Parents and survivors shared their thoughts on the “Through Our Eyes” wall at the One Rb World meeting in Washington D.C., 9-11 October 2017. These powerful insights were gathered anonymously via this website during September 2017, and highlight wide-ranging concerns.
One Retinoblastoma World is community, conversation, and collaboration in action. Families, survivors, and professionals unite to share knowledge and lived experience, shaping lifelong Rb care and support. WE C Hope CEO, Abby White, and WE C Hope USA President, Marissa D. Gonzalez, both Rb survivors, explore why being together in San Antonio this September matters so deeply for all in our community.
Play is the language, university, and business of childhood. Medical play is a key part of child-focused health care, helping young patients learn, reduce fear, and take part in their care. Sophie Goldberg, child life intern and student of Child Life and Pediatric Psychosocial Care, explores what medical play is, and how you can use it to empower your child through their medical experiences.
Do you know the difference between lazy eye and squint, or an ocular oncologist and a paediatric oncologist? Do you know when extraocular Rb becomes metastatic, or why trilateral Rb is neither of these? In Part 1 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.
Google, AI, and social media play an increasingly significant role in the lives of families affected by retinoblastoma, but without careful use, they can complicate a child’s medical care and even put life at risk. Dr. Jesse Berry shares her recommendations for being a safely informed, engaged parent advocate in the modern hyper-connected age.
On March 10, 2019, our beloved child life specialist Jayne Kamau died aboard Ethiopian Airlines flight ET302 as she returned home from SIOPAfrica in Cairo. WE C Hope Child Life Director, Morgan Livingstone, reflects on more than a decade of mentoring, friendship and working together to advance child life in Kenya. Co-authored with WE C Hope CEO, Abby White.
Why should we be concerned about childhood cancer awareness when it accounts for only 1-3% of all cancers? Surely its rarity means the impact on society and childhood deaths is low? Not True! Bilateral Rb survivor and WE C Hope CEO, Abby White, explores the realities of childhood cancer, sharing personal experience, and insights from parents and fellow survivors,
Infants experience a wide range of emotions, the depths of which are just beginning to be understood. Morgan Livingstone CCLS discusses how the external environment influences infant mental health, and the varied ways parents and medical professionals can help babies cope and thrive through medical interventions.
When retinoblastoma changes everything, connection and understanding are vital. Family Days provide a soothing space for families and survivors to gather, share, and heal together. WE C Hope USA President, Marissa Gonzalez, and our blog curator, Abby White, explore how these special events foster community, joy, and hope across the retinoblastoma journey.
Most children in low- and middle-income countries face hospitalization without the vital psychosocial support they need. WE C Hope’s Certified Child Life Specialist Morgan Livingstone shares how sustainable child life programs are transforming paediatric care in under-resourced settings. She explores the power of partnership, training, and local leadership in building sustainable child life services that meet unique community needs.
