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.

Distant view of families and volunteers gathered on a wooden bridge over a serene pond, and around its margins. All the vibrant colours of the people, forest, blue sky and impending golden sunset are reflected in the wishpond’s still waters.

Reflections of Camp Sunshine by Rb Moms

A diagnosis of childhood eye cancer impacts families in so many ways, during the immediate crisis of treatment, and years after “cure”. Knowing you are not alone on the journey is the greatest comfort and strength. Five mothers reflect on the healing power of Camp Sunshine, a retreat that cares for the entire family when cancer strikes.

An African doctor looks on as another uses a handheld digital camera to visualise a child's eyes during an exam under anaesthesia.

TNM Staging System for Retinoblastoma

Retinoblastoma is staged to help doctors describe the extent of cancer in a child’s body, define potential for cure, vision and eye salvage, identify the best treatments, and compare impact of different therapies. Dr. Ashwin Mallipatna explains the TNM Staging System for Retinoblastoma and why it is the best approach for patient care.

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.

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.

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.