program that the family needed, such as a walker (Gabbie is not able to stand on her own), a bath chair, stroller, as well as lifts for the family van and the home entrance. Rashmi also arranged for personal support workers to help with Gabbie’s bathing, dressing and eating as she is unable to eat, bathe, or toilet herself. Taking care of a child with high care needs is not easy. To manage Gabbie’s
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care Kusyati works the night shift, so that she is able to care for Gabbie during the day. Gabbie’s older sister also helps to care for her sister. Rashmi is very in tune with this family’s needs – connecting the family with resources and funding locally and provincially. “I connected Kusyati to resources in the community. I was able to get her enhanced respite care through the Ministry of Community and Social Services,” explains Rashmi. Kusyati explains, “I’m very pleased with Rashmi. I tell her my problems and issues and she is a good listener. I need someone to talk to and she is the perfect person to talk to. She works to pull all the resources together. I had no supports before.” Rashmi has been involved in several school case conferences with the family, service providers and school staff to ensure that Gabbie would get the help she needed to attend school. Today, Gabbie attends school in a special needs class, getting to school in a specially-equipped wheelchair bus, which picks her up in the morning and
returns her home at the end of the day. While in school, Gabbie is assisted by a specialized Educational Assistant. She also receives occupational therapy to improve her balance and develop fine motor skills, and physiotherapy to help her with movement and mobility. Gabbie’s care is not easy. She requires care 24/7. It takes 45 minutes to one hour just to feed her. She has daily seizures and is exhausted afterwards. Her condition is alleviated by a number of medications and her family’s love, devotion and care. Despite her health condition, she is a happy child. Although she cannot talk, she communicates through body language and sounds. She loves to be hugged, tickled, sung and spoken to. Gabbie continues to make progress and with the care and services of the Mississauga Halton CCAC she is able to remain at home, where she is nurH tured and loved. ■ Bobbi Greenberg works in communications at the Mississauga Halton CCAC.
foundation’s long range goal is to improve access to hospice palliative care. Currently, only three in 10 Canadians have access to timely palliative care when they need it. “Although, hospices often operate on shoe-string budgets, the value of the hospice palliative care experience for patients and their families is priceless,” says Heather Campbell, President and CEO, The Healing Cycle Foundation. “It’s not an easy task to capture what we do, why we do it and who we do it for, but we ultimately agreed that in honour of the 10th annual ride, the best words to capture our work were “Making Moments Matter,” says Heather with a sense of satisfaction that reveals her own dedication as the organization’s full-time volunteer President and CEO. In 2013, more than 500 riders participated to support hospices, loved ones and their own personal palliative care journeys raising over $300,000. “This year’s ride will be bigger and better because we are celebrating 10 years and marking the milestone for our second million dollars for palliative care in Ontario,” she beams. The petite mother of three children does nothing in a small way. For the first time in 10 years, having recruited a highly qualified crew of 70 volunteers, she will participate in the ride for the very first time. Her goal is to cross the finish line in time to host the finish line celebration featuring live music, entertainment and prizes. While everyone’s journey is different, the destination remains the same for each and every one of us. We each have our own reasons for riding and for supporting the availability of palliative care services in local hospices. Regardless of our age, it is only through the recognition that quality of life is as important as quantity of life that we are “Making Moments Matter.” To learn more about The Healing Cycle Foundation, donate, volunteer or register an individual or team, visit thehealingcyH clefoundation.ca ■ Helen Reilly is a volunteer at The Healing Cycle Foundation.
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