The idea for the Kitchener Kids with Cancer Run/Walk came to me while I was running in my first half marathon in 2013. These races can be very inspirational. There are people cheering at the side of the road encouraging the runners with signs like, “Smile if you don’t have underwear on” and “The pain goes away, but electronic results last forever.” Although these signs put a smile on my face, my personal reasons for completing the race were all the memories of the kids I have been blessed to meet in my role as a pediatric oncologist at Grand River Hospital. If they could endure what we put them through when they are fighting cancer, then surely I could make it to the end. The idea to organize a race to raise money for children with cancer came to me that day, growing with each kilometre, and by the time I crossed the finish line, I had the beginning of a plan.
In 2014, the first Kitchener Kids with Cancer Run/Walk took place at the back of the hospital in the doctors’ parking lot. We had about 135 participants and we raised $17,000 in support of POGO and the services they provide to our young patients and their families. We thought this was a great success. Little did we know that this race would grow to be a huge event, touching the lives of many in the community.
We have since outgrown the hospital parking lot. The race now takes place at the Waterloo Region Museum, attracting close to 600 participants. To date, we have raised over $350,000 for POGO. It is incredible to see how a community can come together to fight for such a great cause. This race has turned into a way to support the kids who are currently fighting cancer and to remember those who have lost their battle. I am thankful to all of the families that I have had the pleasure of caring for and for the wonderful committee members who are the real reason that this race is such a success.
The 2022 Kitchener Kids with Cancer run takes place on Sunday, September 11. Everyone is welcome and we look forward to seeing you all there. Learn more at www.kwrunforpogo.com
Leaving a legacy in your will can help fund important long-term projects that will make a deep and meaningful impact on many people’s lives. The Silva family is feeling immense satisfaction knowing their mother, Dr. Mariana Silva, made POGO a beneficiary in her will and that her life’s work will continue.
“Our mother dedicated most of her adult life to advancing care for children with cancer,” says Tomas Silva. “It was her desire that the work she started in life would continue long into the future. It is comforting to know that through this gift, the impact she made as a committed pediatrician and passionate hematologist and oncologist will continue for years to come.”
Dr. Mariana Pradier Silva, 1959-2021
For more than three decades, Dr. Silva made a significant impact on children and youth with cancer, survivors of childhood cancer and their families in many ways, including through her participation on the POGO Board of Directors and POGO’s clinical initiatives across Ontario. A true champion of childhood cancer care, Dr. Silva was instrumental in the development and implementation of the POGO Provincial Pediatric Oncology AfterCare Program and was a key representative on several initiatives to improve equitable access to care for kids with cancer around the world.
Including POGO in your will
POGO’s mission is to achieve the best childhood cancer care system for children, youth, their families and survivors in Ontario and beyond. As a charitable organization, POGO relies on donations and government funding to run trusted programs and services, many of which have been adopted or modelled nationally and internationally across various areas of care. We are humbled that supporters like the Silva family are now taking their contributions one step further by including POGO in their estate plans and wills.
When to start planning legacy giving
Experts say it’s a good idea to update your will after any significant life event, such as a birth, divorce, death or change to your financial status. Without estate planning, you will not be able to influence how, when and to whom your assets will be distributed after you die. Creating a will is your opportunity to leave a legacy to beloved family and friends and the causes you have respected and supported during your life.
Leaving a legacy gift to POGO, when just a small percentage can have a significant impact, is an invaluable way to make an ongoing and meaningful contribution to childhood cancer care. Charitable bequests also have tax benefits for your estate, which ultimately help other beneficiaries.
If you’re interested in learning more about leaving a legacy gift to POGO, contact us at firstname.lastname@example.org.
Leave a Legacy Month (May) is a community-based public awareness campaign that encourages people to leave a gift through their will or another planned giving vehicle to a charity or cause that is meaningful to them.
In a podcast for Catch Psychotherapy, POGO Interlink Nurse Tina Hamalainen discusses the psychosocial impacts of a childhood cancer diagnosis on the child, and their family and school community. Here are some highlights, published with permission of Catch Psychotherapy.
Cancer means different things to different people and it can be very stressful to hear those words about your own child; it’s one of the biggest stressors that a family ever experiences. And along with that are many emotions and feelings which include fear of losing their child, sadness, anxiety, depression, fear of recurrence. Suddenly their lives have turned upside down. Anything normal has changed; families are in a situation that they didn’t prepare for, including potentially stopping work to care for their ill child.
Siblings experience a lot of the same emotions as the ill child or their parent—the same fear, worry, anger, guilt. It’s a very common theme for siblings to feel neglected or abandoned; and then they feel guilty for feeling that way. There’re so many mixed emotions that these children and adolescents are trying to process.
Kids and adolescents experience social isolation. They’re suddenly not able to attend school, for example. School is their norm, it’s their place to be in society. And oftentimes, especially at the early stages of diagnosis, in-person school is not possible.
Depending on the type of cancer, if they had a brain tumour for example, radiation therapy can have impacts on their memory or their cognitive functioning, where they might need academic accommodations.
Despite a cancer diagnosis, or maybe because of it, for some families, the normalcy of school allows them to focus on the future—future goals and academic achievements. The family might have concerns about academic success. Parents worry about how their child could possibly continue going to school while on treatment. The child can feel great stress about not seeing their friends every day and being forgotten or missing out, there is anxiety about keeping up academically and graduating high school with their peers.
For the teacher, it might be their first experience of having a child in their classroom with cancer. And at that same time, they’re being bombarded with questions from their other students about this child’s diagnosis and they do not have the experience/knowledge to support their students.
We can underestimate emotional recovery which can linger longer than physical recovery with fears of relapse or a secondary cancer, and adjusting to a “new normal.”
The above tips were published with permission of Catch Psychotherapy. Listen to the full 30-minute podcast with POGO Interlink Nurse Tina Hamalainen and Janet Morrison of Catch Psychotherapy here: Episode 16 | How Childhood Cancer Affects the Mental Health of Children and Their Families w/ Tina Hamalainen
Kafia Ibrahim is a registered nurse whose personal experience as a two-time childhood cancer survivor inspired her career path. She works in the haematology/oncology unit at The Hospital for Sick Children (SickKids) in Toronto and attributes some of her success to touchpoints she had with a POGO Interlink Nurse while in treatment and a POGO Counsellor after treatment.
Kafia was diagnosed with rhabdomyosarcoma, a soft tissue cancer, when she was eight years old. Her treatment involved chemotherapy and radiation. At 15, Kafia relapsed and faced a second diagnosis of another soft tissue cancer. This time, surgery and chemo were part of her treatment protocol.
“I was too young to remember the details,” Kafia says “but I know that from the time I was diagnosed, my family had very positive experiences with Tina, my POGO Interlink Nurse. I attended Campfire Circle (formerly Camp Ooch and Camp Trillium) because of her and made lifelong friends, and she came to our home and connected us to many community and financial supports.”
After her treatment ended, Kafia faced many challenges pursuing her academic and career goals.
“Those challenges were a result of the side effects of treatment,” she explains. “With nothing to control my pain and the resulting negative impact this had on my mental health, it took me longer than usual to finish high school. In Grade 10, I went from online school, to alternative school and back online. I utilized many of the services of the POGO School and Work Transitions Program during this time. When I was finally able to finish high school, my POGO Counsellor, Lucie, helped me with my university applications. She also notified me of scholarships that I would be eligible to apply for, and I received one from Childhood Cancer Canada. My POGO Counsellor also helped me get extra time for tests at school, something I didn’t even know was possible. She helped me know my rights and build my confidence to ask for what I needed. I don’t know if I would have done as well as I did if it were not for my POGO Counsellor.”
While Kafia’s experiences through her cancer journey were not all great, the positive ones led to her career decision.
“I have had my fair share of experience with healthcare providers, especially nurses,” says Kafia. “I’ve experienced the good, the bad and the ugly. The amount of influence that nurses can have on a patient’s experience with their disease is more than one would expect. I still remember the wonderful nurses that helped get me through some of my hardest days. Whether it was singing my favourite song with me, celebrating my 16th birthday when I was in-patient or providing me with a shoulder to cry on when things got too much. I want to be able to provide this personal connection for another child and their family that may be going through a similar situation.”
From 2019 to 2020, while in her nursing program, Kafia had the opportunity to work as a clinical extern at SickKids. In this mentored nursing assistant role in the haematology/oncology unit, she gained invaluable experience. She got to know families and found many ways to offer them respite, like staying at their child’s beside so they could take a coffee break. Remembering how bored she was as a patient, Kafia made it a point to entertain her patients. She learned the importance of building trusted relationships. Also, working in the hospital where she had received treatment was a way to see if any underlying or unresolved emotions would surface that might get in the way of her career success. Thankfully, none did!
“This job allows me to meet the bravest people. I feel like my experience with cancer allows me to see the bigger picture when providing care to patients and their families. My career plans include becoming a POGO Interlink Nurse in 3 to 5 years and finding ways to better support the transition from pediatric to adult care for childhood cancer patients. When I see the impact that my care can have on patients, it motivates me to work harder.”
Kafia Ibrahim became a registered nurse at The Hospital for Sick Children in 2021, one year after earning her Bachelor of Science in Nursing from the Seneca/York Collaborative Program. She is a two-time childhood cancer survivor. Her POGO Interlink Nurse and POGO Counsellor inspired and supported her career goals.
Vinesha Ramasamy was 15 years old when she started noticing a lot of swelling and sharp pain in her left leg. The intense pain made it difficult to walk and almost impossible to go up and down stairs. Her family’s physician thought it was typical of adolescent muscle strains and Vinesha was told repeatedly to take pain relief and take it easy.
“Thankfully, an amazing teacher took notice,” says Vinesha. “She reached out to my parents and told them that my symptoms didn’t seem normal and strongly urged us to go back to the doctor and insist on an X-ray. When the family doctor got the results, he immediately referred us to an orthopedic surgeon. When the surgeon was going over the X-ray with my family, I stopped him and asked, ‘Do you think it’s malignant?’ He paused and said, ‘I think it might be, and that is what we are going to try to find out.’ My mom hesitated. She didn’t know what ‘malignant’ meant.”
Vinesha and her family arrived in Canada as refugees from Sri Lanka when she was a child. English was her parents’ second language and they had no social network to help them navigate the healthcare system. In that moment, Vinesha knew she was going to have to guide her parents through everything that was about to come next. Indeed, in the days, months and years that followed, she was the one taking notes and explaining everything to them.
Alyson Bierling is a recent graduate of McMaster University’s global health master’s program and a registered nurse in the pediatric hematology and oncology inpatient ward at McMaster Children’s Hospital. The Ramasamy family’s experience does not surprise her. At the 2021 POGO Symposium, she shared preliminary findings presented in abstract (summary) format on the challenges faced by immigrant families experiencing a diagnosis of childhood cancer.
“While a childhood cancer journey is arduous for any family, these families struggle in unique ways,” says Alyson. “Immigrant families are often left in the dark about the condition of their child due to language barriers, cultural needs often go unmet, and families grapple with a complicated and unfamiliar healthcare system that is structurally inequitable.”
In the early days after her diagnosis, Vinesha went through ten months of aggressive, high-dose chemotherapy with many complications and side effects. She was supported by POGO through the POGO Satellite Clinic at Credit Valley Hospital, allowing her to have some of her tests, monitoring in between chemotherapy cycles and hundreds of blood transfusions done closer to home.
“POGO also offered much-needed financial assistance for basic things like meals—without that, I know it would have been almost impossible for my parents to handle the responsibilities that come with parenting a child with cancer,” says Vinesha.
Three days after her 16th birthday, she underwent surgery and was luckily spared from a leg amputation. However, because drastic amounts of muscle were removed and her leg was reconstructed internally with prosthetics, Vinesha was told she wouldn’t walk again and was given the slim hope that with a lot of physical rehabilitation, maybe, someday, she would progress to an assisted device.
“I was officially disabled,” she says. “My parents were working minimum wage jobs without any private insurance or financial coverage for physiotherapy or special equipment. Subsidized support would have greatly accelerated my recovery, but we weren’t aware of any available resources. Instead, I learned some exercises and spent the next twelve years doing a few minutes of daily physio in my bedroom with Velcro straps, an elastic band and some ankle weights. I can now walk with some challenges, but it is tragic for me to think about how that lack of specialized, focused physical therapy has affected the rest of my life.”
Alyson’s research confirms that families like the Ramasamys are often isolated and lack support to assist with their practical and emotional needs.
“Immigrant families face discrimination and often receive disparate care,” she says.
Her research sought to identify strategies that childhood cancer programs can implement to address these barriers.
“If we do not address them,” she adds, “the socio-cultural and systemic disadvantage already experienced by immigrant families will be further exacerbated. Addressing barriers may ease the demands placed on families and promote more equitable care for immigrant patients.”
Strategies for Addressing Barriers Faced by Immigrant Families from Alyson Bierling’s study titled Exploring the Challenges Faced by Immigrant Families Experiencing Childhood Cancer: A Scoping Review
“Today, after also having survived a serious lung cancer recurrence, I am blessed to be monitored regularly for late effects at a POGO AfterCare Clinic in Toronto,” says Vinesha. “I am truly grateful to be alive, however, I know things could have turned out better for me and for many other survivors and families like mine. Many immigrants and refugees that come to this country have a ‘don’t-make-a-fuss’ mentality. They may be in survival mode or suffering from PTSD. It is essential for doctors and hospital staff to keep in mind that just because we are not persistently complaining it doesn’t mean we are fine; it could just mean we are not being asked the right questions.”
Vinesha Ramasamy is a two-time cancer survivor. She graduated from the University of Toronto with High Distinction at the top of her graduating class in commerce and finance, and currently works in global sustainability and corporate citizenship at a major financial institution. Her life revolves around contributing to various not-for-profit organizations in mentorship, advocacy, public speaking and striving for policy reform with the goal of equitable outcomes, healing, dignity and better lives for everyone, primarily marginalized groups. Vinesha spoke at the POGO AfterCare Education Day on May 14, 2021, where she shared her lived experience on intersectionality within the healthcare system with childhood cancer healthcare workers from across Ontario.
Alyson Bierling has been practicing as a registered nurse in the inpatient pediatric hematology/oncology unit at McMaster Children’s Hospital since 2019 and is currently working as an oncology nurse educator in Rwanda. She received her Bachelor of Science in Nursing at McMaster University in 2018 and went on to complete her Masters of Science in Global Health at McMaster University in 2021. Alyson’s research and clinical interests include health equity and refugee health. She leads a working group that focuses on improving care for culturally and linguistically diverse patients.