A White pupil is the most common early sign of eye cancer in young children, and it’s usually seen first in photos. Do you want to turn your smartphone into a powerful cancer-detector? Mark Billings, WE C Hope USA Director, tells the story behind the CRADLE app and explains how you can help scientists improve it.
This season can be particularly tough when childhood cancer or its long term effects loom large for a family or individual. Retinoblastoma survivor and volunteer CEO, Abby White, shares advice for creating a calmer, more spacious and joyful Holiday, where self-care for all takes priority.
Children diagnosed with retinoblastoma are especially vulnerable and sensitive to bullying due to treatment effects. Morgan Livingstone CCLS discusses what bullying is and isn’t, how parents can recognize the signs, and help young Rb survivors use stories and develop skills to stand up to bullies with confidence.
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.
Retinoblastoma is highly curable, but lifelong impacts are significant for survivors, siblings, parents and extended family. After a particularly painful personal insight, Rb survivor and WE C Hope CEO Abby White asked families and survivors about their own experiences of life beyond childhood eye cancer care.
Individuals who carry an RB1 mutation have a 50% chance of passing the retinoblastoma cancer syndrome on to each child. Melissa Mills, bilateral retinoblastoma survivor and genetic counsellor, explores the psychological and physical impacts of this experience, and the different routes to creating a family when a prospective parent has an RB1 mutation..
Local in-person support specific to the needs of families and survivors affected by retinoblastoma is much needed but very rare. Lisa Hester, mother of a young Rb survivor, reflects on the second WE C Hope California Family Day, held in August 2019, the seeds of our mission to bring this support to all across America.
A diagnosis of childhood eye cancer impacts families in so many ways, during the immediate crisis of treatment, and years after “cure”. Knowing you are not alone on the journey is the greatest comfort and strength. Five mothers reflect on the healing power of Camp Sunshine, a retreat that cares for the entire family when cancer strikes.
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.
Strabismus (turned eye) and leukocoria (white pupil), the most common signs of retinoblastoma, can also occur in healthy eyes. Sandra Staffieri, Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, examines both and answers the key question – when should parents and doctors be concerned?