Five smooth pebbles are stacked in decreasing size on a beach, where lively surf rolls into shore. The high sky is clear blue, with a few clouds above the horizon, which is lightly tinged with a pale peachy glow of sunrise or sunset.

Mindfulness Tips for Retinoblastoma Families and Supporting Teachers

Living with the daily effects of childhood eye cancer can be overwhelming, for all family members. Both the immediate crisis of diagnosis and treatment, and the long-term impacts and risks. Child Life Intern and Student Teacher, Meagan Fuller, highlights some simple mindfulness techniques parents and children can use to ease daily tension.

A woman sits alone on a bench under a sprawling weeping willow tree in a park. She is facing away from the camera.

Retinoblastoma Survivors’ Perspectives on Long-Term Follow up 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.

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.

Dr. Skalet examines a child under anesthesia using an indirect ophthalmoscope. Published with permission.

Familial Retinoblastoma Screening: When Eye Cancer Runs in the Family

Familial retinoblastoma affects more than one member of the same family. Diagnosing children early provides the best opportunities for life and sight-saving care. Alison Skalet, ocular oncologist and director of the Rb service at Casey Eye Institute, Oregon Health & Science University, explores opportunities for early diagnosis when a parent, sibling or other relative has already been diagnosed.

Latifa and her mother

Retinoblastoma in Ghana: Saving Children’s Life and Sight

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.

Jayne and a child are pictured wearing long yarn wigs of different colours.

Jayne Kamau, My Friend and Colleague

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.

A young boy practices giving eye drops to a medical play puppet.

10 Ways to Support Your Child Through EUA for Retinoblastoma

Examinations Under Anaesthetic (EUA) are an essential part of retinoblastoma diagnosis, treatment, and surveillance follow up care. Combining content from our Child Life Resource, Morgan Livingstone CCLS CIMI MA reviews 10 ways parents can support children of all ages through the experience to benefit everyone’s wellbeing.

2 people side by side at a wooden table, one working on a laptop the other writing in a notebook. Only their hands are visible.

4 Reasons Survivors and Families May Not Participate in Retinoblastoma Research, and Ways to Improve Engagement.

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.

This image features two pieces of text, above and below an image of a stick family, ranged in order of height from the tall father through mother and various children to the family dog. Above: “When a child is diagnosed with cancer, the whole family is affected.” A gold ribbon sits behind the word “diagnosed”. Below the family: “Please support a local family in your community who has a child battling for their life. Bold for gold! Childhood cancer awareness and hope.”

Talking About Your Child’s Cancer Diagnosis With Family and Friends

Talking about a child’s cancer with family and friends can be deeply cathartic for parents one day, and utterly exhausting the next. Asking for and receiving help can be a minefield too. Morgan Livingstone CCLS explores why this is so, and offers tips and tools to reduce stress, improve coping and boost effective practical support.

Statue of a blind girl sitting on a plinth, leaning against a post in contemplation while reading a book balanced on her knees and one hand.

Father Braille: A Wonderfully Dotty Relationship

For many individuals diagnosed with retinoblastoma, sight-loss means braille is the primary means of reading and writing. In celebration of World Braille Day on Friday January 4th, Rb survivor Ffion Miles introduces us to a very special relationship she has with six tiny dots, and the marvellous adventures they’ve shared together.