I am a retinoblastoma survivor, advocate and program coordinator for the Champion program. At 22 months, I was diagnosed with bilateral retinoblastoma and today, at 23 years, I am passionate and committed to retinoblastoma patient engagement and research. An undergraduate degree in biology, from Dalhousie University, has set me on course to pursue my interest in ocular genetics. Currently, I am working as a Research Assistant in an ophthalmology clinic in Halifax with a goal of being a genetic counselor in the near future.
I am a mom of a bilateral retinoblastoma patient and an advocate of retinoblastoma research. Together with Richelle, I am a co-coordinator of the RB Champion program. I have been an active participant in patient engagement in retinoblastoma research since 2017 when I became a member of the Canadian Retinoblastoma Research Advisory Board (CRRAB) and was a key participant in the CRRAB Steering Committee and Priority Setting Workshop that determined the ‘Top 10’ Retinoblastoma research priorities. With a background in business, I am currently a Clinical Research Project Coordinator at SickKids.
I am the wife of a bilateral retinoblastoma survivor Stephen, and mother of Jasper who was successfully treated in infancy, but relapsed with a pineal tumour 11 years later and passed away at the age of 15. I have presented to various oncology practitioners and medical students on the subjects of bereavement and compassion in medicine. I am currently a member of the Family Advisory Committee at Canuck Place Children’s Hospice. Much about my son’s relapse remains a mystery, and the fact that my husband survived but my son didn’t suggests to me that more research is desperately needed. Additionally, as a 48-year old survivor, my husband faces ongoing secondary health problems and tumour development in the field of radiation – both benign and malignant. More research on long term survivors could help him live a full healthy life – something that is far from certain at this time. An undergraduate biology degree has always been a help in understanding the medical journeys my family has taken, including my own as a thyroid cancer survivor. I currently work as a Human Resources Manager for local government. I live in Duncan, BC on Vancouver Island.
As a first time mom, with a four month old, the last thing I expected to face was cancer; however, I am now the proud mom of a seven year old survivor and thriver. The loss of his right eye to a giant tumour at such a young age hasn’t slowed this kid down for a second. My goal through the next 3 & 1/2 years of active treatment was to make his life as normal as possible. He thinks all hospitals are as amazing and fun as his trips to Sick Kids. This is a devastating diagnosis in children who’ve barely just arrived into the world. Support for parents is critical in raising the most wonderful (normal and healthy as they can be) children. I’m fortunate to be a co-founder of the ‘Parents of Children with Retinoblastoma treated at Sick Kids Toronto’ facebook group. Blake is a proud survivor who happily shows his prosthetic eye to anyone who cares to see (most can’t tell the difference).