Tag Archive for: childhood eye cancer

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.

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.

A person's hands are seen typing on a laptop

Social Media Support: 10 Reasons Why Exchanging Medical Advice can be Unhelpful, and What to do Instead

When someone asks for support on social media, instincts drives us to offer hopeful solutions. But without full knowledge and understanding, we may cause more harm than help. Reviewing real interactions and their outcomes, WE C Hope CEO, Abby White, shares key points to consider when discussing retinoblastoma, and how to respond well.

A hand reaches through the screen of a computer to hold the hand of the person standing in front of it. The person standing is reflected in the screen.

Social Media Support: 7 Ways to Respond Effectively, and Why Our Responses Matter

How we respond to one another in retinoblastoma support forums, and the information we share, can significantly impact patient care and outcomes. Abby White shares 7 ways we can respond positively to any social media request for help, to improve communication, support, and best care for the child/survivor and family.

A young teenage boy wearing glasses leans in towards a large computer screen on the desk in front of him. Text on the screen has been blurred for privacy. A smaller screen sits on his right, and an iPad can be seen to his right.

Online Learning Challenges and How to Help Kids with Vision-Loss Thrive

Children with vision loss from retinoblastoma need accommodations and extra support to access online learning and thrive in the virtual school world. Rb survivor and Orientation and Mobility Specialist, Jessica Givens, explores key challenges of online education, and the best ways to help children reach their potential in the virtual classroom.

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 8 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.