Tag Archive for: eye cancer

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.

The gold pin on a compass points to the word "survivorship"

7 Survivorship Tips and Tricks: navigating the adult post-retinoblastoma world

Diagnosis and treatment of eye cancer in early childhood is only the start of a lifelong story for many individuals affected by retinoblastoma. Marissa Gonzalez, Rb survivor and President of World Eye Cancer Hope USA, shares seven tips for being an active participant in your retinoblastoma survivorship journey.

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 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 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.