Tag Archive for: eye cancer

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.

A baby has a white pupil glow in the left eye, and healthy red reflex in the right eye.

If In Doubt, Check It Out: Common and Not-So-Common Signs and Symptoms of Retinoblastoma

Prompt investigation of signs and symptoms is vital to diagnose retinoblastoma early. Timely diagnosis provides the best opportunity to save a child’s life and sight.  For Retinoblastoma Awareness Week 2022, Rb Care Coordinator Sandra Staffieri explores the signs and symptoms that may lead to a diagnosis of childhood eye cancer.

A fuzzy, brown teddy bear sits on a table with a blue table cloth. The bear has red and black plaid feet, a cream snout, black eyes, a brown nose, and a black smile. A nasograstric tube and a gastrostomy tube are inserted, and an IV pole and IV fluids are seen to the side. Behind the bear is a teddy bear sized hospital bed and a green curtain.

Play – The Key Ingredient to Pediatric Medical Care

Play is the language, university, and business of childhood. Medical play is a key part of child-focused health care, helping young patients learn, reduce fear, and take part in their care. Sophie Goldberg, child life intern and student of Child Life and Pediatric Psychosocial Care, explores what medical play is, and how you can use it to empower your child through their medical experiences.

A child life specialist distracts a child with an iPad game while he receives a vaccination. A fourth person is seen to the left of frame. All four are wearing face masks.

No Pain = Gain: How to Manage your Child’s Pain During Uncomfortable Experiences

Having medical procedures can be tough for children, especially when many are repeated during a long course of medical care. Though necessary, they do not need to be painful. Maria Sohail, child life intern and Masters Candidate in Child Life and Pediatric Psychosocial Care, explores a range of pain management strategies that can support a child’s mind and body comfort.

Marissa and her mother are smiling at the camera. Marissa is wearing a black and gold number 6 USC football jersey. Her mom is wearing a cardinal USC shirt. Behind them stands the statue of Tommy Trojan on the USC campus.

A Milestone Anniversary: Celebrating 30 Years Being Cancer Free

For many children and their families, eye cancer diagnosis begins a lifetime journey, with many twists and turns through treatment and long after being declared cancer free. World Eye Cancer Hope USA President Marissa D. Gonzalez reflects on three decades being cancer free from retinoblastoma, the journey of a cancer survivor, and the future with her cancerversary fundraiser.

A young girl with a dressing over one eye sits on her mother's lap, while a medical professional crouches so his face is level with hers. He offers his open hands to her, palms up. All three people are African.

How to Advocate for Child Life Support in Your Child’s Medical Care

Parenting children through retinoblastoma is tough.  Being their chief advocate is one of your most important roles throughout their cancer experience.  Rb Survivor and WE C Hope CEO, Abby White, discusses why parents and caregivers should advocate for child life support, how to ask for child life services, and how to work effectively with child life professionals for the best outcomes.

A high doorway is framed by two Christmas trees, each standing about 10ft tall. They are exquisitely decorated with hundreds of gold lights, pink glass roses, and other ornaments that reflect and refract the light. A large banqueting table is set up in the centre, surrounded by high back red velvet chairs that contrast beautifully against the glittering gold candelabras. Gold crackers and sparkling goblets at each place setting hint at the anticipated party. Along the centre of the table, intricate models in cream, glitter and gold show scenes from the story of Cinderella. On the left of frame is the glittering expanse of a fairy-tale castle. To the right, two ladies gesture and watch the pumpkin carriage racing away over a bridge. Further right, Prince Charming stands below a clock tower as the hands point to midnight, and Cinderella races away down a flight of stairs, a single glittering slipper lost behind her. Almost off-frame, a chair is pictured, in which someone is sitting to try on a shoe. The overall setup is glittering splendour. The high doorway, significantly higher ceiling, very large, tall trees, and several statues between them, give the impression of a grand, spacious room out-of-frame.

12 Ways to Inclusive Festive Fun: How to Celebrate the Holidays with Your Child Who Is Blind or Visually Impaired – Part 2

The glorious visual spectacle of this Holiday Season can exclude and isolate a child with vision loss from retinoblastoma, but we can experience these traditions with all our senses. In part 2 of this festive blog, bilateral Rb Survivor, Abby White, shares six more ways to include blind and visually impaired children in Holiday traditions, creating delight for the whole family.

Six soft jute cloth bags in colours of earthy red, green, and gold sit in a row. They showcase two displaying kinds of tactile embellishment. On 3 bags, carved wooden tags shaped like a gingerbread man, Christmas tree and star clearly display the dates as raised tactile numbers. On the other three, foam stickers shaped like a tree, love heart and stocking, the numbers are large tactile cut-outs.

12 Ways to Inclusive Festive Fun: How to Celebrate the Holidays with Your Child Who Is Blind or Visually Impaired – Part 1

When a child has vision loss from retinoblastoma, highly visual aspects of this Holiday Season can be challenging, exclusionary and isolating. But a little thought and creative adaptation can completely change the experience. In part 1 of this 2-part blog, bilateral Rb Survivor, Abby White, shares 12 ways to include blind and visually impaired children in traditional Holiday activities.

A slide from Sarah’s presentation, titled “Thank You”, with a single photo and the One Rb World 2021 Logo below. In the photo, Sarah sits on a rock structure at the top of a mountain. Her body is facing to the left, her legs outstretched, and her feet resting on a different rock. She is leaning against the rock she is seated on, looking away from the camera at the view. Slivers of blue sky peak through the blanket of clouds, and in the distance, many trees, farms, fields and national parkland can be seen from this high vantage point.

One Rb World 2021: Planning, Creating, Sharing and Raising Hope Together

On 1-3 October, we hosted a hope-filled One Rb World 2021 meeting. Planning and hosting is always an adventure, and the 6th One Rb World was especially so! Co-Chairs, Dr. Sandra Staffieri PhD, Rb Care Co-Ordinator, Royal Children’s Hospital, Melbourne, Australia, and Marissa Gonzalez, Bilateral Rb Survivor and President, World Eye Cancer Hope USA, share behind-the-scenes insight and conference highlights.

The book When sadness is at your door by Eva Eland sits on a child’s lap as they hold it. The book is opened to a page showing an illustration of a child standing on a tree stump hugging a blue shadow that is their sadness. The text on the page reads “Maybe all it wants to know is that it is welcome”.

How to Help Your Child Work Through BIG Emotions

Young children are often overwhelmed by big emotions in the natural process of their development. When they face ongoing stressors like cancer or a pandemic, giving them support, tools and skills to learn about and work through their emotions is critical. Child life specialist Rebekah Reimer provides some practical guidance to help.