Children affected by retinoblastoma carry emotional experiences that quietly shape how they see themselves. Thoughtful guidance can transform potential challenges into opportunities for growth and self-belief. Child Life Specialist Morgan Livingstone and WE C Hope CEO Abby White introduce personal story books as a creative, nurturing way to help children explore identity, build self-esteem, and celebrate who they are.
Sleep is vital to a child’s healthy development, and there are many simple, practical ways parents and caregivers can support healthful sleep. But what happens when stress and traumatic experiences affect a child’s sleep? Paediatric nurse and child life specialist, Cindy Pilchuk, offers practical trauma-informed sleep supports to aid children’s coping and restorative sleep.
Retinoblastoma is highly curable, but lifelong impacts are significant for survivors, siblings, parents and extended family. After a particularly painful personal insight, Rb survivor and WE C Hope CEO Abby White asked families and survivors about their own experiences of life beyond childhood eye cancer care.
Eye cancer is a potentially overwhelming experience for young children, whether patient or sibling. Child life can radically improve care and life for the entire family, but too many children lack access to this specialist support. Abby White shares how WE C Hope supported Child Life programs are helping to change that.
Linda Conyard MGestT explores the grief that can arise from retinoblastoma diagnosis, treatment, eye removal surgery, loss of innocence, and mutilated family life. She considers the potential harm of suppressing this grief, and offers both families/survivors and medical professionals ways to prevent prolonged suffering.
A mother asked: “How do we create joy in amidst the isolation, uncertainty, fear, and grief of retinoblastoma?” As people worldwide grappled with similar questions through the COVID-19 pandemic, child life specialist Morgan Livingstone explored why joy is a superpower, and how we can nurture it in ourselves and others. In all tough times, joy is vital to help body and mind release tension and nourish hope.
Babies and young children rely on all their senses for learning and development, communication, comfort and coping. Jocelyn Leworthy, RECE, CIMI explores the role our senses play in daily life and development from our earliest days, and how we can encourage fun sensory stimulation to nourish young lives.
Parents and survivors shared their thoughts on the “Through Our Eyes” wall at the One Rb World meeting in Washington D.C., 9-11 October 2017. These powerful insights were gathered anonymously via this website during September 2017, and highlight wide-ranging concerns.
One Retinoblastoma World is community, conversation, and collaboration in action. Families, survivors, and professionals unite to share knowledge and lived experience, shaping lifelong Rb care and support. WE C Hope CEO, Abby White, and WE C Hope USA President, Marissa D. Gonzalez, both Rb survivors, explore why being together in San Antonio this September matters so deeply for all in our community.
Living with the daily effects of childhood eye cancer can be overwhelming, for all family members. Both the immediate crisis of diagnosis and treatment, and the long-term impacts and risks. Child Life Intern and Student Teacher, Meagan Fuller, highlights some simple mindfulness techniques parents and children can use to ease daily tension.
