Most children with retinoblastoma and survivors have some degree of sight loss, and many experience awkward healthcare interactions as a result. This 3-part series shares survivor and parent tips for medical professionals caring for and working with people who are blind or vision impaired. Part 1 focuses on general meeting and interaction.
Most children with retinoblastoma experience some degree of vision loss that requires accommodations and support to reach their potential in school. Four vision professionals, who have experience of retinoblastoma, review the supports children may need, and what parents can do to help secure them.
When a child has retinoblastoma, removing the affected eye remains the most common treatment worldwide to save life. Support is vital throughout treatment and long after. Lori and Grace Padilla share the perspective of a parent and a young adult survivor, their thoughts on enucleation, and the benefits of in-person support groups.
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.
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.
Annie, an important member of our team, retired on April 15th. Abby White, retinoblastoma survivor, WE C Hope founder and volunteer CEO, reflects on working with her guide dog for seven years. She considers the many varied gifts Annie has brought to both herself as an individual retinoblastoma survivor, and to WE C Hope.
