The Challenge

Childhood cancer outcomes have seen remarkable improvements thanks to large-scale participation of children and adolescents in collaborative group clinical trials—a core component of childhood cancer care where many patients are enrolled on the same trial for more meaningful study results. For some children with cancer, the long distance between their home and the institutions engaged in these clinical trials presents a barrier to enrollment in clinical trials.  

Smaller community hospitals, like the eight with POGO Satellite Clinics, do not typically have capacity to support the regulatory and ethical oversite of niche trials such as these. Ideally, childhood cancer patients and families should not have to choose between enrolling on clinical trials and accessing the POGO Satellite Program, which allows families to remain in their communities, saving them time and money on travel, and keeping them closer to the much-needed comforts and supports of home.

The POGO Community’s Response

In an effort to prevent patients and families from having to make this choice, a system to access clinical trials was created in Ontario that allows the five specialized childhood cancer programs and the eight POGO Satellite Clinic locations to have shared responsibilities.

Some of the results, include:

• A shared-care model that meets collaborative group clinical trials requirements.
• A streamlined, consistent, provincial scientific review of clinical trials for the POGO partner hospitals referenced in this article by a single Research Ethics Board that minimizes the time required to open new clinical trials in Ontario.
• Increased equity of care and access to state-of-the-art treatment protocols across treating centres for children and youth with cancer.

POGO facilitates clinical trials education and training for the POGO Satellite Clinics on behalf of the specialized childhood cancer programs to ensure compliance with the process to participate in clinical trials. POGO also provides ongoing education for physicians working at POGO Satellite Clinics, as well as for nursing and allied health professionals via on-site visits, subsidized yearly provincial symposiums and biennial clinical education conferences.

Reference:
Alexander S, Greenberg M, Malkin D, et al. Pediatric oncology clinical trial participation where the geography is vast: Development of a clinical research system for tertiary and satellite centers in Ontario, Canada. Pediatr Blood Cancer. 2018;65:e26901;https://doi.org/10.1002/pbc.26901

The Canadian Cancer Clinical Trials Network (3CTN), in their efforts to improve access to adult oncology clinical trials for all Canadians with cancer residing in rural and remote communities, reached out to learn more about POGO’s process. 3CTN cites POGO’s model as one of two successful case studies and seeks to adapt and scale POGO’s model to the national level for adult oncology.

“POGO’s Satellite Program provides proof of concept that remote access models can effectively and efficiently provide access to trials for populations that would otherwise be excluded by virtue of geography.” ^{Canadian Centre Clinical Trials Network (3CTN). Canadian Remote Access Framework for Clinical Trials (CRAFT). May 2020. https://3ctn.ca/wp-content/uploads/2022/04/Canadian-Remote-Access-Framework-for-Clinical-Trials.pdf}

In 2017, three siblings from Aurora, Ontario, organized “PJs and Pancakes in the Park”—their first event to raise money in support of children with cancer. Kate (then 16), Meghan (then 15) and Jack Beswick (then 14) cooked and served pancakes to over 500 community members, friends and family. In partnership with sponsors, they raised over $27,000 at that one massive breakfast.

Since that first foray into raising money for POGO and the families we serve, the Beswick siblings have held three “PJs and Pancakes at Home” fundraisers—bringing pancake breakfast boxes into the homes of their community members, as well as families in treatment at POGO Satellite Clinics across Ontario. Most recently, the young trio launched “Sunday Best”—an afternoon of the best of Toronto’s food, fashion and friends. A three-course brunch catered by renowned chef Mark McEwan and the McEwan Group served over 300 guests in attendance. Entertainment featured live music and a showcase of Toronto’s up and coming fashion designers Ellie Mae Studios, Michel’s Bespoke Atelier, Tara Rivas and more!

“For our whole lives, being involved in our community and giving back has been a very important part of our family. Growing up we were fortunate enough to spend most weekend mornings sharing warm, fun-filled and slightly chaotic breakfasts in our PJs. However, the idea that so many families with a child battling cancer did not have the same experiences, and that instead, their PJs meant illness and treatment, resonated deeply for the three of us at a very young age. Since 2017, we’ve created these initiatives as a way to celebrate, support and share the incredible work POGO does. The work that has been so important to the three of us and our family since those early mornings spent at the breakfast table. The three of us are exceptionally honoured and proud to be able to support local families with a child battling cancer, alongside POGO.”
–Kate, Meghan and Jack Beswick

To date, the Beswicks have raised over $300,000 in support of children, youth and survivors of childhood cancer, and their families. We admire their commitment to being champions of childhood cancer care. On behalf of all of the families we serve, THANK YOU!

Events in support of POGO are an exciting way to turn your passion into impact for kids with cancer and their families. Your enthusiastic commitment combined with creative and administrative support from POGO can make a real difference in childhood cancer care. Got an idea for an event in support of childhood cancer care? Contact events@pogo.ca

How it Started

My journey began before I was capable of having conscious memories. When I was two, my mother noticed something off. I can only assume it was my poor balance. Whenever I tried standing, I’d struggle.

In the following years, the oddities persisted. My mother continued taking me to the hospital, but each time it was waved away by my pediatrician as being a flu.

I was four at this point. In the two years prior to this visit, my pediatrician continued to insist it was a flu. After my mother and the herbal doctor spoke, the herbal doctor turned to me, asking me to kneel before attempting to stand.

I did as he wanted and unsurprisingly, I was wobbly. He had an immediate inkling as to the issue—a brain tumour. He told my mother to go to the hospital, demand a CT scan, and to not leave until I got it. Now, it’s worth noting that none of my family members knew what that was. My pediatrician never mentioned it once. No, he stuck to the flu narrative. 

She did as requested but still, the doctors refused. As a child, I guess radiation could cause complications. Thankfully, they eventually gave in. What they found was a tumour that had quietly grown to the size of a grapefruit. I was rushed to the operating room.  

After the operation, I wasn’t meant to walk or talk, and it was thought I’d forever lack basic human functions. The early years of my life had me bound to a wheelchair. 

Fun fact—my dominant hand used to be my right but, while going to physio and relearning how to use my body, I became ambidextrous. 

My neurosurgeon referred to me as his miracle child. I wasn’t supposed to survive, to live to be an uncle, be in relationships, or have a life. I’ve done all of it. I defied the odds.

At 18, I was discharged from Hotel Dieu Hospital. I wouldn’t be followed again until I was about to leave for college. I hooked up with POGO and through them, I got a great counsellor in the POGO School and Work Transitions Program named Sarah.

How it’s Going

I’m 33 now and still have ill effects from the cancer. I’m traumatized, have difficulty keeping friendships, and have severe anxiety, as well as depression. I’m a mess. My memory is awful, my balance is terrible and my right side is weak. The nerve endings on my right are damaged, with my facial ones severed, giving me permanent Bell’s Palsy. The psychological effect is immense. At one point I was in cognitive behaviour therapy but the gains I made there were lost once those sessions ended.

At one point, I was even suicidal. I have scarred arms from that. I’m lost. I’m scared.

I need ​ support, psychosocial and so much more, and I know POGO can only do so much. Sarah has put up with me for over a decade now. With her help, I’ve tried to find a job, but I still have trouble because no one wants to hire a liability

I live in solitude and isolation. I still rely a lot on my parents so, once they pass away, I fear I’ll be homeless. As someone with disabilities, I feel society has cast me aside. All of my difficulties are seen as excuses despite being medically justifiable. It’s a daily fight with unfair judgments.

Luckily, in advocating for me, Sarah has recently helped me to become part of the POGO AfterCare Clinic at Kingston General Hospital. I have been able to see a pediatric social worker who kindly referred me back to a brain injury clinic and I’m now being referred for ongoing psychosocial support. Even with Sarah’s support, it’s still a slow burn.

Regardless of my disabilities, declining mental health, and deteriorating brain tissue thanks to radiation treatment, I’m fighting to build a life. I write reviews and have cultivated relationships with companies. I’ve also written three fantasy novels. They’re unpublished, but I hope to get that rectified someday. I’m still beating the odds.

Hello Boils and Ghouls,

Crypt keeper Jamie here with a spooktacular post. As someone who was born on Halloween, the day holds a special place in my heart. From the dressing up to the candy, it is easy to see why any kid would love it, but as I grew older, one of my favourite things quickly became the scary movies that come out around this time of year.

My favourites are definitely the old slasher films like the Friday the 13th, Halloween and Nightmare on Elm Street series. The general format is a group of teens go to X creepy place, are quickly stalked by some unknown entity, and then get routinely picked off one by one until all that remains are the killer and the “final girl” (obviously Jamie Lee Curtis is queen of final girls J).

So, why am I talking about scary movies on a childhood cancer website? Well, the truth of the matter is, when it comes to my future health…I’m scared, very scared.

I’m afraid that my cancer is going to come back.

I’m afraid that my late effects are going to get worse.

I’m afraid that if something is discovered, I will no longer have the strength to fight back like I did before.

The fear is real and it doesn’t go away when the movie ends and the lights come on.

And, if I am being honest, I have to admit that I dread my annual POGO AfterCare Clinic appointments to monitor my health…I am scared of what they might find.

Yet, like all survivors (horror-film-final girl included), I somehow manage to pick myself up and go on. I think that for me, this strength comes from an understanding that avoidance is the worst thing I could do for my health and, most importantly, because my fate would be worse than all horror film victims combined if my mother found out I missed an appointment.

So, to other survivors reading this, believe me when I say that it is ok to be scared about your health and worried about your AfterCare visits. But the worst thing you can do is to skip them. While avoiding the threat altogether is great advice for anyone in a horror film, it’s not the same for your health.

As part of his AfterCare monitoring, Jamie recently had a colonoscopy where they found some polyps—all of which were benign and removed on the same day. He says it was scary to hear, but it would have been worse if he had delayed his visit and the polyps developed into something else. Read Jamie’s funny account of his colonoscopy in Poops and Farts

Survivor Jessica Wright’s story underscores the importance of this topic

Jessica Wright was 10 years old when her migraines and struggles at school began. She remembers going to the doctor several times but it was a teacher—a childhood cancer survivor herself—who convinced her parents to insist on an MRI. Her family was shocked when Jessica was diagnosed with a pilocytic astrocytoma tumour, which Jessica describes as a slow-growing brain tumour.

Jessica’s tumour was of the central nervous system (CNS), and CNS tumours are second only to leukemias in terms of incidence rates in children. Survivors of CNS tumours often contend with significant late effects that can impact them for the rest of their lives.

From November 4 – 5, a renowned roster of speakers at the 2022 POGO Multidisciplinary Symposium on Childhood Cancer will examine clinical and scientific advances in the diagnosis and treatment of CNS tumours in children and adolescents and highlight the impact of this disease on patients, families and survivors.

“In the last decade, the pediatric oncology world has observed a dramatic improvement in our understanding of the developments and mutations that cause childhood brain tumours and how to better treat them,” says Dr. Uri Tabori, POGO Symposium co-chair and head of the pediatric brain tumour program at SickKids. “Together with new technologies, this resulted in a revolution in our approaches where we have moved away from conventional chemoradiation to novel targeted therapies, radiation and surgical techniques. These changes have had a major effect on the long-term outcome of children affected with brain tumours, and how we manage their care and tumours when they mature into adulthood. This Symposium is unique as it will provide important updates on these new opportunities as well as discuss them in the context of history and present health providers with insights into our approach to these cancers in the genomic era.”

Jessica recently made time to share more of her story with us to help paint a picture of life as a survivor of a CNS tumour.

Q: Describe what things were like for you with your original diagnosis.

Jessica: My tumour was smack in the middle of my brain so chemotherapy 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 calcified benign pilocytic astrocytoma tumour on my hypothalamus, my brain. 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.

Q: Your parents must have had many difficult decisions to make at that time. Do you remember what that was like?

Jessica: Even though I was only 10, my parents involved me in the decision-making. The doctors gave us all the information and presented every option. They were very patient and gave us the opportunity to choose the direction we wanted to go in. The doctors looked me in the eye as much as they looked at my parents. I think that the honesty I received as a child feeds into how well I am able to advocate for myself today.

Q: What rehabilitation techniques did you undertake to address the challenges you were facing?

Jessica: After my radiation, I struggled with short-term memory. My parents and I would play memory games, word searches, Tetris, and slowly, over time, I was able to deal better with the brain fog. Now those strategies I used as a child have come back into play. My doctors back then also suggested I get special accommodations and aids for school, like having a scribe, but it was so expensive back then. Now it is different; these things are more accessible.

Q: What about any ways in which your cancer affected your personal life?

Jessica: The tumour affected how I interacted with people throughout my school years. I was sent to a vocational high school, which meant I was separated from my elementary school friends. I was teased and bullied a lot due to my disabilities.

My memory issues made learning more difficult and, to this day, my need for accommodations makes getting a job difficult. I have to guess at when disclosing my disability will be a good thing or when it will harm my chances of getting a job.

Same with dating. My psychologist told me the most important thing is to be myself and do what is best for me. I try to find creative ways to disclose my illnesses and my disabilities, and usually it involves humour.

Q: That’s a lot to deal with. Did your healthcare team provide you with any strategies to manage these psychosocial impacts?

Jessica: I am lucky that I have had the same oncology psychologist since I was a child. She has been through everything with me and has given me many coping strategies over the years. I have multiple medical issues right now and I struggle with solving them all at the same time. She counsels me that worrying about things that are out of my control will cloud my judgement. She reminds me to focus on one or two things right in front of me that I can control and to make peace with the things I can’t. Once I have done that, it clears my path and I have more capacity to deal with the harder things on my plate.

Q: You have been through so much. Has your astrocytoma had any other lasting impacts?  

Jessica: In 2019, I was diagnosed with clear cell odontogenic carcinoma (CCOC), a rare intraosseous carcinoma of the jaw. I was told there is a direct link between the radiation I received as a child and the current diagnosis. I underwent a 10-hour surgery to have this cancer removed. As a result, my jawbone was removed and replaced with the fibula from my left leg and a titanium plate. My teeth on the lower right mandible were removed, as were my gums, and replaced with the skin graft on my leg (a free flap); a nerve and an artery were removed and replaced with a nerve in an artery from my leg. I had to re-learn how to speak, eat and use my jaw. I live with chronic pain each and every day.

During surgery, a papillary thyroid cancer was discovered and I then had a complete thyroidectomy, para neck dissection and then a complete neck dissection. I did physiotherapy for five months just to re-learn how to walk, and to learn to turn my head to be able to look up and down. After radioactive iodine treatment for my thyroid, I was declared cancer-free and was in remission for a year. Then a PET scan detected nodules on my lungs and a biopsy revealed CCOC in my lungs. Apparently, I am the only patient to be diagnosed with CCOC in my lungs. I just underwent experimental radiation to treat this cancer and I am currently waiting to see if the treatment worked. 

Q: What are the major differences between this second diagnosis and your first?

Jessica: Getting a secondary cancer as an adult is harder. I have had to fight and advocate for my healthcare needs. Sometimes this assertiveness comes off as offensive and ruffles feathers. But I know I need to fight to stay alive and I need my healthcare team to listen. I cannot be going to clinic with a lack of trust; it is detrimental to my care. If you want your tomorrow, you have to fight today.

In 2018, Jessica Wright was a presenter in POGO’s Survivor to Survivor Network. Itwas an opportunity that enabled her to share her experiences with other survivors to help them cope with their own struggles. Jessica still describes the experience as “uplifting and empowering.”  

The 2022 POGO Symposium takes place November 4 – 5 in Toronto. Register and learn more!