Tag Archive for: retinoblastoma

A female doctor wearing green scrubs, surgical mask, and a brightly coloured scrub cap, sits on a play area with a child patient. She has placed her stethoscope on the child’s doll. The child is facing the doctor, mostly out of frame, and is using a toy stethoscope to mirror the doctor’s actions.

10 Child Life Tips for Clinicians

Medical appointments, procedures, and treatments are potentially stressful for children and their families, at all stages of their retinoblastoma experience. Child life specialist Morgan Livingstone shares 10 simple ways all medical professionals can ease stress and anxiety, support healthy coping, and help children and families thrive throughout simple interactions and complex cancer care.

Image: A group of people gathered under a tree are smiling at the camera. On the left, Melinda wears a blue top. In the middle, Marissa wears a One Retinoblastoma World t-shirt and holds a white cane. To the right of the frame, Clayonia holds Camilla and waves at the camera. Max stands in front of them, holding his white cane. Behind them, a bright blue sky sweeps over rich foliage and red-roofed buildings.

Midwest Retinoblastoma Family Weekend: Friendships Formed in the Windy City

This summer, patients, survivors and families gathered for the first-ever Midwest Retinoblastoma Family Weekend, just outside Chicago. WE C Hope USA President and Rb survivor, Marissa Gonzalez, reflects on the friendship, support, hope, and fun shared, and the importance of coming together in person as a community. She also gives an update on more events coming soon to other regions across the USA.

A group of children sit around a large round board game laid out on the floor. A young girl is kneeling with her body stretched out across the board as she takes her turn.

Child Life Specialists in Schools: Supporting Children With Cancer

Children need a lot of support when they begin or return to school after treatment for cancer.  Child Life Specialist and Elementary School Teacher, Meagan Fuller, explores how child life specialists in schools can help children with retinoblastoma adjust to school life, understand their experience, and find healthy ways to talk with peers about their cancer and visual impairment.

A diverse group of people sit around a table talking. The table is filled with papers and classes of water, and more people are seen working together around tables in the background..

Ethnography: A New Frontier in Retinoblastoma Research

Every child with retinoblastoma, parent, sibling, survivor, and medical professional has a story to tell of their journey through childhood eye cancer. Understanding our individual and collective experience empowers us to develop and deliver holistic care for all.  Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.

A mother breastfeeds her baby while sitting on couch at home.

Breastfeeding When Your Child Has Retinoblastoma

Breastfeeding is one of the many decisions parents navigate when their baby or toddler has retinoblastoma. Paediatric nurse and child life specialist, Cindy Pilchuk, explores the benefits and challenges of breastfeeding through treatment, with practical tips for continuing or re-starting breastfeeding, weaning after diagnosis, maintaining milk supply, and comfort supports for both mother and child.

Fire Poppies – vibrant golden petals and green leaves brighten a scorched landscape.

8 Ways to Heal Survivor Guilt

Anyone affected by retinoblastoma can experience survivor guilt – child and adult survivors, siblings, parents, grandparents, and others. WE C Hope CEO and Rb Survivor Abby White concludes this four-part series on Survivor Guilt with 8 practical suggestions to help acknowledge, move through, and heal from the destructive emotions that fuel survivor guilt.

Understanding Survivor Guilt

Survivor guilt of some kind is an almost universal experience for individuals affected by retinoblastoma – survivors and siblings of all ages, parents, grandparents, and others. Continuing our four-part series on Survivor Guilt, WE C Hope CEO and Rb Survivor Abby White explores the causes, risk factors, and underlying emotions.

an anchor tethers a bright red hot air balloon floating in a grey sky.

7 Ways Retinoblastoma Families and Survivors Experience Survivor Guilt – part 2

Anyone affected by retinoblastoma can experience survivor guilt – survivors and siblings of all ages, parents, grandparents, partners, and others.  WE C Hope CEO and Rb Survivor Abby White continues to explore the many ways in which family members experience survivor guilt, and the potential impacts during treatment and throughout life.

A red butterfly is reflected in water as it hovers above, against a pale blue sky.

7 Ways Retinoblastoma Families and Survivors Experience Survivor Guilt – part 1

The life-changing experience of retinoblastoma can weave a legacy of survivor guilt that may affect anyone in the family – child and adult survivors, siblings, parents, grandparents, and others.  WE C Hope CEO and Rb Survivor Abby White highlights the many ways in which family members experience survivor guilt, and the potential impacts during treatment and throughout life.

Text reads “Retinoblastoma Treatment Decisions 12 Step Guide”. The background is a blue painted wood table. To the right of the text, a pen rests on the blank open page of a notebook. Around the notebook sits a pair of glasses, a cup of coffee, and a small plant with green leaves.

New Treatment Decision Making Guide

Parents face many decisions about their child’s retinoblastoma treatment. The experience can be complex, highly emotive, and stressful. WE C Hope CEO Abby White introduces our new comprehensive guide to making treatment decisions, a tool to help parents navigate the process and make the best choices at every stage of their child’s eye cancer journey.