Tag Archive for: ophthalmology

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.

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.

A baby has a white pupil glow in the left eye, and healthy red reflex in the right eye.

If In Doubt, Check It Out: Common and Not-So-Common Signs and Symptoms of Retinoblastoma

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.

A fuzzy, brown teddy bear sits on a table with a blue table cloth. The bear has red and black plaid feet, a cream snout, black eyes, a brown nose, and a black smile. A nasograstric tube and a gastrostomy tube are inserted, and an IV pole and IV fluids are seen to the side. Behind the bear is a teddy bear sized hospital bed and a green curtain.

Play – The Key Ingredient to Pediatric Medical Care

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.

A child life specialist distracts a child with an iPad game while he receives a vaccination. A fourth person is seen to the left of frame. All four are wearing face masks.

No Pain = Gain: How to Manage your Child’s Pain During Uncomfortable 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.