The gold pin on a compass points to the word "survivorship"

7 Survivorship Tips and Tricks: navigating the adult post-retinoblastoma world

Diagnosis and treatment of eye cancer in early childhood is only the start of a lifelong story for many individuals affected by retinoblastoma. Marissa Gonzalez, Rb survivor and President of World Eye Cancer Hope USA, shares seven tips for being an active participant in your retinoblastoma survivorship journey.

A child life specialist blows bubbles through an anesthesia mask towards a little girl

Child Life in Retinoblastoma Care

Child life can profoundly impact a child’s experience of retinoblastoma, and their quality of life. However, many children treated at specialist retinoblastoma centres lack child life support, and their parents feel unsupported, compared with other cancer patients. Abby White explores the challenges and ways to overcome them.

Questions About COVID-19 and Retinoblastoma

People around the world are feeling anxious about the coronavirus pandemic. We understand the concern is especially acute for parents of children with retinoblastoma, and survivors who have chronic health conditions and second cancer diagnosis. Here we answer questions we have received about the virus.

A female adult plays patient, cared for by a group of children dressed in medical outfits. She wears an eye patch on her left eye, and the children put bandaids on her arms. One of the children is wearing an anaesthetic mask.

Child Life Programs: Play With Purpose at Retinoblastoma Gatherings

Eye cancer is a potentially overwhelming experience for young children, whether patient or sibling. Child life can radically improve care and life for the entire family, but too many children lack access to this specialist support. Abby White shares how WE C Hope supported Child Life programs are helping to change that.

Text above reads: "Speak Up" Image of an open book, its pages glowing gold and emitting sparks of light. Text below reads: "Share Your Retinoblastoma Story."

4 Key Ways Sharing Your Story Makes a Difference, and Tips for Telling

Every individual in the retinoblastoma community has a unique story to tell – whether parent, survivor, sibling, professional, extended family member or supporter. Abby White explores the importance of storytelling, and the many ways in which sharing your story can make a difference – to your own life, and to the world.

Against a background of brightly coloured musical notes and butterflies, text reads: “Ah Music, a magic beyond all we do here.” Albus Dumbledore.

#TuesdayTunes: Songs With Meaning

Throughout this year, we have shared monthly #TuesdayTunes on our social media – songs chosen by parents, survivors and professionals in our retinoblastoma community because of their special personal meaning.  As the year draws to a close, we gather together all this beautiful music and insight, and welcome in the new decade with heart.

Image: The word “bullying” is positioned in the middle of a white circle, defined by a red outer line. A diagonal red line runs from top right to bottom left of the circle. Other words are seen in pale colours throughout the white circle. These words are:

Bullying After Retinoblastoma: How to Help Kids Respond With Confidence

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.

A young girl wearing medical gloves, glasses and a stethascope prepares to practive a procedure on a medical play puppet.

6 Ways to Help Older Children and Teens Cope With and Conquer Hospital Anxiety

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.

A group of teenagers enjoy a game of volleyball on a sand court surrounded by trees, under a cloud-dusted blue sky.

When Survivors Grow Up: Family Experiences After Retinoblastoma

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.

Close-up of a baby's face

How Do I Create A Family When I Have An RB1 Mutation?

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..