A young girl wearing medical gloves, glasses and a stethascope prepares to practive a procedure on a medical play puppet.

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.

Close-up of a baby's face

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..

Five smooth pebbles are stacked in decreasing size on a beach, where lively surf rolls into shore. The high sky is clear blue, with a few clouds above the horizon, which is lightly tinged with a pale peachy glow of sunrise or sunset.

Mindfulness Tips for Retinoblastoma Families and Supporting Teachers

Living with the daily effects of childhood eye cancer can be overwhelming, for all family members. Both the immediate crisis of diagnosis and treatment, and the long-term impacts and risks. Child Life Intern and Student Teacher, Meagan Fuller, highlights some simple mindfulness techniques parents and children can use to ease daily tension.

Dr. Skalet examines a child under anesthesia using an indirect ophthalmoscope. Published with permission.

Familial Retinoblastoma Screening: When Eye Cancer Runs in the Family

Familial retinoblastoma affects more than one member of the same family. Diagnosing children early provides the best opportunities for life and sight-saving care. Alison Skalet, ocular oncologist and director of the Rb service at Casey Eye Institute, Oregon Health & Science University, explores opportunities for early diagnosis when a parent, sibling or other relative has already been diagnosed.

A young boy practices giving eye drops to a medical play puppet.

10 Ways to Support Your Child Through EUA for Retinoblastoma

Examinations Under Anaesthetic (EUA) are an essential part of retinoblastoma diagnosis, treatment, and surveillance follow up care. Combining content from our Child Life Resource, Morgan Livingstone CCLS CIMI MA reviews 10 ways parents can support children of all ages through the experience to benefit everyone’s wellbeing.

This image features two pieces of text, above and below an image of a stick family, ranged in order of height from the tall father through mother and various children to the family dog. Above: “When a child is diagnosed with cancer, the whole family is affected.” A gold ribbon sits behind the word “diagnosed”. Below the family: “Please support a local family in your community who has a child battling for their life. Bold for gold! Childhood cancer awareness and hope.”

Talking About Your Child’s Cancer Diagnosis With Family and Friends

Talking about a child’s cancer with family and friends can be deeply cathartic for parents one day, and utterly exhausting the next. Asking for and receiving help can be a minefield too. Morgan Livingstone CCLS explores why this is so, and offers tips and tools to reduce stress, improve coping and boost effective practical support.

Statue of a blind girl sitting on a plinth, leaning against a post in contemplation while reading a book balanced on her knees and one hand.

Father Braille: A Wonderfully Dotty Relationship

For many individuals diagnosed with retinoblastoma, sight-loss means braille is the primary means of reading and writing. In celebration of World Braille Day on Friday January 4th, Rb survivor Ffion Miles introduces us to a very special relationship she has with six tiny dots, and the marvellous adventures they’ve shared together.

Artistic tree in white and gold ribbon on red background, surrounded by snow and tiny and large snowflakes. Below, a wave of opaque white ribbon flows across the image.

Our 2018 Blog Year in Review

The WE C Hope blog has been busy in 2018. We’ve shared 24 posts from 17 authors – parents, survivors, researchers or professionals providing retinoblastoma-related care. Each has brought valuable experience, knowledge and perspective, and we are very thankful to them all. Here is a recap of posts we’ve shared in the past 12 months.

a baby plays with an anaesthetic mask

10 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.

Do you know the difference between a biopsy and pathology, or an RB1 gene deletion and Chromosome 13q deletion? Do you know how a retinoma becomes retinoblastoma or when remission becomes cure? In Part 2 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.

A baby has a squint - the right eye is rutned in towards the nose.

8 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.

Do you know the difference between lazy eye and squint, or an ocular oncologist and a paediatric oncologist? Do you know when extraocular Rb becomes metastatic, or why trilateral Rb is neither of these? In Part 1 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.