Tag Archive for: childhood eye cancer

“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.

A diagram showing DePict in the midlle, next to the patient, and all members of the care team who can interact with the system to enhance the child's care. All care is underpinned by child life support.

DePICT the Cancer Care Journey, Overcome Rarity Through Collaborative Research

Brenda Gallie, global leader in retinoblastoma clinical care, research and innovation, discusses an exciting technology promising to improve care during treatment and beyond. DePICTRB supports collaboration among the child’s entire circle of care, gives parents open access to their child’s record, and empowers clinical research.

“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.

Quote and text in gold bevelled font below multi-coloured lights on a tree: “Happiness depends upon ourselves” – Aristotle.

12 Ways to be Happier in the New Year

New beginnings, hopes, dreams, possibilities, resolutions. January is an ideal time to explore how we can make our daily lives happier. Our volunteer CEO, Abby White, shares New Year greetings, tips for a happier 2018, and a personal message of change as the New Year begins.

Happy Holidays - red silhouette of Santa on sleigh pulled by reindeer, flying past the moon. Set on gold background – reflecting colours of the WE C Hope logo.

Season’s Greetings from WE C Hope

Season’s Greetings. Bright lights adorn trees, festive music cheers the soul, and gifts the world over bring joy to those we love. This is a special time for celebration and reflection, for coming together as a community, and sharing hope. Especially when a child has cancer…

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.

Group photo outside the Jefferson Memorial.

Reflecting on One Retinoblastoma World 2017

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.

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.