Tag Archive for: retinoblastoma survivor

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 family stand together on an open landscape, facing away from the camera. The mother holds a young child in one arm while her other arm is wrapped around her husband’s waist. The father holds the other child aloft on his shoulders, their hands clasped and outstretched. The sky and landscape ahead is indiscernible due to the intensity of light. The brightest beam is seen through the window formed by the father and child and their clasped hands.

Deciding to Conceive with Heritable Retinoblastoma

When children may inherit retinoblastoma, deciding how to start a family awakens new feelings in survivors. Every possible option comes with complex questions and emotional costs, and survivors and their partners may experience feelings of isolation as they navigate their decisions. Rb survivor Ruth Greenslade shares her reasons for deciding to have children, and her personal perspective of factors to consider when conceiving with heritable Rb.

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.

A joyful young white girl in pale pink dress, extends both arms upwards, offering the peace hand gesture. The background is a blurred field of wild yellow flowers.

20 Outdoor Activities for Blind and Visually Impaired Children

Nearly all children with retinoblastoma have some degree of sight loss arising from the cancer and its treatment. Identifying outdoor activities they can fully engage with may be hard for families. Bilateral Rb Survivor, Abby White, shares 20 classic and creative activities that include blind and visually impaired children and help connect them with the natural world.

Bright lights reflect on the floor of a long, empty hospital corridor, with many open doors. The floor is painted pale green, the walls cream, and the doors a pale purple-blue periwinkle. At the end of the corridor, large double doors are painted dark green.

Living with the Retinoblastoma Cancer Syndrome Part 2: Risks, Impacts, Challenges and Opportunities

For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story. Sharing personal experience and insight from fellow Rb survivors, Abby White explores key challenges encountered along the way, from working with doctors who do not understand the risk to psychological impacts, and the need for more effective care.

Five creamy white tea light candles in cut crystal candle holders cast a warm glow in the darkness. The central candle holder is shaped like a lotus flower. Tiny points of colour at the base of each petal create a subtle rainbow effect throughout the glass that is very faintly reflected in the glass of the other candle holders, and in the light cast on the wood surface where they rest.

Living with the Retinoblastoma Cancer Syndrome Part 1: Understanding the Risks and Lifelong Care

For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story.  In the first of this two-part series, Rb survivor Abby White explores what the risk is and who it affects, the challenge of establishing personal risk, provision of lifelong follow up care, and early detection of second cancers. With contributions from fellow survivors.

Sunlight is seen pouring through a heart-shaped hole in storm clouds.

Who Cares? Becoming Your Best Friend with Compassion, Care and Love

We are quick to support family and friends in a crisis with words of comfort, encouragement, and affirmation, and practical acts to care for their wellbeing, so why are we so reluctant to give ourselves the same support?  Abby White explores the difference between self-compassion, self-care, and self-love, how they are connected, why they matter so much, and how we can cultivate them.

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.

A fennec fox with a small round white face, dark round eyes and nose and very large ears is framed against the orange-brown desert of North Africa. Text above and below the picture reads “Tell me more… I’m all ears.”

The Gift of Listening to Ourselves: how compassionate self-enquiry can reduce stress and help us heal

We all need to be heard, but how often do we truly listen to ourselves? Living or working with retinoblastoma can be emotionally overwhelming. WE C Hope CEO and Rb survivor, Abby White, shares personal experience of some listening techniques that help her cope with daily challenging thoughts and strong emotions such as anger, fear and worry.

A black father smiles broadly as he and his happy son play toy cars together.

Why Joy is a Superpower and How to Nurture Daily Joy – Even in Tough Times

As the COVID-19 pandemic continues, people worldwide are grappling with isolation, uncertainty, fear, and grief – for a lost way of life, and for relatives and friends. In these tough times, just like the retinoblastoma journey, nurturing joy is vital to help mind and body release tension and nourish hope. Morgan Livingstone CCLS explains why joy is a superpower, and how we can nurture it in ourselves and others.