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Bringing care closer to home Following through… Located in six community hospitals across Ontario, POGO’s pediatric oncology satellite centres provide many aspects of children’s ongoing cancer care close to their home, while helping to reduce the workload at Ontario’s five tertiary childhood cancer centres. The centres follow well-researched POGO standards and guidelines to ensure the best possible care for children across Ontario. Over the past year, the centres offered care for almost 300 children and their families. Christopher is an engaging five-year-old with big blue eyes and an elfin grin. He was just a toddler when he was admitted to Toronto’s Hospital for Sick Children (HSC) with a type of cancer known as Langerhans cell histiocytosis. His mother, Tracy, recalls months of driving back and forth between Kitchener and Toronto. “I have nothing but praise for the HSC staff,” she says, “But those early days were miserable. Christopher couldn’t eat or drink before his treatment and we had to get up before dawn to be sure that we’d arrive in time for our appointment.” It was a relief when Christopher was finally able to have his treatment transferred to the POGO satellite clinic at the Grand River Hospital Patti Bambury, RN, Satellite Coordinator at Grand River Hospital (left), with Christopher and his mother, Tracy. She knows how much it means for families to have their child’s care provided close to home. in Kitchener. “The care is excellent,” notes Tracy, “and we’re only ten minutes away from the hospital.” Lesley Collins, POGO’s Manager of the Satellite and AfterCare Programs notes: “Everyone has worked very hard to ensure that the Satellites provide the same quality of care as that of the tertiary centres.” The child’s care is still coordinated through the tertiary centre where they were first diagnosed and treated, but it is the Satellites that carry out the ongoing program of care. The family returns to the tertiary centre from time to time, for follow up, or if there are major interventions that are more appropriately handled at the tertiary center. Lesley stresses that, “The collaboration and communication between the tertiary and satellite centres has been critical to their success.” A sixth satellite was opened this past year, at the Rouge Valley Health System, Centenary Health Centre and POGO is continuing to look for ways to provide components of care in remote places. It is also developing processes for local health care providers who want to provide more knowledgeable care for children with terminal cancer, within their home community. It’s easy to assume that once a child’s cancer is cured they will go on to live a completely normal life. But for as many as half of all childhood cancer survivors, the toll of the disease and treatment on their young, developing body shows up in later years. Problems may include cardiac complications, fertility issues, neuro-cognitive impairments (such as learning disabilities) and secondary cancers. There is evidence that early identification and treatment of potential complications can improve outcomes. Using well-researched guidelines developed by POGO, seven AfterCare Clinics offer services to monitor and promote the well being of these individuals. The Clinics also provide a vitally important avenue to collect data for POGO’s Research Unit; data that may lead to treatment changes that will benefit future generations. With funding from the Ministry of Health and Long-Term Care, and POGO’s support, two new AfterCare Clinics were opened this past year. Together, the seven Clinics currently serve more than a thousand children and close to nine-hundred adult survivors, across Ontario. Lisa Lamoureux was only two months old when she was diagnosed with neuroblastoma, the most common cancerous tumor in infants and young children. She had one tumour in her neck and another in her abdomen. Fortunately she responded well to treatment. Now 20, she’s in her third year of criminology at Carlton University, with hopes of becoming a lawyer. When she turned 18, she transferred from the AfterCare Clinic at the Children’s Hospital of Eastern Ontario (CHEO) to the Adult Late Effects Clinic at The Ottawa Hospital Regional Cancer Centre (TOHRRC). So far, Lisa has had no lasting effects from her cancer, but she’s aware of the risks and knows that regular checks are important. “Last year, I was having some stomach problems,” she recalls, “I worried that it Even with her heavy course load, Lisa Lamoureaux always takes time for her annual check-up at POGO’s Adult Late Effects Clinic. “It’s kind of like a safety net,” she says. might be a recurrence of my cancer. The staff checked me out and reassured me that it was not a tumour. They understood why I was worried because they knew my history. It’s kind of like a safety net. I drop in for my echocardiogram and a couple of other tests every twelve months and then I’m good to go for another year!” Dr. Karen Mandel is a Pediatric Haematologist/Oncologist, and Director of POGO’s AfterCare Program in Ottawa. Twice monthly, she runs the Adult Late Effects Clinic at TOHRCC. “As we learn more about the long-term effects of some cancer treatments,” observes Dr. Mandel, “we’re making adjustments to the acute treatment. For example, after seeing, through the Late Effects Clinics, the outcome of those treatments on children’s ability to learn, we have modified or eliminated radiation treatments to the head in children with leukemia. Clearly, the AfterCare program is important to today’s childhood cancer survivors because it provides expert medical knowledge of their special needs. It is also a vital source of information that will benefit future generations.” 2004-2005 HIGHLIGHTS • This year’s fundraising Gala attracted 650 guests and raised over $160,000 for the POGO Pediatric Oncology Financial Assistance Program • POGO’s Financial Assistance Program provided support to 1,100 families with children in cancer treatment • POGO helped several Central-American countries establish their own databases, contributing to local planning and improved care 06
Helping navigate the maze Giving support and encouragement The devastation and disruption of a cancer diagnosis is daunting but the bewildering complexity of the health care system can place even more stress on parents. POGO supports eight pediatric Interlink Community Cancer Nurses who follow the progress of young patients and their families while in hospital and after discharge. These knowledgeable professionals coordinate each phase of the lengthy course of cancer care by linking hospital and community services. Over the past year, almost 700 children with cancer and their families have benefited from the support and coordination of services provided by this dedicated team of nurses. Marilyn Cassidy is part of the Interlink team, and a member of POGO’s Board of Directors. She works at CHEO. “A large part of my role is education,” she says, “For example, I frequently meet families in their home, often with their Community Care Access Centre (CCAC) worker. I will bring them information about the child’s treatment needs and go over the things they need to do and watch for.” She explains that she helps to build a support network for the family that is based on her understanding of their needs, at home, work and school. The Porter family was grateful for the support they received from Interlink when their five-year-old son, Curtis was diagnosed with neuroblastoma. After five grueling rounds of chemotherapy, the malignant tumour growing on his left adrenal gland has shrunk by fifty-percent. Next comes surgery to remove the rest of the tumour, then another round of chemotherapy and, finally, a stem cell transplant. 2004-2005 HIGHLIGHTS • Over the past year, POGO’s Satellite Centres cared for almost 300 children and their families 07 • Two new AfterCare Clinics were opened in London and Ottawa, giving childhood cancer survivors better access to professionals who have expertise in the late effects of pediatric cancer and its treatments Interlink nurse, Marilyn Cassidy, has become a familiar face for Christopher and his family. “I feel that I can talk to her,” says Christopher’s mother, Julie, “if we had to do all these things on our own, I wouldn’t know where to start.” In the weeks since Curtis’ devastating diagnosis, Marilyn Cassidy has become a familiar face for the family. “She came to our home and went over the support programs that were available to us,” says his mother, Julie, “We see her at least once a week and I feel that I can talk to her - especially if things are not going well with Curtis. She has already organized a place for us to stay in Toronto when Curtis goes to Sick Kids for his surgery. If we had to do all of these things on our own, I wouldn’t know where to start.” Over the past year, this Interlink group of nurses has come under the POGO umbrella, helping to ensure a more secure and stable province-wide service for the families that they serve. POGO has also just hired an Interlink Coordinator to function as the interface between the nurses and POGO, and to support them in their work. • An external expert review panel endorsed the POGO Research Unit’s scientific accomplishments over the past five years, and supported the proposed future direction to undertake populationbased research studies When it’s time to consider their future, to make choices about post-secondary education or a job, childhood cancer survivors are often faced with more challenges. Long stretches of hospitalization may have seriously disrupted their schooling, and the cancer treatment itself may have left them with long-term health issues or disabilities. POGO’s Successful Academic & Vocational Transition Initiative (SAVTI) was created to support survivors to make a successful, personally satisfying transition from high school to post-secondary learning or employment. The program utilizes information from a neuropsychological assessment of the individual, while taking into account their school experience, medical history and personal dreams and wishes. Barbara Dyce recently joined the POGO team as the SAVTI Coordinator. She works with adolescents to help them make realistic decisions about what they want to do and links them with the supports that are available to help them. “Often survivors may need accommodations and support while attending school or college,” says Barbara, “and accessing resources can make the world of difference.” She gives the example of survivors who have neuro-cognitive deficits and who may need extra time to study and complete their assignments. Barbara connects them with the student services department so that they have access to the supports which will assist them in their studies. SAVTI is a prototype for a unique collaboration between different sectors of government, including health, education, children and youth services, and the private sector. POGO is working closely with several government ministries to ensure that the program has ongoing core funding to support its success and expansion, so that it can serve children across the province. 2004-2005 HIGHLIGHTS • Opened a new Satellite Clinic at Rouge Valley Health System, Centenary Health Centre (RVC) • POGO has reached the half-way point in its $9 million fundraising campaign Nineteen-year-old Christopher Richie can attest to the value of the SAVTI program. He has almost no memory of the leukemia he had when an infant, nor its recurrence when he turned five. Months of care and treatment at the HSC finally cured him, but didn’t leave him entirely unscathed. “My chemotherapy treatments slowed down my growth and development and I had to take a growth hormone for a couple of years while I was in high school,” Christopher recalls. Later, he began to have difficulty with his coordination. “My brain was working faster than my ability to write,” he says. Neurological tests showed that his problem was directly connected to the effect that his earlier chemotherapy had on his brain. In his last year of high school, Christopher was put in touch with Robyn Lange, Barbara Dyce’s predecessor at SAVTI. With her help, and his own determination, he has learned how to deal with his mild disability and pursue his dream of attending university. He is now in his second year at Carlton University and considering a career in teaching or the media. “The (SAVTI) program gave me a chance,” he says. “I’m a little different from other kids and it gave me a better understanding of how to do what I wanted. I’ve learned that there are always people to help - you just have to ask.” Working at his summer construction job, Christopher Richie, a childhood cancer survivor, was looking forward to getting back to university in the fall. • POGO was designated a ‘45.1 entity’ under Ontario’s Personal Health Information Protection Act 08
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