Rowan and Harry sit at a table, chatting.

Friendships Through Retinoblastoma

A diagnosis of childhood cancer can leave parents feeling adrift and utterly alone. The friends who walk with them through their child’s medical care are often cherished lifelong, and from a central thread in their own healing. Megan Santos reflects on the many friendships formed before, during and after her daughter’s treatment for retinoblastoma.

Two young girls, one Caucasian, one African, recline together on a blue sofa, smiling.

Challenging the Global Retinoblastoma Burden on World Population Day

July 11, World Population Day, focuses attention on the urgency and importance of population issues. Helen Dimaras Ph.D considers the effect of our expanding global population on the expected numbers of children who will develop eye cancer each year, and the provision of effective care to meet their needs.

Life as a Registered Mom

On Saturday 12 May, International Nurses Day celebrates the incredible life-saving, life-changing work of nurses around the world. Janine Patterson shares the uncommon experience, benefit and burden of being a nurse when your child is diagnosed with cancer, and important things she has learned along the way.

Tree of Life - thr trunk of the tree is a DNA double helix

How DNA and Genetic Knowledge Changes Lives: the impact of genetic testing for five families affected by retinoblastoma

Retinoblastoma survivor and WE C Hope co-founder / CEO, Abby White, considers the central importance of DNA and genetic knowledge in caring for the child and family. She introduces us to Alice, Jamie, Megan, Rachel, Peter and their families, to find out how genetic testing can influence treatment, screening and lifelong care.

“Grief is in two parts. The first is loss. The second is the remaking of life.” Anne Roiphe

Make Space for Grief: Honour the place you are in

Linda Conyard MGestT explores the grief that can arise from retinoblastoma diagnosis, treatment, eye removal surgery, loss of innocence, and mutilated family life. She considers the potential harm of suppressing this grief, and offers both families/survivors and medical professionals ways to prevent prolonged suffering.

The Informed Parent – 6 Tips for Staying Up to Date in a Social Media World

Google and social media play an increasingly significant role in the lives of families affected by retinoblastoma, but without careful use, they can complicate a child’s medical care and even put life at risk. Dr. Jesse Berry shares her recommendations for being a safely informed parent advocate in the modern hyper-connected age.

“Some journeys don't have endings, they lead to new beginnings. These are the journeys that lead to great adventures!” Alex Haditaghi from ‘Softly, As I leave her’ 2016. Quote set against background of sunrise painting a golden pathway over blue ocean, into a slightly clouded blue sky.

One Retinoblastoma World, A New Realm of Discovery

When Sandra Staffieri left Australia in August 2012 for a conference in Italy and a tour of retinoblastoma centres in North America, she had no idea how radically the journey would change her life and care at the Royal Children’s Hospital, Melbourne. Yet as she departed, the key destination was not even on her itinerary…

Wrapped up against the cold, Jim and Liza Valavanis and their three children are pictured together in a snowy winter wonderland.

Life Through Sam’s Eyes – How Our Blind Son Helped Us See

What does it mean to be told your 12 week old baby has a rare eye cancer? Jim Valavanis shares his experience of first-time parenting, nearly five years of childhood cancer treatment, and Life Through Sam’s Eyes – the hope-filled book that emerged from his healing journey.

Through Our Eyes at One Retinoblastoma World 2017

Parents and survivors shared their thoughts on the “Through Our Eyes” wall at the One Rb World meeting in Washington D.C., 9-11 October 2017. These powerful insights were gathered anonymously via this website during September 2017, and highlight wide-ranging concerns.

One Rb World group photo

One Retinoblastoma World 2017, Washington D.C.

Focused on best care for all, One Rb World 2017 included the first ever US national Family & Survivor Day. The collaborative program covered awareness, treatment, parent advocacy, life-long care, research, child life and the pathway to progress for our global community.