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.
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.
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.
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.
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.
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.
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.
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.
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.
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.