Pediatric Oncology Group of Ontario

Pediatric Oncology Group of Ontario (POGO) champions childhood cancer care. When a child is battling cancer, we ensure that the child has lifelong access to the best care for the best possible outcomes. We provide that child’s family with financial support to help ease the burden. We commit to his or her ongoing care, knowing that childhood cancer survivors endure medical challenges into adulthood. We advance cancer care for all children with cancer through our pioneering database and research. POGO leads a unique and impactful pediatric cancer network that is a model for Canada, and worldwide.

Two young cancer patients wearing their bravery beadsOur Impact Why We Exist

POGO’s purpose is to make a meaningful difference in the lives of children with cancer and their families by providing equitable access to the best possible care, for the best possible outcomes. POGO’s unique and impactful province-wide pediatric cancer care system enables POGO to champion childhood cancer care on behalf of the entire childhood cancer community. 

We do this through:

  • Influential leadership, we align the childhood cancer community around a shared purpose and common direction
  • A unique and impactful province-wide pediatric care system that is scalable and exportable as a model for Canada and worldwide.
  • Collaboration with World-Class Network of thought leaders
  • Robust database and information systems powered by our special status to hold patient data and information
  • Our position as trusted source of information and the respected source of childhood cancer care recommendations and advice to the Ontario Ministry of Health (30-year track record) 
  • Our role as the collective voice that speaks on behalf of the entire childhood cancer community – we act as the single touchpoint
  • Our reputation as a passionate and ambitious team of forward-thinking, well informed experts

Childhood cancer patient with chemo demonstration dollOur Story What We Do

A Unique Alliance

POGO—Pediatric Oncology Group of Ontario—is an incorporated, not-for-profit entity with charitable status, which developed from an unprecedented alliance of visionary leaders, experts, healthcare professionals, the Ontario government, parents and childhood cancer survivors. The unifying goal of these stakeholders: to deliver the right care, in the right place, at the right time to children in the province whose lives are touched by childhood cancer.

For over 30 years, POGO has worked to develop, fine tune and advance a system of childhood cancer care. In 1988, and again in 1994, POGO delivered comprehensive reports to the Ontario Ministry of Health and Long-Term Care (MOHLTC) on gaps in childhood cancer services. These plans profoundly influenced provincial healthcare funding priorities, stimulated policy development and facilitated access to specialty pediatric oncology programs. In 1995, POGO’s childhood cancer database, POGONIS, was transformed into a fully networked system that the Ministry and POGO could rely on for comprehensive,standardized information, and one that hospitals could use as a core information source about the children they served.

As the official source of advice to the Ontario Ministry of Health and Long-TermCare (Ministry), directly involved in writing healthcare policy, POGO has pioneered a unique whole-life approach to childhood cancer care. As a licensed charity, committed to championing the cause, POGO has identified, and continues to identify, key support programs that government cannot fund, and raises private dollars to deliver these programs.

POGO incorporated as a not-for-profit entity in 1997 and acquired charitable status in 2003, enabling the organization to seek private support for key programs and services that fall outside the scope of government funding. These include:

• POGO’s financial assistance to families program, which supports families through the enormously financially challenging period of active treatment;

• Successful Academic and Vocational Transition Initiative (SAVTI), which addresses educational and employment issues for survivors with cognitive challenges;

• Professional development opportunities to ensure that Ontario’s childhood cancer community remains best-in-class in the rapidly advancing field of pediatric oncology; and

• The POGO Research Unit, which conducts and supports research in a wide variety of disciplines, enhancing our understanding of childhood cancer’s effects, and developing the next generation of pediatric cancer researchers. This work is underpinned and supported by the extraordinary data in POGONIS. 

It is to the transformational work of this unique alliance led by POGO that Ontario’s healthcare system owes its current grasp of the full scope of the challenges presented by childhood cancer.

Teenage cancer survivor and his motherOur Programs How We Do It

Pediatric Oncology Financial Assistance Program

When a child is diagnosed with cancer, "normal" life turns upside down. Families face additional challenges as out-of-pocket costs mount; income is lost because parents take time from work to be with the ill child. POGO studies show that the typical family—usually young and not well-established financially—loses 1/3 of their after-tax income each year.

POGO's financial assistance helps many families cope with the unexpected out-of-pocket costs associated with their child's cancer treatment—costs such as food, accommodation and child care.

"POGO and the funding they provide allowed our family to stay together and get through our child's initial diagnosis and relapse. POGO supported us financially with things like babysitting and paid for us to stay at the Ronald McDonald House for 3 years at $300 a month! We thank you for allowing our family to have the support of POGO." –Charbonneau family

Funding and Program Partners

Private sector fundraising provides 100% of the support for this program.

POGO gratefully acknowledges the outstanding financial support of our lead sponsor, Coast to Coast Against Cancer Foundation, and other major contributors to this program, including CIBC Children's Foundation, Scotiabank, Kitchener Ranger's Clarky's Kids, The Melman Childhood Cancer Fund, RBC Foundation, the POGO Leadership Connection, The McLean Foundation, and the growing list of individuals and event organizers that support this program. We would also like to thank the Marriott, Hilton and Westin Harbour Castle for providing more than 635 complimentary nights for many of the families in need. 

We are currently looking for further resources to allow us to keep up with the high demand and rising costs.

Program Impact

When POGO assumed administration of the program in 2003, we distributed $500,000 annually to families in need. Several factors have since driven us to expand the program:

  • Rising costs due to inflation
  • New treatment protocols requiring kids to be in hospital for longer
  • New options to treat relapsed patients, putting more kids back in the system
  • Bone marrow transplantation (applied to more and more cases) happen in Toronto, requiring families to travel and stay for extended periods of time

Last year, POGO provided over $933,741 to over 1,008 families across Ontario.

Toronto's Vital Signs® indicator(s) addressed by Program

"One in eight households in the Toronto Region experienced food insecurity in 2011" (Torontio's Vital Signs, 2013)

Close to 65% of pediatric cancer diagnoses happen in children under the age of 4. This means that families tend to be young and not well established financially. The financial burden of a childhood cancer diagnosis can be devasting for families who are already struggling to live here. 

Participant Vignette

My name is Aimee. Nearly 2 years ago, I was running down the soccer field, our team on a break-away, and suddenly I collapsed. My femur had fractured. I was immediately rushed to the hospital. An x-ray confirmed that it was a spiral fracture, but there was a dark shadow near the site of the break.

Days later, a biopsy was taken from my bone. A week went by and we tried not to think about the worst case scenario...cancer. Then the day came when we would receive the results, just days before my birthday. I had trouble saying it. Osteosarcoma—the same cancer that claimed Terry Fox. I asked the doctor if I was going to die. Everybody cried. He said no.

After 3 months of brutal chemotherapy, the day had come for the surgery. I was only 12 and I was worried that my leg would have to be amputated. In a 19-hour procedure, the surgical team removed my broken femur, replaced it with a donor bone and more hardware than you can find in Home Depot, and they were able to save my leg.

This past February, marks 2 years that I am cancer free!

I would like to thank POGO and special thanks to Marilyn, my POGO Interlink Nurse for being there for me. POGO supported my family through our daily challenges in ways I'm only just learning about. My life has now changed because of cancer. I was forced to grow up faster than I was ready. Maybe no one is ever really ready to face cancer. Thankfully, my family and I didn't have to face it alone. I may have a scar from my hip to my ankle, but with the help of POGO, I am stronger than ever!

SAVTI (Successful Academic and Vocational Transition Initiative)

Just 30 years ago the survival rate was only 60%; now more than 82% of children diagnosed with cancer are cured and become survivors. This is an amazing accomplishment, but survival itself is not sufficient. As many as 60% of this population will face a lifetime of complications that are a direct result of their childhood disease and/or the treatment they received.

Many survivors face physical and emotional challenges that they must learn to overcome. Sadly, some childhood cancers, such as brain tumours, can also result in learning difficulties and other cognitive issues. There are approximately 3,000 Ontario survivors that currently struggle with slowed rate of information processing, poor working memory, increased forgetfulness and organic-based inertia, often compounded by impaired vision or hearing, persistent fatigue and more.

Prior to SAVTI, there were no special supports to address these issues. Since 2002, POGO counsellors have been working with survivors to help them identify a realistic career path, prepare for it and move on to economic independence. POGO provides personalized supports with things like:

• matching career goals with abilities• providing tools and strategies to manage school work• facilitating scholarships • and linking survivors with the appropriate services and supports within colleges, universities or the community

Funding and Program Partners

The SAVTI program is being replicated by our Canadian and US colleagues—a tribute to its value and significance.

Our success would not have been possible without our many supporters, including Coast to Coast Against Cancer Foundation, TD Securities Underwriting Hope Charity Auction and our generous donors.

Program Impact

Last year, POGO's five SAVTI counsellors across Ontario worked with 234 new and 225 returning survivor clients to help them successfully complete high school and move on to post-secondary education.

Toronto's Vital Signs® indicator(s) addressed by Program

"High school and post-secondary graduation rates are rising in the Region; 56.7% of the population had a post secondary credential in 2012—up from 46% in 2000." (Toronto's Vital Signs, 2013)

Some childhood cancer survivors require an individualized approach to their education in order to overcome their particular psychosocial and learning challenges. POGO's SAVTI counsellors work with survivors and post-secondary institutions to create a flexible setting that sets survivors up for the same potential for success as their peers. 

Participant Vignette

My name is Fernando and I am 23 years old. I was diagnosed with a tumour when I was almost five. Since that time, I have had 2 major brain surgeries and 8 shunt revisions, but I still have a tumour in my head.

Over the years, my entries and re-entries into school were not easy. After my first operation, I had to wear a helmet because my skull was too sensitive and I couldn't risk being knocked in the head. As you can imagine, this disqualified me from sports. I was bugged, teased and never invited to events because the kids couldn't accept what I was going through. My right side suffered great nerve damage and the results were obvious. Kids were scared of getting to know the kid with cancer.

When I was in grade 11, tests showed that the tumour had started to grow. Worse still, it was no longer on the side of my head but had moved to a more dangerous position—behind my brainstem. I had to get a second major brain surgery which had its complications, including that I almost slipped into a coma because of the spinal fluid building up in my head.

It is no surprise that having a tumour and a couple of brain surgeries has affected me much more then socially:

  • I have had to learn how to use my left hand. I was originally right handed before my operation, but my entire right side has been damaged. 
  • My balance is awful. I swerve or bump into things; uneven ground is hard for me to navigate.
  • My working memory, processing speed and ability to comprehend have suffered because of the radiation to my head.
  • School is difficult. I cannot multi-task, it takes all of my concentration to complete the job at hand and I find it hard to listen and take notes at the same time.

My dream since I was a child has been to create video games. Now, with the help of Sarah, my POGO SAVTI counsellor, I am finally making that dream a reality.

  • I am currently finishing my first year in the Game Development Program at Algonquin College.
  • I am on ODSP and OSAP, as well as two cancer survivor scholarships and more bursaries to help finance my education.
  • I have an individualized study program that will give me special accommodations to manage my challenges (such as a note taker in class and extra time for tests and assignments).

And to end on a high note, my last round of radiation was in 2008 and I have been in remission ever since!

I am very grateful to the donors of the SAVTI program. Through your support of POGO, you are supporting survivors like me.

Underlying Care: Transformative Research

From its inception, POGO has posed a fundamental question: what do we need to know about childhood cancer to make the journey easier and to ensure the best possible life-long outcomes for patients and their families? Answering that question requires asking many more.

Knowing, for instance, how many children are diagnosed and treated in each hospital in the network, enables POGO to ensure that the healthcare team has the right mix of oncologists, nurses, social workers, pharmacists and other experts to meet the need. That same knowledge informs POGO’s decisions on where to establish its Satellite Clinics, and helps POGO to understand the health service utilization patterns of children with cancer compared with their peers.

Established in 1998, the POGO Research Unit (PRU) focuses on investigations of the trajectories of human lives, whereas clinical trials and other forms of biomedical research fall under the domain of other organizations, including POGO’s partner hospitals. The PRU focuses on health economics; patterns and outcomes of cancer in childhood; and the impact of cancer and its treatment on child development and on the well-being of families.

Conducted across many different disciplines, population-based research can be as transformative as biomedical research—and often leads far more swiftly to action, translating more immediately into improved care and better outcomes.

Some of this work is done by POGO’s staff researchers. POGO also provides fellowships and seed funding for independent researchers whose projects are identified as meriting further support.

The range of potential avenues of discovery—each with the potential to lead to others—is virtually limitless.

Young cancer patients flexing her arms with text that says right now there are 4000 kids battling cancer in Ontario.What You Can Do

Pediatric Oncology Financial Assistance Program

Activities a donation will support

Out-of-pocket costs for a family with a child in treatment are rising. Investment in this program will enable us to provide more financial assistance to more families in need. 

Donation impact

POGO is currently researching the question: Do families ever recover economically after struggling financially during their child's cancer treatment. POGO's financial assistance to families is meant to help offset this huge financial burden at the beginning before it becomes too unmanageable.

SAVTI (Successful Academic and Vocational Transition Initiative)

Activities a donation will support

The population that could potentially benefit from SAVTI services numbers close to 3,000. To secure the existing program and expand to meet the needs of this larger population of prospective clients, SAVTI needs committed resources. Moreover, it is POGO's hope that SAVTI can evolve to incorporate a "Junior SAVTI" which would reach back into elementary school and start working with young survivors when cognitive challenges first become problematic.

Donation impact

"I had doctors tell me I would never graduate high school. They said that I would never ride a bike. I can't ride a bike yet, but I graduated from high school." — Childhood cancer survivor

Gaining independence, developing social and personal relationships and making educational and employment decisions can be challenging for any young adult. Combined with the health issues and potential late-effects of treatment that some childhood cancer survivors must cope with, it can be particularly problematic. POGO works with this population to help them discover their career goals, move on to post secondary education and become part of the work force. 

POGO Research

Activities a donation will support

POGO provides fellowships and seed funding for independent researchers whose projects are identified as meriting further support.

Donation impact

Examples of research studies funded in teh 2015 fiscal year:

Ms. Lindsay Jibb: The Effectiveness of a Smartphone-based Pain Management System for Adolescents with Cancer

Ms. Iska Moxon-Emre: Anxiety and Depression in Survivors of Pediatric Brain Tumours; A Neurobiological Perspective

Dr. Greg Wells: The Pathophysiology of Exercise Intolerance in Children Following Hematopoietic Stem Cell Transplant

Contact

Kelly Zorzi
Communications Officer
416.592.1232 x252
Charitable Number: 871067245RR0001

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