Childhood Cancer is a Lifelong Journey
Appearing in Metroland publications, September 17, 2024
While more kids are being diagnosed with cancer, more are surviving. Ontario’s childhood cancer survival rate is now 85 per cent — up from about 70 per cent in the mid-1980s. And while surviving cancer is certainly the goal, the impacts of childhood cancer can last a lifetime.
Richard Lautens Toronto Star file photo
By Lauren Ettin and Dr. David Hodgson
Lauren Ettin is the chief executive officer of the Pediatric Oncology Group of Ontario. Dr. David Hodgson is the medical director and chair in childhood cancer control for the Pediatric Oncology Group of Ontario, a radiation oncologist and clinician scientist at the Princess Margaret Cancer Centre, and associate staff at The Hospital for Sick Children.
Life for the Pugliese family changed forever when six-year-old Giacomo was diagnosed with acute lymphoblastic leukemia. For three years, they made countless trips to McMaster Children’s Hospital, watching their once-energetic little boy endure the challenges of cancer treatment, with interruptions to school and play dates.
Now 17, Giacomo’s treatment is behind him, but he is monitored regularly at the Pediatric Oncology Group of Ontario (POGO) AfterCare Clinic at McMaster Children’s Hospital for secondary cancers and heart issues — risks from his cancer and treatment. The clinic staff also emphasize the importance of a healthy, active lifestyle. His family is reassured that Giacomo will receive this crucial care for the rest of his life.
POGO’s network of clinics across Ontario play a vital role in the ongoing care of childhood cancer survivors, becoming an essential part of their lifelong health journey.
September is Childhood Cancer Awareness Month, a time to spotlight stories like Giacomo’s, which are increasingly common in Ontario.
While more kids are being diagnosed with cancer, more are surviving. Ontario’s childhood cancer survival rate is now 85 per cent — up from about 70 per cent in the mid-1980s. This is thanks to decades of clinical innovation, improvements in diagnostics and treatments, and approaches to addressing some of the related side effects.
While surviving cancer is certainly the goal, it is not where the journey ends. The impacts of childhood cancer can last a lifetime.
Childhood cancers are distinct from adult cancers in significant ways. For one thing, these cancers don’t result from lifestyle or diet. They come suddenly — and some are more likely to strike at a specific age. Typically, childhood cancers require intensive treatments, at major teaching hospitals, with highly specialized protocols. Consequently, care teams may be larger and include parents and caregivers as key decision makers.
A childhood cancer diagnosis impacts the whole family. One parent is often forced to give up work to manage the daily practicalities of their child’s care. Often, extensive travel or temporary relocation is required, uprooting families for months or sometimes years. This disruption reverberates, impacting extended family members, friends, teachers, classmates, work colleagues and communities.
Childhood cancers strike during a critical phase of development, when children and adolescents are marking key physical, mental and social milestones. As a result, two of every three survivors are at increased risk of at least one long-term side effect resulting from their cancer or its treatment, including heart disease, second cancers and cognitive challenges.
To address the unique complexities, ripple effects and long-term impacts of childhood cancer, POGO and its partners have built a system that provides wraparound care and support for children and families at every stage of the journey. Considered among the best in the world, Ontario’s childhood cancer system goes beyond diagnosis and treatment. Families are paired with nurses who help navigate the transition from hospital to home, and they can also access mental health services, financial supports, and programs that help survivors thrive into adulthood.
During Childhood Cancer Awareness Month, it’s important to recognize the tremendous progress made in childhood cancer care. But there is more we can do to ensure kids not only survive, but thrive.
It is vital that children with cancer and their families have access to the best evidence-based treatments and supports, closer to home. This requires strong, ongoing collaboration between care teams, hospitals, nonprofits, government, regulatory bodies, industry and others.
Over the past decade, we have also seen an increasing need for mental health services, a need that is urgently felt among the many who are impacted by a childhood cancer diagnosis. These priorities and others will be key components of Ontario’s Childhood Cancer Care Plan 2024-2029, a road map developed by POGO and its partners to be published later this month.
Ontario must continue strengthening its world-class childhood cancer system so that survivors like Giacomo can count on having the treatments, resources and supports they need today — and for life.
POGO CEO Lauren Ettin Makes the Rounds
Since Lauren Ettin joined POGO as Chief Executive Officer in April 2024, she has been making the rounds, becoming familiar with the inner workings of POGO programs and services at our partner hospitals, and the unique nature of childhood cancer care and Ontario’s childhood cancer care system. Here’s what she shared.
Q: How has your experience and background prepared you for your new role at POGO?
Lauren: My career has been in health care across all sectors: public, private and not-for-profit, with the same vision of always improving the delivery of care for all Ontarians. I've worked in the Ontario government, consulting, in an association and led a not-for-profit.
My last role was my first in pediatrics and I was really struck that children are not little adults; delivering care for kids is distinct and unique. In Ontario, we have a remarkable childhood cancer care system—an actual cohesive system—established by visionary leaders and recognized as a national, if not international, leader in the healthcare field.
Q: In the last four months, you have spent a lot of time getting to know POGO’s partners and our various stakeholders. Why was it important to spend so much time in the community?
Lauren: In pediatric cancer, there are so many different lenses and perspectives. It was really important for me to spend time meeting our partners, building relationships with people and understanding their experience and vision for the system; where they see our collective strengths and opportunities—and then bringing that all back to inform POGO’s work and priorities.
There is exceptional pride in the quality and accessibility of Ontario’s childhood cancer care system. At POGO, we have an opportunity to build on our ability to bring people together to learn from each other, and plan, execute and spread in scale together—not only to other parts of Ontario’s healthcare system, but around the world.
Q: Describe what has stood out for you in your short time at POGO.
Lauren: What stands out most is how we put children and family at the centre of care, knowing a childhood cancer diagnosis impacts the child but reverberates more broadly. And the interprofessional healthcare teams are experts in supporting individual patients from diagnosis and treatment to survivorship, and sometimes, unfortunately, to end of life. POGO’s programs address their physical medical needs, but also their mental health and personal needs.
POGO also collects data on every child diagnosed to inform system planning. The research we do and the clinical practice guidelines we develop translate into better care and improved outcomes.
What’s more, we have incredibly supportive donors who share our vision for children's cancer care in the province.
This all makes POGO incredibly unique.
Q: September is Childhood Cancer Awareness Month. What do you want people to know or understand about childhood cancer in Ontario?
Lauren: Over the past 50 years, there have been dramatic improvements in childhood cancer care and fewer kids are dying of cancer. Today we expect approximately 85% of children who are diagnosed to be long-term survivors due to things like research and clinical trials. Still, with all this good news about increase in survivorship, cancer is still the most common disease-related cause of death in children over the age of 1 year.
Also, it is important to note that two of every three childhood cancer survivors are at risk of a late effect due to their cancer or its treatment, like second cancers or cognitive challenges. While surviving cancer is certainly the goal, it is not where the journey ends. The impacts of childhood cancer can last a lifetime.
Q: POGO will soon release a new Childhood Cancer Care Plan, developed in consultation with a wide range of stakeholders. What are two or three things that made a strong impression on you as you stepped into your role and worked to bring the Plan to completion?
Lauren: To address the unique complexities, ripple effects and long-term impacts of childhood cancer, POGO and its partners have built a system that provides wrap-around care and support for children and families at every stage of the journey. One of the things we heard from the consultations is that we're on the right path with opportunity for improvements, and the way to execute on the Childhood Cancer Care Plan is for all our partners, within their different roles, to work together to move the Plan’s goals and objectives forward.
Q: With all that you’ve seen and heard through your rounds what are you most excited about?
Lauren: I’m excited to build on POGO’s collaboration with current and new partners; to convene leaders and focus our attention on making tangible improvements in care that are aligned to the goals and objectives in the next Childhood Cancer Care Plan. I feel strongly that our intentional efforts are sure to reap great rewards. Ontario can continue to strengthen its world-class childhood cancer system so that patients and survivors can count on having the treatments, resources and supports they need today – and for life.
Related Content
POGO Welcomes New CEO, Lauren Ettin
POGO is pleased to announce that Lauren Ettin will be joining POGO as our new Chief Executive Officer, beginning April 29, 2024. After an extensive search, Lauren emerged as the ideal candidate to lead our organization into the future. She succeeds Jill Ross who has served admirably in the role since 2018, leading the organization through a critical time and delivering on our commitments to families and children.
"Lauren’s diverse background and wealth of experience across the healthcare system and in pediatrics uniquely position her to lead POGO toward continued excellence and innovation," says James Scognack, POGO Board Chair. "She has a vision for the organization that we share, strong connections with the pediatric community, and a passion for supporting children, youth, and their families, which, among other attributes, make her ideally suited to the role."
Lauren’s career has spanned the public, private, and nonprofit sectors. She has proven herself to be a strategic and entrepreneurial leader, with her most recent role as the founding Executive Director of Kids Health Alliance. In this role, Lauren forged relationships and formal collaborations with and between children’s and community hospitals, associations, and government. In addition, she was instrumental in the work of the Children’s Health Coalition, bringing together a collective voice for the pediatric sector, which resulted in a historic investment of $330M for programs and services across Ontario.
Prior to her time with Kids Health Alliance, Lauren served as the Director of Policy and Member Relations with the Council of Academic Hospitals of Ontario, worked in consulting and spent time in management roles in the Ministry of Health and Cabinet Office.
Lauren shares her excitement about joining the POGO team: “This is a dream opportunity to bring my experience in pediatrics to an organization of such high esteem. I am honoured to be the successful candidate and I look forward to working with the incredible childhood cancer community and all those who so generously invest their resources to ensure everyone affected by childhood cancer has access to the best care and support.”
Please join us in extending a warm welcome to Lauren. We are excited about the future and look forward to the positive impact that Lauren will undoubtedly make as she builds on POGO’s 40-year foundation to further the organization’s mission and vision.