Eleni stands on a waterside path. A little distance behid her, a fountain shoots a tall jet of water high into the air.

Life After Enucleation: 8 Retinoblastoma Survivors Share Hope

Despite advances in eye saving therapy for retinoblastoma, removing a child’s eye remains the most common treatment worldwide. Rb survivor and WE C Hope CEO, Abby White, shares her perspective of life after enucleation, and experiences from seven fellow survivors, offering hope to parents facing the reality of enucleation.

Enucleation, Life and Support: A Parent and Survivor Perspective

When a child has retinoblastoma, removing the affected eye remains the most common treatment worldwide to save life. Support is vital throughout treatment and long after. Lori and Grace Padilla share the perspective of a parent and a young adult survivor, their thoughts on enucleation, and the benefits of in-person support groups.

A boy wearing a hospital gown lies in hospital bed. He is attached to many monitors and tubes, smiling and giving a thumbs up.

10 Things Parents Want You to Know About Retinoblastoma

Caring for a child with retinoblastoma and healthy siblings is a complex journey for parents, from before diagnosis, through treatment, and beyond. Rb Mom and WE C Hope USA director, Lori Banos, shares 10 key messages parents have for health care professionals, fellow parents and the wider community.

A woman wearing a harness stands on a ship high above the waves. The setting sun and sail ropes are visible behind her.

10 Things Retinoblastoma Survivors Want You To Know

Retinoblastoma is highly curable. But for many survivors, it has lifelong impacts. In 2019, our Alphabet of Hope shared survivor insights of #LifeBeyondRb. Rb Survivor and 2019 alphabet curator, Abby White, highlights 10 important messages from survivors about life beyond treatment and cure of childhood eye cancer.

A mother and young child face one another oon couch while talking.

How To Support Siblings of Children With Retinoblastoma

Siblings of children with retinoblastoma often experience big fears, worries and emotions when their brother or sister is first diagnosed, during treatment, and beyond. Early Years Educator and Child Life Intern Keanna Gordon explores childhood eye cancer from the sibling’s perspective, and how parents can best support their wellbeing.

A woman sits alone on a couch at home.

Coronavirus: How to Protect Your Mental Health During Home Isolation

The coronavirus pandemic and social distancing measures are a high stress experience that may increase the risk of PTSD in an individual already susceptible due to childhood cancer trauma. Abby White explores 11 ways we can protect our mental health through the crisis, and reduce the risk of long-term negative effects.

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.

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.