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.
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?
Annie, an important member of our team, retired on April 15th. Abby White, retinoblastoma survivor, WE C Hope founder and volunteer CEO, reflects on working with her guide dog for seven years. She considers the many varied gifts Annie has brought to both herself as an individual retinoblastoma survivor, and to WE C Hope.
Just 3 paediatric oncologists serve Ghana’s population of 29 million, but this dedicated team leads one of the best childhood cancer programs in West Africa. Dr. Vera Essuman (paediatric ophthalmologist) and Prof. Lorna Renner (paediatric oncologist) discuss retinoblastoma in Ghana and the development of care for children with eye cancer across the country.
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.
Survivor participation in retinoblastoma research is key to understanding long-term impacts of the cancer, and improving care. But many barriers to participation exist Len Burns, a blind bilateral Rb survivor and licensed family therapist, considers four major barriers, and opportunities to overcome them.
The WE C Hope blog has been busy in 2018. We’ve shared 24 posts from 17 authors – parents, survivors, researchers or professionals providing retinoblastoma-related care. Each has brought valuable experience, knowledge and perspective, and we are very thankful to them all. Here is a recap of posts we’ve shared in the past 12 months.
Do you know the difference between a biopsy and pathology, or an RB1 gene deletion and Chromosome 13q deletion? Do you know how a retinoma becomes retinoblastoma or when remission becomes cure? In Part 2 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.
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.
