Authored by Jillian Purdy
My name is Jillian and as parent of a 3 year old son with retinoblastoma, I am here to share my experience as a ‘Cup of Tea’ co-host.
My retinoblastoma journey began on December 24, 2019, when my son Samson was diagnosed at 6 months old. We hadn’t heard of retinoblastoma before and I’m sure many of you can relate to the shock and horror of hearing the word ‘tumour’ and ‘cancer’. After the initial period of feeling scared and alone, we started to realize that there was an incredible team at SickKids who would be there with us every step of the way. From ophthalmologists to oncologists and social workers to geneticists, it was overwhelming but also reassuring to know that so many people were dedicated to our son’s care. Although we are back in active treatment after months of remission, we remain hopeful that Samson will one day call himself a survivor.
Samson was also diagnosed with 13q Deletion Syndrome, which means he is missing a piece of the 13th chromosome, including the RB1 gene that causes retinoblastoma. Because we we’re so engrossed in battling RB, we thought of this news as an answer to why he has cancer rather than a whole new set of life changing challenges. As Samson got older and we moved out of active treatment, we started to fully realize the impact. The reality of this diagnosis for Samson is severe global developmental delay. And because of its rarity and the spectrum of severity, we are left to discover its characteristics as Samson grows. We have a team of paraprofessionals providing early intervention to help Samson reach his full potential. I am happy and proud to say that today he uses about 15 words and is learning more every day. This may not sound like much, but after wondering if he would always be non-verbal, it feels like a miracle.
I can’t remember exactly when I learned about CRRAB, but I do remember being impressed by how organized, active, and wide-ranging this community is. During the first few months after diagnosis, I just wanted knowledge and CRRAB was a great resource. As we moved out of the initial treatment phase, I wanted to be a more proactive participant in the community. I was inspired by the idea that simply sharing my lived experience could help future families navigate a RB diagnosis, help move research forward, and even influence the direction of research itself. I have attended quarterly meetings, read the newsletters, participated in the annual symposium, and joined a working group however, the most rewarding experience so far has been co-hosting a ‘Cup of Tea’ event and writing a research article summary with a clinician. I was asked to participate by a member of CRRAB and am grateful for this because I’m not sure I would have taken the initiative on my own. I was able to choose a topic and article that I was passionate about and was partnered with one of Samson’s health professionals. Not only were we able to discuss the article as it related to my son specifically, which helped with establishing a deeper understanding, I was also able to build that relationship and connection to my son’s care team. My hope is to continue to be an advocate for 13q deletion as it relates to RB and co-hosting the Cup of Tea event helped me to raise awareness of this topic. There was engagement with the community through questions that were raised about the research and discussion of potential next steps.
Throughout my limited experience with CRRAB I have learned that patients, parents, survivors, health professionals, researchers and more all have an important place in the CRRAB community.
All of these voices together are what moves RB research forward. “You can do what I cannot do. I can do what you cannot do. Together we can do great things.” – Mother Teresa. I encourage patient partners to continue to use their unique skills, strengths, and experiences to participate in CRRAB events like the ‘Cup of Tea’ and make a difference for past, present, and future retinoblastoma patients and their families.