Tag Archive for: retinoblastoma

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.

A bald female toddler sits on her mother’s lap during a port access procedure. Her back rests against her mother’s chest, and her head is turned up and back towards her mother, who is leaning down in conversation. Both mother and child are white. The nurse accessing the port is seen from behind and has fair hair.

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.

Close up of a child with leukocoria detected by CRADLE, with results boxes around both eyes and magnified images of both eyes below the main photo.

From CRADLE to Care: Your Photos Can Help Scientists Build an App for Parents to Diagnose Serious Child Eye Disease Early.

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.

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 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..

A large group photo, showing 40+ people of all ages.

A Day Well Spent – California Family Day

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 baby boy looks at the camera. his right eye shows a white reflex while his left eye is turned in towards his nose.

When ‘Something’ Looks the Same As ‘Nothing’: Strabismus, Leukocoria and Childhood Eye Cancer

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?

Celebrating Annie: Guide Dog Retires from WE C Hope Team

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.