Conversations With My Mom: A Childhood Cancer Survivor’s Guide to Awkward Health Talks
“Mom, why doesn’t that man have any hair?”
“Can I have a chair with wheel like that lady?”
Ah…the unfiltered curiosity of children. My twin brother and I were masters of asking deeply personal, highly inappropriate questions at the absolute worst times. Our poor mother was (and still is) my go-to person for pretty much everything. Like many parents, I am sure she sometimes dreaded fielding our loud and awkward inquiries in public places, but she always handled it with patience (and the occasional deep sigh).
Fast forward to our teenage years, my mother probably braced herself for awkward questions about puberty, sex or some horrifying combination of the two. But life threw a different kind of curveball: at age 11, I was diagnosed with acute myeloid leukemia (AML). Suddenly, my questions weren’t just embarrassing—they were existential.
“Why is this happening to me?”
“Am I going to die?”
While she did not always have a definitive answer, she answered truthfully and the best she could. And now, more than 20 years post-treatment, I still go to her first when I have a health question.
Which led to the semen sample incident.
One particularly awkward situation came about after my oncologist suggested a fertility test to check if my cancer treatment had affected my ability to have children. Simple enough, right? So, I went to a lab and inquired about giving a semen sample. What follows is the conversation I had on the phone with my mother while walking home (yes, on a busy public street).
Me: Hey, so I went to the lab today about that fertility test. The lady was very clear that I could not provide the sample there.
Mom: (sighs) Jamie, I really don’t need to hear this. (pause) Wait, so they don’t even give you a private room?
Me: Apparently not! Also, I have to abstain for a few days beforehand, and the sample has to be delivered within a specific time frame.
Mom: But you don’t have a car and you won’t make it on time by bus! Oh no. (pause) Can’t they just do it another way? Like, stick a big needle in there?
Me: I really hope not.
Mom: I really don’t need to hear about this… (pause) Anyway, have I told you about my mammograms?
Me: Yes. Repeatedly.
Fertility: The Question No One Wants to Ask
One of the hardest parts of surviving childhood cancer is dealing with the long-term effects—many of which don’t show up until years later. Fertility is a big one. It wasn’t on my 11-year-old mind, but fast forward a couple of decades, and suddenly, it’s a very real concern.
For some childhood cancer survivors, fertility can feel like an unanswered question lurking in the background. The only way to find out is through awkward, slightly mortifying medical tests. It’s not always an easy subject to talk about, but it’s important. Whether you’re considering having kids, exploring options like sperm or egg freezing, or just trying to understand how treatment may have affected you, asking the question is the first step. And if those conversations feel too awkward to have with a doctor, well—there’s always your mom.
Jamie is a childhood cancer survivor who takes pride in his role as Communications Assistant at POGO. His creativity and self-described “weirdness” is reflected in his writing and his presentations at POGO staff meetings. Reading and playing video games would be his well-developed hobbies if only his beloved cat, Lupin, would just give him some alone time.
Childhood Cancer is a Lifelong Journey
Appearing in Metroland publications, September 17, 2024
While more kids are being diagnosed with cancer, more are surviving. Ontario’s childhood cancer survival rate is now 85 per cent — up from about 70 per cent in the mid-1980s. And while surviving cancer is certainly the goal, the impacts of childhood cancer can last a lifetime.
Richard Lautens Toronto Star file photo
By Lauren Ettin and Dr. David Hodgson
Lauren Ettin is the chief executive officer of the Pediatric Oncology Group of Ontario. Dr. David Hodgson is the medical director and chair in childhood cancer control for the Pediatric Oncology Group of Ontario, a radiation oncologist and clinician scientist at the Princess Margaret Cancer Centre, and associate staff at The Hospital for Sick Children.
Life for the Pugliese family changed forever when six-year-old Giacomo was diagnosed with acute lymphoblastic leukemia. For three years, they made countless trips to McMaster Children’s Hospital, watching their once-energetic little boy endure the challenges of cancer treatment, with interruptions to school and play dates.
Now 17, Giacomo’s treatment is behind him, but he is monitored regularly at the Pediatric Oncology Group of Ontario (POGO) AfterCare Clinic at McMaster Children’s Hospital for secondary cancers and heart issues — risks from his cancer and treatment. The clinic staff also emphasize the importance of a healthy, active lifestyle. His family is reassured that Giacomo will receive this crucial care for the rest of his life.
POGO’s network of clinics across Ontario play a vital role in the ongoing care of childhood cancer survivors, becoming an essential part of their lifelong health journey.
September is Childhood Cancer Awareness Month, a time to spotlight stories like Giacomo’s, which are increasingly common in Ontario.
While more kids are being diagnosed with cancer, more are surviving. Ontario’s childhood cancer survival rate is now 85 per cent — up from about 70 per cent in the mid-1980s. This is thanks to decades of clinical innovation, improvements in diagnostics and treatments, and approaches to addressing some of the related side effects.
While surviving cancer is certainly the goal, it is not where the journey ends. The impacts of childhood cancer can last a lifetime.
Childhood cancers are distinct from adult cancers in significant ways. For one thing, these cancers don’t result from lifestyle or diet. They come suddenly — and some are more likely to strike at a specific age. Typically, childhood cancers require intensive treatments, at major teaching hospitals, with highly specialized protocols. Consequently, care teams may be larger and include parents and caregivers as key decision makers.
A childhood cancer diagnosis impacts the whole family. One parent is often forced to give up work to manage the daily practicalities of their child’s care. Often, extensive travel or temporary relocation is required, uprooting families for months or sometimes years. This disruption reverberates, impacting extended family members, friends, teachers, classmates, work colleagues and communities.
Childhood cancers strike during a critical phase of development, when children and adolescents are marking key physical, mental and social milestones. As a result, two of every three survivors are at increased risk of at least one long-term side effect resulting from their cancer or its treatment, including heart disease, second cancers and cognitive challenges.
To address the unique complexities, ripple effects and long-term impacts of childhood cancer, POGO and its partners have built a system that provides wraparound care and support for children and families at every stage of the journey. Considered among the best in the world, Ontario’s childhood cancer system goes beyond diagnosis and treatment. Families are paired with nurses who help navigate the transition from hospital to home, and they can also access mental health services, financial supports, and programs that help survivors thrive into adulthood.
During Childhood Cancer Awareness Month, it’s important to recognize the tremendous progress made in childhood cancer care. But there is more we can do to ensure kids not only survive, but thrive.
It is vital that children with cancer and their families have access to the best evidence-based treatments and supports, closer to home. This requires strong, ongoing collaboration between care teams, hospitals, nonprofits, government, regulatory bodies, industry and others.
Over the past decade, we have also seen an increasing need for mental health services, a need that is urgently felt among the many who are impacted by a childhood cancer diagnosis. These priorities and others will be key components of Ontario’s Childhood Cancer Care Plan 2024-2029, a road map developed by POGO and its partners to be published later this month.
Ontario must continue strengthening its world-class childhood cancer system so that survivors like Giacomo can count on having the treatments, resources and supports they need today — and for life.
Creative Corner with Ramjot
Growth
When I first started creating this sculpture, it was an absolute mess. The structure and stability of the tree were a challenge to figure out but slowly it all started coming together. It was like putting the pieces together in a puzzle. I didn't fully understand why I created a tree until I started sculpting every little curve or indent, gluing on the leaves and adding the finishing touches. The tree symbolized my growth. Just like me, the tree encountered many obstacles when it was being sculpted. It took hours, days, weeks to finish and at some point, I felt like giving up on it. The tree expressed me. It started wonky but the more time and effort I dedicated to it, the stronger it got. Similarly, when I was recovering from my cancer treatment, it was hard to fit in with my peers at school and integrate into my new reality. But as the years went on and I got out of my comfort zone, I grew to be the best version of myself. My piece, Growth, shows the journey of my life and how I've grown into the person I am today.
Check out other Creative Corner works done by Dorian and Xander
Childhood Cancer Survivors Share How Oncology Professionals Helped Shape Their Lives
POGO recruited five individuals whose lives have been impacted by a childhood cancer diagnosis and are now working in the field of pediatric oncology in different capacities, 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.
These stories, which premiered at the 2023 POGO Symposium in November, shed light on how the experience of having cancer as a young person, and the interactions with oncology professionals along the way, can shape a person's life profoundly. 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 survivors.
Alexx’s Story
Alexx was diagnosed with acute myeloblastic leukemia as a child.
Today, she is a child life specialist, using her firsthand experience as a childhood cancer survivor to advocate for children, youth, fellow survivors and their families with various diagnoses.
Lindsay’s Story
Lindsay was diagnosed with Ewing sarcoma as a child.
Today, she is a pediatric oncology nurse, drawing from her personal journey as a childhood cancer survivor to care for children and youth with cancer.
Noor's Story
Noor had the misfortune of navigating both a cancer diagnosis and virtual school during the COVID-19 pandemic. Inspired by the oncology professionals who cared for her during treatment, she is now studying to become a nurse at Toronto Metropolitan University.
Eugene’s Story
Dr. Eugene Chang was a young medical student when he was diagnosed with Leukemia. His experiences as a patient helped him identify a gap in the system, which he has sought to fill since becoming Canada’s first physiatrist specializing in rehabilitation for cancer patients.
Kirsten’s Story
Kirsten is a two-time childhood cancer survivor and a young adult cancer survivor.
A strong advocate for childhood cancer and young adult cancer survivors, she now works as POGO's Program Coordinator for clinical and support programs.
Last updated: June 2024
Celebrating Down Syndrome Awareness Day and Darwin
Darwin recently turned 21, graduated high school, rang the end of treatment bell at CHEO and has been accepted into an Academic Assistance for Adults with Developmental Disabilities (AAADD) college program.
What was most exciting about ringing the bell?
I loved seeing all my favourite people from high school virtually on Google Meet. I saw Ms. Russett, and Ms. Coe, and the ladies in the office. All my favourite nurses came too. They helped me learn to count “1-2-3” before I had a needle!
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What are you most looking forward too now that you are 21?
I want to learn how to use a debit card and get a job where I can wear a nametag and a vest. I want to work at Walmart at cash register #7 and at the Apple store.
What will you do in your C.I.C.E. college program?
I will learn to take the bus with my phone, using Google maps. I want to learn about money math. At college I will see my friends and they have nice lockers.
Any shout outs to friends & family?
Thank you to my mom, she’s The Boss and always came to CHEO with me. The staff on 4 North were awesome. The Fire Safety Officer, Richard, came to teach me the rules about fire safety. I also did a FaceTime with Liam from the Ottawa Fire Dept. about river safety. I loved seeing my CHEO teacher, Ms. Nancy. She’s awesome and I learned to use assistive technology. Every day I wrote a page in my book with Book Creator.
Should I Apply for OSAP?
What is OSAP?
The Ontario Student Assistance Program (OSAP) is a mix of loans and/or grants funded by the provincial and federal government to help you pay for post-secondary school. The program is open to full-time and part-time students.
How do I know if I am eligible for OSAP?
While many of our clients say they are not eligible for OSAP because their parents’ income is too high, we recommend using the OSAP Aid Estimator to estimate what you could receive. Many clients are surprised that they are actually eligible. Plus, even if you are only eligible for $1, this may allow you to access other types of funding. Individuals with disabilities, for example, may be eligible for more grants, such as the Canada Student Grant for Services and Equipment (CSG-DSE) and/or the Bursary for Students with Disabilities (BSWD). A doctor or neuropsychologist must complete an “OSAP Disability Verification Form” for you. Your POGO Transitions Counsellor can help facilitate this.
*TIP: If an estimate is not yet available for your school year, try using the previous year or try again in the spring.*
I don't want any loans after post-secondary school. Why would I apply for OSAP?
If you are eligible for grants, you can request that you receive the "Grant Only Funding," essentially meaning that you'll receive grants but not the loan portion of OSAP. Typically you do not have to pay back grants. However, this would change if you are not taking the minimum course load, you decide to withdraw from your program or if your application is reassessed to show underrepresented income, for example. Speak with your financial aid office in advance if you'd like the "Grants Only Funding." See the OSAP Aid Estimator link above to see if you would be eligible for grants.
I need the loans portion of OSAP to pay for school, but I’m worried I won’t be able to pay these back after I graduate. What are my options?
First, repayment of student loans has been a little bit easier these past few years with interest on federal loans being waived for the COVID-19 pandemic. This was set to expire on March 31st, 2023; however, at the time of this writing, the Canadian government recently passed a Bill to eliminate this interest permanently. Remember, this does not apply to provincial loans, and some interest will still be accrued.
You also may be eligible for the Repayment Assistance Plan (RAP). Your eligibility is based on your family size and income. There are two stages: “Interest Relief” and “Debt Reduction.” For “Interest Relief,” the government may pay some or all of the interest accrued on your loan. For “Debt Reduction,” they will either lower or eliminate the required monthly payments for six months. You must apply for RAP through the National Student Loans Service Centre (NSLSC) and reapply every six months.
Applying for OSAP can be overwhelming and stressful, so don't hesitate to contact your POGO Transitions Counsellor, who can help you better understand the process or connect you with your school’s financial aid office.
Helpful Link
Let’s Talk About Scholarships!
Written by Lindsay VanSickle
POGO Counsellor London
Doing Good for the Childhood Cancer and Survivor Community
Austin: What was it like battling cancer as a young teen?
Eloise: I was 14 years old when I was diagnosed with cancer, just weeks shy of starting my Grade 10 year. I was already trying to grapple with big questions like, “Who am I?” and “Who do I want to become?” I was busy navigating life and all things that “normal” teenagers experience. Then, on top of this quest for identity, I was suddenly confronted with a life-threatening illness. I felt overwhelmed, confused and defeated. I had no idea how to react or how to feel. There is no better way to describe it than an absolute rollercoaster of emotions.
In my opinion, the fundamental difference between young kids going through cancer and teens, is their sense of awareness. Unlike many young kids next to me on the 8th floor of SickKids, I KNEW something was wrong. Actually, I knew EXACTLY what was wrong. I had cancer—a disease I never imagined I would have, especially at 14.
Many brave young children I encountered accepted this painful journey with a sense of “normalcy.” Despite all they were going through, they maintained their positivity and love for life. This was something I could not mirror—not for lack of trying. I wanted to exude the same level of strength, courage and positivity as many of those children but I was keenly aware of my painful, frustrating and exhausting journey with cancer. People sometimes forget that teenagers are far closer to identifying as adults than they are to children, yet, they are unique and require a certain approach to their care.
Austin: In what ways does your journey with cancer still impact you today?
Eloise: Despite being cancer-free for nearly eight years, my journey through survivorship has been far from easy. Cancer continues to influence many areas of my life, both positively and negatively. On a professional level, I have built a career inspired by my experience. The Good Hood Club is a loungewear company that champions childhood cancer care, most notably by donating 50% of its profits to childhood cancer organizations like POGO. Given my journey and fortune with cancer, I constantly seek ways to give back. The Good Hood Club has provided me with a vehicle to do that.
Although cancer is a “distant memory,” the emotional turmoil it sparked is not. Daily, I battle anxiety primarily linked to having had cancer as a teen. This has been an ongoing challenge for me; however, I am committed to finding ways to help me manage it. More abstractly, cancer has taught me many invaluable life lessons. Undoubtedly, my biggest takeaway has been my appreciation and love for life.
Austin: How did you decide to start Good Hood Club as a business and how did you come up with the name?
Eloise: While studying commerce at Queen’s, I took a digital marketing class in my 3rd year. One of the projects required us to create an e-commerce-based business from scratch. While most of our classmates saw this as merely a school project, my group saw it as an opportunity to do something good. My best friend, Chloe, and I wanted to create something meaningful. We thought, “What can we sell that will do good?” Our answer, “Hoods.” We also wanted people to feel part of a more significant community, a club. Hence the name, Good Hood Club.
Austin: What does Good Hood Club mean to you, both on a personal and a professional level?
Eloise: On a professional level, I could not have asked for a better way to dive into the workforce. I have gathered experience across various areas. I have had unparalleled hands-on experience in marketing, operations, strategy, manufacturing, finance...you name it! I am incredibly grateful for the experience Good Hood Club has given me to date. Over time, I hope to watch the company grow, continuing to touch the lives of those battling childhood cancer.
On a personal level, Good Hood Club has been an invaluable healing method. The easiest way to deal with my pain is by transforming it into purpose. Good Hood Club has allowed me to do this, and for that, I am eternally grateful.
Austin: Do you think as a survivor of childhood cancer that there are enough support systems in place to help families and children?
Eloise: I think that there is always room for improvement. However, I am eternally grateful for the help and support I have received over my journey. The childhood cancer community is filled with exceptional individuals who have made invaluable contributions to the community. I would love to see additional resources in the realm of psychosocial support. For me, mental health has been a massive part of my journey with cancer; however, it has not necessarily been a massive part of my care. In my experience, cancer has been just as much a mental health disease as a physical one; yet, it is not treated as such. I hope for a future where both aspects are equally prioritized in cancer care protocols, right from the beginning.
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Austin: Do you have any advice for young adults that survived childhood cancer that are struggling to find a career that will be fulfilling for them?
Eloise: It is easy to get caught up in what you think you want and should do versus exploring what you truly want and were meant to do. As a business student, I was on a path to a corporate career. I thought that was what I wanted. The second I took the opportunity to try new things and explore, I uncovered newfound passions I wanted to pursue. My advice would be to always experiment and try. Don’t stay committed to one path until you have taken the opportunity to see what else you might want to explore.
Eloise founded Good Hood Club with her university best friend, Chloe, to make their love for hoodies more meaningful and promote comfort during stressful times. 50% of Good Hood earnings go to POGO (Pediatric Oncology Group of Ontario) and their mission to achieve the best childhood cancer care system for children, youth, survivors and their families in Ontario and beyond.
You can find Good Hood at:
Website: https://goodhoodclub.com
Facebook: https://www.facebook.com/goodhoodclub/
Instagram: https://www.instagram.com/goodhood.club/
Austin is an ALL survivor who is interested in music and is an avid drummer. He’s also passionate about giving back to cancer charities that helped him and his family during their cancer journey.
Virtual Learning When You Have ADHD
From the Perspective of a Childhood Cancer Survivor - Leigha Bartholomew
Being a childhood cancer survivor, I know what it is like to fall behind in school. Months of my schooling were spent in a hospital and attending weekly medical appointments. I began to feel overwhelmed thinking I’d never be able to catch up or that I wasn’t doing as well as my peers. It was never expected that I would be at the same level as everyone else while I was going through treatment, at the time I believed I just wasn’t good enough. I’m sure a lot of cancer survivors have felt the same way at one point or another.
I had a similar feeling when post-secondary schools introduced a virtual learning environment in the midst of the pandemic. I started noticing a shift in my capabilities. A new learning atmosphere meant new challenges that I couldn’t adapt to as quickly as I had in the past. Attending classes became more difficult, focusing on work and remembering to finish assignments on time developed into more of an issue than it had been just a few months before, and my motivation to be involved in class discussions decreased. On top of that, I couldn’t bring myself to speak with my professors over Zoom about the challenges that I was facing. It seemed like I was in a rut and I didn’t know how to pull myself out.
My ADHD diagnosis came just a few months after we started learning virtually. While I was familiar with ADHD, I was surprised to learn that I had the disorder myself. Adding this on top of the other issues I had with mental health (I was diagnosed with Generalized Anxiety Disorder in high school) was not something I had even considered, especially so far into my education. If someone were to look at my grades, I bet they wouldn’t have considered it either. Luckily, I didn’t have to go through these challenges all on my own.
Because mental health and learning disabilities pose a challenge for a number of young people, there are resources that have been put into place by schools to help students get through their education. In post-secondary school, there are learning strategists or assistive/adaptive technologists for students seeking academic support. Your academic advisor is also available to help you find programs or services tailored for your specific challenges.
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Being a childhood cancer survivor can further complicate things. While some survivors may already be predisposed to having mental health and learning challenges, others can develop them due to the treatments they received or other related factors and experiences. These issues can also continue into adolescence and adulthood. Since most people working in pediatric oncology are aware of these challenges, there are specific resources available to survivors and their families. POGO AfterCare Clinic professionals, such as counsellors, art therapists, clinical psychologists and social workers are some of the resources available to help cancer survivors develop strategies related to the difficulties they might be facing with school or everyday life, and POGO School and Work Transitions Counsellors can help you to access these various resources!
My advice to fellow survivors would be to understand that you are not alone if you find yourself struggling. I am sure a lot of people can relate to me when I say that I prefer in-person schooling over the virtual classroom, but that doesn’t mean it’s any less scary having to make the transition. If my own experiences have taught me anything, it’s that everyone has a different style of learning. If you need help, reach out. No matter how difficult things might seem, there are always people and programs available to students and survivors if they need help.
Boxing for Mental Health
18-year-old Isla MacIntosh discusses how boxing helps her cope with her mental stressors
Taneisha: Can you tell me a little bit about yourself and your experience with childhood cancer?
Isla: I was diagnosed with leukemia when I was four years old and have been in remission since the age of seven. I work at a golf course in Ottawa and I just finished my first year in the Behavioural Science Program at St. Lawrence College.
Taneisha: Other than your family, does anyone else know about your diagnosis? Did you have to miss any school due to your cancer and its treatment?
Isla: My parents mentioned it to people they knew and our surrounding neighbours and, of course, my school knew. I missed kindergarten entirely so my first year attending school in person was in Grade 1. Everyone was very supportive.
Taneisha: Do you feel you continue to get the support you need?
Isla: My sister has done everything she could to support me ever since I was young. She pretty much gave up her childhood because of me. In my early teens, I realized how big my diagnosis really was, and I needed to find an outlet to relieve stress. At 14, boxing became that outlet. My whole family is supportive of my boxing.
Taneisha: How did you discover boxing?
Isla: I found this youth recreational boxing class in Ottawa where I grew up. The coach was the first female boxing coach. She was a big inspiration to me because she had cancer so I felt that I could relate to her. She also helped me find a great boxing school when I started going to school in Kingston. Now I train 3-4 days in person and on the other days, I do dryland training. Dryland training means conditioning, running, weights and other strength activities.
Taneisha: How did boxing help you with your mental health stressors and how did it help you get through your first year of college?
Isla: When I moved away for school in Kingston, I found a safe place for boxing with nice people, which helped me not worry as much about school. Boxing is very technical. When you are in the middle of it, you have to focus on boxing and nothing else. It takes you out of any stressful situation you might feel you are in.
Taneisha: What are your goals—both for boxing and your education?
Isla: I like to compete so my goal for boxing would be to go to nationals. My goal for school is to find a full-time job that relates to behavioural science.
Taneisha: Do you have any advice for other childhood cancer survivors who are going through something similar to what you are going through?
Isla: My advice would be to find an outlet that is important to you, especially if you are older and there are external pressures. It could be sports, music or something else. An outlet can be a safe place for you to express yourself.
Taneisha Kandiah was diagnosed with leukemia when she was 18 months old. She has been in remission since the age of three. She recently graduated from the University of Ottawa in life sciences.
Creative Corner with Holly
Holly Bokor's Port Illustration
Port is part of a triptych* of self-portraits about my memories from when I had cancer at age 14. A lot of medical experiences and journeys can result in feeling dehumanized, objectified. Port focuses on the wires and tools, with no identifying features of the figure. The background contains scans of old documentation from my own treatment. Though it’s a drawing of myself, the sense of identity is purposefully removed. It reflects my feelings of emotional detachment. Essentially, it’s an attempt to capture that strange dissociation that occurred while I was in treatment.
*Artwork made up of three pieces or panels
Holly is a recent graduate of Seneca College's illustration program. They find solace in expressing thoughts through line. You can find more of their work at congercine.com.