Entries by Abby

4 Key Ways Sharing Your Story Makes a Difference, and Tips for Telling

Every individual in the retinoblastoma community has a unique story to tell – whether parent, survivor, sibling, professional, extended family member or supporter. Abby White explores the importance of storytelling, and the many ways in which sharing your story can make a difference – to your own life, and to the world.

#TuesdayTunes: Songs With Meaning

Throughout this year, we have shared monthly #TuesdayTunes on our social media – songs chosen by parents, survivors and professionals in our retinoblastoma community because of their special personal meaning.  As the year draws to a close, we gather together all this beautiful music and insight, and welcome in the new decade with heart.

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.

Bullying After Retinoblastoma: How to Help Kids Respond With Confidence

Children diagnosed with retinoblastoma are especially vulnerable and sensitive to bullying due to treatment effects. Morgan Livingstone CCLS discusses what bullying is and isn’t, how parents can recognize the signs, and help young Rb survivors use stories and develop skills to stand up to bullies with confidence.

6 Ways to Help Older Children and Teens Cope With and Conquer Hospital Anxiety

Many children and teenagers experience anxiety with medical interactions after retinoblastoma diagnosis.  Pediatric registered nurse and child life intern, Michelle Badejo, describes how hospital anxiety can manifest, and explores how parents can help them cope, be active participants in their ongoing care, and raise their quality of life.

When Survivors Grow Up: Family Experiences After Retinoblastoma

Retinoblastoma is highly curable, but lifelong impacts are significant for survivors, siblings, parents and extended family. After a particularly painful personal insight, Rb survivor and WE C Hope CEO Abby White asked families and survivors about their own experiences of life beyond childhood eye cancer care.

How Do I Create A Family When I Have An RB1 Mutation?

Individuals who carry an RB1 mutation have a 50% chance of passing the retinoblastoma cancer syndrome on to each child.  Melissa Mills, bilateral retinoblastoma survivor and genetic counsellor, explores the psychological and physical impacts of this experience, and the different routes to creating a family when a prospective parent has an RB1 mutation..

A Day Well Spent – California Family Day

Local in-person support specific to the needs of families and survivors affected by retinoblastoma is much needed but very rare. Lisa Hester, mother of a young Rb survivor, reflects on the second WE C Hope California Family Day, held in August 2019, the seeds of our mission to bring this support to all across America.

Reflections of Camp Sunshine by Rb Moms

A diagnosis of childhood eye cancer impacts families in so many ways, during the immediate crisis of treatment, and years after “cure”. Knowing you are not alone on the journey is the greatest comfort and strength. Five mothers reflect on the healing power of Camp Sunshine, a retreat that cares for the entire family when cancer strikes.