A faded portrait of a toddler Marissa and her grandmother, sitting together on outdoor steps.

Living With Vision Loss: Challenges and Changing Perspectives

For many survivors of bilateral retinoblastoma, vision changes throughout life. This may be due to treatment late effects, eye health, or other medical events. World Eye Cancer Hope USA President and founding board member, Marissa D. Gonzalez, recounts her journey with vision loss during two different seasons of life, and her difficult course with acquired blindness as an adult after decades of good sight.

Damian lies on a hospital bed, wearing a blue t-shirt with a red and yellow Team Damian logo that resembles the brand of his hero, Spiderman. He is bald and is smiling at the camera.

Under-Treatment and Over-Treatment of Retinoblastoma

Retinoblastoma care is a complex balancing act.  Some children receive too little treatment, while others receive more than necessary, with potentially devastating results.  Sharing two children’s stories, Rb survivor Abby White explores what under- and over-treatment are, when they may happen, their consequences, and how we can prevent them.

A female doctor wearing green scrubs, surgical mask, and a brightly coloured scrub cap, sits on a play area with a child patient. She has placed her stethoscope on the child’s doll. The child is facing the doctor, mostly out of frame, and is using a toy stethoscope to mirror the doctor’s actions.

10 Child Life Tips for Clinicians

Medical appointments, procedures, and treatments are potentially stressful for children and their families, at all stages of their retinoblastoma experience. Child life specialist Morgan Livingstone shares 10 simple ways all medical professionals can ease stress and anxiety, support healthy coping, and help children and families thrive throughout simple interactions and complex cancer care.

A diverse group of people sit around a table talking. The table is filled with papers and classes of water, and more people are seen working together around tables in the background..

Ethnography: A New Frontier in Retinoblastoma Research

Every child with retinoblastoma, parent, sibling, survivor, and medical professional has a story to tell of their journey through childhood eye cancer. Understanding our individual and collective experience empowers us to develop and deliver holistic care for all.  Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.

A mother breastfeeds her baby while sitting on couch at home.

Breastfeeding When Your Child Has Retinoblastoma

Breastfeeding is one of the many decisions parents navigate when their baby or toddler has retinoblastoma. Paediatric nurse and child life specialist, Cindy Pilchuk, explores the benefits and challenges of breastfeeding through treatment, with practical tips for continuing or re-starting breastfeeding, weaning after diagnosis, maintaining milk supply, and comfort supports for both mother and child.

Fire Poppies – vibrant golden petals and green leaves brighten a scorched landscape.

8 Ways to Heal Survivor Guilt

Anyone affected by retinoblastoma can experience survivor guilt – child and adult survivors, siblings, parents, grandparents, and others. WE C Hope CEO and Rb Survivor Abby White concludes this four-part series on Survivor Guilt with 8 practical suggestions to help acknowledge, move through, and heal from the destructive emotions that fuel survivor guilt.

Understanding Survivor Guilt

Survivor guilt of some kind is an almost universal experience for individuals affected by retinoblastoma – survivors and siblings of all ages, parents, grandparents, and others. Continuing our four-part series on Survivor Guilt, WE C Hope CEO and Rb Survivor Abby White explores the causes, risk factors, and underlying emotions.

an anchor tethers a bright red hot air balloon floating in a grey sky.

7 Ways Retinoblastoma Families and Survivors Experience Survivor Guilt – part 2

Anyone affected by retinoblastoma can experience survivor guilt – survivors and siblings of all ages, parents, grandparents, partners, and others.  WE C Hope CEO and Rb Survivor Abby White continues to explore the many ways in which family members experience survivor guilt, and the potential impacts during treatment and throughout life.

A red butterfly is reflected in water as it hovers above, against a pale blue sky.

7 Ways Retinoblastoma Families and Survivors Experience Survivor Guilt – part 1

The life-changing experience of retinoblastoma can weave a legacy of survivor guilt that may affect anyone in the family – child and adult survivors, siblings, parents, grandparents, and others.  WE C Hope CEO and Rb Survivor Abby White highlights the many ways in which family members experience survivor guilt, and the potential impacts during treatment and throughout life.

Text reads “Retinoblastoma Treatment Decisions 12 Step Guide”. The background is a blue painted wood table. To the right of the text, a pen rests on the blank open page of a notebook. Around the notebook sits a pair of glasses, a cup of coffee, and a small plant with green leaves.

New Treatment Decision Making Guide

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.