Blog
How the Germ of an Idea Spread in a Community
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.
A few months later, I met with the organizers of the half marathon and convinced them to help put my plan into action. That first year, in 2014, the Kitchener Kids with Cancer Run/Walk took place at the back of the hospital in the doctors’ parking lot. Patients and families attended, 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. In 2018 we raised $68,652.68 for POGO. It is incredible to see how a community can come together to fight for such a great cause. Children’s hockey teams participate, a local church closes for the day to walk, run or volunteer, and our beloved Kitchener Rangers hockey team comes out to support this event. 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 2019 Kitchener Kids with Cancer run takes place on Sunday, September 8. Everyone is welcome and we look forward to seeing you all there. Learn more at www.kwrunforpogo.com
Dr. Jodi Rosner was awarded the Friends of POGO Award at the 2018 POGO Symposium in Toronto.
Sam’s Story: Focusing on Ability, Not Impairment
Sam Baik
I was seven years old, living in South Korea, when I was diagnosed with a brain tumour and treated with a 12-hour surgery at Seoul National University Hospital. I can still remember the atmosphere in the operating room—it was cold and not a friendly setting for kids. As a young boy in an adult hospital it was very scary, but my dad was with me and comforted me until I fell asleep. The surgeon was not able to remove the entire tumour because it was pressing against my optic nerve, so I have been left with low vision and weakness on the left side of my body.
My family moved to Canada when I was 10 years old because my parents wanted better opportunities and better medical care for me. Shortly after we arrived, I developed severe headaches and was hospitalized at McMaster Children’s Hospital in Hamilton. I was diagnosed with hydrocephalus, an accumulation of cerebrospinal fluid within my brain, likely related to my tumour. This typically causes increased pressure inside the skull. The setting of this hospital was very different from the one I was treated at in South Korea. The staff at McMaster are used to children and made me feel very comfortable about my treatment and medical procedures. I received a shunt implant that will remain in me for the rest of my life. A shunt is a tube that is inserted to divert the fluid away from my brain and, luckily, I have lived headache-free since then.
As part of my follow-up care, I receive MRIs every six months at a POGO AfterCare Clinic. In 2010, the test showed my tumour had grown. I received 70 cycles of chemo over an 18-month period. It shrunk the tumour a bit and it has remained stable ever since. I guess because of all my experiences in childhood, I always knew I wanted to work with children when I grew up. When I was ready to apply to post-secondary, I started to work with a POGO academic and vocational counsellor who helped me with the transition from high school to college. She helped me with things like adapting to new academic pressures and getting special accommodations because of my vision and mobility impairments.
I am proud to say I have graduated from Mohawk College with a degree in Child and Youth Care and I got a job at the YMCA afterschool program. I facilitate activities for kids in Grades 3 and 4. I love it because the kids are honest and energetic. I recently applied for and was offered the position of workshop facilitator for POGO’s Survivor-to-Survivor Network where I will use my personal experience to lead discussions on topics that are relevant to other childhood cancer survivors. Topics include employment, education, advocacy and self-disclosure. Self-disclosure can be a tough topic to tackle. The workshop revolves around how childhood cancer survivors disclose information about their disease, its treatment and resulting health complications to future employers and other people they are close to. It focuses on changing the language around any impairments they have, to describing what they CAN do. As survivors, we have overcome many difficult situations in life and we are stronger for it, more resilient. We have a lot to offer employers who are willing to see past our disabilities. I am excited for this opportunity to be a POGO workshop facilitator because I want to empower survivors to overcome the barriers that have resulted from their cancer and not let these challenges hinder what they can achieve in life. Because of the support I received from POGO academic and vocational counsellors, I was accepted to college, I have a diploma and I was able to gain relevant work experience. I just want the same for other survivors.
By Sam Baik
Sam’s story first appeared in the 2018 Community Impact Report, page 14. Sam has since completed a successful term as a Survivor-to-Survivor Network facilitator.
A Genetic Mutation; A Lifetime of Cancer Screening
Yasmin Nasrati
Adapted from Yasmin Nasrati’s speech at the the annual Cadillac Fairview Run
When I was a kid, my big brother was diagnosed with colon cancer and later with metastatic adenocarcinoma of the duodenum. Sadly he passed away. He was only 12 years old.
Shortly after his death, his oncologist at SickKids Hospital suggested that all of his siblings get genetic testing. That is when my family learned that I have an inherited gene mutation, which increases my risk of acquiring malignancies and other serious health concerns. And so began my lifelong annual cancer screening.
I was 7 years old.
Because of the regular screenings, they discovered my brain tumour early. At age 13, I received 33 daily radiation treatments and I was cured….per se, but I have certain side effects because of it.
This might shock you, but I am actually a four-time cancer survivor.
At age 15, I was diagnosed with cancer of my small bowel— and treated with surgery and 12 cycles of chemotherapy.
When I turned 18, I aged-out of the pediatric system. This was a very stressful time because all of the staff at SickKids Hospital are trained to take care of children, both physically and emotionally, so I felt very safe. At 18, I was still really young and didn’t feel ready to leave the children’s hospital.
My regular cancer screenings continued at Princess Margaret Hospital. At age 22, I was diagnosed and treated for colorectal cancer and a year later, breast cancer.
In addition to screening, I am monitored at the POGO AfterCare Clinic on a regular basis for late effects. Actually all survivors are monitored, not just those with a genetic mutation. This is because even though the survival rate is up to 86%, as many as 60% of young adults will face a lifetime of complications that are a direct result of their childhood cancer or the treatment they received.
One of these complications is learning difficulties, including slowed rate of information processing, poor working memory, increased forgetfulness and more. These are all things that I struggle with on a daily basis.
I am 23 years old, and at this stage in my life, my education is my main priority, but for a while, my success at school was at risk. It was through my nurse practitioner at the AfterCare clinic that I was introduced to my POGO counsellor.
POGO’s academic and vocational counselling program is a donor-funded program that provides personalized support for childhood cancer survivors who need extra help to transition from high school on to college, university or into a vocational program.
Counsellors work one-on-one with survivors to provide them with special accommodations to complete tests and schoolwork; to help them match their career goals with their abilities; to facilitate scholarships targeted at survivors; and link survivors with the appropriate disability services and supports within colleges, universities or the community.
I am proud to say that I am now a college graduate and currently a student in York University’s Sociology and Human Rights Programs.
By Yasmin Nasrati
I recently had the opportunity to represent both the Hospital for Sick Children and POGO at the annual Cadillac Fairview Run/Walk, which raised $250,000 through sponsorship and employee participation.
Strong Moms
So, recently, I volunteered at my daughter’s school. We went on a field trip. During the bus ride back to school I got into a conversation with Selena’s teacher who of course knows of her past at SickKids. She mentioned to me her daughter was sick; that she had a bladder infection. She mentioned how her daughter was screaming in pain and discomfort.
The next comment was one I have heard a million times before. She said:
“I was so terrified and am so sad. How, Natasha, did you deal with Selena having cancer?”
Funny thing is I just looked back at her. For the first time, words didn’t flow out in my usual strong mom spiel of, “Well, you know when you don’t have a choice you just handle it,” type of response. Instead I was more held back, a shiver came over me, words didn’t make sense in my head because I don’t really know how I got through it. I was possessed for those years, something bigger than me took me and drove me through the storm.
Now that it’s over and we can breathe and have reached the 3-year post-treatment marker, what I am not doing is handling it as well as I did before. I am one big emotional wreck, holding it together by a string, taking each day as it comes and trying to find my way all over again.
All this to say “strong mom” means many things; it’s as individual as we all are. We all handle things the best we can. From a tummy ache, toothache, bladder infection to cancer, when our kids get sick and are hurting, we, the moms, hurt for them. Some illnesses we can get over quickly; they come and they go; life threatening, critical illness for some can take much longer to heal from as the hurt is deeper than the surface. It boils in our veins as it triggers directly into our core and our hearts.
With today being Mothers’ Day, I send love and light to all moms, especially those whose babies made it to heaven. I know some of you. I feel your pain yet cannot ever know what it feels like to walk in those shoes. How does a mother, any mother, do it? Hmmm, good question; the honest answer still unwritten, I suppose.
By Natasha Koss
Natasha will be running in support of POGO at the Toronto Women’s half marathon on May 26. Natasha started running to help curb her anxiety when Selena was diagnosed with cancer. Please support her fundraising efforts at the link below!
Support Natasha in the Toronto Women’s Half Marathon!
Childhood Cancer: A Mighty Purpose Adapted from Lia Goh’s speech at the 2019 POGO PJ Party
My name is Lia Goh. I am 12 years old and I am a cancer survivor.
When I was three years old, I was diagnosed with acute lymphoblastic leukemia. I went through three years of treatments, including chemotherapy. I lost all of my hair; it almost grew back blonde!! And I received more blood transfusions than I can remember.
In fact, I don’t remember a lot about my cancer or its treatment.
Like how my parents had to take leave from work and my family rented an apartment in Toronto because I spent most of that first year in the hospital. Or how I was in isolation for a lot of that year. Or how I spent so much time in bed that my muscles atrophied, and my dad had to carry me everywhere.
I am old enough now to realize how lucky I am. I am lucky to have the support and love of family and friends. I am lucky that my parents had the freedom and the financial means to take the time off work to be with me. Many families don’t have that luxury. I am lucky to have benefitted, and I will continue to benefit, from the support of some incredible organizations, such as POGO.
And my dad always says that I am especially lucky to have benefitted from so many kids that came before me. From the research that has been done, and so many incredible services that have been created to support kids with cancer, their families and survivors like me.
From the time my brother and I were little, my dad would read a poem to us called “The Champion’s Creed.” In it, there is a line that has always stuck with me:, “Dedicate yourself to a mighty purpose.”
I can’t think of anything more mighty than helping to beat childhood cancer. So, I feel responsible to do as much as I can for all the kids who are fighting this battle now and all who will be fighting it in the future.
Watch Lia deliver her full speech here. Video courtesy of Natasha McKenty.