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
Bruce Power Expresses Support for POGO's Survivorship Initiatives
Tiverton, ON (October 30, 2019) -- Bruce Power announced today that it is fully committed to supporting the Pediatric Oncology Group of Ontario’s initiatives to provide children with cancer, their families, and survivors of childhood cancer, with access to ongoing treatment, care and financial support.
The announcement, made at the MaRS Centre in Toronto, reinforces a $300,000 commitment made by Bruce Power to POGO on February 15 – International Childhood Cancer Day. Bruce Power, a leader in the production of medical isotopes that are used around the world to improve people’s lives, will provide the funding over the next five years as a key element of the company’s Community Investment and Sponsorship Program.
“Our commitment to the people of Ontario crosses many paths,” said Mike Rencheck, Bruce Power President and CEO. “We provide 30 per cent of the province’s electricity at 30 per cent less than the cost to generate residential power. We inject $4 billion into Ontario’s economy every year, and we contribute $2 million annually to grassroots initiatives, events and organizations that improve the lives of children, adults, Indigenous peoples and military veterans.
“The continuing efforts around our production of medical isotopes are heavily focused on working with the medical community and other partners to find new ways for treating cancer. We share the values of POGO in providing state-of-the-art care to those afflicted with cancer in their childhood years, and doing what it can for families dealing with this life-changing diagnosis.”
One program supported by the Bruce Power funding is POGO’s school and work counselling service for childhood cancer survivors (SAVTI). POGO launched this program in 2002 to address a significant gap in survivor care, helping survivors, aged 16 plus, with neurocognitive challenges receive the necessary support to set and attain realistic educational and employment goals. POGO provides one-on-one counselling tailored to a student’s medical past and subsequent cognitive profile to help them bridge the gap between high school and whatever comes next for that student. POGO counsellors, specialists in their field, support clients in London, Hamilton, Toronto, Ottawa, Kingston and the surrounding areas. Together with neuropsychologists, they also help young people identify and access the accommodations they need, connect to resources in the community, and receive guidance to empower them to become self-advocates at school and at work. POGO counsellors provided services to over 400 cancer survivors last year.
“Bruce Power’s multi-year commitment provides stable funding that will allow us to plan long-term for initiatives that support childhood cancer survivors, as well as Ontario families with children in cancer treatment,” said Jill Ross, POGO’s CEO. “Our work with community partners like Bruce Power, who share our commitment to helping people deal with cancer, plays an important role in ensuring a high-quality, safe and coordinated system of care that addresses both their physical and emotional well-being.”
“In addition to being the backbone of our province’s energy system, Bruce Power is now also an important partner in Ontario’s health care system, producing life-saving medical isotopes and providing financial and other supports to help fight childhood cancer,” said Bill Walker, MPP, Bruce-Grey-Owen Sound and Associate Minister of Energy. “I commend your commitment and look forward to the great work from your new partnership with the Pediatric Oncology Group of Ontario.”
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.
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
POGO CEO Reflects on The Childhood Cancer Care Plan One Year After Launch
Q. Looking back on the past year, which accomplishments stand out for you?
The Childhood Cancer Care Plan was developed by over 200 clinical experts, providing care in clinics and at the bedside day in and day out, as well as parents and survivors, system planners and administrators. It has been wonderful to see many of these same individuals along with new participants readily volunteering their time, expertise and experiences to committees and activities that will drive action on the Plan’s goals.
That said, two other items that particularly stand out, are the launch of the newest POGO Satellite Clinic at Peterborough Regional Heath Centre in fall 2018, bringing care closer to home for patients and their families in that part of the province, and the publication of the latest, high-quality Ontario data in Childhood Cancer in Ontario 1986–2015: A Surveillance Report.
Q. The Plan identifies the need for Champions. Describe how Champions have come on board to help implement the Plan.
The Childhood Cancer Care Plan is a system plan. In addition to POGO, it will take the collaborative efforts of survivors, patients and families, clinical care providers of all types, government, donors and others to achieve its goals. An excellent example of this collaboration is POGO’s work on the Plan’s strategic objective to “promote effective and appropriate care for adolescents and young adults (AYA) treated in all settings.” Adolescents and young adults have unique care needs that require us to bring the best from the childhood and adult cancer care systems.
This year, Champions from across the province—clinical specialists from the POGO network and from Cancer Care Ontario’s adult cancer programs, and survivors of AYA cancer, with the support of the Ministry of Health—have joined forces to identify actions that can be taken to improve care.
Q. Specialized donor-funded support for families, research and survivors is a key driver of the Plan’s success. How has the contribution of donors contributed to moving the goals of the Plan forward?
One of the Plan’s five major goals is to optimize the physical health and emotional well-being of survivors of childhood cancer. Survivors have told us that they are in need of practical and informational resources to help them cope with life after a diagnosis of childhood cancer. With the generous support of an anonymous donor to launch a new initiative and continued funding from The W. Garfield Weston Foundation, POGO has been able to enhance our counselling service for adolescent survivors facing challenges completing school and finding work by introducing the Survivor to Survivor (S2S) Network. With the S2S Network, survivors gain practical skills, build their confidence and connect with others, as they create and deliver informational workshops on key issues for fellow survivors. Feedback from participants so far has been outstanding.
Check out S2S workshop topics and hear from
S2S facilitators about their experience
Donors to POGO also support important research aligned with the Plan’s goals.
Q. This is a provincial plan intended to deliver the best possible care for the best possible outcomes for families, young people with cancer, survivors. What tangible differences are already evident for this population?
The POGO network has been working effectively together to continuously improve the system since POGO created the first Provincial Pediatric Oncology Plan (the Plan’s former name) in the late 1980s. Ontario’s outcomes are among the best in the world. Overall survival from childhood cancer is at an all-time high of 86%.
For children facing a diagnosis of cancer, in alignment with the Plan’s goal of “equitable, appropriate and timely access to emerging and evolving oncology drugs, diagnostics and technologies,” POGO ensures pediatric cancer expertise informs new drug funding policies and continues to lead the process to enable access to the latest collaborative clinical research studies for Ontario’s children facing cancer. POGO’s Therapeutic and Technology Advisory Committee of experts from across the province is now in place to continually scan the new science for opportunities to enhance care in Ontario.
Work also continues to enhance long-term outcomes for survivors of childhood cancer. Most survivors need lifelong monitoring to ensure that the late effects of their disease and its treatment are managed in such a way as to ensure the best quality of life possible. Survivors need reliable access to high quality primary and specialty care but, too often, access to primary care is a challenge. POGO’s Integrated Provincial AfterCare Steering Committee, composed of clinical and survivor representatives, aims to connect each survivor with a primary care provider in their home community and to ensure that primary care providers and the cancer specialists work effectively together to provide optimal monitoring.
Q. When we look ahead one year from now, what are some immediate priorities arising from the Plan?
While our clinical outcomes in Ontario are excellent, there are other important outcomes that need concerted attention. In particular, we hear from the clinical team and parents alike that the Plan’s goal about “ensuring integrated psychosocial care,” and objectives to “enhance supportive care” and “meet educational and information needs” are particularly challenging.
POGO’s guidelines program ensures that Ontario has excellent, internationally recognized, evidence-based supportive care guidelines, but more needs to be done to ensure that the recommendations in those guidelines can be put into day-to-day practice. The benefit of guidelines is real; a US children's hospital, for example, saw a significant decrease in patient vomiting after implementing the POGO guideline for prevention of chemotherapy-induced vomiting. POGO is committed to working with our partners to facilitate evidence-based guideline uptake.
While we made an excellent start this past year, we also have more work to do to meet the Plan’s goal of ensuring “the right data are available and being used to drive an effective childhood cancer system.” We are working with hospital partners to give them the data they need to monitor quality and do local planning, and in turn, contribute to strong province-wide planning. We will also be updating the POGO Surveillance Report this year, and we are working with data partners to improve the information available about AYA cancer.
Most importantly, we look forward to strengthening existing partnerships and developing new ones with organizations that can help advance the Plan’s important goals for childhood cancer patients, families and survivors.
Identifying Increased Risk for a Cancer Predisposition Syndrome
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.
“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.
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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.
A Genetic Mutation: A Lifetime of Cancer Screening
Adapted from Yasmin Nasrati's speech at the the annual Cadillac Fairview Run
When I was a kid, my big brother was diagnosed with colon cancer and later with metastatic adenocarcinoma of the duodenum. Sadly he passed away. He was only 12 years old.
Shortly after his death, his oncologist at SickKids Hospital suggested that all of his siblings get genetic testing. That is when my family learned that I have an inherited gene mutation, which increases my risk of acquiring malignancies and other serious health concerns. And so began my lifelong annual cancer screening.
I was 7 years old.
Because of the regular screenings, they discovered my brain tumour early. At age 13, I received 33 daily radiation treatments and I was cured….per se, but I have certain side effects because of it.
This might shock you, but I am actually a four-time cancer survivor.
At age 15, I was diagnosed with cancer of my small bowel— and treated with surgery and 12 cycles of chemotherapy.
When I turned 18, I aged-out of the pediatric system. This was a very stressful time because all of the staff at SickKids Hospital are trained to take care of children, both physically and emotionally, so I felt very safe. At 18, I was still really young and didn’t feel ready to leave the children's hospital.
My regular cancer screenings continued at Princess Margaret Hospital. At age 22, I was diagnosed and treated for colorectal cancer and a year later, breast cancer.
In addition to screening, I am monitored at the POGO AfterCare Clinic on a regular basis for late effects. Actually all survivors are monitored, not just those with a genetic mutation. This is because even though the survival rate is up to 86%, as many as 60% of young adults will face a lifetime of complications that are a direct result of their childhood cancer or the treatment they received.
One of these complications is learning difficulties, including slowed rate of information processing, poor working memory, increased forgetfulness and more. These are all things that I struggle with on a daily basis.
I am 23 years old, and at this stage in my life, my education is my main priority, but for a while, my success at school was at risk. It was through my nurse practitioner at the AfterCare clinic that I was introduced to my POGO counsellor.
POGO’s academic and vocational counselling program is a donor-funded program that provides personalized support for childhood cancer survivors who need extra help to transition from high school on to college, university or into a vocational program.
Counsellors work one-on-one with survivors to provide them with special accommodations to complete tests and schoolwork; to help them match their career goals with their abilities; to facilitate scholarships targeted at survivors; and link survivors with the appropriate disability services and supports within colleges, universities or the community.
I am proud to say that I am now a college graduate and currently a student in York University’s Sociology and Human Rights Programs.
By Yasmin Nasrati
I recently had the opportunity to represent both the Hospital for Sick Children and POGO at the annual Cadillac Fairview Run/Walk, which raised $250,000 through sponsorship and employee participation.
Strong Moms
So, recently, I volunteered at my daughter’s school. We went on a field trip. During the bus ride back to school I got into a conversation with Selena's teacher who of course knows of her past at SickKids. She mentioned to me her daughter was sick; that she had a bladder infection. She mentioned how her daughter was screaming in pain and discomfort.
The next comment was one I have heard a million times before. She said:
"I was so terrified and am so sad. How, Natasha, did you deal with Selena having cancer?"
Funny thing is I just looked back at her. For the first time, words didn't flow out in my usual strong mom spiel of, "Well, you know when you don't have a choice you just handle it," type of response. Instead I was more held back, a shiver came over me, words didn't make sense in my head because I don't really know how I got through it. I was possessed for those years, something bigger than me took me and drove me through the storm.
Now that it's over and we can breathe and have reached the 3-year post-treatment marker, what I am not doing is handling it as well as I did before. I am one big emotional wreck, holding it together by a string, taking each day as it comes and trying to find my way all over again.
All this to say "strong mom" means many things; it's as individual as we all are. We all handle things the best we can. From a tummy ache, toothache, bladder infection to cancer, when our kids get sick and are hurting, we, the moms, hurt for them. Some illnesses we can get over quickly; they come and they go; life threatening, critical illness for some can take much longer to heal from as the hurt is deeper than the surface. It boils in our veins as it triggers directly into our core and our hearts.
With today being Mothers’ Day, I send love and light to all moms, especially those whose babies made it to heaven. I know some of you. I feel your pain yet cannot ever know what it feels like to walk in those shoes. How does a mother, any mother, do it? Hmmm, good question; the honest answer still unwritten, I suppose.
By Natasha Koss
Natasha will be running in support of POGO at the Toronto Women's half marathon on May 26. Natasha started running to help curb her anxiety when Selena was diagnosed with cancer. Please support her fundraising efforts at the link below!
Support Natasha in the Toronto Women's Half Marathon!
Childhood Cancer: A Mighty Purpose Adapted from Lia Goh’s speech at the 2019 POGO PJ Party
My name is Lia Goh. I am 12 years old and I am a cancer survivor.
When I was three years old, I was diagnosed with acute lymphoblastic leukemia. I went through three years of treatments, including chemotherapy. I lost all of my hair; it almost grew back blonde!! And I received more blood transfusions than I can remember.
In fact, I don’t remember a lot about my cancer or its treatment.
Like how my parents had to take leave from work and my family rented an apartment in Toronto because I spent most of that first year in the hospital. Or how I was in isolation for a lot of that year. Or how I spent so much time in bed that my muscles atrophied, and my dad had to carry me everywhere.
I am old enough now to realize how lucky I am. I am lucky to have the support and love of family and friends. I am lucky that my parents had the freedom and the financial means to take the time off work to be with me. Many families don’t have that luxury. I am lucky to have benefitted, and I will continue to benefit, from the support of some incredible organizations, such as POGO.
And my dad always says that I am especially lucky to have benefitted from so many kids that came before me. From the research that has been done, and so many incredible services that have been created to support kids with cancer, their families and survivors like me.
From the time my brother and I were little, my dad would read a poem to us called “The Champion's Creed.” In it, there is a line that has always stuck with me:, “Dedicate yourself to a mighty purpose.”
I can’t think of anything more mighty than helping to beat childhood cancer. So, I feel responsible to do as much as I can for all the kids who are fighting this battle now and all who will be fighting it in the future.
Watch Lia deliver her full speech here. Video courtesy of Natasha McKenty.
A Healing Journey by Yasmin Nasrati
#BellLetsTalk #mentalhealthawareness
I am 23 years old, a college graduate and a current student in York University’s Sociology and Human Rights programs. My education is very important to me but it can be overwhelming sometimes. The workload combined with rising debt is stressful, while splitting my spare time between volunteering and family and friends has become difficult to balance.
I’m also a four-time cancer survivor. I had my first diagnosis, a brain tumour, at age 13. I’ve also had colon, colorectal and, most recently, breast cancer. At age 12, my brother was diagnosed with colon cancer and later with metastatic adenocarcinoma of the duodenum. Because screening was never done and we weren’t aware of our genetic disorder, my brother passed away from colon cancer. I have an inherited gene mutation, which increases my lifelong risk of acquiring malignancies and an ongoing anticipation of serious health concerns.
My life is filled with medical appointments, medical treatments, school work and other everyday commitments, and so I have always tried to be strong and brave, pushing my feelings down so I could just keep moving forward. But there is a price: fatigue, change in appetite, poor concentration, feelings of restlessness, loss of interest or pleasure in activities, irritability/lack of patience, dry mouth and shortness of breath/tightness of the chest, to name a few. These are all prominent when there are multiple things happening at the same time in my life.
Until recently, I just interpreted these events as “stressful,” but what I didn’t realize until I learned more about the symptoms of depression and anxiety, is that what I was feeling was not just stress, but a blend of mental health issues.
These symptoms don’t just affect me, they take a toll on the people around me. And while I know this is the time when I need to acknowledge what I am going through and ask for help, I often feel that I don’t have any options or that others won’t understand.
I realize that I play the biggest role in my own self-care. Yes, I am going through many issues, medically and psychologically, but what I’ve experienced so far has only made me stronger. So how can I use that strength to achieve a better quality of life? How can I minimize the stress in my life and increase the things that bring me joy, like volunteering? How do I find the time to connect with other survivors who understand what I am going through, when I feel exhausted from the medical appointments and school work? And how do I maintain a hopeful outlook when I know that I may continue to battle various cancers for the rest of my life?
To be honest, I haven’t exactly figured it out. But I do know that it is a process that I need to consciously work on each day, and that my psychological well-being is worth fighting for.
POGO's Childhood Cancer Care Plan has as one of five goals integrated psychosocial care at all stages of the cancer journey. A key objective is to ensure integration of psychosocial care into standardized care planning to improve quality of life for patients, families and survivors like Yasmin. Learn more.