Author: Alena Vincent

Retinoblastoma has been in my family for 3 generations, passed from my mother to me and from me to my daughter, but with each new generation there has been a different journey for each of us. My mom, Kathy, was diagnosed in the 1950s. When my grandmother discovered my mom was having difficulty seeing as a toddler, she brought her to a specialist where she found out the cause, bilateral retinoblastoma. My grandparents had to make the difficult decision: risk radiation and scarring to my mother’s face with little chance of it successfully curing her cancer, or remove her eyes to save her life. They decided on the latter. My mom found out in her 20s that her form of retinoblastoma was likely hereditary, so she chose to get as much information as she could, and this is how she found Doctor Brenda Gallie in the 1980s.

Although my older brother was unaffected (DNA would later prove he was never a carrier), my first tumours were discovered at 4 months old. I was one of the first retinoblastoma patients in Canada to receive laser therapy under Doctor Gallie’s care, and this combined with cryotherapy saved my eyes and my vision. To this day, I still have 20/20 vision in both eyes.

When my husband and I chose to start our own family, we wanted to be as prepared as possible, so we opted for the chorionic villus sampling (CVS) prenatal DNA test. Our first child, Kyler, wasn’t a carrier, however, our second child, Violet, was considered “affected”. We were referred to a wonderful ophthalmologist in Edmonton, Doctor Solarte, who recommended I be induced at 36 weeks and told me that we would likely have to go to Toronto to have Doctor Gallie and Doctor Solomon treat Violet. On October 24th, 2017, Violet was born and at a day old her first tumour was discovered. She has had a total of 5 tumours, 4 in her right eye and 1 in her left eye, all successfully imaged and treated with an Optical Coherence Tomography (OCT) scanner and laser therapy respectively. One of Violet’s tumours was only 0.4 of a millimeter. It was one of the smallest retinoblastoma tumours to ever be successfully laser treated. She is now 3 years cancer free, has 20/25 vision in both eyes, and is an independent and adventurous 5-year-old.

I joined CRRAB in the fall of 2018. I was excited to be part of further improvements for care and to share my experiences as a survivor and as a parent of a child actively in treatment. I have participated in many activities since I joined including; attending zoom calls to share insights, speaking at and attending a RB Family Gathering in Calgary, virtually attending the RB Symposium in 2021 during the COVID-19 pandemic, and leading a discussion at a Cup of Tea meeting about an article examining OCT scanners.

We just passed World Retinoblastoma Week this past May 14 – 20. It’s fitting that the last day fell on what would have been my mom’s 71st birthday. Unfortunately, she passed away from cancer in 2012. She would have loved to see a world that catches retinoblastoma early and faces the RB1 gene with more knowledge and preventative care. Every pediatrician and general practitioner should be more aware of retinoblastoma. The lack of knowledge here has caused many children to go undiagnosed for critical weeks even when caregivers are fighting for answers. This shouldn’t be the case. In recent years, we’ve seen amazing advancements in genetic research, and doctors are starting to take genetic predispositions seriously. When RB1 survivors and their doctors understand their increased risk, it can help catch secondary cancers early, and allow survivors to live long healthy lives.

CRRAB is part of the movement forwards. It not only works to support children and families actively going through care, but also to educate for awareness and advocate for long term care for patients who have suffered vision loss, have prosthetic eyes, or are at risk for secondary cancers due to the RB1 gene. Their continued push to use public platforms and events to share information and create a community helps survivors and parents feel less alone, and it is this knowledge that will help future generations. Knowledge is power, and its power is why both my daughter, and I can see today. Knowledge communities like CRRAB will help support RB patients and survivors for the rest of our lives.