Childhood cancer centres and POGO Satellite Clinics across Ontario are working diligently to ensure the safety and best outcomes for children with cancer during the COVID-19 pandemic.
For children with cancer, survivors and their families, the best way to reduce the risk of COVID-19 infection is to follow the recommendations outlined by the Ontario Ministry of Health, which can be found here. If you have questions about any specific precautions for your child or yourself, contact your oncologist or nurse.
Throughout Ontario, children with a new cancer diagnosis continue to be evaluated, undergo tests and start treatment with high priority and minimal disruption. POGO Satellite Clinics remain open and are an important component of keeping patients safe and the pediatric cancer system running. The childhood cancer treating centres are taking strong action to reduce the risk for cancer patients by limiting the requirement for well patients to attend the hospital by:
Connecting through telephone or videoconferencing and rescheduling hospital appointments
Deferring imaging and blood tests when possible
Utilizing community-based laboratories for blood tests when possible
This is particularly true for childhood cancer survivors who have been off treatment for several months or more.
If you attend a childhood cancer clinic, extra precautions may cause some inconvenience, for example:
Symptom screening is occurring at the hospital and clinic entrances
There may be limitations on the number of adults/family members allowed to accompany a child in the hospital
Playrooms may be closed
It is important to recognize that these measures are taken to protect survivors, your child and other children, family members, and staff in the hospital.
Your medical team understands that this a very stressful time for children, survivors, parents and families. Please talk to your team about your questions and concerns during this time.
David Hodgson, MD, FRCPC – POGO Medical Director
Paul Gibson, MD, FRCPC – POGO Associate Medical Director
Jessica Wright is a brain tumour survivor. In 2018, she applied and was selected as one of four Survivor to Survivor (S2S) Network Facilitators. POGO’s S2S Network is a special series of interactive workshops where survivor facilitators present helpful information, lead discussions and share personal experiences about a variety of survivorship topics. During the course of their engagement, facilitators build skills and then use these skills to conduct interactive workshops throughout Ontario which provide helpful information and an opportunity for sharing with fellow survivors.
By Jessica Wright
By the time I was 10 years old, I was having lots of migraines and struggling at school.
My family brought me to the doctor several times, but I wasn’t diagnosed until my teacher—a childhood cancer survivor herself—convinced my parents to insist I get an MRI. I remember all of us were in shock when they told us I had a pilocytic astrocytoma tumour, which is essentially a slow growing brain tumour.
The tumour is smack in the middle of my brain so chemo would not have been effective, and surgery was not an option. I was treated with radiation for six weeks, but I still live with the tumour today; I liken it to a dead mouse behind a wall. I also live with several side effects. I struggle with balance; I move a bit slower than the average person and my strength is very poor. I have a strong sensitivity to smells and I still suffer from migraines. I am also blind in one eye. None of these things are significantly noticeable so I blend in with the rest of the world and look like a healthy person. That’s the thing with childhood cancer survivors; many of us live with disabilities long after we survived our illness. For some people, like me, these disabilities are invisible so we can be perceived as lazy, especially in a school or work environment.
That is why I am so grateful to POGO for creating a program where survivors can learn from each other about how to deal with things like employment, school, advocacy and disclosure. I need special accommodations to compensate for my disabilities and I have learned firsthand that how and when you choose to disclose these things can contribute to your success at work.
There was the time I was hired to work at a store, and I chose not to disclose my disability. My job was to stock the shelves and set up for the store’s grand opening, after which, perhaps, I would be hired permanently once the store opened. It went well for the first couple of days until I got stuck in the aisle with cleaning products. I tried to tough it out, but I got light-headed and felt faint. I asked my supervisor if I could be moved to another area of the store and she was accommodating, but my co-workers didn’t know why; they just felt I was getting special treatment. I think if I had said something at the beginning, I would never have been put in that aisle to begin with and maybe things would have turned out differently.
I have another story where I disclosed my disabilities during the hiring process because part of my job was going to be accepting deliveries. I let them know that I cannot manage with very heavy lifting and about some of my other challenges because of my brain tumour. My supervisor was very understanding and even supportive. After a few weeks, when she saw me struggling at the end of a long day, she asked if I wanted to work shorter shifts. She tried to work around my limitations as best she could.
Being a POGO S2S facilitator has enabled me to share my experiences with other survivors and hopefully help them cope with their own struggles. It has also been very uplifting and empowering for me. Everyone understands what I am going through. No matter what I say or what I do, they don’t judge me, and they don’t complain. I have never been anywhere where I felt so accepted. It has truly been the best experience of my life.
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.
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.
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.
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.
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.
