Most children with retinoblastoma and survivors have some degree of sight loss, and many experience awkward healthcare encounters arising from their sight loss. Rb survivor and WE C Hope CEO, Abby White, shares survivor and parent tips for medical professionals caring for and working with people who are blind or vision impaired.
Parents of children with retinoblastoma ask how often their child’s eyes should be examined under anaesthetic, and if schedules vary depending on type of eye salvage treatment. Abby White, in collaboration with a specialist from one leading US treatment center, helps to answer these important questions.
Our first virtual family event was a great success, with added sparkle from Kendra Scott jewelry. Please help us support more families by shopping at KendraScott.com on Sat 12 – Sun 13 September. They’ll donate to WE C Hope 20% of sales made using code GIVEBACK8400. Shine gold this September Childhood Cancer Month.
When eye cancer is diagnosed early, it may be possible to save a child’s eye or even sight. But tumours and treatments themselves affect vision. Sandra Staffieri, orthoptist and Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, reviews how different retinoblastoma therapies can impact the eye, and how parents can support their child.
Despite advances in eye saving therapy for retinoblastoma, removing a child’s eye remains the most common treatment worldwide. Rb survivor and WE C Hope CEO, Abby White, shares her perspective of life after enucleation, and experiences from seven fellow survivors, offering hope to parents facing the reality of enucleation.
Caring for a child with retinoblastoma and healthy siblings is a complex journey for parents, from before diagnosis, through treatment, and beyond. Rb Mom and WE C Hope USA director, Lori Banos, shares 10 key messages parents have for health care professionals, fellow parents and the wider community.
Retinoblastoma is highly curable. But for many survivors, it has lifelong impacts. In 2019, our Alphabet of Hope shared survivor insights of #LifeBeyondRb. Rb Survivor and 2019 alphabet curator, Abby White, highlights 10 important messages from survivors about life beyond treatment and cure of childhood eye cancer.
Diagnosis and treatment of eye cancer in early childhood is only the start of a lifelong story for many individuals affected by retinoblastoma. Marissa Gonzalez, Rb survivor and President of World Eye Cancer Hope USA, shares seven tips for being an active participant in your retinoblastoma survivorship journey.
Strabismus (turned eye) and leukocoria (white pupil) are the most common early signs of retinoblastoma. Sandra Staffieri, Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, explores why parent and healthcare provider awareness of these signs is vital to early diagnosis of childhood eye cancer.
Child life can profoundly impact a child’s experience of retinoblastoma, and their quality of life. However, many children treated at specialist retinoblastoma centres lack child life support, and their parents feel unsupported, compared with other cancer patients. Abby White explores the challenges and ways to overcome them.
