Retinoblastoma is a complex cancer with potentially significant and serious lifelong impacts for the survivor and all family members. Sessions at every One Rb World explore the risks and challenges survivors and families encounter beyond childhood eye cancer, and how we can improve comprehensive survivorship care throughout life. Below, we share sessions from the 2017, 2020, and 2021 meetings.
Many retinoblastoma survivors live with significant long term treatment impacts and second cancer risks. Yet most children, adult survivors and their families struggle to access appropriate ongoing care. Len Burns, a totally blind bilateral Rb survivor and licensed family therapist, highlights the most common survivor concerns, and potential ways to improve long term care and quality of life.
Retinoblastoma is staged to help doctors describe the extent of cancer in a child’s body, define potential for cure, vision and eye salvage, identify the best treatments, and compare impact of different therapies. Dr. Ashwin Mallipatna explains the TNM Staging System for Retinoblastoma and why it is the best approach for patient care.
Despite advances in eye saving therapy for retinoblastoma, removing a child’s eye remains the most common treatment worldwide. Rb survivor and WE C Hope CEO, Abby White, shares her perspective of life after enucleation, and experiences from seven fellow survivors, offering hope to parents facing the reality of enucleation.
Many children and teenagers experience anxiety with medical interactions after retinoblastoma diagnosis. Pediatric registered nurse and child life intern, Michelle Badejo, describes how hospital anxiety can manifest, and explores how parents can help them cope, be active participants in their ongoing care, and raise their quality of life.
Living with the daily effects of childhood eye cancer can be overwhelming, for all family members. Both the immediate crisis of diagnosis and treatment, and the long-term impacts and risks. Child Life Intern and Student Teacher, Meagan Fuller, highlights some simple mindfulness techniques parents and children can use to ease daily tension.
