Parents face many decisions about their child’s retinoblastoma treatment. The experience can be complex, highly emotive, and stressful. WE C Hope CEO Abby White introduces our new comprehensive guide to making treatment decisions, a tool to help parents navigate the process and make the best choices at every stage of their child’s eye cancer journey.
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Entries by Abby
Prompt investigation of signs and symptoms is vital to diagnose retinoblastoma early. Timely diagnosis provides the best opportunity to save a child’s life and sight. For Retinoblastoma Awareness Week 2022, Rb Care Coordinator Sandra Staffieri explores the signs and symptoms that may lead to a diagnosis of childhood eye cancer.
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.
Having medical procedures can be tough for children, especially when many are repeated during a long course of medical care. Though necessary, they do not need to be painful. Maria Sohail, child life intern and Masters Candidate in Child Life and Pediatric Psychosocial Care, explores a range of pain management strategies that can support a child’s mind and body comfort.
For many children and their families, eye cancer diagnosis begins a lifetime journey, with many twists and turns through treatment and long after being declared cancer free. World Eye Cancer Hope USA President Marissa D. Gonzalez reflects on three decades being cancer free from retinoblastoma, the journey of a cancer survivor, and the future with her cancerversary fundraiser.
Medical appointments, assessments and tests are potentially stressful for anyone, at any age. Cancer screening can be especially difficult if the one being screened is the young sibling of a child diagnosed with retinoblastoma. Child life specialist Morgan Livingstone explores why siblings need cancer screening, and how to help them understand and cope with their medical experience.
With a heavy heart, we share the news that Dr. A Linn Murphree, Professor of Ophthalmology, Founder of the Vision Center, and Director of the Retinoblastoma Program at Children’s Hospital Los Angeles and USC, passed peacefully on March 9th, 2022. Linn was a tremendous force in ocular oncology, advancing knowledge of the RB1 gene, and care for children with retinoblastoma.
All children exhibit undesirable behaviour at times, particularly when they are stressed, but deliberate misbehaviour is rare. Paediatric nurse and child life specialist, Cindy Pilchuk, explores how a child’s brain responds to stress and emotional overwhelm, what their stress behaviour may be trying to say, and how parents and caregivers can help children cope better.
Parenting children through retinoblastoma is tough. Being their chief advocate is one of your most important roles throughout their cancer experience. Rb Survivor and WE C Hope CEO, Abby White, discusses why parents and caregivers should advocate for child life support, how to ask for child life services, and how to work effectively with child life professionals for the best outcomes.
A retinoblastoma diagnosis is shocking for parents, and the journey through complex specialist care can be highly stressful. RB1 genetics mean this cancer often affects more than one child in a family. Leslie Low shares her experience of caring for her triplets – all diagnosed with cancer in both eyes, and the things that helped her family cope; physically, psychologically, and practically.