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.

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