Tag Archive for: retinoblastoma

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.

Tree of Life - thr trunk of the tree is a DNA double helix

How DNA and Genetic Knowledge Changes Lives: the impact of genetic testing for five families affected by retinoblastoma

Retinoblastoma genetics are complex.  Their implications for medical care can be confusing for families and professionals alike.  For World DNA Day, Rb survivor and WE C Hope co-founder / CEO, Abby White, considers the central importance of DNA and genetic knowledge in caring for the child and family, during treatment and throughout life.

A child life specialist uses a unicorn horn-shaped bubble generator to distract a young girl and her father. She wears a brightly decorated black surgical cap, adorned with a flowery pink unicorn horn tiara, as well as a face mask, glasses, and surgical gloves. The father also wears a face mask and looks attentively at both the child life specialist and his daughter while securely holding the little girl. Dressed in shades of pink and surrounded by iridescent bubbles, she reaches out toward them with curious delight. In the background, a colourful mural features a smiling face, abstract shapes, and natural elements.

Distraction in Action: How to Build Kids’ Confidence and Comfort in Medical Care

Medical care can be overwhelming for children and their family, causing fear and distress. Without support, these experiences can escalate into medical trauma. WE C Hope CEO, Abby White, and Child Life Specialist, Morgan Livingstone, explore how simple distraction tools reduce anxiety, increase cooperation, and empower both children and caregivers to be calm, confident participants, even in complex medical care.

A bald toddler sits on her mother’s lap during a port access procedure. Her back rests against her mother’s chest, and her head is turned up and back towards her mother, who is leaning down in conversation. Both mother and child are white. The nurse accessing the port is seen from behind and has fair hair.

Comfort Positions: How to Help Children Feel Safe and Supported During Medical Procedures

Medical procedures can be stressful for children, often leading to fear, resistance, and lasting anxiety. Comfort Positions offer a simple and powerful way to ease distress, ensuring a safer, more supportive experience for children, caregivers, and medical teams. WE C Hope CEO, Abby White, and Child Life Specialist, Morgan Livingstone, explore how comfort positioning transforms medical care, fostering trust, cooperation, and emotional well-being.

A cream deconrated stone lays on a bed of grey stones. The word “Breathe” is written across the stone in flowing black script, accented with white dots. The portion of stone below the word is decorated with waves and water droplets in light, mid and dark blue, and mid green. They are all outlined in a series of tiny white dots.

Breathing for Wellness: Why Breath Matters, and 9 Ways to Breathe Out Stress

When we are anxious or angry, we tense up and hold our breath, or breathe fast and shallow, further increasing stress. Slow, deep breathing almost instantly diffuses tension, helping us feel calm, clear-headed and in control. Abby White explores why our bodies react this way, and how we can use our breath to restore calm fast.

7 children co-create a group board game, supported by an adult. One of the children is adding to the board game with a marker

Child Life for All Ages: Empowering Children with Cancer to Thrive

Retinoblastoma is a challenging journey for children and their families, often deeply affecting emotional and physical well-being long after treatment ends. Tailored support enhances quality of life during cancer care and beyond. Rb survivor and WE C Hope founder, Abby White; and Child Life Specialist, Morgan Livingstone, explore how child life specialists empower children of all ages and their families to cope, heal, and thrive.

Pamela Paul stands at a light wooden podium against a black background. She wears a blue dress patterned with yellow, pink, and orange flowers.

Storytelling for Life: Global Solutions and Lifelong Care at One Rb World 2024 Day Three | Page 3

As the 7th One Rb World Conference in Honolulu, Hawaii, reached its final hours, personal insights and global initiatives took center stage. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, reflects on the collective mission to save lives, including The New York Times Opinion feature, “It Takes a Lifetime to Survive Childhood Cancer,” – and the story behind the article.

10 adults smile together in front of a sign reading “Mahalo! One Retinoblastoma World”. Peggy and Michael are wearing black long-sleeve tops with dark wash jeans. Kirsten Ramos wears a blue shirt with light wash jeans. Jesse Berry wears a green dress with ruffles around the collar. Cat Paul and Joe Cox are wearing aqua-blue One Retinoblastoma World 2024 t-shirts featuring the conference logo and a design with palm trees, hibiscus, and waves. Victoria Danhakl wears a yellow and brown floral dress. And Roselle and Josh Castanon wear shirts with the slogan: I wear gold to support my daughter.

A Global Call to Action: Early Detection and Advocacy at One Rb World 2024 Day Three | Page 1

Day Three of the 7th One Rb World Conference in Honolulu, Hawaii, was a powerful culmination of global community, collaboration, and hope. From early detection in rural communities to life-saving care, from child life to patient-led research, and more. Marissa D. Gonzalez, Conference Event Chair, shares highlights from the inspiring presentations, life-changing progress, and extraordinary stories that closed this remarkable event.

Grace stands in front of a Hawaiian-themed backdrop of lush green foliage, flowers, fairy lights, and the word Aloha written in a glittery gold cursive font. She wears a beautiful floral dress in shades of pale pink, orange, and white. Her conference lanyard clearly shows her name badge, reading Grace Mbugua. She smiles broadly and holds a sign in each hand – one says: World Eye Cancer Hope - life and sight for every child. The other says: One Retinoblastoma World, Honolulu, Hawaii, October 15-17, 2024.

One Rb World 2024 Shines the Light on Life-Saving Care: Highlights from Hawaii Day Two | Page 2

Continuing our review of Day Two at the 7th One Rb World Conference in Honolulu, Hawaii, we explore critical life-saving advancements in global retinoblastoma care. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, delves deeper into the research developments, technological breakthroughs, collaborations, joyful child life, and uplifting survivor stories shaping a brighter future for all.

Two young girls stand side-by-side in front of a colorful Hawaiian backdrop of gold grass skirt and verdant green leaves adorned with pineapples and vibrant hibiscus flowers. Both girls wear leis, smile broadly, and hold signs displaying bright logos. On the left, Nicole is wearing a black baseball cap backwards, a yellow t-shirt, and white joggers, and holds a white sign that reads: One Retinoblastoma World, Honolulu, Hawaii, October 15-17, 2024. On the right, Natalie sports her pink glasses, pink t-shirt, and light blue jeans, and holds a white sign that says: World Eye Cancer Hope, life and sight for every child.

One Rb World 2024 Shines the Light on Life-Saving Care: Highlights from Hawaii Day Two | Page 1

The 7th One Retinoblastoma World conference took place in Honolulu, Hawaii over three days in October 2024. Day Two brought perspectives from around the globe as our scientific programming took center stage. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, shares highlights from discussions on life-saving care and technological advances in the second installment of this three-part conference review.