POGO Statement on Childhood Cancer Awareness Month
September is Childhood Cancer Awareness Month and a time to raise awareness and express support for the children and youth with cancer, survivors of childhood cancer, and their families.
The burden of a childhood cancer diagnosis on families is immense, affecting them emotionally, socially, financially and countless other ways. In Ontario, from the time of diagnosis, childhood cancer patients have access to a coordinated system of care in leading hospitals across the province.
Pediatric Oncology Group of Ontario, POGO, is a made-in-Ontario solution, working in partnership with these hospitals and the Ontario government to help ensure everyone affected by childhood cancer has timely access to the best care and support.
This September, we acknowledge the children and youth in treatment or follow up care, the survivors of a childhood cancer diagnosis, the loved ones lost, and their families; and we are grateful to the many incredible organizations and multidisciplinary healthcare teams caring for them, and to those who provide other invaluable supports.
Watch the video statement from Premier Doug Ford, Health Minister Sylvia Jones and POGO Board Chair James Scongack.
Statement from Premier Doug Ford
“September is Childhood Cancer Awareness Month. Throughout this month I encourage everyone across Ontario to help raise awareness for this tragic disease that affects thousands of children and youth in our Province. Not only is cancer devastating to those diagnosed, it also deeply impacts their families in countless ways. I want children and youth, as well as their parents, siblings, friends and loved ones to know that they have a team Ontario on their side as they fight through this terrible disease. I want to thank the Pediatric Oncology Group of Ontario for their support in providing patients and survivors with world class care. I look forward to continued collaboration.”
Statement from Deputy Premier and Minister of Health Sylvia Jones
“This September, I want to recognize children and families across Ontario impacted by childhood cancer. September is a time to recognize the courageous children who are receiving or have received treatment and thank their families for staying strong through their treatment journey. Cancer touches so many lives and I want to thank the dedicated Pediatric Oncology Group of Ontario who advocates for patients and survivors through these difficult times. Our government will continue to work with you and our hospital partners to ensure children in Ontario have access to the care they need and deserve close to home.”
Statement from POGO Board Chair James Scongack
“Cancer is something that impacts us all, whether it's ourselves our loved ones our family members, our friends, our neighbours or individuals in our community. At some point or another in all of our lives we will be impacted by cancer. September is Childhood Cancer Awareness Month in Ontario and throughout September it's a really important opportunity for us as a province to come together to raise awareness around childhood cancer but most importantly come together as a province to do everything we can to be there for those kids and families who are battling childhood cancer. The partnership between the Pediatric Oncology Group of Ontario and the Ontario government and our entire hospital and pediatric oncology sector is a good example of how we can come together as a province and be there for families and kids not only today during Childhood Cancer Awareness Month but every single day of the year. I want to take this opportunity to send a very clear message to the families and kids that are battling childhood cancer, not only today but in the future, that we have your back; that we will continue to work as hard as we can every day to not only raise awareness but to continue to do better. Finally, I want to recognize the frontline healthcare professionals; you do incredible work. We're proud of you and during September as Childhood Cancer Awareness Month, let's not only think of the families who are challenged with childhood cancer and battling it today; let's also thank those frontline workers who come to work every single day under extraordinary circumstances.”
Attend the POGO Celebratory Dinner
At the 2023 POGO Celebratory Dinner we’re celebrating POGO’s 40th, the return of the POGO Recognition Awards and this year’s recipients, and, as always, excellence in the childhood cancer community.
We’ve packaged the fun in so many memorable ways (photo booth, table games & more) you won’t want to miss it! Plus, there’s dancing.
Friday, November 3
Pan Pacific Toronto
900 York Mills Rd.
Cocktails: 6:00 p.m.
Dinner & Awards: 7:00 p.m.
Tickets: $100
Cash bar
Business casual or conference attire
Ticket sales end Monday, October 30
Buy your Celebratory Dinner ticket now
The dinner takes place during the annual POGO Multidisciplinary Symposium on Childhood Cancer, November 2 - 4. If you’re attending the POGO Symposium, the Celebratory Dinner is included.
Four Ontario hospitals first in Canada internationally certified as Centers of Excellence in Supportive Care in Cancer
Four major Ontario pediatric hospitals, with specialized childhood cancer programs, are the first hospitals in Canada to be awarded prestigious international certification recognizing their excellent supportive care for children and youth with cancer.
CHEO (Ottawa), The Hospital for Sick Children (Toronto), Children’s Hospital at London Health Sciences Centre, and McMaster Children’s Hospital (Hamilton) were each certified by the Multinational Association of Supportive Care in Cancer (MASCC) as Centers of Excellence in Supportive Care in Cancer.
Supportive care refers to the prevention and management of the adverse effects of cancer and its treatment. This includes the management of physical and psychological symptoms and side effects of treatment, such as infections, prevention of nausea and vomiting, nutrition, physiotherapy, and psychosocial support. Supportive care aims to improve the quality of rehabilitation, secondary cancer prevention, survivorship, and end-of-life care.
MASCC certification recognizes these oncology centres for integrating the highest standards of comprehensive supportive care services with cancer treatment. These hospitals provide comprehensive supportive care to their pediatric oncology patients. They work in partnership with the Pediatric Oncology Group of Ontario (POGO) to ensure everyone affected by childhood cancer has access to the best care and support, including through POGO’s Interlink, Transitions, AfterCare, and Satellite Clinic services, and implementation of POGO’s evidence-based clinical practice guidelines.
These four Ontario hospitals join other leading healthcare facilities around the world as MASCC-Designated Centers of Excellence in Supportive Care in Cancer.
MASCC certification is valid for three years.
About MASCC
The Multinational Association of Supportive Care in Cancer (MASCC) is an international multidisciplinary organization dedicated to research and education in all aspects of supportive care for people with cancer. The certification program aims to promote and recognize oncology centres that demonstrate best practices in supportive cancer care by successfully integrating oncology and supportive care, upholding high standards, and maintaining comprehensive supportive care services. Learn more.
About POGO
Pediatric Oncology Group of Ontario (POGO) works to ensure that everyone affect by childhood cancer has access to the best care and support. POGO partners to achieve an excellent childhood cancer care system for children, youth, survivors, and their families, and healthcare teams in Ontario and beyond. POGO champions childhood cancer care, and as the collective voice of this community, is the official advisor to Ontario’s Ministry of Health on children’s cancer control and treatment. POGO is a non-profit organization with charitable status, here for kids with cancer, for now, for life. Learn more.
Welcome New POGO Board Member - Jennifer Lomax
POGO is pleased to welcome Jennifer Lomax as Chair of our Development Cabinet and member of our Board of Directors.
Jennifer is Founder and Principal Consultant at Lomax & Co., an advisory firm that mobilizes strategy and implements sustainable management systems to drive superior business results. In this capacity, Jennifer worked with POGO to develop its current organizational strategy. Energetic, pragmatic and unapologetically candid, Jennifer uses her mastery of stakeholder engagement and facilitation to devise and deploy practical, high-impact business solutions. She has over a decade of experience working with organizations of all sectors and scale, including Fortune 500 companies on the client side and in strategic planning roles. Jennifer most recently served on the board of the Loeys-Dietz Syndrome Foundation of Canada.
She attained her MBA from Ivey Business School in 2011 and in 2013, Marketing Magazine named her one of Canada’s Top 30 under 30, recognizing the country’s smartest young marketers.
“I’m passionate about supporting my community and meaningful causes and pleased to join the POGO board and serve as Chair of the Development Cabinet to support POGO’s strategic, fundraising and outreach goals.”
Patients and families tell their stories through their eyes
To quote Brené Brown, “Maybe stories are just data with a soul.” It is POGO’s hope that everyone who engages with these stories will learn something new about the childhood cancer experience, by seeing it through the eyes of patients and their families.
Ethan’s Story
Ethan was six years old when he was diagnosed with medulloblastoma, sub category 3.
Today, Ethan is 10 years old and in this story he draws on his love of video games to talk about overcoming obstacles, forging new paths, and appreciating what makes him and others unique.
Layya’s Story
This story is a poignant reminder of the impact that a childhood cancer diagnosis has on the entire family unit, in particular, siblings. Layya talks about the confusion and pain she felt watching from the sidelines as her sister, Sara, went through treatment for a brain tumour.
Sara’s Story
Sara is Layya’s sister. She was diagnosed with low-grade astrocytoma when she was seven years old. What followed was a harrowing journey that moved her family from their home in Lebanon to Canada to seek treatment, which was difficult for the entire family. The hardest part of the journey for Sara, though, came after she was declared "cancer-free," which is an experience shared by many survivors. Reintegrating into school and relating to her peers were tremendous challenges at first. Yet Sara perseveres, and her story is a powerful reminder that even small acts of kindness can make all the difference in the lives of a child with cancer.
Yvonne’s Story
Yvonne is mother to Alyssa. This story describes Yvonne’s early experiences with the healthcare system as she searched for an answer to what was ailing her child. A mother’s intuition is a powerful thing, and Yvonne knew something was terribly wrong. Instead of support, she encountered suspicion, judgment and worse.
This story delivers a message that is hard to hear, but one that we can all learn from. It is not about any one institution, but rather highlights inequities in the healthcare system at large that will only be corrected when we collectively acknowledge and address them. POGO shares this story in the spirit of learning together to help us all be positive agents of change.
Nelly’s Story
Nelly was diagnosed with medulloblastoma when she was 10 years old, which significantly affected her vision. She was in the dark—literally and figuratively—and felt so hopeless at times that she didn’t see the point of engaging with the world around her. Nelly’s story reminds us how disorienting a cancer diagnosis can be for a child, and how resilient children can be in the face of challenging circumstances.
The Ups and Downs of Disclosing That You Are a Childhood Cancer Survivor
Jessica Wright is a brain tumour survivor. In 2018, after an application process, she was selected as one of four Survivor to Survivor (S2S) Network Presenters. POGO’s S2S Network is a special series of interactive sessions where survivors present helpful information, lead discussions and share personal experiences about a variety of survivorship topics. During the course of their engagement, presenters build skills, a connection and a community with fellow survivors.
By Jessica Wright
By the time I was 10 years old, I was having lots of migraines and struggling at school.
My family brought me to the doctor several times, but I wasn’t diagnosed until my teacher—a childhood cancer survivor herself—convinced my parents to insist I get an MRI. I remember all of us were in shock when they told us I had a pilocytic astrocytoma tumour, which is essentially a slow growing brain tumour.
The tumour is smack in the middle of my brain so chemo would not have been effective, and surgery was not an option. I was treated with radiation for six weeks, but I still live with the tumour today; I liken it to a dead mouse behind a wall. I also live with several side effects. I struggle with balance; I move a bit slower than the average person and my strength is very poor. I have a strong sensitivity to smells and I still suffer from migraines. I am also blind in one eye. None of these things are significantly noticeable so I blend in with the rest of the world and look like a healthy person. That’s the thing with childhood cancer survivors; many of us live with disabilities long after we survived our illness. For some people, like me, these disabilities are invisible so we can be perceived as lazy, especially in a school or work environment.
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That is why I am so grateful to POGO for creating a program where survivors can learn from each other about how to deal with things like employment, school, advocacy and disclosure. I need special accommodations to compensate for my disabilities and I have learned firsthand that how and when you choose to disclose these things can contribute to your success at work.
There was the time I was hired to work at a store, and I chose not to disclose my disability. My job was to stock the shelves and set up for the store’s grand opening, after which, perhaps, I would be hired permanently once the store opened. It went well for the first couple of days until I got stuck in the aisle with cleaning products. I tried to tough it out, but I got light-headed and felt faint. I asked my supervisor if I could be moved to another area of the store and she was accommodating, but my co-workers didn’t know why; they just felt I was getting special treatment. I think if I had said something at the beginning, I would never have been put in that aisle to begin with and maybe things would have turned out differently.
I have another story where I disclosed my disabilities during the hiring process because part of my job was going to be accepting deliveries. I let them know that I cannot manage with very heavy lifting and about some of my other challenges because of my brain tumour. My supervisor was very understanding and even supportive. After a few weeks, when she saw me struggling at the end of a long day, she asked if I wanted to work shorter shifts. She tried to work around my limitations as best she could.
Being a POGO S2S facilitator has enabled me to share my experiences with other survivors and hopefully help them cope with their own struggles. It has also been very uplifting and empowering for me. Everyone understands what I am going through. No matter what I say or what I do, they don’t judge me, and they don’t complain. I have never been anywhere where I felt so accepted. It has truly been the best experience of my life.
This story was featured in POGO’s 2019 Community Impact Report.
Welcome to our New Corporate Partner
We are thrilled to announce that in November 2022, Desjardins made a three-year commitment of $90,000 to POGO. Together, we are transforming the cancer journey for children, youth, survivors, and their families in Ontario and beyond.
As a financial cooperative group committed to empowering people and communities, Desjardins recognizes the socioeconomic toll childhood cancer treatment has on our families.
Advancing Childhood Cancer Care in a Post-COVID World
A Synopsis of the 2021 POGO Multidisciplinary Symposium on Childhood Cancer
The COVID-19 pandemic has healthcare providers and the families in our care literally hiding emotions behind masks. Family members cannot fully see the empathy we feel, and as providers, we are unable to use our traditional methods of providing compassionate care. Over the past 18 months, families have had to live their cancer journey in parallel with a global pandemic requiring multiple restrictions to hospital visits, with additional screening and COVID-19 testing. This has elevated levels of distress and burnout for families and hospital care teams alike. Recognizing this, the 2021 POGO Symposium planning committee sought to explore the issues of patient and caregiver distress and resilience, as well as healthcare provider burnout. As part of maintaining professional resiliency beyond the acuteness of COVID-19, the POGO Symposium provided an opportunity to learn about important clinical and diagnostic updates, and continued healthcare and scientific innovation.
Family Stories Remind of our Purpose
A parent testimonial opened day one and grounded us as pediatric oncology professionals in the “why” of our work. In sharing about her 14-year-old daughter’s cancer diagnoses, Guylaine Tremblay touched on the importance of psychosocial supports for all family members. On day two, the Saenz family gave real-life context to the challenge of accessing clinical trials that so many families face. These stories were powerful reminders of the impact a childhood cancer diagnosis has on the family and how the pediatric oncology community must better understand these needs and provide comprehensive and personalized support.
Care for Caregivers of all Stripes
When it comes to caregiver resilience after their child is diagnosed with cancer, we heard that 80% of families will adapt and be resilient based on our standardly-delivered supports and strategies. Of critical importance is finding a way to identify the remaining 20% who will need intensive psychosocial and possibly psychiatric support, and to ensure there are suitable professionals available for referral and intervention. Healthcare teams must also make room for self-compassion in our stressful and often chaotic work days, as we try to leverage available resources to assist families who require extra support.
Delivering Virtual Care to Survivors
The COVID-19 pandemic has also dramatically altered the way we deliver care, and especially aftercare to survivors, with the rapid implementation of virtual care. We learned what can be done well, what was of benefit to patients and families and what could be successfully carried forward in a post-pandemic world. New and innovative approaches to follow-up care include recognizing unique needs tied to the transition from acute care to survivorship clinics.
Clinical and Diagnostic Advances Bring New Hope
Of course new innovations in childhood cancer continue to emerge, and presentations on clinical and diagnostic advances added greatly to our learning. Work in the area of immune checkpoint inhibitors shows great success in treating Hodgkin lymphoma and promise for other diagnoses. It was exciting to hear about updates on CAR T for both B-cell leukemias and acute myeloid leukemia (AML), one of the more difficult childhood cancers to treat. This brings signs of hope for improved outcomes with less toxic therapy approaches. Potentially ground-breaking work in liquid biopsy allows us to imagine a world where we no longer need invasive, surgical intervention to detect cancer both at diagnosis and during cancer surveillance.
Innovation Panel Explores Strategies for Canada
The POGO Symposium wrapped up with a slate of presentations and a panel discussion with luminaries in the field that tackled everything from innovative solutions to improve clinical trial access to how Canada can develop an innovation strategy that serves patients and the economy. The message that innovation is not only invention but the successful development and implementation of these inventions was very strong. This session also highlighted our collective challenge to make available new and often expensive therapies. The discussion presented the opportunity for all of us to consider how we can individually and in partnership move the needle on public policy for advances in pediatric cancer.
With something of interest for everyone, the 2021 POGO Symposium showcased the bravery of families to help us all learn from their stories and the tremendous dedication of professionals who continue to do everything possible to provide excellent care to every child diagnosed with cancer. My hope is that we were all encouraged to heed the challenge of harnessing innovation to transform the landscape of pediatric oncology care.
“Even during the most chaotic day it is important to take a moment to breathe and remember why we chose this very important work, and to be present with our patients and families.”
- Sue Zupanec
Written by Sue Zupanec, co-chair of the 2021 POGO Symposium Planning Committee, with contributions from her co-chair, Dr. David Hodgson, POGO Medical Director and Chair in Childhood Cancer Control.
Sue is a pediatric nurse practitioner in the Leukemia and Lymphoma Program at The Hospital for Sick Children, and Chair, Nursing Discipline of the Children's Oncology Group.
Family Pays it Forward with Pajamas and Pancakes Event
The Welke family put on their PJs, turned up the griddle and opened their home to the community in Stayner, Ontario, to raise funds for POGO. The event was in honour of their daughter Gwendolyn who was five years cancer-free!
POGO helped us when Gwendolyn was diagnosed with an adrenal cortical carcinoma—they provided us with financial assistance when we had to travel to Toronto, and because of the POGO Satellite Clinic in Orillia (Soldiers’ Memorial Hospital), we were able to stay closer to home for some of her treatment. Without the Clinic and financial support, I don’t know how we would have made it through.
When we received the notice in the mail about Pajamas and Pancakes, I turned to my husband and said, “Why don’t we do a small event with our friends and family to raise money for other families going through treatment?”
Want to host your own Pajamas and Pancakes event? We’re here to help! Learn more here.
Our original goal was $1,000 and we thought even that was crazy, but things really took off. I sent print and Facebook invitations to our personal contacts and families who we met at the Orillia Clinic. When a local real estate agency heard about our event, they asked us if we wanted them to advertise for us, so we ended up opening it to the public. We offered coffee, juice, sausages, three pancakes and a topping bar full of whipped topping, chocolate chips and Skor pieces for a minimum donation of $5. We also had a silent auction with a good variety of items donated from friends and family with home businesses.
In the end, over 100 people came through the house, many who we had never met before, and we raised $3,000 for POGO families! I think it was impactful for our guests to meet parents and kids who have been through treatment and benefitted from POGO—they could see exactly where the money would be going.
Gwendolyn had an amazing time. Without fundraising like this, families would not receive the help they need during one of the most stressful times of their lives. It is important to give back. And who doesn’t like pancakes!?!
By Melissa Welke
Editor's Note: This event took place in 2019 prior to the COVID-19 pandemic.
In Conversation with Dr. David Hodgson: A Progress Report of His First Five Years
And Looking Ahead to His Next Five as POGO Medical Director and Chair in Childhood Cancer Control
In November 2021, Dr. David Hodgson (DH) began a second five-year term as POGO Medical Director and Chair in Childhood Cancer Control at the University of Toronto. In conversation, he shares highlights of his very productive first term, 2016 – 2021.
Q: Data-driven quality improvement is one of the five goals of POGO’s Childhood Cancer Care Plan. What initiatives have you undertaken to tackle this pressing priority?
DH: Well, for POGO to drive forward improvements in the childhood cancer system, we need to listen to our clinical partners and families to understand what the needs are, help develop and improve programs that meet those needs, and measure how well we are doing in that mission.
I felt that while POGONIS and our other data holdings are among POGO’s strengths, they were underutilized. So, over the last five years, we published and made available significantly more childhood cancer data to help clinical stakeholders and researchers understand the current state of childhood cancer in Ontario.
POGONIS is POGO’s active cancer registry initiated over 30 years ago to capture diagnosis, treatment and outcome data for children treated at the five specialized childhood cancer programs in Ontario.
We’ve also taken steps to strengthen data quality by implementing automated quality checks to immediately identify possible errors.
POGO produced two provincial childhood cancer surveillance reports (2018 and 2020) making Ontario the only province to publish searchable data regarding the incidence, prevalence and outcome of childhood cancer for different childhood cancer subtypes. In 2020, we saw the first-ever inclusion of POGONIS-derived childhood cancer statistics in the Ontario Cancer Statistics report, and we contributed to the national Cancer in Young People in Canada (CYP-C) Data Tool.
For hospitals, we provided the first POGO Quality Indicators Report, which allowed them to see information such as the type of cancers they care for, wait times and clinical outcomes compared to the province as a whole.
As a result of this work, data is much more available to hospitals, system planners and researchers to undertake activities such as assessing the feasibility of conducting a research study, or understanding the provincial patterns and trends of childhood cancer so the system can be prepared for the future.
Q: What other improvements have been made to POGO’s data?
DH: We have improved the data for specific POGO programs to ensure they are serving children with cancer and survivors in the best way possible. For over 20 years POGO has managed a long-term follow-up program for survivors of childhood cancer through the POGO AfterCare Program delivered in seven clinics across Ontario. We worked with these clinics to update the data collected so that we can assess the impact that these clinics have on survivor care and inform continuous improvement.
Q: Looking ahead, what are your plans for further improvements in data-driven quality?
DH: It is important that we continually work with our clinical and research partners to ensure that we are facilitating their work. Now that we have made these changes to our data collection and reporting, we have to be sure that we are not just collecting data for its own sake. We want to be able to inform clinical programs and research that have a clear path to improving the outcome for children with cancer. This means building collaborations that enhance the clinical and policy relevance of our data.
One great example is the work that the POGO analytics team and our Technology Advisory Committee is doing with Dr. Pechlivanoglou at SickKids to facilitate access to innovative new treatments for children with cancer by developing policy advice for government. This work involves input of clinical experts, access to high-quality data and analytic expertise, and an understanding of the regulatory environment. Any one of these on its own would not be enough, but working together with our clinical and research partners across Ontario, we can make progress that would not be possible without bringing together all the pieces of the puzzle.
I would also like to increase the utility and variety of data holdings we can use and make available to others, and redesign the POGO Research Unit to better support the deliverables of our Childhood Cancer Care Plan.
Q. Survivorship is near and dear to your heart. Tell us about your future focus for the POGO AfterCare Program for childhood cancer survivors.
DH: The POGO AfterCare Program was formally established in 2001 with clinical collaboration of seven clinics throughout Ontario. Developed at a time when few survivors were receiving adequate follow-up care, the initial strategy was to recall and retain as many survivors as possible. More recently, we have worked to integrate the concept of “right care in the right place” into the model of AfterCare.
We recognize that during treatment, POGO Satellite Clinics can provide excellent care for selected patients and problems without requiring the patients to travel to their primary treating hospital. The same can be true for AfterCare. Very few of the tests required by survivors are so high-tech that they need to be done in the primary treating hospital. But the major challenge is ensuring that we can provide the multidisciplinary care that some survivors need, particularly access to mental health supports, which I think are in very short supply. My goals are to ensure survivors with the highest risk for complications are able to access the clinics and receive care appropriate to their situation, and develop a sustainable strategy that better incorporates patients’ primary care providers so that the ever-growing number of survivors have sustained access to appropriate care.
Related Content
In addition to his role as POGO Medical Director and POGO Chair in Childhood Cancer Control at University of Toronto, Dr. David Hodgson is also a radiation oncologist at Princess Margaret Cancer Centre with a cross-appointment to the Division of Hematology/Oncology at The Hospital for Sick Children. He is a professor in the Department of Radiation Oncology at the University of Toronto. He was first appointed as POGO Chair in Childhood Cancer and Medical Director in November 2016. Read his bio