How the Germ of an Idea Spread in a Community
By: Dr. Jodi Rosner
The idea for the Kitchener Kids with Cancer Run/Walk came to me while I was running in my first half marathon in 2013. These races can be very inspirational. There are people cheering at the side of the road encouraging the runners with signs like, “Smile if you don’t have underwear on” and “The pain goes away, but electronic results last forever.” Although these signs put a smile on my face, my personal reasons for completing the race were all the memories of the kids I have been blessed to meet in my role as a pediatric oncologist at Grand River Hospital. If they could endure what we put them through when they are fighting cancer, then surely I could make it to the end. The idea to organize a race to raise money for children with cancer came to me that day, growing with each kilometre, and by the time I crossed the finish line, I had the beginning of a plan.
In 2014, the first Kitchener Kids with Cancer Run/Walk took place at the back of the hospital in the doctors’ parking lot. We had about 135 participants and we raised $17,000 in support of POGO and the services they provide to our young patients and their families. We thought this was a great success. Little did we know that this race would grow to be a huge event, touching the lives of many in the community.
We have since outgrown the hospital parking lot. The race now takes place at the Waterloo Region Museum, attracting close to 600 participants. To date, we have raised over $350,000 for POGO. It is incredible to see how a community can come together to fight for such a great cause. This race has turned into a way to support the kids who are currently fighting cancer and to remember those who have lost their battle. I am thankful to all of the families that I have had the pleasure of caring for and for the wonderful committee members who are the real reason that this race is such a success.
The 2022 Kitchener Kids with Cancer run takes place on Sunday, September 11. Everyone is welcome and we look forward to seeing you all there. Learn more at www.kwrunforpogo.com
In 2018, Dr. Rosner was recognized as a valued partner with a Friends of POGO Award. Learn more.
Parent-Child Communication When a Child Has a Life-Threatening Illness
An interview with Eric Bouffet, MD, FRCPC and Ceilidh Eaton Russell, PhD(c), CCLS
A Swedish study published in 2004 looked at 429 parents who had lost a child to cancer and asked the questions: Did you talk to your child about the fact that they were going to die? If so, or if not, do you regret your decision? Although only 147 parents had that difficult conversation with their child, none of them regretted it, while 27% of parents who did not talk with their child about death regretted not doing so.
In 2018, POGO issued a seed grant to principal investigator Dr. Eric Bouffet and co-investigators Ceilidh Eaton Russell and Dr. Adam Rapoport to interview parents and children in order to learn how they talk together about the child’s illness, its impacts on their lives, their feelings and worries, including their feelings about dying if the child’s prognosis is not good.
POGO: What have you seen in your interactions with families who are dealing with a critically ill child?
Dr. Bouffet: What we see in our clinical practice is that while some parents are very open about talking to their child who has cancer, others don’t even want to use that word and they will tell the oncology team, “Don’t tell my child they have cancer.” At the same time, often the child knows and they will say to the child life specialist, or even the therapeutic clown, “I have cancer” or “I know I am going to die,” followed by “don’t tell my parents that I know.” Some children will even talk about when they will get their driver’s license or when they will get married. They are imagining a future they know they might never have, but also, they are trying to comfort their parents. Each party is trying to protect the other, so there is this mutual pretense.
Ms. Eaton Russell: Many parents who are able to talk openly with their child about their cancer diagnosis—even when the prognosis isn’t good and the child is aware they are going to die—often glow when they recount the conversations. They say that the time they spent together was meaningful and that they were able to offer some peace to their ill or dying child. At the other end of the spectrum, there are many families who cannot manage these tough conversations around end of life, and for some of them, when I see them months or even years after their child has died, the angst is palpable.
Related Story : Dying Without a Voice – Communication When a Child Can No Longer Speak
POGO: Your study interviews parents and children. How do you get children to open up about what is happening to them when they might not have the words?
Ms. Eaton Russell: We have this activity book with beautiful illustrations to help kids communicate. They can demonstrate how they feel about what is happening to them or they can tell the story as though it is happening to someone else so it does not feel as threatening. It is very informative for both us and for the children.
POGO: What does this funding mean for your clinical practice? What are you hoping to accomplish with this research?
Dr. Bouffet: It is about quality of life—today, but also for the future of this family and how they will feel when they reflect about the time they spent with their child at what is probably the most intense period of their lives.
Ms. Eaton Russell: I hope we can develop some strategies to help families who are struggling with this topic begin to talk openly with their critically ill child, regardless of the child’s prognosis. It would be great to develop some tools to train frontline staff to encourage families to have these difficult conversations. Potential future research could be piloting workshops for families or piloting a clinical role to work directly with the oncology team and the family to focus on supporting open communication between parents and their sick or dying child.
Dr. Bouffet: Research, particularly in a university or hospital setting, is typically labs, equipment and people who are making fabulous discoveries, but there are also very important needs for the psychosocial aspects of illness. Not all funding agencies are supportive of qualitative research, so this POGO seed grant is fantastic because even if it’s not going to “save lives,” it has the potential to make significant change in the quality of life of the families and patients we treat. I am very grateful to POGO for supporting this type of research; it can have a big impact on our practice.
POGO: What kind of impact has it had on you personally?
Ms. Eaton Russell: Childhood cancer treatment, especially when end of life is a reality, can be such an intimate time and an opportunity for meaningful connections. It is a real privilege to learn from families and to be able to share what I’ve learned to help other families make the most of the time they have together in a different way than they might have otherwise.
Dr. Bouffet: The results of this research can give healthcare providers more confidence when we speak to patients and families about their critically ill child, and so it must be shared. We often “do not have the guts” to tell the truth, but we have learned through our interviews that it is critical for children to be able to talk to someone and share their thoughts and fears. It is also critical for parents to be informed. Much of this knowledge is new and can change our practice.
Dr. Eric Bouffet is a professor of paediatrics at the University of Toronto, Garron Family Chair in Childhood Cancer Research and Head of the Neuro-oncology Section in the Division of Haematology/Oncology at SickKids in Toronto.
Ceilidh Eaton Russell is a researcher trained as a chid life specialist at SickKids and is Director of Research and Evaluation at the Dr. Jay Children’s Grief Centre.
Bruce Power to support Brain Tumour Foundation of Canada, Pediatric Oncology Group of Ontario through Ontario Hockey League partnership for 2019-2020 season
TIVERTON, ON – November 1, 2019 – Bruce Power will continue its sponsorship agreement with the Ontario Hockey League (OHL) for the 2019-20 season by highlighting its support of Brain Tumour Foundation of Canada and the Pediatric Oncology Group of Ontario (POGO).
Through its partnership, Bruce Power will sponsor games in 16 OHL communities during the regular season to raise awareness around Brain Tumour Foundation of Canada and POGO. Both organizations will have an opportunity – through splitting the 16 games - to set up information/awareness kiosks inside the arenas on their respective game nights while the teams will promote POGO, Brain Tumour Foundation of Canada and Bruce Power on its social media channels and through their in-game promotions.
“Since becoming a partner of the Ontario Hockey League in 2017, we’ve been able to work with the league and teams on charitable initiatives that help raise awareness around the important work being done by the Brain Tumour Foundation of Canada and POGO on behalf of cancer patients and their families across Ontario,” said James Scongack, Executive Vice-President, Corporate Affairs and Operational Services. “Supporting these two organizations is an extension of the work our employees are doing in providing the world with medical isotopes that are used every day in the diagnosis and treatment of cancer.”
OHL Commissioner David Branch says the league and its teams share Bruce Power’s commitment to making their communities better places to live through charitable programs.
“The Ontario Hockey League greatly appreciates the work being done by our partners at Bruce Power and their support of these two great organizations that help countless people in our communities,” Branch said. “Cancer impacts everyone and this charitable effort will raise a great deal of awareness league-wide.”
Brain Tumour Foundation of Canada didn’t hesitate to participate in the Bruce Power-sponsored games, having seen an increase in awareness around the organization and its programs with its presence at OHL games last season.
“For 37 years now, Brain Tumour Foundation of Canada has funded brain tumour research while providing the brain tumour community with emotional support, access to accurate information and a connection to others facing this challenging disease,” said Susan Marshall, Chief Executive Officer, Brain Tumour Foundation of Canada. “We’re grateful to Bruce Power, the Ontario Hockey League and its clubs for allowing us to tell our story to hockey fans throughout the province.”
Like Brain Tumour Foundation of Canada, POGO works in several OHL communities and is taking advantage of the opportunity to tell its story to major junior hockey fans.
Each year in Ontario, there are over 4,000 families with a child in cancer treatment or follow-up care. More than 86 per cent of children diagnosed with cancer will survive. Nearly 60 per cent of these survivors will experience complications either due to the disease itself, complex surgical procedures or the rigorous rounds of radiation and chemotherapy they were given during treatment. POGO champions childhood cancer care for now – for life.
“Creative collaboration allows us to work towards a collective goal, and POGO is proud to partner with Bruce Power and the OHL to raise awareness of Childhood Cancer across Ontario,” said Lynn Wilson, Chief Development Officer at POGO.
The Bruce Power-sponsored games begin this evening in Kingston and Kitchener and continue through February 5.
- Kingston Frontenacs - November 1, 2019 (Brain Tumour Foundation of Canada)
- Kitchener Rangers - November 1, 2019 (POGO)
- Mississauga Steelheads - November 17, 2019 (POGO)
- Sudbury Wolves - November 17, 2019 (POGO)
- Oshawa Generals- November 22, 2019 (POGO)
- Barrie Colts - November 23, 2019 (Brain Tumour Foundation of Canada)
- Peterborough Petes - November 23, 2019 (POGO)
- London Knights - December 28, 2019 (Brain Tumour Foundation of Canada)
- Sarnia Sting - January 3, 2020 (Brain Tumour Foundation of Canada)
- Hamilton Bulldogs - January 4, 2020 (POGO)
- Niagara IceDogs - January 9, 2020 (POGO)
- Ottawa 67's - January 12, 2020 (POGO)
- Guelph Storm - January 17, 2020 (Brain Tumour Foundation of Canada)
- Windsor Spitfires - January 19, 2020 (Brain Tumour Foundation of Canada)
- North Bay Battalion - January 30, 2020 (Brain Tumour Foundation of Canada)
- Sault Ste. Marie Greyhounds - February 5, 2020 (Brain Tumour Foundation of Canada)
About Bruce Power
Formed in 2001, Bruce Power is an electricity company based in Bruce County, Ontario. We are powered by our people. Our 4,100 employees are the foundation of our accomplishments and are proud of the role they play in safely delivering clean, reliable, low-cost nuclear power to families and businesses across the province. Bruce Power is also a significant source of Cobalt-60, a radioisotope used for the sterilization of medical equipment around the world as well as a specialized form of cancer treatment called the Gamma Knife. Learn more at www.brucepower.com and follow us on Facebook, Twitter, LinkedIn, Instagram and YouTube.
For more information, contact:
John Peevers – Director, Corporate Communications – 519-361-6583 – john.peevers@brucepower.com
About the OHL
The Ontario Hockey League is a proud member of the Canadian Hockey League which is the world’s largest development hockey league with 60 teams in nine Canadian provinces and five American states. In addition to the OHL, the CHL is made up of the Quebec Major Junior Hockey League and the Western Hockey League. Last season, more than nine million fans attended CHL games in the regular season, playoffs and at the MasterCard Memorial Cup. The CHL supplies more players to the National Hockey League than any other league. Last season 527 graduates attended Canadian Universities on scholarships from CHL teams.
For more information, contact:
Josh Sweetland – Director, Communications – 416-299-8700 – jsweetland@chl.ca
About Brain Tumour Foundation of Canada
Brain Tumour Foundation of Canada is the only national charity offering information and support to patients affected by any kind of brain tumour – be it cancerous, non-malignant or metastases. The organization funds ground-breaking research across North America and, since 1982, has dedicated over $7.2 million to finding a cure and improving treatment for brain tumour survivors. Brain Tumour Foundation of Canada is funded solely through generous contributions from individuals, corporations, organizations, employee groups and special events. Learn more at Brain Tumour Foundation of Canada’s website at www.BrainTumour.ca.
For more information, contact:
Susan Marshall – Chief Executive Officer, Brain Tumour Foundation of Canada –smarshall@braintumour.ca – 1-800-265-5106 ext. 222
About the Pediatric Oncology Group of Ontario
In 1983, a group of passionate and visionary pediatric oncologists founded the Pediatric Oncology Group of Ontario (POGO). Today, inspired by the children and families whose lives we strive to improve, we champion childhood cancer care on behalf of the childhood cancer community. POGO is the official source of advice on childhood cancer to the Ministry of Health; a trusted source of information among colleagues, parents, survivors and the public; and the longstanding leader of a collaboration among the five academic pediatric oncology programs and other stakeholders, which has resulted in a highly integrated childhood cancer system. Learn more at www.pogo.ca and follow us on Facebook, Twitter, LinkedIn, Instagram and YouTube.
For more information, contact:
Jacqui DeBique – Communications Manager – 416-592-1232, ext. 266 – jdebique@pogo.ca
Pediatric Oncologist Cycles across Canada to Raise Funds for Kids with Cancer
I first entered the world of childhood cancer as a counsellor at Camp Trillium in the year 2000. It quickly became apparent that this week away was often the only break that these families would get from their time at the hospital.
Fast forward to today, I am now a pediatric oncologist. I am the person who tells families their child has cancer. Often I get to tell them their child is cured and watch the relief flood over their faces. But for 1 out of every 5 kids, I still have to say "the cancer is back, and it might take your child's life." In addition, as the Medical Director of the POGO AfterCare program at McMaster Children’s Hospital in Hamilton, I see in my practice that surviving cancer isn’t the end of the story. As many as 60% of survivors will experience at least one chronic health problem due to their cancer and/or its treatment.
Since becoming an oncologist, I have been privileged to get to walk the cancer journey with so many kids and families. That is why three years ago, I upgraded my commuter tank with a basket to a road bike to ride in support of kids’ cancer care. Since then, I’ve been hooked. I love the feeling of sunshine on my back, and watching the scenery race by on a gorgeous day outside. This year, I am taking it to the next level and riding across Canada in Coast to Coast’s National Kids Cancer Ride taking place from September 4 – 21, 2019.
I am riding to support organizations that I’ve seen make a tangible difference to our families–the Children’s Hospitals (including mine!), the cancer camps, advocacy and support organizations, research funding and more. I am riding for our families–the ones who lost kids, those who are still supporting childhood cancer survivors, and the ones that are facing a brand new diagnosis. I am also riding for my dad who passed away after his own second cancer relapse this past year. I got to hear the words I often say, “His cancer is now incurable”…so I am riding in the hope that one day we’ll never have to say or hear those words again.
For those not familiar, this ride equates to about 150km/day for 18 days, as we cycle across Canada from Vancouver to Halifax during Childhood Cancer Awareness month in September. The ride raises funds through the Coast to Coast Against Cancer Foundation, which supports so many programs for our families affected by childhood cancer. Please consider supporting me here through donations: http://staceymarjerrison.nationalkidscancerride.com, as well as spreading the word.
I will be posting updates on my twitter feed and instagram accounts @staceymarj. I hope you will follow along as this journey continues, and that you come out to cheer us on as we ride through your city!
Sam's Story: Focusing on Ability, Not Impairment
I was seven years old, living in South Korea, when I was diagnosed with a brain tumour and treated with a 12-hour surgery at Seoul National University Hospital. I can still remember the atmosphere in the operating room—it was cold and not a friendly setting for kids. As a young boy in an adult hospital it was very scary, but my dad was with me and comforted me until I fell asleep. The surgeon was not able to remove the entire tumour because it was pressing against my optic nerve, so I have been left with low vision and weakness on the left side of my body.
My family moved to Canada when I was 10 years old because my parents wanted better opportunities and better medical care for me. Shortly after we arrived, I developed severe headaches and was hospitalized at McMaster Children’s Hospital in Hamilton. I was diagnosed with hydrocephalus, an accumulation of cerebrospinal fluid within my brain, likely related to my tumour. This typically causes increased pressure inside the skull. The setting of this hospital was very different from the one I was treated at in South Korea. The staff at McMaster are used to children and made me feel very comfortable about my treatment and medical procedures. I received a shunt implant that will remain in me for the rest of my life. A shunt is a tube that is inserted to divert the fluid away from my brain and, luckily, I have lived headache-free since then.
As part of my follow-up care, I receive MRIs every six months at a POGO AfterCare Clinic. In 2010, the test showed my tumour had grown. I received 70 cycles of chemo over an 18-month period. It shrunk the tumour a bit and it has remained stable ever since. I guess because of all my experiences in childhood, I always knew I wanted to work with children when I grew up. When I was ready to apply to post-secondary, I started to work with a POGO academic and vocational counsellor who helped me with the transition from high school to college. She helped me with things like adapting to new academic pressures and getting special accommodations because of my vision and mobility impairments.
I am proud to say I have graduated from Mohawk College with a degree in Child and Youth Care and I got a job at the YMCA afterschool program. I facilitate activities for kids in Grades 3 and 4. I love it because the kids are honest and energetic. I recently applied for and was offered the position of workshop facilitator for POGO’s Survivor-to-Survivor Network where I will use my personal experience to lead discussions on topics that are relevant to other childhood cancer survivors. Topics include employment, education, advocacy and self-disclosure. Self-disclosure can be a tough topic to tackle. The workshop revolves around how childhood cancer survivors disclose information about their disease, its treatment and resulting health complications to future employers and other people they are close to. It focuses on changing the language around any impairments they have, to describing what they CAN do. As survivors, we have overcome many difficult situations in life and we are stronger for it, more resilient. We have a lot to offer employers who are willing to see past our disabilities. I am excited for this opportunity to be a POGO workshop facilitator because I want to empower survivors to overcome the barriers that have resulted from their cancer and not let these challenges hinder what they can achieve in life. Because of the support I received from POGO academic and vocational counsellors, I was accepted to college, I have a diploma and I was able to gain relevant work experience. I just want the same for other survivors.
By Sam Baik
Sam's story first appeared in the 2018 Community Impact Report, page 14. Sam has since completed a successful term as a Survivor-to-Survivor Network facilitator.
In Conversation with Dr. Paul Gibson
As POGO's Associate Medical Director, Dr. Gibson provides oversight for POGO’s seven Satellite Clinics including clinical practice and professional development training. He also chairs POGO’s Technology and Therapeutic Advisory Committee (TAC) that works to ensure timely and equitable access to state-of-the-art cancer treatment to all children in Ontario. Dr. Gibson was a member of the executive committee of the Provincial Pediatric Oncology Plan (PPOP), POGO’s long-range plan for childhood cancer care in Ontario. He is also a pediatric oncologist, and recently joined the team at McMaster Children's Hospital in Hamilton. He is also an Associate Professor of Pediatrics at McMaster University.
Q. What does Childhood Cancer Awareness Month (CCAM) mean for you?
Dr. Gibson: September is a time to celebrate collaboration. It’s a time to acknowledge the team efforts that lead to the remarkable outcomes in children’s cancer. It’s the families, the doctors, the nurses, the child life specialists, pharmacists, rehabilitation professionals, information coordinators, volunteers, tertiary hospitals and satellite centres. The saying is that it takes a village to raise a child. Well, it takes a province to care for families impacted by childhood cancer.
Q. What led you to pediatric oncology?
Dr. Gibson: As an undergraduate student, I worked as a counsellor at a variety of summer camps for kids with special needs and interacted with pediatric oncology patients and the dedicated professionals caring for them. It was here that my interest in oncology was sparked. I spent two summers in Alberta where I had the pleasure of working with Kids Cancer Camps of Alberta. Once in medical school, I was fortunate enough to be granted a studentship to spend the summer working with the pediatric oncology team at the Children’s Hospital of Eastern Ontario (CHEO). My experience there cemented my goal to become part of this world. I was fortunate to train in pediatric oncology at SickKids and then spend 10 amazing years working as part of the team at Children’s Hospital in London.
Q. What aspects of your work bring you the greatest joy, challenge or sadness?
Dr. Gibson: When I tell people I work in childhood cancer, their first response tends to be, ‘It must be so sad.’ I always explain that while the bad days can be awful, the vast majority of days are filled with laughter, levity and team work. Day to day we see our patients enjoying the moment, playing with their families, nurses, child life specialists, therapeutic clowns and volunteers. The biggest challenge still lies in the fact that we don’t cure every patient. Our team is profoundly impacted by challenges such as relapses and patients we can’t cure. It’s important for us to lean on each other in those hard times.
Q. When and why did you become involved with POGO?
Dr. Gibson: I first became involved with POGO as a trainee at SickKids. I participated in the annual POGO symposiums and enjoyed being part of the collective provincial community. I also had the chance to be a presenter during the Satellite Education Days and learn more about the communities served. When I joined the team in London in 2010, I came to appreciate the important job POGO plays in ensuring excellence and equity in kids’ cancer care throughout the province. POGO not only serves as the official advisor to the Ministry of Health, but also an important facilitator of collaboration and cooperation between professionals caring for children with cancer throughout Ontario.
Q. What mark do you want to make as POGO’s Associate Medical Director and as an oncologist?
Dr. Gibson: POGO’s successes over the past 30+ years have been built on the backs of dedicated volunteers and leaders. As the Associate Medical Director, I wish to make my mark by not only continuing the programs, relationships and advocacy of the past, but also to play a role in helping to usher in new therapies and technologies to improve childhood cancer outcomes for all patients in Ontario.
Q. If you could say one thing to the families and children in your career, what would that be?
Dr. Gibson: I would say, “Thank you!” It’s an incredible privilege to be ‘let in’ to their family dynamic at a time most would say is their worst. Not only do families allow us to work with them and care for their child, but so many also participate in research and clinical trials knowing that the knowledge we gain may never impact their child, but may improve the care and outcomes of countless children in the future.
Q. What would be your call to action to Ontarians for CCAM?
Dr. Gibson: Ontarians must make childhood cancer research a priority. While more children survive childhood cancer now than ever before, too many young lives are still lost every year. We must ensure Ontario children have access to clinical trials that will aim to improve outcomes and minimize long-term complications. We must also ensure that we take our best efforts to care for those who survive but are left with immense health challenges and also those who will not be cured and deserve the same world- class care at the end of life.
Dr. Gibson graduated medical school from Queen’s University, Kingston, Ontario, in 2004 and started training in pediatrics at BC Children’s Hospital. He has practiced pediatric hematology and oncology exclusively since starting his subspecialty training at Sick Kids in 2007.
Dr. Gibson served as Physician Lead for the creation and implementation of a variety of computerized provider order entry efforts in Southwestern Ontario, both within and beyond oncology. He has participated in a variety of research endeavours aimed at improving symptoms and quality of life in children and adolescents undergoing cancer therapy.
Dr. Gibson is an avid sports and music fan and when he’s off duty attends Blue Jays’ and Toronto Leafs’ games, and supports independent musicians and festivals.