Tag Archive for: cancer life

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 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.

Two adult hands rest on each side of a baby's headm in the middle of a massage stroke. The baby has a restful expression, and the backgroud is a calming lavender.

7 Infant Massage Tips for Improved Summer Sleep

Hot weather and changing holiday routines – summer can be unsettling for babies and young children. Add retinoblastoma to the mix, and achieving good sleep at this time of year can be very hard for affected children and siblings. Morgan Livingstone CCLS explains how infant massage can help, offering specific practical ways to improve sleep during sultry summer months, whether or not a child is receiving cancer care.

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.