Tag Archive for: Ocular Oncology

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.

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Remembering Dr. A Linn Murphree

With a heavy heart, we share the news that Dr. A Linn Murphree, Professor of Ophthalmology, Founder of the Vision Center, and Director of the Retinoblastoma Program at Children’s Hospital Los Angeles and USC, passed peacefully on March 9th, 2022. Linn was a tremendous force in ocular oncology, advancing knowledge of the RB1 gene, and care for children with retinoblastoma.

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.

Promotional card in tropical colours. Text reads: "One Retinoblastoma World. Virtual Conference, October 1-3. A global conference for eye and cancer specialists, researchers, parents, and survivors. Register Today!” www.wechope.org/onerbworld

Register Now for One Retinoblastoma World 2021 – Sharing Ideas, Opportunities and Friendship

As the 6th One Retinoblastoma World Conference fast approaches, this year’s organizers Sandra Staffieri and Marissa Gonzalez, together with Megan Webber, are excited to share an update. They give an overview of the program, highlighting some of the sessions and goals, and the need for global discussion and collaboration involving all stakeholders.

A pink banner with the words “register now” spans the top of the image. Diamond Head in Honolulu is bathed in light, under a slightly cloudy blue sky. The One Rb World logo includes a yellow flower for Hawaii. Text reads: One Retinoblastoma World | Virtual Conference | October 1-3, 2021

Register Now for One Retinoblastoma World 2021 Virtual Conference!

Join World Eye Cancer Hope and local organizers from Australia for the sixth One Retinoblastoma World Conference, taking place virtually from October 1 – 3, 2021. Marissa Gonzalez, WE C Hope USA President, and this year’s Hosting Chair, introduces the conference and what’s in store for this unique collaborative program uniting professionals, families and survivors.

Two photo panels side by side. On the left, a baby boy is seen with the left eye turning in towards his nose. On the right, a baby girl has a red reflex in her right eye, while her left eye shows a dull creamy-white reflex.

Eye of the Storm: the impact of ‘not knowing’ on mental health

Retinoblastoma Awareness Week promotes life and sight-saving early diagnosis. Sandra Staffieri, Rb Care Coordinator at the Royal Children’s Hospital Melbourne, highlights the importance of raising awareness among parents, caregivers, health professionals and survivors; and how lack of knowledge and delayed diagnosis can impact children, parents, and adults with second cancer risk.

Lesley is sitting talking to a family in the hospital playroom. There are no other people in the frame. They are sitting at a round table, dad is holding his young son on his lap The child is wearing a Woody Toy Story character outfit, and laughing. Mum is sitting at the same table, wearing a green top and is laughing. Lesley is wearing a flowery top, is talking to the family and smiling. There are colourful toys on the table.

Childhood Eye Cancer Trust Support Workers: helping UK families and individuals through treatment and beyond

A retinoblastoma diagnosis is distressing for a family, its effects often lifelong. CHECT Support Workers help families and individuals in the UK, from diagnosis and throughout life. Support Service Manager, Lesley Geen, describes how CHECT Support Workers collaborate with the medical team to care for the whole family, and the different support services offered at each stage of life.

Sandra is pictured with two young children on EUA day. Mila is wearing a lilac tulle dress with a white long-sleeved shirt underneath, and white sandals. She is holding a pink unicorn and white teddy bear. Levi is wearing a white t-shirt and denim shorts, holding as soft lion toy. Sandra is squatting behind them, her arms wrapped around both children. She is wearing dark blue scrubs.

My life as a Retinoblastoma Care Co-ordinator

From the moment a child is diagnosed with retinoblastoma, even from when their parent first takes them to the doctor, life is a rollercoaster, a whirlwind of information, decisions, and grief. Sandra Staffieri describes her role as Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, how the role evolved, challenges faced, and the unexpected joys experienced despite it all.