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!

For over 100 years, Lions Clubs around the world have served to improve health and wellbeing, strengthen communities and support those in need. Recently, Lions International added childhood cancer to their roster of global causes, promising to increase acts of support to families and children affected by cancer. This year, the Elmvale District Lions Club chose POGO as one of their beneficiaries of their annual truck draw, pledging $20K for POGO in 2022. In July, POGO sat down with Elmvale member, and Club president, Jenn Rebidoux to talk about their event.

POGO: Tell us about your personal experience with childhood cancer.

Jenn: I think we all have a personal story to share.  Mine is our eldest son, although not a young child, was in his 20s when he was diagnosed with a rare cancer. Our community rallied around our family to help us get through the diagnosis and the grueling treatments he went through. The chemotherapy and subsequent surgeries have been life altering for him.

POGO: How did you first hear about POGO and the work we do?

Jenn: During his District Governor year, Lion Jamie Jones introduced us to POGO. He is extremely passionate about this cause and connected us with POGO’s Chief Development Officer, Lynn Wilson, and POGO Interlink Nurse Tina Hamalainen who set up a Zoom meeting for our members to learn more about the impact our possible support would have on families affected by childhood cancer. We watched an incredibly compelling video that really demonstrates what families go through when their child is diagnosed with acute lymphoblastic leukemia. I don’t think there was a dry eye in the house. We also learned about how POGO Satellite Clinics across Ontario help families stay closer to home when their child is in treatment—two of these clinics are relatively close to our Club. I believe it took about five minutes for us to decide unanimously that we would support POGO with our annual fundraiser.

POGO: $20K will have a big impact on families with a child in cancer treatment. How did you raise such a large donation?

Jenn: Our Club’s Annual Truck Draw. This campaign is a major fundraiser in our community. Annually we raffle off a Ford F-150. We are so grateful to the ongoing community support, and I believe our participants would be proud funds raised though this campaign support such a worthy cause.

POGO would like to gratefully acknowledge the Elmvale District Lions Club and all the ticket purchasers of this year’s truck draw for their support.

Kathryn, like many 18-year-olds, dreamed of attending university. Unlike many her age, Kathryn was undergoing treatment for neuroblastoma when her dream came true.

It was at this point that Sarah Brandon met Kathryn. Sarah is a Counsellor in the POGO School and Work Transitions Program.

“Kathryn was totally spunky and she absolutely blew me away with her motivation to be a university student,” says Sarah. “That was her number one goal. Her number two goal was to fit in and not be seen as different despite being on treatment for neuroblastoma for 14 years of her life.”

POGO Transitions typically supports adolescent and young adult (AYA) survivors of childhood cancer and brain tumours who are faced with significant late effects. These late effects can interfere with their ability to achieve their educational and career goals beyond high school. POGO Counsellors facilitate a smoother transition for these survivors.

A recent study (seeking publication), The Transition to Meaningful Activity for Childhood Cancer Survivors: Understanding the Role of the POGO School and Work Transitions Program (Stasiulis, E., Boydell, K. 2020), reported positive mental and emotional health impacts of the POGO Transitions Program on survivors. POGO hypothesized that extending this support to additional survivor groups, such as youth on-treatment patients, would result in similar outcomes.

In 2021, POGO received $1M in funding from the Slaight Family Foundation for the Program’s expansion. Part of this grant is now funding a pilot project to explore extending eligibility to the Program to include young people, like Kathryn, still receiving treatment while making decisions about their future after Grade 12.

POGO Interlink Nurses work at hospitals with specialized childhood cancer programs and help families navigate the journey of a cancer diagnosis. They identified that there is a small but increasing number of youth still on treatment at a time when they are interested and able to plan for their school and work futures.

Because these patients are facing the additional challenges related to active cancer treatment (including medical disabilities), a collaborative model has been developed in which POGO Interlink Nurses, who have expert knowledge about the clinical care path, will refer clients and collaborate with POGO Counsellors who will apply their expertise in educational and vocational counselling and support.

“Many young people in cancer treatment have a complex diagnosis and treatment protocol,” says Denise Mills, POGO’s Provincial Clinical Lead of Pediatric Oncology Nursing, and Kathryn’s long-time nurse practitioner. “At a time when their health status is uncertain, we are investing in their future and helping them to reach their goals.”

“It was very valuable for me to have constant communication with POGO Interlink Nurse Arvinder Aulakh and Denise, who knew Kathryn and her family very, very well,” adds Sarah. “They were able to give me background information that was helpful to me as Kathryn’s advocate navigating through the Accessibility Centre’s bureaucracy. I was able to speak with the manager and explain how the Accessibility Centre needed to up its game in order for Kathryn to get the support and accommodations that were rightfully hers. From there, we found professional and sympathetic ears that enabled Kathryn to achieve her incredible lifelong goal of attending university.

Tragically, Kathryn passed away shortly before completing her first year but, along the way, she educated her educators on how to support a student like her with medical disabilities. Working with Kathryn was one of the great privileges of my career and such a rewarding experience. Her motivation, wisdom and beautiful family support were not only courageous, but absolutely inspirational to me.”

The POGO Transitions/POGO Interlink pilot project aims to contribute to the continued care and support of youth who are receiving cancer treatment at hospitals with specialized childhood cancer programs and experiencing challenges in navigating the post-secondary and work worlds as a result. The objective is to address this gap in service through a collaborative model of care. Youth included in this pilot project will qualify for a one-time consultation OR ongoing Transitions counselling based on need. After their participation in the pilot project, patients and/or guardians will be surveyed/interviewed about their participation. POGO Interlink Nurses and POGO School and Work Transitions Counsellors will participate in an evaluation to measure the pilot’s impact and success.

However, school wasn’t as easy as it was before.

“I struggled with memory, multi-tasking and focus. Still, in 2018 I graduated with a degree in biochemistry from York University and soon after was accepted into the radiation therapy program at the University of Toronto, a joint program with the Michener Institute of Education at University Health Network.

I picked the radiation program because, as a cancer survivor, I felt I could be supportive to other patients going through the same thing. I just wasn’t sure if it was the right choice for me. I was also processing my own and my parents’ thoughts and feelings about the time and money I had already spent obtaining a biochemistry degree. 

Luckily, it was at this time when I met Barb, my POGO School and Work Transitions Counsellor.

I was at one of my annual appointments at the POGO AfterCare Clinic at Princess Margaret Cancer Centre. I had been discussing some anxiety about my new career path and the POGO School and Work Transitions Program was recommended to me.

Barb helped me conclude that it was okay for me to have this newfound aspiration, and she was instrumental in helping me win a $5000 scholarship for childhood cancer survivors to pursue it.”

Then an unfortunate and unexpected situation happened during Dirk’s clinical practicum.

“I felt the trauma of treatment come back to haunt me. I was reserved and had trouble interacting with patients and other therapists. The school requested I take a break until January 2020 with the stipulation that I get support to help me manage.

Barb attended meetings with me at the university and facilitated letters to help in the adjudication process. She acted as a sounding board throughout. She also arranged for me to defer my scholarship until my return to classes. 

When I returned to school, things were going well until my last year, during my placement. It was only then, doing the job, that I realized what it was truly like and I found it wasn’t right for me. There was too much loud talking, shouting out numbers and instructions, and working at a fast pace while making sure everything was accurate; this just didn’t suit me after my cancer diagnosis. As someone who likes to take his time, not make quick decisions that can literally harm patients if I get the decision wrong, I just could not see myself doing this full time until I retired.”

Dirk’s career path to radiation therapy changed around the same time that the pandemic turned everyone’s world upside down. He found new pursuits; one of them was drawing on a latent interest in technology. Through online instructional videos, he began learning about web development and programming his own web applications.

“I didn’t pursue this before because I always felt pressured to go into healthcare—maybe because of my desire to give something back based on my diagnosis and survival. Then, I was on a virtual appointment with a nurse practitioner in my POGO AfterCare Clinic. I told her about my feelings related to the change in my career path and she referred me to the Canadian Cancer Society’s (CCS) Pediatric Family Counselling Program at Princess Margaret Cancer Centre.”

In keeping with POGO’s Childhood Cancer Care Plan goals to address the growing need for psychosocial services, POGO facilitated bringing the CCS pilot program to a POGO AfterCare Clinic to help survivors manage the impact of cancer on themselves or their family. The program complements the excellent personal care survivors receive in the POGO AfterCare Program by providing individual, private and confidential counselling to address ongoing needs or challenges. The program follows a brief therapy model, which is time-limited and focuses on the client’s presenting symptoms and current life circumstances. It emphasizes the strengths and resources of the client. 

Through his CCS counsellor and Barb’s ongoing support, Dirk has come to realize some important things about moving on from radiation therapy.

“Before counselling I felt scared about leaving the comfort zone of a career I was pursuing for three years of my life. I feel more confident now. I know nothing in life is easy. I have to work to get to where I want to be in the tech field. I also now see that healthcare is not the only way to help other cancer survivors; maybe there’s a way to help through this growing field of tech. Thanks to the resources of my CCS counsellor and my POGO Counsellor, I feel like I can be successful. I know I’m on a good path.”

Dirk has added the title of Presenter in the POGO Survivor to Survivor (S2S) Network to his list of achievements. In 2022, he will be leading presentations for other childhood cancer survivors on self-advocacy, something he has learned through trial and error over the years. Dirk sees his S2S presentations as another way he can give back to others and share some of his knowledge and life experiences after treatment so it can help others in a similar situation.

Arvinder Aulakh has been a pediatric oncology nurse at SickKids for over 18 years. In 2020, she joined the team of POGO Interlink Nurses working in hospitals across Ontario to provide culturally sensitive, family-centred care when a child is diagnosed with cancer. POGO Interlink Nurses help families navigate the healthcare system throughout the child’s cancer journey. They are invaluable members of the child’s healthcare team helping families decipher unfamiliar medical terminology; working with interpreters to remove language barriers; providing school support for the child, classmates and staff; locating community resources; and supporting siblings and other family members. Arvinder works with families in the Peel/Halton region of The Greater Toronto Area, and does so in English and her native language of Punjabi, with a solid understanding of Urdu and Hindi. The therapeutic relationship POGO Interlink Nurses are able to establish with families is unique, and speaking a second language has allowed Arvinder to make an extra special connection with many in her care. She knows what it can be like to encounter barriers when English is not your first language and she brings that sensibility to her work with families.

“Many families trust the medical teams caring for their child. When I meet families, they are reassured that their child’s care plan meets a standard of care across North America. Families feel supported when treatment education, school and work are discussed because these are aspects of their lives they worry about when their child is diagnosed.” 

“My ability to communicate with children and their families in their native language of Punjabi gives them the opportunity to express their experiences through the cancer trajectory. Families are able to ask questions to understand the diagnosis, prognosis, treatment plan, and support systems available in their community and school planning.”

Giving voice to psychosocial support 

Home visits are an integral part of the POGO Interlink Nurse role. During visits, nurses can meet the extended family, like grandparents. When there is no language barrier, all family members are able to participate in the healthcare teaching Arvinder does because they understand the information and can ask questions. The psychosocial support this offers is enormous for the family and child in treatment.

“Parents and other family members who are able to express themselves in their language are able to look for emotional and mental health supports as opposed to only practical support,” says Arvinder.

​“I can remember one mother telling me that she felt so relieved that she could call me anytime with a question or concern and speak in her language. Another mother said, ‘it was nice to just talk.’”

“Working with these families, I have learned that they may not have been fully aware of the supports available to them because they didn’t understand the information given to them in English. I have been able to encourage families to advocate for themselves which allows them to feel empowered.”

“Speaking to families in Punjabi has allowed me to provide care that is unique to their needs based on their cultural, religious and spiritual backgrounds. This ultimately helps reduce their stress.”  

​“With my cultural knowledge, I am also able to understand a family’s decision about certain aspects of care. For example, some families have specific prayers that are done on specific days that might interfere with treatment days. I can advocate for these families to have a one-off change in their treatment day to accommodate the prayer. I also understand the cultural context that families reference, like certain foods, holidays and customs.”

Arvinder became a POGO Interlink Nurse to develop pediatric oncology skills in other aspects of care, namely providing specialized childhood care with an additional focus on supporting extended families, the child’s school community and family’s wider community. She believes that families appreciate the ability healthcare providers have and effort they make to offer culturally sensitive care. For the families in her care for whom English is not their first language, Arvinder says, “I have a lot of empathy for these families. As a proud South Asian woman, I am especially privileged to serve South Asian families in my catchment area.”