By Maryam Kraishi
I was diagnosed with cancer when I was just four years old, but what is surprising to most people is that I still live with a tumour in my brain stem.
Removing the tumour has never been an option because of its location. That kind of surgery could cause severe side effects or even death.
Every few years, depending on the growth of the tumour, I undergo whatever suitable treatment is available. I also have a magnetic device with a hollow tube called a shunt running from my head to my stomach. The shunt helps to relieve the pressure on my brain by draining the fluid from the cysts surrounding the solid tumour and redirecting it to my stomach, where it can be reabsorbed
I have spent most of my life in and out of SickKids. This is all I have ever known…until recently.
In February, I completed a course of radiation at the Princess Margaret Cancer Centre. This was my first transition from the children’s hospital into adult care. The move felt like losing my second home and all the people I have gotten to know over the rst 14 years of treatment. People like my POGO Interlink Nurse Cory, who was my rock and my comfort person. She coordinated conversations with my peers at school, helped me access accommodations, introduced me to resources, and made navigating school, life and treatments possible for my younger self.
In the adult system, I don’t have a Cory or a team of professionals working together under one roof to support me. While I am lucky because I attend a POGO AfterCare Clinic where all my health information is housed, it is not a one-stop shop. I must go to different hospitals for all the necessary monitoring, including regular MRIs, X-rays, blood work and occasional CT scans.
As you can imagine, all of this has taken its toll on my mental health.
Seeing my family suffer because of my health issues was difficult. It was as though the weight of their stress was on my shoulders. By the time I reached my late teens, I was feeling like a burden. My whole life, I was taking, taking, taking, without the capacity to give.
Eventually, I sought counselling and was formally diagnosed with anxiety and depression. My counsellor taught me other ways to cope, and I can see that my life has value.
And when I started university, my POGO Interlink Nurse introduced me to another resource: my POGO Transitions Counsellor. She helped me navigate the university’s disability services to access the accommodations I need. She also introduced me to scholarships specific to survivors of childhood cancer and continues to help me balance my ongoing health issues while going to school. All of this has been integral to my academic success and mental health.
I know part of my life’s purpose is to do something that makes a difference in the lives of kids with cancer, and it starts here by raising awareness of the challenges children and survivors face so that we can help them overcome them.
In this video, Maryam Kraishi describes her cancer journey and struggle with mental health issues as a result of living with a brain tumour.
As a survivor of childhood cancer, I know many would think that once treatment ends, the struggle is over and that the hardest part is finished. However, I know for me and many other survivors I have spoken with, treatment was the easier part of the cancer journey. You had a protocol (a treatment plan), support and resources that seemed to me to be available 24/7, and a team that you could rely on for information. When I entered survivorship as an adult, I immediately felt the difference; mostly, that resources and supports didn’t feel as close at hand, and I had to figure out a lot of things solo. I worried about a possible lifetime of late effects, never really knowing when they could arise.
I was diagnosed with acute lymphoblastic leukemia in November 1998 when I was 10 years old. I completed three years of chemotherapy and then in November 2002 I relapsed. When my treatment ended in 2005—chemotherapy and cranial radiation—I was 18 and no longer able to be seen at my pediatric centre. It was five years after my discharge, at the age of 23, when I learned about the POGO Provincial Pediatric Oncology AfterCare Program. I was so excited to self-refer to the Program! Ever since, I have been seeing my team at the POGO AfterCare Clinic at Princess Margaret Cancer Centre yearly and it changed everything for me in terms of my survivorship.
Every 1 – 2 years since my first POGO AfterCare Clinic appointment, I receive an echocardiogram because some of the drugs I was treated with can be cardio toxic. It is reassuring to know that the team takes my heart health seriously and I am monitored for possible long-term effects. My last echo, in 2021, showed some irregularities with which they wanted to follow up. To many, this would be scary. To me, it is helpful to know that I have a team of medical professionals communicating and working with me around next steps in my care.
When I first started my follow ups with the POGO AfterCare team, we had some discussions about fertility. I admit I wasn’t really interested in the topic at the time, so I never took the opportunity to pursue their referrals. However, when I turned 27 and they asked me if I wanted to explore my fertility options, I said, “yes!” I had two referrals over two years and both physicians helped me better understand my options.
In 2017, at age 30, I was diagnosed with a secondary cancer (unrelated to my childhood cancer), and that prompted me to request a referral to a genetics program to see if I had any genetic predisposition to cancer. While I’d had a similar referral before, this time around everyone agreed it was more important than ever. The outcome is that I now have a more thorough understanding of my risk from a genetics perspective.
I have also been referred to neuropsychology (for testing for accommodations for school), imaging (MRI, ultrasound and bone density) as needed or supported by research, physiatry (for pain management) and ophthalmology, amongst many other areas of care. I am also reminded by my team to see my optometrist for any eye issues, my dentist for oral health and to make sure I see my primary care provider/family doctor in between visits for other health issues that are not cancer related.
But the mind is a funny thing. Yes, I trust my AfterCare team and have the utmost confidence they would continue to support any kind of referral I need. Yet, I worry that I may be at risk of thyroid and breast cancer due to the radiation I received as part of my treatment when I relapsed. My POGO AfterCare team is so kind to reassure me at every visit (literally) that I am not at an increased risk and they explain to me why. These ongoing conversations put my mind at ease and I am very appreciative of the time the team takes with me, each and every visit.
I realize now, that, alongside my primary care provider, the POGO AfterCare Clinic is the best place for me as a childhood cancer survivor. They are able to monitor for possible late effects and refer me to services within my cancer centre so that my care is in one place. If I ever have reasons to believe I need to be seen sooner because of a cancer-related side effect, I know I can call or email the Clinic and they will respond accordingly.
AfterCare is not about seeing my healthcare team for everyday issues, but ensuring that the treatment I had as a child does not impact me as an adult and, if it does, it can be caught early. It makes me feel secure, listened to and in control of my survivorship.
Kirsten Efremov, MPH, is a childhood cancer survivor who has been monitoring her health annually in a POGO AfterCare Clinic since 2010. She earned her Master of Public Health at Brock University and works at POGO supporting the organization’s survivorship, psychosocial and strategic initiatives. Kirsten believes in giving back to the community and volunteers with causes that support children and youth going through cancer treatment, and survivors of childhood cancer.
The return of the POGO Multidisciplinary Symposium on Childhood Cancer to an in-person event (with a virtual component), was a memorable experience. It was the culmination of two years of disrupted planning and pivoting as we navigated the ever-changing concept of conferences in a pandemic world. While there was an air of speculation about whether we would be allowed to gather together to learn and share in the fall of 2022, the intense work leading up to this event was gratifying.
For me personally, the POGO Symposium had a welcoming, reminiscent feel. The theme of CNS tumours is very much aligned with my clinical interest and expertise, and I was reminded of attending a POGO Symposium in the late 2000s on this same topic, when neuro-oncology was becoming the focus of my practice. To see so many iconic people in this field who are now my colleagues and friends, was very meaningful. As I listened to the many excellent talks and reviewed some fascinating posters, I could really reflect on the big picture and the progress in this field.
Honouring Dr. Bouffet’s career of treating CNS tumours
And to have a glimpse at the big picture, one could look no further than to Dr. Eric Bouffet, a preeminent pediatric neuro-oncologist, recently retired. This year’s Symposium was a chance to honour and reflect upon his extraordinary career, and also for us to hear from his many different perspectives as he shared stories of what it took to care for children with CNS tumours over many decades, and how pediatric neuro-oncology evolved to be the sub-specialty that it is today. With humour and poignancy, Dr. Bouffet graciously gave two talks that were the perfect “bookends” to a great conference, opening Friday morning with his personal journey and closing out Saturday exploring the many relationships and connections he has built over the years. I’m sure I was not alone in feeling inspired by his lifetime of contributions.
Exploring genetics, data, research and a new era of treatments
Drs. Anita Villani and Anirban Das explored their fascinating clinical and research work in the field of genetics, piecing together the threads that underlie the risk some children and their extended families face. They taught us how meticulous tracking of rare disease patterns can not only open up our understanding, but lead to surveillance protocols that can make a positive impact and how this work will help us expand our knowledge of what drives pediatric cancers.
I had the privilege of moderating the workshop “Harnessing the Power of the Rare Pediatric Tumour Cancer Registry” with Drs. Lafay-Cousin and Annie Huang. They weaved a story of gathering global data in order to help understand the rarest of the rare CNS tumours, and explored how this could be used to push forward a new generation of treatments. The workshop on end-of-life care was given by two expert speakers, Sondra Leblanc and Kathy Perko, who captivated the audience with real-life experience and insight into a heartbreaking world that they have the honour of being invited into.
While novel scientific discoveries and treatment protocols address the “now” for our patients, Dr. Hallie Coltin presented research about “big data” on the other end of the spectrum—for those who survive into adulthood, and the overall consequences to their health and lives that the burden of cancer and its treatment can create. This paired well with an exploration by Dr. Joel Tourigny into mental health outcomes, which wove research outcomes with an in-depth understanding of how cancer can interact and interfere with the developmental trajectory of children, adolescents and family members. Dr. Tourigny reminded us that we need to understand the larger impact of what we do today in order to improve tomorrow.
The cutting edge of our field was highlighted by several terrific talks. Dr. Vijay Ramaswamy’s overview of how treatments have (and have not) evolved over the years led into a brilliant showcase of the new era of medical treatments
Developmental stage, not just chronologic age, key when caring for AYAs
Over the years, POGO has become a champion for the adolescent young adult (AYA) cancer population, and this was evident in Dr. Brooke Cherven’s sexual health talk, followed by an interdisciplinary panel of adult practitioners who were committed to breaking down perceived barriers for diagnosis and treatment in a world where chronologic age can determine care. These talks challenged us to remember that our patients may abruptly “graduate” into the adult healthcare system on a specific date, but their developmental stage, lived experiences and tumour biology all have their own timeline.
Patient and family stories inspire
The buzz around this year’s new addition of digital storytelling was unanimous—from inspiring to tear-jerking, the visual narratives blew us away with their creative and high-quality portrayal of patients’ and families’ lives. Each one had a different texture and brought an important part of the cancer experience to the forefront. In addition to these stories, a workshop on family decision-making featuring two mothers, Jennifer Baltzer and Cindi Shoot, and a veteran nurse expert in the field, Janet Deatrick, had a tremendous impact on the audience. I am not sure there was a better way to weave the patient and family experience into this year’s Symposium and the audience was deeply moved by the words, stories, music and visuals that were shared throughout the two-day conference.
Dr. Adam Fleming is a staff hematologist-oncologist at McMaster Children’s Hospital in Hamilton, Ontario; an associate professor of pediatrics at McMaster University; and a member of the planning committee for the 2022 POGO Symposium.
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.
The majority of children’s cancer trials available in Ontario are led by the Children’s Oncology Group (COG), the largest collaborative group in the world devoted exclusively to childhood cancer research. As noted on the COG website, “clinical trials are used to determine the most effective and safest treatment for a disease.” The five Ontario hospitals with specialized childhood cancer programs, all of whom are POGO partners, are members of COG based on their ability to provide specialized pediatric care and comply with ethical and regulatory standards of 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.
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:
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.
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 email@example.com