Blog

Patient Experience: Acting as a Cup of Tea Co-Host

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 13^th 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.

“Cup of Tea” Journal Club September 2023

The CRRAB “Cup of Tea” is a quarterly journal club intended to bring the Canadian retinoblastoma community together for an informal discussion on research. During this meeting, speakers provide a plain language summary of a research article then lead a discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, September 19, 8:00 – 9:00 PM ET. Our speakers will be Lindsey Berlett, Patient Partner, Morgan Livingstone, Child Life Specialist, and Jocelyn Leworthy, Child Life Specialist. Together they will be discussing the article, “Group Medical Play and Children’s Self-Reported Fear in the Pre-Operative Setting” for which they will write a plain language article summary.

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals, and researchers to participate in this free virtual event. In order to stay up to date on events such as this one, join the RB Research Community.

Event Details

Time: Tuesday, September 19, 2023, 8:00 PM ET

Duration: 60 minutes

Topic: Group medical play and its impact on children’s self-reported fear in a pre-operative setting

Meeting Link: https://zoom.us/j/99331924417?pwd=Ukp0dFp5bWduLy9CeVZRTXkyU3g3QT09

If you missed our last “Cup of Tea” event on, “Considerations for the use of circulating tumor DNA sequencing as a screening tool in cancer predisposition syndromes” led by Mary Connolly-Wilson, Stephanie Kletke, and Julia Sobotka, you can watch the recording or listen to the podcast version now.

Importance of Patient Engagement in Retinoblastoma Research

Author: Ivana Ristevski

I have been part of the Retinoblastoma Research team for 5 years now and in that time, I have had the opportunity to help with several projects and be a co-lead for the Canadian Retinoblastoma Research Advisory Board (CRRAB) where I helped co-host several meetings, workshops, and events. During this time, I learned that while all our journeys are different, we all want to help make the journey for the next generation easier and it is a bonus that we get to do it while working together! When I say working “together” I am thinking of the parents who attend meetings to connect with other families and learn from the health professionals, the survivors who are curious to find other survivors and exchange experiences, and the health professionals who attentively listen to stories of those with lived experience and incorporate change in their practice.

While each project I have worked on has been different, the one consistency has been personal growth. For myself, each experience has taught me a new skill including preparing for and leading workshops, setting up a website, event planning, and product design. But I am not the only one learning. Several projects have offered participants an opportunity to stretch their creative muscles. For example, a young CRRAB member stood in front of a workshop group and helped design stickers for the Retinoblastoma Journey Map whereas another member learned to use PowerPoint to create slides for a Cup of Tea presentation.

While I appreciate the newly developed skills I have learned, my greatest appreciation has always been the ability to learn about retinoblastoma from people with lived and professional experience in a comfortable setting where I could ask questions and discuss topics that I wanted to better understand. While I have personally benefitted, this has also resulted in my son learning more about retinoblastoma to the point where he can now advocate for himself in the future.

In turn, I also enjoy sharing my experience with my research team not only to help add the human element to research but also to add a human element to retinoblastoma. By offering my story to research students and colleagues, I hope that they start to see that a patient is not just a child with retinoblastoma but as someone who may have just had a long journey to get to their appointment, who may be feeling side effects of treatment, a family member that has gone through this journey together with their child, sibling, cousin, etc., and therefore, all have been affected in some way. Each patient has a unique journey and when the various experiences are incorporated, the quality of research will be more holistic.

Patient engagement in research has made significant impacts on retinoblastoma research. A few highlights include:

• By sharing their lived experience, a patient partner garnered support to include the need for more research on vision loss in the Top 10 Retinoblastoma Research Priorities.
• A survivor, using their professional experience, recommended using a QR code in the Retinoblastoma Research and You! booklet for easier access to online information.
• A young survivor shared that the first time they met other children with retinoblastoma was a major event that contributed to their overall wellbeing during a workshop which resulted in a sticker for the Retinoblastoma Journey Map to celebrate “finding community”.
• Working group members selected one of the Top 10 Retinoblastoma Research Priorities to create a study to address it. Individuals looked for funding opportunities, created demographic surveys, and reviewed questionnaires to create the study. Members of the group with lived experience made sure the questionnaires incorporated all aspects of the retinoblastoma journey.
• Patient partners also help support CRRAB by volunteering for the social media team, creating and maintaining the website, and writing blog posts.

There are many more examples of the amazing work that patient partners bring to a research project. However, as part of the research team, I have also seen the challenges that come with patient engagement such as: (i) funding priorities often do not support things like travel and compensation; (ii) working across many time zones in Canada makes it difficult to find a good time for meetings for all participants; (iii) general burnout from many responsibilities of our participants results in low turnout at some meetings and events.

As a result, your voice is needed! Without a wide variety of views and experiences research may not be able to reach all members of the retinoblastoma community and create solutions to care for all.

If you are interested in participating but are not sure how or just want to know more, send me an email and I would love to talk to you about your experience and interests so I can help you find the right fit with CRRAB and retinoblastoma research.

You can also learn more from our Retinoblastoma Research and You! booklet and by attending one of our upcoming events. In order to stay up to date on all opportunities and events, make sure to join the Retinoblastoma Research Community.

2023 Retinoblastoma Research Symposium Recordings

Recordings of the sessions from the 2023 Retinoblastoma Research Symposium are now available on the CRRAB YouTube channel! If you missed a session or want to review parts of the event, check out the playlist now. 

The playlist can be found here

Retinoblastoma Research Priorities Updates 

Authors: Mawj Al-Hammadi & Ivana Ristevski

Priority #3: Psychosocial Support 

Retinoblastoma Research Priority #3 asks, “How to provide culturally competent social, emotional, and psychological support to retinoblastoma patients, survivors, parents, and families (at diagnosis and beyond)?”. In August of last year, a study was launched that aims to address this priority. This study asks survivors and parents of survivors who received care in Canada to complete a survey on their psychosocial needs during and after retinoblastoma treatment. A wide range of recruitment methods have been used to reach participants, including social media outreach, in-person recruitment, and promotion by partner organizations. Currently 51 participants have completed the survey out of the study target of 400. Of the 51 participants there were 34 parents/caregivers, 15 survivors, and 2 participants who fall into both categories. The study has only reached 12% of its total recruitment goal; please consider completing the survey today! 

Priority #9: Pathway of Care 

Retinoblastoma Research Priority #9 asks, “How to provide a detailed pathway of care or plan, outlining treatment and follow-up, to retinoblastoma patients and families?”. Since our first research workshop during the 2020 Retinoblastoma Research Symposium, the work on the project “Retinoblastoma Journey Map” to address this priority has been ongoing. The Journey Map uses an illustrated board and repositionable retinoblastoma-specific stickers to help families visualize progress towards a goal. The tool was tested with a small number of families affected by retinoblastoma to evaluate its usability and impact on patient communication and patient-physician interactions. The project data has been analyzed and a manuscript is in the works. During the 2023 Retinoblastoma Research Symposium a workshop was held to co-develop a plain language summary based on the paper’s scientific abstract. The authors are currently reviewing the manuscript and will submit it to a scientific journal this summer. 

Retinoblastoma Care through Child Life

Author: Morgan Livingstone

In the simplest language, it is my job as a certified child life specialist to help kids cope with whatever life throws at them. I always knew I wanted to be a child life specialist and give children a voice where I felt they were powerless. I love being a child life specialist and figuring out the simple and complex ways I can help provide play-based support, preparation, education, and information in creative ways to help kids be and feel successful in their healthcare experience.

In my role as a CCLS, I have learned about children’s incredible ability to survive and thrive while facing illness, trauma, loss and/or end-of-life. The resilience of children of all ages never ceases to amaze me, and I consider myself privileged to have the chance to work and play with them and their families.

I have been actively participating with CRRAB since it began, and I am forever committed to helping CRRAB support children and families facing Retinoblastoma (RB) through the implementation of child life supports, programming and research.

RB is an illness impacting the very young – babies and children at the start of their lives experiencing painful procedures and frequent examinations under anesthesia. RB treatments have the potential to impact a child’s ability to cope and have a healthy development over their lifetime. Child life interventions are essential to mitigating and preventing maladaptive coping and unhealthy development and should be provided upon diagnosis, throughout treatment and follow up care. Despite this knowledge, most child life supports provided to children with RB are being delivered well after diagnosis, after treatment is completed, or in many cases child life is not provided at all.

My hope for the future of child life in healthcare systems and RB care is for child life to be provided as a part of expert clinical care from the start, like chemotherapy, upon diagnosis and throughout treatment and follow up. We provide lifesaving care to rid the body of cancer, and keep that child alive, but do not provide child life interventions to ensure the child themself, the individual inside that body, survives as a whole person at diagnosis, during treatment and beyond. My hope is that child life be provided to prevent problems in children’s coping and therefore, support a healthy development instead of being provided after a problem has arisen. 

CRAAB’s endeavors in child life research, and research in general, can help evaluate and validate child life interventions. Increasing research related to child life can strengthen the profession and provide greater data to help advocate for improved child life interventions for all patients.

CRRAB has been committed to improving access to child life services for children and families facing RB from its inception. Through investment in the years of enriched child life programming at the Retinoblastoma Research Symposia, conducting research, and implementing educational opportunities that spread the word about the importance of RB specific child life, CRRAB is changing the face of RB care for the future.

For more information about the child life profession, here is a link to our governing association: https://www.childlife.org/the-child-life-profession

“Cup of Tea” Journal Club June 2023

The CRRAB “Cup of Tea” is a quarterly journal club intended to bring the Canadian retinoblastoma community together for an informal discussion on research. During this meeting, speakers provide a plain language summary of a research article then lead discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, June 20, 8:00 – 9:00 PM ET. Our speakers will be Mary Connolly-Wilson, family member to retinoblastoma survivors, and Stephanie Kletke, pediatric ophthalmologist. Together they will be discussing the article, “Considerations for the use of circulating tumor DNA sequencing as a screening tool in cancer predisposition syndromes” for which they will write a plain language article summary.

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals, and researchers to participate in this free virtual event. In order to stay up to date on events such as this one, join the RB Research Community.

Event Details

Time: Tuesday, June 20, 2023, 8:00 PM ET

Duration: 60 minutes

Topic: Use of circulating tumor DNA sequencing as a screening tool

Meeting Link: https://zoom.us/j/96748732382?pwd=MkU1TVZIMlB2K2ZOZkdzdXFIVWx4QT09

If you missed our last “Cup of Tea” event on, “An exploratory study of sleep habits in school-aged survivors of retinoblastoma” led by Leslie Low and Kimberly Courtney you can watch the recording or listen to the podcast version now.

A Survivor and Parent perspective on Retinoblastoma Awareness

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.