From Treatment to Triumph: Seeking Cure for All at One Rb World 2024 Day Three
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Monday December 9, 2024
Day Three of the 7th One Rb World Conference in Honolulu, Hawaii, continued to inspire with an in-depth exploration of treatment pathways, survivor resilience, and global efforts to save lives. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, shares highlights from the vital discussions and profound personal stories shaping a hopeful future for all affected by retinoblastoma.
This is the final installment of our 3-part One Rb World 2024 Recap.
Part 1: Pre-conference social day, and One Rb World Day One.
Part 2: Our Day Two recap is a 2-page article, focused on:
- Page 1: Provision and access to life-saving care for all.
- Page 2: Advances in research and technology
Part 3: Our Day Three recap is a 4-page article, focused on:
- Page 1: Early detection and advocacy for prompt care.
- Page 2: Cure for all children, and preventing cancer spread outside the eye.
- Page 3: Keynote from NYT journalist, Pamela Paul; and global solutions.
- Page 4: Child life, patient engagement, and a massive Mahalo!
Members of the panel “We Can’t Save Every Eye, But We Can Try to Save Every Life” take turns addressing attendees. L-R: Clayonia Colbert-Dorsey, Sandra Staffieri, Christina Stathopoulos, Furqan Shaikh, Maura Di Nicola (panel moderator).
Recapping Page 1…
Page One of our Day Three recap highlighted the focus on early detection and international collaboration to achieve this goal. From life-saving tools like the Arclight Ophthalmoscope to the transformative advocacy of KnowTheGlow, the power of community action and innovation shone brightly.
Catch up on Page One to learn more: A Global Call to Action: Early Detection and Advocacy at One Rb World 2024 Day Three | Page 1
We Can’t Save Every Eye, But We Can Try to Save Every Life
Rb survivor and WE C Hope Board Secretary, Clayonia Colbert-Dorsey, shares her perspective on “Life After Enucleation.”
WE C Hope USA Secretary, Clayonia (Clay) Colbert-Dorsey, began the session by sharing her own journey as a unilateral Rb survivor. She noted the difficult decision her parents had to make regarding enucleation.
Clay’s father – who is now in his 80s – joined her in Hawaii for the conference. She said:
“My mother and father were with me from Day One of my Rb journey. My father drove me to all my ocularist appointments. However, I had never heard him express his thoughts or feelings about Rb until he had the opportunity to attend the Hawaii conference. I believe it was not only informative, but also awakening to have various generations/members of my family gain deep insight on what changed my life and impacted theirs.”
Clay brought the audience to tears, made them holler with inspiration, and experience every emotion in between. She reflected on the previous days, saying:
“This conference was a resounding success! Not only did we bring together a larger coalition of global allies, expanding knowledge in the realm of retinoblastoma, but we also forged ties that bind us as a community.
Whether we admit it or not, for most, Rb creates a life-long impact upon its survivors/thrivers. The journey is not easy, but it is navigable with social-emotional support and scalable resources. WE C Hope exists to formulate opportunities for survivors, families, and allies to connect for positive change.
We are one! It was phenomenal to meet and connect with a similarly-aged, ‘seasoned’ thriver! Our conference allows families at all ages and stages to build important emotional bonds. For that, I am grateful!”
Clay acknowledged the trauma that faces a parent when making the life-altering decision to remove a child’s eye, and the unique differences between unilateral and bilateral patients. She thanked her mother and father for choosing to remove her eye to give her the best possible chance at surviving retinoblastoma and thriving as an adult survivor.
Dr. Furqan Shaikh: Understanding High-Risk Pathology
Furqan Shaikh, M.D., M.Sc., is a Staff Oncologist in the Solid Tumor Program in the Hematology/Oncology Division at The Hospital for Sick Children, who came from Toronto for his first One Rb World Conference, sharing “A Review of High-Risk Pathology in Retinoblastoma and What it Means for Treatment Decision-Making.”
He clearly explained terms, treatment options and intensity, and risks for cancer spread beyond the eye. He showed the critical importance of early detection, and appropriate treatment for the stage of cancer.
Furqan observed that “Sometimes people mistakenly use the term ‘good cancer’ to describe retinoblastoma due to high cure rates in developed nations.” However, only intra-ocular retinoblastoma has this higher cure rate as the sclera contains the cancer within the eye for a time. He emphasized the importance of keeping retinoblastoma inside the eye, saying that once retinoblastoma becomes extraocular (spreads outside the eye), “it is really no better than any other metastatic solid tumor”.
High-risk pathology predicts the chances of metastatic relapse. Pathologists look at where exactly the cancer lies within the eye. Potential outcomes include relapse in the orbit, bone marrow, and/or brain.
Furqan answered three key questions:
- How common is high-risk pathology?
- How high is the risk of metastases?
- What is the chance of cure with metastases?
He underscored the importance of early detection and systematic treatments as the child’s best chance of cure without risk to their life.
He presented a ”Thought Experiment” (shown below), comparing the outcome of three treatments. This thought-provoking assessment shows that “The right treatment for the right patient at the right time” is the best possible treatment – even though it might look different from other patients.
The Q&A session emphasized this point again. Many parents turn to social media groups for medical advice; audience members and panelists stressed it is vital that such forums do not lead decision-making.
Furqan concluded by noting that precision medicine is set to revolutionize the way doctors identify children at high risk for extraocular relapse. The information they and parents have before enucleation in the near future will enhance treatment decisions, and save more lives.
A slide from Furqan Shaikh’s presentation, “A Review of High-Risk Pathology in Retinoblastoma and What it Means for Treatment Decision-Making.” This Thought Experiment compares three hypothetical scenarios, in which all children receive the same treatment for Rb. Outlining the potential outcomes for each, including treatment exposures, enucleations, metastases, and death, offers a useful structured framework for discussion and decision-making.
Carol Shields: Does Chemotherapy Really Work?
Joining us virtually was Carol Shields, M.D., Director of Ocular Oncology Service at Wills Eye Hospital in Philadelphia, who tackled the question, “Does chemotherapy really work?” She began by debunking harmful beliefs that the treatment is ineffective for retinoblastoma, then turned to the history of chemotherapy for Rb.
During the 1950s-1980s, chemotherapy did not work for retinoblastoma patients because no tailored regimens were used. But in 1994, at St. Bart’s Hospital in the UK, oncologist, Judith Kingston, discovered the regimen she used for her neuroblastoma patients successfully treated Rb. Chemotherapy was quickly established as a viable treatment option, forever changing the Rb medical scene.
Carol named this “The single most important discovery in the Rb world so far”. In 2021, she and Jerry Shields, M.D., wrote a joint editorial to the Asia-Pacific Journal of Ophthalmology titled “Here comes the sun…for retinoblastoma”, crediting Judith Kingston’s paradigm-shifting contribution. She told our audience, “May she never be forgotten for what she did for this field.”
A slide from Carol Shields’ presentation “Adverse Reaction: Controversies in Ophthalmology.”
Sandra Staffieri: Understanding the Burden of Treatment
Panelist and Scientific Program Co-Chair Sandra E. Staffieri, Ph.D., beautifully spotlighted the burden of treatment for unilateral Rb patients.
As the Retinoblastoma Co-Coordinator and Senior Clinical Orthoptist for the Royal Children’s Hospital Melbourne in Australia, Sandra has supported families through more than 125 treatment option discussions at diagnosis. She knows that decision-making is difficult, and often haunts parents.
Her passion for improving care led to a study comparing the treatment burden of children with unilateral Rb (and no family history of Rb) who had primary enucleation or eye salvage therapy.
Sandra shared her results, showing how the number of clinic visits, EUAs, and other invasive procedures differed for each therapy. This has enabled her team to give parents valuable information about the burden of treatment pathways, supporting informed decision-making for their child.
As a medical professional, Sandra stressed the vital need to understand:
“The burden of treatment through the eyes of each child, teen, and young adult who has needed enucleation, and also the experience of the parent who makes that life-changing decision for their child.
The hardest thing, I believe, about being a parent is making decisions on behalf of your child. But knowledge is power, and we have been using this data for a short while now to provide parents with a realistic idea of what life-saving treatment might really look like in the truest sense for them.”
Mark Lubash and Lennox Ellis, our oldest Rb survivor and youngest patient at One Rb World 2024, share a moment together at the conference. Lennox is currently in treatment for bilateral Rb.
Christina Stathopoulos: Chemotherapy vs. Focal Treatment
Christina Stathopoulos, M.D., is an Associate Doctor and Head of the Pediatric Ocular Oncology Unit at the Jules-Gonin Eye Hospital in Switzerland. She explained the differences between two forms of treatment for retinoblastoma contained in the eye: chemotherapy and focal treatment.
Like Carol, Christina featured the diagnostic and therapeutic advances that have improved Rb management and potential for eye salvage. Using detailed examples and data, she gave us insight into the intricate process doctors go through when recommending treatments.
She concluded with an emotional message:
“I would like to thank the parents. I hope you know that you give us the strength to fight every day, and the faith you have in us makes us want to give you the best.”
Mark Lubash: A Survivor’s Message of Hope
During the Q&A session, Rb survivor, Mark Lubash, thanked the panel, saying it was wonderful to be among fellow survivors, families, and medical professionals.
As the oldest survivor at One Rb World, Mark reminded parents of young children there is hope for a bright future, no matter their child’s vision level.
He choked up when addressing Clay, saying she reminded him, “You may have challenges, but you don’t have limits.”
Watch the session, We Can’t Save Every Eye, But We Can Try to Save Every Life.
Read Page 3/4 – Hope and Progress Continue on Day Three
As Day Three of the 7th One Rb World Conference unfolded, we witnessed incredible advances in retinoblastoma treatment, alongside the burden of care, and survivor resilience. The next chapter reveals our final keynote address from New York Times journalist, Pamela Paul, and global efforts making an impact in the fight against deadly extraocular disease. Don’t miss the inspiring conclusions to this remarkable event!
Read Page 3/4: Storytelling for Life: Global Solutions and Lifelong Care at One Rb World 2024 Day Three | Page 3.
Spark Hope: Help Shine the ArcLight to Save a Child’s Life
Early diagnosis is the best cure!
Our speakers highlighted how early detection is vital to save children’s lives.
We aim to provide 500 Arclight ophthalmoscopes across nine low and middle income countries in 2025, and low resource communities in the USA. Please join us in making this possible!
Donate today to equip healthcare workers with life-saving Arclight devices.
Each $25, $50, or $75 gift funds a high-tech solar powered Arclight ophthalmoscope, and training to examine children’s eyes and detect eye cancer early.
This Giving Season, please help us bring the life-saving gift of early detection to children in some of the world’s poorest countries and communities. Together we can save more precious young lives and families. Thank you very much!
About the Author
Marissa Gonzalez resides in Southern California and is an event director. She is a founding board member, and current President of World Eye Cancer Hope USA, and was Event Chair for the One Retinoblastoma World Conference in 2017 and 2021. In her downtime, Marissa enjoys travelling and going to Disneyland.
NYT Opinion | It Takes A Lifetime to Survive Childhood Cancer.
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