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.

A diverse group of people sit around a table talking. The table is filled with papers and classes of water, and more people are seen working together around tables in the background..

Ethnography: A New Frontier in Retinoblastoma Research

Every child with retinoblastoma, parent, sibling, survivor, and medical professional has a story to tell of their journey through childhood eye cancer. Understanding our individual and collective experience empowers us to develop and deliver holistic care for all.  Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.

Young patients put a brannula in the arm of a medical play puppet. They are wearing surgical gloves.

Child Life in Kenya: The Sally Test Child Life Program

Children with cancer experience invasive procedures and stressful events throughout their medical care that can impact their ability to cope, inhibit their development and negatively affect their health and well-being throughout life. Child life supports effective healthcare and reduces trauma. Morgan Livingstone CCLS describes how WE C Hope is bringing hope through Child Life to children and their families in Africa.

Flood: “Once you hear the sentence “your child has cancer” it is a constant flood till the end of treatment. It’s a flood of emotions, flood of information, flood of doubts, but in the middle of the flood you look at your child and you find the strength to keep your head out of water to survive.” Jackie, Mother of a Rb fighter. Image to the right shows a black and white photo taken underwater of a submerged woman wearing a long, white, sleeveless dress. Her face is above the waterline as her feet appear to be paddling and her arms extend to the sides.

Alphabet of Hope: Rewriting the Future of Retinoblastoma Care

After a year of publishing the #FamilyInSight Alphabet of Hope, we bring you the complete collection of 2020 Entries. This is the third #AlphabetOfHope. WE C Hope CEO, Abby White looks back at the alphabet’s genesis, and the insight, wisdom and motivation this literary project brings to the retinoblastoma community.

If You Tell Them, They Will Know: raising awareness of retinoblastoma signs can save lives, eyes and sight.

Strabismus (turned eye) and leukocoria (white pupil) are the most common early signs of retinoblastoma.  Sandra Staffieri, Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, explores why parent and healthcare provider awareness of these signs is vital to early diagnosis of childhood eye cancer.

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 young girl smiles broadly as she holds her arm out, thumb up.

International Care: Challenges and Opportunities

Families and medical professionals worldwide seek retinoblastoma care at centres offering treatments that are unavailable in their home country. Many families contact WE C Hope for assistance before, during or after such treatment. Abby White explores the challenges they experience and what can be done to help improve outcomes for their children.

A young girl and her father share a smile

Perfect Vision: Care and Cure for Children with Eye Cancer in Developing Countries

Retinoblastoma is highly curable with early diagnosis and modern therapies. But 90% of affected children live in developing countries, and globally, less than 3 in 10 children survive. Rb survivor and volunteer CEO, Abby White, explores the biggest challenges to care in developing countries, and some ways to overcome them.

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.

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.