Tag Archive for: retinoblastoma for life

Three young girls sit one behind the other as they enjoy riding together down a slide. The girl at the back has curly brown hair and wears a light pink sweater. The middle girl has blonde hair and wears a light purple shirt. The girl in front has light brown hair, wears a pink top, and holds a plaid cushion. They are surrounded by green foliage and trees in the background. The sun creates halos around their hair as it blows with their movement down the slide, and blue sky is seen in the top right corner, beyond the trees..

Bridging the Gaps: How Community and Shared Responsibility Create the Best Retinoblastoma Care

Being the parent of a child with retinoblastoma, or living with the effects of this cancer every day, can be a frustrating experience. With an emphasis on our year-long theme of early diagnosis, we look at some of the challenges facing our retinoblastoma world, and for each, three ways we can work together to advance care for everyone.

Dan Gombos presents on the challenges of obtaining effective care for the adult with distant history of Rb. The slide behind him is titled “When It’s Time For Change” and reads: Once cured – the team may change; Few transition to a survivorship clinic; Even less to a survivorship clinic with Rb experience; Some children are never told of their diagnosis; Children grow up, move, and may live very far from any Rb specialists.

Retinoblastoma Survivorship at One Rb World

Retinoblastoma is a complex cancer with potentially significant and serious lifelong impacts for the survivor and all family members. Sessions at every One Rb World explore the risks and challenges survivors and families encounter beyond childhood eye cancer, and how we can improve comprehensive survivorship care throughout life. Below, we share sessions from the 2017, 2020, and 2021 meetings.

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.