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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.
Let’s Raise Awareness of Childhood Cancer all Month Long
Meet the Funk family. When young Christopher was just a year old he was diagnosed with a spinal cord tumour. After an intense surgery and several months of chemotherapy, the family was relieved to move his treatment to a POGO Satellite Clinic closer to home, where he still receives weekly chemotherapy. This transition not only reduced the time his parents had to spend away from work but also allowed Christopher and his sibling, Alexander, to spend much more time together.
September is Childhood Cancer Awareness Month (CCAM). In Ontario and beyond, many are raising awareness of both the progress and ongoing challenges in childhood cancer care. Every day, POGO collaborates with hospitals, families, survivors, government, and donors to champion this cause.
Here’s how you can get involved:
GIVE
Support childhood cancer care by making a donation, becoming a monthly donor, learning more about legacy giving, or contributing in honour of someone affected by childhood cancer.
#LINKEDForLife Campaign
Vibrant paper chains will hang in the halls of POGO partner hospitals throughout Ontario, showcasing our collective commitment to support young cancer patients and their families, survivors, healthcare teams, and those who left us too soon. Donate to add your name and help grow our chain!
Get Your Company Involved
Engage your company with fun activities like office fundraisers, a pajama day, raffles, or building a #LINKEDForLife chain.
Register for an Event that Supports POGO
Stay active and support childhood cancer care by participating in the PUMA Toronto Women’s 8K/5K on Saturday, October 5, 2024 or the TCS Toronto Waterfront Marathon 5K on Saturday, October 19, 2024. Register and fundraise for POGO.
Let’s work together to make a difference!
Related Content
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
Gaming Through Cancer Without Cheat Codes
Author: Jason Truong
It started out as a lighthearted December night. A short break to relax before I prepared for another day of school. On my laptop was an old video game that me and my sister were playing. Then the phone rang. The call from my doctor was devastating.
“Throughout my life video games have helped me when times were rough…“
In the dead of the night, my dad and I were on our way, stepping through puddles of rain in a dark alley. I went from place to place, and after trials and tribulations, I ended up in the emergency room at the Children’s Hospital in London, Ontario, hooked up to an IV and watching old cartoons on Nickelodeon. I cannot clearly recall the series of events—it was as if I was in a daze the whole night. In the end, I was diagnosed with chronic myelogenous leukemia (CML), a relatively rare cancer in children. I was 14 years old.
The first days of my hospital stay were without rest. However, this all changed when a support program at the hospital called Youth CoRE gave me the opportunity to play Nintendo Switch games with an opponent. With this, my days seemed brighter and flew by.
After returning home from 10 days in hospital, I went back to my daily routine of online school. I fondly remember finishing my homework as soon as I could to boot up my laptop, and diving into an exciting game. The shining highlight of my first and second years of high school was the immersive experience of those games, worlds vibrant and inexhaustibly explorable far and wide, together with unique storytelling, music and art direction.
As time went on, online classes became harder to bear. One day, I just couldn’t see the point anymore. For my 11th year, I returned to in-person learning. My first day back at school was disheartening. I knew nobody. I felt like I didn’t even know myself. I lost sleep and I noticed I was rarely playing video games, if at all.
Eventually, I tried to make time to start playing again. My first title was NieR:Automata, which I had been anticipating for many years. This game’s narrative explores philosophical themes within a narrow context: the search for the meaning of existence, the reason to keep on fighting, and the subject of identity loss, all amidst a war and chaos. It resonated with me deeply. Rediscovering my passion for video games allowed me to reconnect and have fun with my friends, even as all of us got busier.
Throughout my life video games have helped me when times were rough; not only by playing them, but I have also been creating my own since the age of nine. Inspired by the dedication of game developers to their work, I have always thought, “I could be like them someday.”
After finishing a computer programming course in my final year of high school, I decided to take it on as my chosen field of study. In fall 2024, I am bound to start Computer Programming at St. Clair College to help widen my range of programming knowledge. For those who may be living through tough times, I want to inspire them to create, like many games and developers have inspired me.
Bio: Jason Truong is an 18-year-old CML survivor, still undergoing treatment. Here is a game that he created, inspired by Mario. Jason is also interested in sci-fi, anime and wildlife, including sharks and gentoo penguins.
- Castle Crashers
- Chocobo Racing
- Dragon Quest 11
- Final Fantasy XIII
- Muse Dash
- NieR:Automata
- Pokémon Black and White
- Resident Evil 4
- Scribblenauts
- Undertale
- Yakuza 0
- Yakuza Kiwami (much less explicit, equally violent as first)
My Fertility Journey
Author: Cassandra Watson
Living with a chronic condition can feel like riding a never-ending roller coaster—minus the fun parts, of course. My journey started with a spinal tumour diagnosis in 2009 (myxopapillary ependymoma, if you are into those fancy medical terms) which led to several surgeries and radiation therapy. Unfortunately, I ended up with chronic pain to manage, but I have to say these treatments made a significant difference. While this experience wasn’t exactly a walk in the park, it motivated me to advocate for others facing similar challenges, especially around fertility preservation. I’ll dive into that part soon!
Photo above: Left: Cassandra after first spinal surgery. Right: Cassandra now.
“Could my past medical experiences have an impact on my ability to have biological children in the future?”
Transitioning from pediatric to adult care has been quite a journey, and it is still challenging at times. I went from having a dedicated team supporting me in every aspect of my life to feeling like I was navigating my health on my own. I was familiar with Princess Margaret Cancer Centre from my radiation treatment, but the whole experience was pretty overwhelming. I made sure to ask my POGO Aftercare Clinic Nurse lots of questions, everything from learning how to check for lumps in my breasts? to understanding the potential impact of my past treatments on my body. One particularly important question I had was about my fertility: Could my past medical experiences have an impact on my ability to have biological children in the future?
That single question changed my life.
“The emotional toll is substantial, especially since, despite all my efforts, there is no guarantee of success.”
Left photo: The daily medication injections for egg-freezing process
I learned that my AMH (anti-müllerian hormone) levels were low, indicating a low egg count, which led me to Mount Sinai Hospital’s fertility clinic. At 22 years old, the news that I didn’t have much time was a shock. I had to weigh my options: have a child soon, freeze my eggs, or consider alternatives like egg donation or adoption. In the end, I chose egg freezing, which significantly shifted my life plans. The treatments were tough and the costs made things even more complicated. The emotional toll is substantial, especially since, despite all my efforts, there is no guarantee of success.
My radiation treatment affected my fertility, which is a topic that doesn’t always get the attention it deserves. While fertility preservation is starting to come up more frequently in discussions with younger patients, it wasn’t something that was brought up in my discussions with my health team. I feel this gap in communication and resources is an important issue that deserves more attention.
Navigating my fertility journey has been quite an eye-opening experience. It is understandable that when you’re focused on managing an illness, fertility can sometimes take a back seat. But for many, the ability to have children is a big deal. It can be frustrating to miss out on preservation opportunities simply because of a lack of information. It feels a lot like missing the boat. And who wants to miss the boat?
These experiences have inspired me to become a voice for others in similar situations. Advocacy goes beyond just pushing for medical advancements; it is also about making sure patients have the information and support they need to make informed choices about their futures. By sharing my story at events like the 2024 POGO AfterCare Education Day and through this article, I hope to encourage others to ask the right questions, seek the information they need and stand up for their own needs. If there is one lesson I have taken away, it is that you sometimes must be your own best advocate.
Recognizing that my experiences can help others has truly changed how I view my health challenges, seeing them not just as a burden, but as opportunities to make a positive impact in the community. Through advocacy, I aim to bridge the gaps in care and ensure that the next generation of patients has access to comprehensive support, particularly when it comes to fertility awareness. As I continue on this advocacy journey, I am genuinely excited to see what the future holds. My journey has shown me that while medical treatments are crucial, so is the support for the emotional and future aspects of life, like fertility. As health care continues to advance, let’s make sure to include these important conversations, making sure every child has the chance to lead a fulfilling life, both during and after treatment.