By: Cynthia O’Halloran
Once upon a time, when virtual races were first making their debuts on the running scene, I scoffed at them. “Why would anyone want to do a virtual race?” I wondered. “What’s the point? You’re still running on your own and I do that all the time. I can push myself to run a fast 5K any time I want without wasting my money.” At that point in time, to me, the whole premise behind virtual races was a money grab.
Fast forward to the spring of 2020 when race after race was cancelled. The goals that we had been targeting simply vanished into thin air. My post-injury hashtag #trainingtotrain became #trainingfornothing. While my dedication to my sport was there, my enthusiasm to train without a foreseeable goal race was not. It wasn’t long before I found myself thinking about virtual racing.
“Do I really need to spend money on something like this? I don’t need a t-shirt or another medal.” But the more I thought about virtual racing, the more I realized that my participation was not really about me. It was about supporting the running community.
“In the same way that we support small businesses,” I told my husband, “we need to support the race directors. Racing is their business. And they have been good to me. There are so many races that have helped me become the runner that I am today. Their race directors are struggling right now so supporting them by registering for a virtual race is the right thing to do.”
The more I spoke with Dave about this, the more I understood virtual races. “And they help charities too. Hundreds of charities depend on fundraising from road races. Right now, that isn’t happening and charities are being hit financially. So a virtual race helps the race organization and a charity. It’s a win for both.”
After making a decision that I never would have a few years ago, I registered for the Toronto Women’s Run Series Virtual 10K, one of three races in a series directed by Cory Freedman. This a major fundraiser for POGO (Pediatric Oncology Group of Ontario); as a parent of a brain cancer survivor, I know how important supporting this charity is. This race also holds a special spot for me as it is one of the first women’s only events designed to encourage women as runners and walkers. For me personally, the races helped build my confidence as a female athlete and motivated me to starting chasing my dreams. So, in my eyes, the Toronto Women’s Run Series 10K was one event that I just had to support.
I registered and ran, not raced, on the following Saturday. I ran longer than I needed to (11.25K) and my average pace was slower than my 10K race pace, but I didn’t care. I felt good. I was supporting the running community and helping a charity. But what I didn’t expect when I registered was the happiness that I felt from finishing, from being reconnected to the racing scene – even if it is a virtual one.
As runners, we are use to giving back and now is not the time to stop. Race organizations are trying to stay on their feet and, quite frankly, we need them to survive if we want to return to racing in a post-pandemic world. The charities they support also need our help. So if you are able, find a virtual race and register for it. Pick one that means something special to you or supports a charity you value. Perhaps you’d rather race virtually in some faraway place where you have always dreamed of visiting. Or consider making a donation to a local charity that your favourite race supports. Now, more than ever, is the time for the running community to come together.
This blog was originally published on www.cynsspace.com where you can find more stories from Cynthia about running, cycling and self care.
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!
A Reflection from POGO Interlink Nurses
The COVID-19 pandemic transformed our work in such a way that we see, clearer than ever before, how essential traditional home visits are in supporting families through their child’s cancer diagnosis. Currently, virtual visits are the norm and are taking place by phone or on video conferencing platforms like Zoom and the Ontario Telehealth Network. POGO Interlink Nurses are the healthcare team members who connect the family to important hospital and community supports—including school*—so it makes perfect sense that in-home visits are integral to our work. In fact, we rely on these visits to establish a connection with our patients, their siblings and other family members in a more meaningful way and in a safe place, which is especially important for siblings.
But just as important, the home visit is a critical part of determining how the family is doing. Home visits typically allow us to use observation and our assessment expertise to gain greater insight to a family’s circumstances which cannot be duplicated in virtual visits. Being in a family’s environment gives us a glimpse of how their lives are at the time and what added stressors they may have. The broad range of factors, including social, economic, cultural and psychological that influence family coping and their adjustment to a child’s cancer diagnosis can be observed in a home differently from meeting in any other environment.
Family structure, poverty and access to resources can reveal themselves (literally) and avoid the need for us to ask questions that might be misconstrued as “intrusive.” Still, we believe that many parents will share more readily when we are sitting with them in their home. Also, it is during the home visit when we might see that, for example, three family members are sharing the same bed or there is mould growing in the bathroom. We come to better understand that a family might have difficulty getting their ill child to clinic because they do not have access to transportation or there’s an elderly or sick grandparent in the home who cannot be left alone. The home environment provides context for setting up teaching. It can tell us if the family is able to cope with the complexity of home drug administration, like chemotherapy; palliative care for a dying child; or providing supportive care to help prevent and manage any adverse effects of the child’s cancer and its treatment.
Home visits, where we’re all face-to-face, also makes it easier and more efficient to complete and collect documents and application forms. This is especially critical when families have an urgent need to access financial support.
Since COVID-19, we have embraced and adjusted well to virtual visits to bring nursing and psychosocial care to our families, but there are challenges. Seeing a child and assessing their general physical well-being is not easy. We can teach virtually, but our use of teaching aids does not work well from a distance. For example, we can show our teaching dolls, but playing with them in a way that allows mom or dad to become familiar with central line devices is tricky. And though many young parents are embracing virtual care, it is more difficult for those for whom English is a second language or when families have less access to technology.
We anticipate and look forward to home visits because we know they have many benefits for children and youth with cancer and their families.
*This fall, the return to school for children with cancer will require extra support as families navigate the complexity of COVID-19. POGO Interlink Nurses will advocate for specific accommodations for patients unable to return to school, for families who are choosing to opt-out of in-person learning and for those reintegrating into the classroom setting.
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!
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 email@example.com and we’ll help you get started!
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.”
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.”
To date, discussions about accepting a survivor have been completed with 88 primary care practices and are underway with another 67 across Ontario, including many serving northern, rural and remote communities.
Researchers tell us that up to 80%* 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 2014, there were an estimated 17,750 childhood cancer survivors living in Ontario. And right now, about 1 in 500 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.
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.
*Nathan 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