POGO Childhood Cancer Data Informs New Cancer Statistics Reports
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!
Benefits of Home Visits for Families of Children with Cancer
A Reflection from POGO Interlink Nurses
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.
Read more about the POGO Interlink Community Cancer Nurses Program and watch this video.
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.
This reflection by POGO Interlink Nurses was written in September 2020, in the first few months of the COVID-19 pandemic.
Our Community and Partners Rally for POGO during COVID-19 Pandemic
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!
Peterborough Home to 8th POGO Satellite Clinic
New POGO Satellite Clinic brings care closer to home for children with cancer in Peterborough area
On Monday, September 24, the Pediatric Oncology (POGO) Satellite Clinic at Peterborough Regional Health Centre (PRHC) officially opened its doors to provide care for children with cancer right in their community.
For these patients and their families, care closer to home means a reduction in travel time, costs to receive care elsewhere are avoided, and less loss of income and separation from home and community, all while maintaining confidence that their child is receiving the best quality care.
“Having a POGO clinic close to us makes life as a parent a whole lot easier,” says Theresa Serracino-Inglott, whose son Anthony is currently receiving treatment at PRHC after being diagnosed with Acute Lymphoblastic Leukemia in August 2017. “Feeling financially strapped is a common thread among families of children with cancer, and these satellite clinics give some relief to that. I want to say how grateful we are to POGO and to Peterborough Regional Health Centre for taking on this partnership to bring a POGO Satellite Clinic to our community. I can’t help but think of future ‘POGO families’ in our area, and how the availability of this clinic will ease their journey.”
POGO now supports highly coordinated care at eight Satellite Clinics across the province, each linked to one of the five major hospitals with a pediatric cancer program. In addition to the benefits for patients and their families, shifting thousands of visits and hundreds of inpatient days to POGO Satellite Clinics each year provides additional capacity for specialized care in these hospitals’ pediatric cancer programs.
Read the media release
POGO Interlink Nurse Marilyn Cassidy Wins Caregiver Award
POGO Interlink Nurse Marilyn Cassidy is a recipient of a 2017 Canada Cares Professional Caregiver Award. In the 42 years that Marilyn has been a nurse, she has worked at CHEO for 24 of those years and has championed childhood cancer care as a POGO Interlink Nurse at CHEO for 19 years.
According to Marilyn, "One of the things I love most about my work is the daily opportunity and challenge of trying to make the difficult journeys for patients and their families even just a little bit easier in my role as a POGO Interlink nurse, as well as the definite privilege of working with the most amazingly resilient children and their families. I am probably most proud of the CHEO Buddy Program, Quality in the Community, that we have developed over the years. The program is supported by Camp Quality and we partner with the University of Ottawa medical students to provide buddies for approximately 20 patients per year. This program has brightened the days of so many of our patients, provides respite for parents and provides med students, our future physicians, with a wonderful perspective on the family experience during treatment."
Marilyn's nominators had this to say:
Marilyn is compassionate, her work is knowledge based, family centred and highly principled and she enriches each of us who are given the opportunity to work with her.
Marilyn’s work with the Interlink team involves advancing the quality of life for children with cancer and their families and forging diverse community partnerships including social services, parent groups and schools. She has been involved relentlessly in school support and reintegration for children and their siblings.
She has been a mentor to many over her 40-year nursing career, including nursing and medical students; preceptorship and teaching to the greater health care community with in-services, presentations and involvement in pediatric oncology research.
Families from CHEO who come to Toronto for care praise her gentle, kind, knowledgeable work. Families come prepared and supported and remain connected to her while they are away from their principle treatment centre. She is respectful and flexible and has an innate ability to understand the nature of being a child with cancer, a parent watching their child go through treatment, and the sibling who often feels left out. She goes above and beyond, advocating for families on a personal and community level, helping drive provincial policies.
Her work with POGO highlights her ability to see the big picture and her committee work is the driving force that keeps the work moving along. She identifies needs and gaps and works to find resources and supports to fill the gaps. Currently, she is involved in several initiatives in POGO’s Provincial Pediatric Oncology Plan that advances the existing childhood cancer system.
As her POGO Interlink colleagues, we value her ability to think outside the box and therefore advocate beautifully for the oncology patients. Her wisdom and drive not only benefit her patients but all children with cancer in Ontario.
Marilyn has so many qualities but I think her main strengths are sustained energy, creativity and a drive to never stop improving service to patients, families and the community. She is a natural leader, leading by example for us all to benefit. Marilyn is exceptional! I cannot think of a better person to aspire to and to acknowledge in this way.
Sally Casey
POGO Interlink Team Leader
Government of Canada increases duration of Employment Insurance compassionate care benefit
Excerpted from Government of Canada Press Release
The Minister also said today that the Government will work towards providing more generous leave for caregivers in the future. The Government has committed to making the compassionate care benefit more flexible, easier to access and more inclusive, she said.
Compassionate care benefits provide temporary income support to eligible individuals who must be away from work to provide care for a gravely ill family member at risk of death.
Effective January 3, 2016, the enhanced benefit, announced in 2015, allows claimants to collect up to 26 weeks of benefits, up from the current 6 weeks. Further, the period during which benefits can be taken is expanded to 52 weeks (up from 26 weeks). Benefits can be shared between family members.
Eligibility for compassionate care benefits remains the same, including the requirement for a medical certificate signed by a doctor attesting to the family member’s condition.
Corresponding changes to the Canada Labour Code will come into force at the same time to ensure that the jobs of employees in federally regulated enterprises remain protected while they avail themselves of compassionate care benefits under the EI program.
Related Topics
- Learn about the financial assistance POGO provides to families
- Visit Service Canada to get the most up to date information about Employment Insurance compassionate care benefits
Ontario Making Hospital Parking More Affordable
Ontario hospital parking discounts came into effect October 1, 2016!
On January 18, 2016 Ontario's Ministry of Health and Long-Term Care issued the following press release:
As of October 1, 2016, hospitals that charge more than $10 a day for parking will be required to provide 5-, 10- and 30-day passes that are:
- Discounted by 50 per cent off their daily rate
- Transferable between patients and caregivers
- Equipped with in-and-out privileges throughout a 24-hour period
- Good for one year from the date of purchase.
Ontario consulted with patients, patient advocacy groups, hospitals and the Ontario Hospital Association to find a fair plan that reduces the financial burden of parking fees for patients and their visitors.
Between now and October 1, 2016, hospitals will work directly with their Patient and Family Advisory Councils to implement this new policy, ensuring that it is well promoted and easy to understand. Each hospital will provide details on its specific parking policy and discounts.
Approximately 900,000 patients and visitors - including 135,000 seniors - are expected to benefit from reduced parking fees each year.
Saving patients and their loved ones money on hospital parking is part of the government's plan to build a better Ontario through its Patients First: Action Plan for Health Care, which is providing patients with faster access to the right care, better home and community care, the information they need to stay healthy and a health care system that's sustainable for generations to come.
" Parking fees should never be a barrier for patients when they go to the hospital. With today’s announcement, we are providing relief from the high cost of parking at some hospitals in Ontario. By making parking more affordable for patients and their loved ones who visit the hospital often, we are helping to reduce the burden of parking fees and putting patients first."
- Dr. Eric Hoskins, Minister of Health and Long-Term Care
" We are thrilled that our concerns around the high cost of hospital parking have been addressed in a meaningful way that will help defray the cost of hospital parking for families of children with cancer in Ontario. You heard our voices, included us in the consultation, and have come up with a plan that reflects that in a very positive way. Thank you."
- Susan Kuczynski, Member of Ontario Parents Advocating for Children with Cancer
QUICK FACTS
- The Ministry was pleased to have consulted with a number of hospitals and the Ontario Hospital Association in regards to parking fee changes in Fall 2015
- The Ministry will require other hospitals that do not own their own lots to make best efforts to influence their partners, like municipalities and private operators to cap or cut parking fees for those who must visit the hospital frequently.
- In Ontario 45 Hospitals currently offer free parking and 54 charge $10 or less per day. It is estimated that 36 hospitals charge more than $10 a day.
- The government is directing hospitals not to raise their daily parking rates for the next three years starting today.
RELATED LINKS
- POGO Financial Assistance Program
- "Rates Cut in Half for Frequent Hospital Visitors" Ontario Government Press Release, Oct. 3, 2016
- Ontario Ministry of Health: Patients First: Action Plan for Health Care
How our Family Changed the Day My Son was Diagnosed with Cancer
Our son Jonah was diagnosed with leukemia on October 29, 2014. Prior to that, we had been to see the doctor a couple of times for what seemed to be typical seven-year-old stuff. When he had headaches after being hit at hockey, we went to CHEO (Children’s Hospital of Eastern Ontario) where he was diagnosed with a concussion. Then when he complained of being tired all of the time, not wanting to eat and night sweats, we thought it was the flu and took him to the clinic. On the morning of October 28th, my husband John took Jonah to the lab to get his blood work done; the doctor wanted to check for anemia.
That night, I remember the clock beside the bed read 9:16 when the phone rang. My husband had just left for work and the kids and I were already in bed. The gentleman on the phone said, “Is this Jonah’s mom? This is the Dr. E from the clinic. I am calling because we got Jonah’s blood work back. You need to get up and take him to CHEO immediately. And I want you to remember the word platelets. Now repeat it.” I repeated the word. “Good. His platelets are at 13; one, three. I know that probably doesn’t mean anything to you, but Jonah needs to go to the hospital right now, do you understand?” I said that I did and he said, “Go now” and hung up.
Not even 30 seconds later Jonah walked into my bedroom and said, “Mum, I can’t take this sweating anymore.” It was pouring from his arms like an open faucet. I said, “It’s okay babe, we are going to go to the hospital right now.”
Everything shifted that night, even our family dynamic. It became all about taking care of Jonah. John is stepdad to Jonah and his brother Beaudin and we have a little girl, Maeve. The boys would typically spend every weekend in Kingston with their dad George, his wife Charlotte and her daughter Brooklyn. Jonah couldn’t do that anymore, we didn’t want to separate the boys and we were not willing to let any relationships slide, so George, Charlotte and Brooklyn often stayed at our house in Ottawa.
The usual daily routine quickly became more complicated. We adjusted our schedules and took time off work to accommodate caring for Jonah, school drop off and pick up for Beaudin, and childcare for Maeve. All day treatment meant all day parking and meals at the hospital, gas back and forth, and unexpected daycare costs. And having three new people in the house made mealtime and housework chaotic.
It was definitely a challenge blending the two families, but we had to or it just wouldn’t have worked for the kids. Everybody had their own stressor. For me it was fear of the unknown all of the time; George became obsessed with staying on top of the laundry; Beaudin had to deal with lots of questions at school; and Maeve went from one day in daycare to five because we needed the security of knowing the baby was safe and taken care of. It was the hardest thing our family has ever gone through—emotionally, physically and financially—but it has brought the eight of us closer together, especially the kids, and Jonah is the hub. He knows he has a couple of years left of treatment but he never seems defeated. He is so mature for his age. This experience has made him wise beyond his years.
—Satara Stephens
P.S. I would like to thank Marilyn, our POGO Interlink Nurse for being such a huge support to our family. Marilyn even spoke to Jonah’s class to help them understand what was going on and make things easier for Beaudin at school. I would also like to thank POGO and everyone who donates to the financial assistance program—it lifted a huge burden at a time when we needed all the help we could get.
Life After Childhood Cancer – A Conference for Survivors
From setting life goals and dealing with the long-term health effects of treatment, to telling a new love interest about their experience with cancer, survivors of childhood cancer may struggle with many issues.
From October 16 – 18, 2015, POGO and Camp Oochigeas will present Life After Childhood Cancer, the third POGO survivor conference to address key issues survivors themselves have identified as being important to their health and well-being.
Matthew is a proud high school graduate, a college grad and a survivor. He has ongoing physical and cognitive challenges brought on by his disease and its treatment. He has difficulty with fine motor coordination, and a hard time listening and translating that information on paper. But he is driven to succeed and perseveres. Instead of taking notes by hand, he uses a laptop. If he doesn’t understand something, Matthew has no problem asking for help or researching until he figures it out. Matthew will attend the survivor conference for the first time this year.
“I’m looking forward to the survivor conference,” says Matthew. “I'm curious to hear from other survivors about their experiences and to share mine.”
In past years survivors of all ages have attended the conference and say it has helped them to better answer questions from others who have not experienced cancer.
“The conference aims to address educational and information needs in the context of social and recreational interaction – a combination we have found addresses survivors’ needs in a unique fashion, directly applicable to their daily life,” says Dr. Mark Greenberg, Senior Adviser, Policy & Clinical Affairs at POGO.
Practical approaches to their issues, like fertility and the disease’s impact on their families, are presented by leading experts, and also by other survivors. Survivors leave the conference knowing what questions to ask of their family doctor, who may never see another survivor in their practice.
“I’m happy that some sessions are run by other cancer survivors because it’s good to know I’m not the only one going through this,” says a past conference participant.
As for Matthew, his list of questions is building.
“I'm very interested to see what I can learn that will help me in the future,” he says.
While no one wants to think about cancer after they have beaten it, the thought of attending Life After Childhood Cancer would be one that is not wasted.
Get details about the 2015 Ooch/POGO Survivor Conference.
PBS Cancer Documentary, Part 3
Wednesday's episode: 6-year old Emily has leukemia and Doug Rogers, a 60-year-old NASCAR mechanic with melanoma. Each is a pioneer in new immunotherapy treatments. Both see their advanced cancers recede and are able to resume normal lives.
This episode picks up the story at another moment of buoyant optimism in the cancer world: Scientists believe they have cracked the essential mystery of the malignant cell and the first targeted therapies have been developed, with the promise of many more to follow. But very quickly cancer reveals new layers of complexity and a formidable array of unforeseen defenses. In the disappointment that follows, many call for a new focus on prevention and early detection as the most promising fronts in the war on cancer. But other scientists are undeterred, and by the second decade of the 2000s their work pays off. The bewildering complexity of the cancer cell, so recently considered unassailable, yields to a more ordered picture, revealing new vulnerabilities and avenues of attack. Perhaps most exciting of all is the prospect of harnessing the human immune system to defeat cancer.
Tune in to Cancer: The Emperor of All Maladies, 3-part documentary
Airing on PBS, 9 - 11 p.m. (Check your local listings)
Monday, March 30 - Magic Bullets
Tuesday, March 31 - The Blind Men and the Elephant
Wednesday, April 1 - Finding the Achilles Heel
This three-part film tells the comprehensive story of cancer, from its first documented appearances to the modern-day fight for a cure. Based on the Pulitzer Prize-winning book by Siddhartha Mukherjee, Ken Burns' film weaves together a captivating historical narrative with intimate stories about contemporary patients, and an investigation into the latest scientific breakthroughs that may bring a cure within reach.
Learn more at www.pbs.org.
Purchase the series at www.shoppbs.org.
Watch Katie Couric interview Mukherjee and Burns on Yahoo News.
