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Happy Days Again: My Post-Treatment Cancer Journey
Ella Gwendolyn Jeffery
The first time I had a dressing change, I cried over what my life had become. Three weeks earlier I was healthy and doing all the things an 11-year-old should do—running, climbing, and swimming. Here I was now: fighting a disease that I knew nothing about, except for the fact that it ruins lives. It was ruining mine.
A nurse tried to comfort me by saying, “When this is all over, you’re going to be happy and healthy, and nothing’s going to ever bother you again!” I believed her wholeheartedly; I couldn’t bear to think of any other outcome.
My leukemia did go into remission; the bone marrow transplant cured me of my cancer for good, and I became healthy again. Achieving happiness was a different story.
I returned to school full-time, less than a year after my diagnosis. School was what I had missed most during treatment, and I was expecting it to be fun. But on the first day of grade seven, I found myself in the bathroom having a panic attack. I was worried about germs and all the things that could make me sick. I was scared that my immune system wouldn’t be able to handle it.
Then there were my classmates. They had changed so much during the year I was away. I suppose I looked different too, but the difference in them seemed so sudden and was scary.
Some days I would be in a fog, remembering physical sensations of the pain I endured and fearing it would return. By mid-week I was overwhelmed and exhausted. I started faking being sick to get out of school early. My mother wasn’t fooled, but she didn’t say anything because she knew I was struggling—not physically or academically, but mentally. My world had almost ended, but I was expected to act like it had just kept turning.
That first year back at school, I began counselling with a wonderful therapist at Oakville Trafalgar Memorial Hospital. It took dozens of sessions before I was even able to talk about my leukemia diagnosis, but my therapist remained patient until the day I was able to say, “On October 18th, 2014, I was diagnosed with cancer.” I was challenged to go through these memories, write them all out, and say to myself, “I was diagnosed with cancer, but it’s gone now. I won.”
When I was asked to write this story about a pivotal moment in my cancer journey, I wondered if it would count to write about the recovery after treatment. But then I realized, a huge portion of recovering from a traumatic event is the mental health process; accepting what has happened to you, and knowing that while your life has changed forever, you can still make happy, timeless memories.
In my opinion, the key to recovering mentally from an event like childhood cancer is to acknowledge what happened, express it in any way that you see fit, and then remind yourself of how hard you fought to beat the illness. After that first writing challenge in therapy, I began to write out every detail I remembered from treatment—thoughts, physical feelings, and descriptions all went into a series of journals. Even my memories of what I was wearing on a given day went into my writing! And, over this period, my fog went away. It took years, but more and more I was able to live in the moment with my friends and family, rather than being stuck remembering pain from the past. School became less of a trial and more of a pleasure.
Now I am in classes at my dream university, and I love the life I have created. There are still days where I feel sad about what happened to me. I don’t think you should come out of cancer thinking that nothing’s ever going to bother you again, but I do know that over time, things get better. To every childhood cancer warrior out there, know that you are strong in your battle, happy times do come, and no matter what, every day you are winning your fight!
At the time of writing, Ella Jeffrey was a client in the POGO Transitions Program. With the support of her POGO Counsellor, Ella achieved her goals! (January 2023)
Last updated: June 2024
2022 POGO Multidisciplinary Symposium on Childhood Cancer features patient and family stories
Pediatric Oncology Group of Ontario (POGO) hosted its annual Multidisciplinary Symposium on Childhood Cancer on November 4-5, 2022. The POGO Symposium, organized annually around a central theme, is POGO’s signature educational event for pediatric oncology health professionals. Central Nervous System (Brain) Tumours was chosen as the theme for 2022.
Patients with brain tumours often face challenges that are distinct from other types of cancer. To contextualize the scientific presentations delivered at the POGO Symposium, the planning committee wanted to share patient and family stories to shed light on how a brain tumour diagnosis affects the patient in their day-to-day life and everyone who cares for them.
To achieve this, POGO recruited five individuals whose lives have been impacted by a brain tumour diagnosis to work with Mike Lang, an expert in digital storytelling facilitation. Digital storytelling guides participants to use personal images and videos, voiceover narration, music, and various video-editing techniques to bring the meaningful moments of their life to the screen.
To quote Brené Brown, “Maybe stories are just data with a soul.” It is POGO’s hope that everyone who engages with these stories will learn something new about the childhood cancer experience, by seeing it through the eyes of patients and their families.
Ethan’s Story
Ethan was six years old when he was diagnosed with medulloblastoma, sub category 3.
Today, Ethan is 10 years old and in this story he draws on his love of video games to talk about overcoming obstacles, forging new paths, and appreciating what makes him and others unique.
Layya’s Story
This story is a poignant reminder of the impact that a childhood cancer diagnosis has on the entire family unit, in particular, siblings. Layya talks about the confusion and pain she felt watching from the sidelines as her sister, Sara, went through treatment for a brain tumour.
Sara’s Story
Sara is Layya’s sister. She was diagnosed with low-grade astrocytoma when she was seven years old. What followed was a harrowing journey that moved her family from their home in Lebanon to Canada to seek treatment, which was difficult for the entire family. The hardest part of the journey for Sara, though, came after she was declared “cancer-free,” which is an experience shared by many survivors. Reintegrating into school and relating to her peers were tremendous challenges at first. Yet Sara perseveres, and her story is a powerful reminder that even small acts of kindness can make all the difference in the lives of a child with cancer.
Yvonne’s Story
Yvonne is mother to Alyssa. This story describes Yvonne’s early experiences with the healthcare system as she searched for an answer to what was ailing her child. A mother’s intuition is a powerful thing, and Yvonne knew something was terribly wrong. Instead of support, she encountered suspicion, judgment and worse.
This story delivers a message that is hard to hear, but one that we can all learn from. It is not about any one institution, but rather highlights inequities in the healthcare system at large that will only be corrected when we collectively acknowledge and address them. POGO shares this story in the spirit of learning together to help us all be positive agents of change.
Nelly’s Story
Nelly was diagnosed with medulloblastoma when she was 10 years old, which significantly affected her vision. She was in the dark—literally and figuratively—and felt so hopeless at times that she didn’t see the point of engaging with the world around her. Nelly’s story reminds us how disorienting a cancer diagnosis can be for a child, and how resilient children can be in the face of challenging circumstances.
Four Ontario hospitals first in Canada internationally certified as Centers of Excellence in Supportive Care in Cancer
Four major Ontario pediatric hospitals, with specialized childhood cancer programs, are the first hospitals in Canada to be awarded prestigious international certification recognizing their excellent supportive care for children and youth with cancer.
CHEO (Ottawa), The Hospital for Sick Children (Toronto), Children’s Hospital at London Health Sciences Centre, and McMaster Children’s Hospital (Hamilton) were each certified by the Multinational Association of Supportive Care in Cancer (MASCC) as Centers of Excellence in Supportive Care in Cancer.
Supportive care refers to the prevention and management of the adverse effects of cancer and its treatment. This includes the management of physical and psychological symptoms and side effects of treatment, such as infections, prevention of nausea and vomiting, nutrition, physiotherapy, and psychosocial support. Supportive care aims to improve the quality of rehabilitation, secondary cancer prevention, survivorship, and end-of-life care.
MASCC certification recognizes these oncology centres for integrating the highest standards of comprehensive supportive care services with cancer treatment. These hospitals provide comprehensive supportive care to their pediatric oncology patients. They work in partnership with the Pediatric Oncology Group of Ontario (POGO) to ensure everyone affected by childhood cancer has access to the best care and support, including through POGO’s Interlink, Transitions, AfterCare, and Satellite Clinic services, and implementation of POGO’s evidence-based clinical practice guidelines.
These four Ontario hospitals join other leading healthcare facilities around the world as MASCC-Designated Centers of Excellence in Supportive Care in Cancer.
MASCC certification is valid for three years.
About MASCC
The Multinational Association of Supportive Care in Cancer (MASCC) is an international multidisciplinary organization dedicated to research and education in all aspects of supportive care for people with cancer. The certification program aims to promote and recognize oncology centres that demonstrate best practices in supportive cancer care by successfully integrating oncology and supportive care, upholding high standards, and maintaining comprehensive supportive care services. Learn more.
About POGO
Pediatric Oncology Group of Ontario (POGO) works to ensure that everyone affect by childhood cancer has access to the best care and support. POGO partners to achieve an excellent childhood cancer care system for children, youth, survivors, and their families, and healthcare teams in Ontario and beyond. POGO champions childhood cancer care, and as the collective voice of this community, is the official advisor to Ontario’s Ministry of Health on children’s cancer control and treatment. POGO is a non-profit organization with charitable status, here for kids with cancer, for now, for life. Learn more.
Welcome New POGO Board Member – Jennifer Lomax
POGO is pleased to welcome Jennifer Lomax as Chair of our Development Cabinet and member of our Board of Directors.
Jennifer is Founder and Principal Consultant at Lomax & Co., an advisory firm that mobilizes strategy and implements sustainable management systems to drive superior business results. In this capacity, Jennifer worked with POGO to develop its current organizational strategy. Energetic, pragmatic and unapologetically candid, Jennifer uses her mastery of stakeholder engagement and facilitation to devise and deploy practical, high-impact business solutions. She has over a decade of experience working with organizations of all sectors and scale, including Fortune 500 companies on the client side and in strategic planning roles. Jennifer most recently served on the board of the Loeys-Dietz Syndrome Foundation of Canada.
She attained her MBA from Ivey Business School in 2011 and in 2013, Marketing Magazine named her one of Canada’s Top 30 under 30, recognizing the country’s smartest young marketers.
“I’m passionate about supporting my community and meaningful causes and pleased to join the POGO board and serve as Chair of the Development Cabinet to support POGO’s strategic, fundraising and outreach goals.”
Making Sense of my Mental Health: Fernando Da Costa’s Story
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.
Now, my parents are immigrants from Portugal. They knew little English when they first came to Canada and, thus, were limited in communicating. My cousin had a better grasp on the language but wasn’t privy to how to approach what was happening to me or the proper questions to ask. It seemed hopeless.
Then, after two years, my parents saw an herbal doctor in Toronto. He spoke Portuguese, too. My mother was finally able to tell someone the full story in her native dialect. It was the first time it would be relayed in a cohesive manner.
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.