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POGO > Articles by: Claire Slaughter
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Author: Claire Slaughter


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Surviving Childhood Cancer: From Confidence Buster to Confidence Builder

Posted on December 16, 2020 by Claire Slaughter

By Barb Williams


It is surprising to many to hear that childhood cancer does not end with “being cured.” Childhood cancer and brain tumour survivors can develop learning difficulties resulting from their disease or treatment. These late effects may be further complicated by long-term physical effects, as well as emotional problems and mental health issues. It is easy to see how and why these young survivors face struggles in the worlds of work and school. Despite their physical and cognitive challenges, childhood cancer survivors have high aspirations for themselves and are motivated to achieve their goals. The POGO Transitions Program was developed as the result of parents’, patients’ and doctors’ concerns about young students, many with invisible disabilities, falling through the cracks at a critical time in their academic lives—graduating high school and moving on to college, university or work.

The Ups and Downs of Disclosing That You Are a Childhood Cancer Survivor

I want to point out that not all survivors struggle to meet their academic and professional ambitions. For some, the obstacles they experienced due to their childhood cancer have helped build their resilience, discipline and confidence. But there are a significant number of childhood cancer survivors who are grappling with emotional and mental health issues, including anxiety, depression, low self-esteem, low confidence and self-worth—sometimes accompanied by social isolation and bullying. And these issues, as much as their learning challenges, can severely impact their ability to achieve their goals and become independent young adults.
As one of five POGO Counsellors across the province, it is my job to strengthen my clients’ confidence through realistic goal planning and facilitate their transition to post-secondary school and work. While there is a practical element to this in terms of job preparation and academic pathway information and navigation, there is often an emotional component. This is to say, I provide early guidance and career planning, help clients access the appropriate accommodations for school and work, and work with them to ensure their dreams and goals align with their strengths and skills. However, my colleagues and I also help our survivor clients address self-confidence and anxiety issues by listening without judgment and showing we care, and when further psychosocial intervention is required, we make the appropriate referrals. This one-on-one emotional support and encouragement POGO Counsellors provide is highly valued by survivors, as well as their family members who support them.

Sam’s Story: Focusing on Ability, Not Impairment

When I describe my job as working with childhood cancer survivors who experience challenges with school or work as a result of their disease or treatment, the most common reaction I get is how it must be such difficult or depressing work.  On the contrary; I get to meet young people on their journey of surviving childhood cancer and planning for their futures, even if there are obstacles to overcome. We envision their next steps and talk about their dreams. I get the opportunity to engage with them in something positive, and if they are not feeling positive, there is a chance, with the rest of the healthcare team, to intervene and set them up for success. These are the things that make our Program so unique, so important and so uplifting. The most exciting thing for me as a POGO Counsellor is to watch my survivor clients’ self-confidence and ability to advocate for themselves increase, witness them rise to challenges they didn’t think themselves capable of, and see them achieve their goals and aspirations.


Barb Williams is the Provincial Coordinator and POGO Counsellor in the Hamilton area for The POGO School and Work Transitions Program (POGO Transitions Program). The Program facilitates a smoother transition for childhood cancer and brain tumour survivors moving on from high school to appropriate post-secondary and work opportunities. This post is based on Barb’s professional experience and the 2020 report The Transition to Meaningful Activity for Childhood Cancer Survivors: Understanding the Role of The POGO School and Work Transitions Program.

Posted in In the News | Tagged childhood cancer survivors, POGO Counsellors, The POGO School and Work Transitions Program

POGO Childhood Cancer Data Informs New Cancer Statistics Reports

Posted on September 4, 2020 by Claire Slaughter

This year, POGO data will inform three Canadian cancer statistics reports—an important milestone in POGO’s efforts to monitor and publicly report on the impact of childhood cancer in Ontario, in alignment with one of the five goals of our Childhood Cancer Care Plan 2018-2023.

Later in September, for Childhood Cancer Awareness Month, POGO will release Childhood Cancer in Ontario: The 2020 POGO Surveillance Report, an update of our comprehensive and detailed provincial childhood cancer surveillance statistics. This report continues to confirm that Ontario’s childhood cancer survival rates are among the highest in the world and that all types of childhood cancer are rare (less than 6 per 100,000 children per year). It also provides information about the number of Ontarians each year who were diagnosed with cancer as children (prevalence). In addition to updating the data and trends, new details about cancer subtypes and age groups have been added.

August 2020 marked the first-ever inclusion of childhood cancer statistics, generated based on analyses by POGO from data in POGONIS (POGO’s childhood cancer database), in the Ontario Cancer Statistics report, which was released by Ontario Health (Cancer Care Ontario). This report provides a comprehensive summary of the burden of cancer in Ontario residents of all ages and helps to answer vital questions such as: What types of cancer occur in children in Ontario as compared to adults? How does childhood cancer, mortality and survival compare to adult cancers?

In addition, POGO continues to collaborate with the Public Health Agency of Canada by providing timely and high-quality childhood cancer data from POGONIS to populate the Canadian childhood cancer surveillance database, Cancer in Young People in Canada (CYP-C). This ensures that the Ontario childhood cancer population data is included in national reports, such as the CYP-C Data Tool, to yield key information, such as how childhood cancer incidence in Ontario compares with other provinces/territories and Canada overall.

POGO ensures that the latest, high-quality childhood cancer data from POGONIS is available to generate childhood cancer statistics for use by healthcare professionals, researchers, system and program planners, and policy- and decision-makers to help drive an effective childhood cancer care system. By working in partnership with organizations like Ontario Health (Cancer Care Ontario) and the Public Health Agency of Canada, as well as with the hospitals that treat children with cancer in Ontario, to monitor and report on the burden of childhood cancer in the province, POGO aims to achieve the best childhood cancer care system for children, youth, their families and survivors in Ontario and beyond.

We hope you find these reports to be helpful references in your efforts to champion childhood cancer care!

Posted in Data Reports, In the News | Tagged Cancer Care Ontario, Ontario Cancer Statistics, Ontario Health, POGONIS database, Surveillance Report

Our Community and Partners Rally for POGO during COVID-19 Pandemic

Posted on September 4, 2020 by Claire Slaughter

Since late March, POGO has had to pivot along with our partners as the new reality of COVID-19 set in. For our partners, adapting to this new normal meant thinking of new ways to bring people together safely and changing the way to raise funds in support of childhood cancer. The outcome is an overwhelming display of community involvement to champion childhood cancer care.

POGO has been working to reduce the impact COVID-19 is having on the childhood cancer community. A video campaign featuring POGO Associate Medical Director Dr. Paul Gibson explains how, even though much of our lives has been put on hold during the pandemic, chemotherapy, surgery and radiation therapy continue for children with cancer. COVID-19 placed an even greater strain on families already dealing with their child’s cancer diagnosis. Our community rallied around our call for support and raised more than $21,000 to help offset the increased financial strain families will face.

The Toronto Women’s Run Series is a long-time POGO supporter, offering racing events to inspire, motivate and allow women to set their own pace. Because we have been unable to connect in person, the originally scheduled Half Marathon/10k/5k at Sunnybrook Park was the first event in the run series to go virtual. From May 17 to June 7, 2020, more than 1000 runners from far and wide crossed the finish line virtually and surpassed our fundraising goal by raising more than $20,000 for childhood cancer care! We await the results of the Virtual 10k/5k Run that ended September 7 and the Virtual 8k/5k Run takes place October 24 – November 14, 2020, so register today!

Read one runner’s perspective in “The Value in Virtual Racing”

Our friends at Good Hood Club brainstormed different ways to support children with cancer, survivors and their families during lock down. The student-run loungewear company reached out to their network and created Good Hood Care Kits for children receiving treatment in POGO Satellite Clinics. Kits are full of homemade cards, fun crafts and other goodies made by members of the Good Hood community to put smiles on children’s faces.

Bruce Power connected with its partners in the nuclear supply chain to lend a hand to charitable organizations continuing to help people during the pandemic. The 2020 Charitable Events Sponsorship Program is benefitting POGO and several other organizations throughout Ontario. This collective support helps ensure access to the best possible care and support for everyone affected by childhood cancer during these challenging times.

LINKED for Life was created by POGO’s Survivor to Survivor (S2S) Network facilitators to raise both awareness about the late effects survivors face and funds in support of POGO. The goal is to create a visual representation of the connection between the childhood cancer community and those who support it. Colourful paper links will be hung at six participating hospitals during Childhood Cancer Awareness Month in September. Show your own support by purchasing your own link ($5) and sharing #LINKEDforLife on social media.

POGO is grateful to our strong network of childhood cancer champions. By thinking creatively and relying on the kindness of one another, we are able to ensure the continuity of the programs that benefit children with cancer, youth, their families and survivors in Ontario.


Have a great idea for a fundraiser in support of childhood cancer care? Contact us at events@pogo.ca and we’ll help you get started!

Posted in In the News | Tagged Bruce Power, Good Hood, Linked for Life, third-party events, Toronto Women's Run

POGO Connects Childhood Cancer Survivors to Much-Needed Primary Care

Posted on June 30, 2020 by Claire Slaughter

Many childhood cancer survivors attending a POGO AfterCare Clinic report that they do not have a primary care practitioner. In fact, survivors are concerned that because childhood cancer is a relatively rare disease, most primary care practitioners are unlikely to have expertise in managing the late effects of treatment.

The main purpose of POGO AfterCare Clinics is to provide follow-up care for survivors of childhood cancer to ensure appropriate monitoring of long-term and possible late effects associated with the original disease and its treatment. Most survivors are seen in POGO AfterCare Clinics only once a year. But for many, particularly those living in rural or remote communities, even once a year is a challenge. 

“It is critical that every survivor of childhood cancer has a family doctor,” says Dr. Stacey Marjerrison, POGO AfterCare Program Director, McMaster Children’s Hospital. “The POGO AfterCare Clinic team is focused on the late effects of the treatment, while the family doctor is focused on all aspects of wellness. If we identify any important late effects, like heart or lung problems, we need to be able to work with the family doctor to make sure the childhood cancer survivor continues to get the best care through their lifetime.”

POGO AfterCare Aims for Shared-care Partnership with Primary Care

Following an extensive consultation, POGO, through its Childhood Cancer Care Plan: A Roadmap for Ontario 2018 – 2023, defined a strategy to engage primary care practitioners and family health teams in the care of childhood cancer survivors. Beginning in 2019, the seven POGO AfterCare Clinics began a coordinated and concerted effort to make these connections. The goal is a shared-care partnership, fostering two-way communication and support between the primary care practitioner and the survivor’s AfterCare team, with the latter providing information and education about childhood cancer and its potential late effects.

“As a childhood cancer survivor, my health care is often complex,” says Kirsten, a young adult, who attends the POGO AfterCare Clinic at Toronto’s Princess Margaret Cancer Centre, 50 kilometres from her home in Brampton, Ontario. “The long-term side effects of chemo aren’t 100% known. The POGO AfterCare Clinic team is specialized to look at the drugs that I took during my treatment and allows me to receive testing and screening that might anticipate late effects. This allows my family doctor to focus on my general health and wellbeing. Without either side of my medical team, I would not be able to ensure I’m receiving optimal care.”

UPDATE: Dedicated staff across the POGO AfterCare Clinics have completed discussions with 131 primary care practices about accepting a survivor. Many of the participating primary care practices serve northern, rural and remote communities.


Caring for Survivors Increasingly Important as Population of Survivors Grows

Researchers tell us that up to 80%1 of childhood cancer survivors will experience at least one or more chronic health conditions by age 45 due to treatment they received to cure their cancer. As early as the 1950s, clinicians began to see that many more children were beating cancer, but that was only half the battle. Children treated for a childhood cancer were surviving only to develop significant therapy-related health problems later in life.

With the increasing success of childhood cancer treatments, caring for the growing survivor population with their unique healthcare needs becomes even more important. From the POGO Surveillance Report, we know that as of 2017, nearly 20,0002 children and youth in Ontario are survivors of childhood cancer. And right now, about 1 in 460 adults between the ages of 20 and 39 years is a childhood cancer survivor. As this population ages, their health care needs related to treatment late effects will rise.

The History of POGO AfterCare

In early 2001, POGO launched a network of survivorship clinics located in London, Hamilton, Toronto, Kingston and Ottawa for pediatric and adult survivors of a childhood cancer. POGO AfterCare Clinics, staffed by oncologists, nurses and allied health professionals, provide long-term follow-up care, including clinical examination for signs and symptoms of late effects, recommending tests such as an echocardiogram for possible heart problems in patients who received certain therapies, and referring survivors for breast and/or colorectal cancer screening based on clinical practice recommendations that take into account their cancer treatment history.

1Nathan PC, Agha M, Pole JD, Hodgson D et al Predictors of attendance at specialized survivor clinics in a population-based cohort of adult survivors of childhood cancer. J Cancer Surviv 2016

2Alive at least five years, or close to 5 years, after diagnosis.

Posted in Misc | Tagged AfterCare, childhood cancer survivors, POGO AfterCare Clinics, survivorship

Identifying Increased Risk for a Cancer Predisposition Syndrome

Posted on September 13, 2019 by Claire Slaughter

This POGO-funded research is helping children with its early detection of cancer predisposition syndromes.

Approximately 10% of children diagnosed with cancer have an underlying cancer predisposition
syndrome (syndrome), a condition (often inherited) that increases their risk of developing one or many cancers throughout their life. Genetic testing can be used to identify children with a syndrome, but to avoid unnecessary testing and possible delays, physicians need a way to determine which children to test.

There are over 125 syndromes known to be associated with cancer in children. In some cases, knowing whether a child has a specific syndrome will change the treatment. Identifying a syndrome also allows the healthcare team to develop a care plan to monitor the child for future cancers once treatment is complete, and to recommend monitoring for siblings.

In 2017, Dr. Catherine Goudie was awarded a POGO fellowship for her project “Identifying Children at Increased Risk for a Cancer Predisposition Syndrome: The McGill Interactive Pediatric Oncogenetic Guidelines.” Overseen by principal investigators Dr. David Malkin and Dr. William Foulkes, the project aims to develop an e-Health tool that doctors can use to help them decide which children should be referred for genetic testing.

Related Story : A Genetic Mutation: A Lifetime of Cancer Screening

Prior to becoming a POGO Fellow, Dr. Goudie and her team in Montreal spent three years building
approximately 90 algorithms for each type of childhood cancer. These yes/no questions relate to
items such as the age of the child, features of the tumour and family history. The first version of the
tumour algorithms was reviewed by genetic and oncology experts from Canada, the United States
and the United Kingdom.

The aim of the POGO-funded research was to support Dr. Goudie in her work to evaluate the performance of the tool with children at 11 Canadian hospitals. The evaluation was split into two streams.

Dr. Catherine Goudie, MD, FRCPC

“Our first priority was making sure this tool would do no harm,” says Dr. Goudie. “In order to do this, we looked at patients in Canada who have already been diagnosed with a cancer predisposition syndrome and who developed a cancer in childhood, meaning their physicians successfully identified the syndrome without our tool. We confirmed that our algorithms would have identified these children for genetic referrals at the time of their cancer diagnosis, therefore confirming that the tool performs at least as well as clinicians have.”

The second stream of the evaluation is ongoing and leverages precision medicine research at The Hospital for Sick Children and other hospitals in Canada and the US. These institutions are doing comprehensive genetic sequencing on pediatric cancer patients, meaning that all children undergo genetic evaluation regardless of whether they are suspected to have a syndrome.

“We will test our algorithm on the medical profiles of these children to determine if the tool indicates that the child should be referred for genetic assessment. We will then compare our results with those obtained from the patients who participated in the comprehensive genetic sequencing. Therefore, we are prospectively testing the performance of our tool.”

Dr. Goudie explains that, in most hospitals worldwide, the facilities, human resources, infrastructure, expertise, or funding to offer comprehensive genetic testing in all kids diagnosed with cancer are not available. Ultimately, the goal of the tool is to give children with a syndrome the opportunity to be diagnosed and treated appropriately. In addition, the tool can be used to educate medical professionals around the world.

Dr. Catherine Goudie received a prestigious clinical investigator award from the FRQ-S in Quebec and returned to Montreal in July 2018 to continue this research as a collaboration between the Montreal Children’s Hospital and The Hospital for Sick Children. The FRQ-S is a government organization that, annually, funds select clinician investigators in Quebec to do health research.

“For someone young like me, who doesn’t have a lot of experience, having POGO to support my work was a huge stepping stone. I am certain that POGO’s support and the credibility that this organization has internationally, helped me get this next award in Quebec. I am really grateful for this opportunity.”


This story was featured in POGO’s 2018 Community Impact Report.
Check out and download the MIPOGG App now.

Posted in Misc, Research | Tagged cancer predisposition syndrome, genetic sequencing, research, research grants

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