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.
Tag Archive for: life beyond retinoblastoma
Retinoblastoma research is vital to understand how this cancer behaves; treatment benefits, side effects, and risks; and impacts throughout life. Findings help guide medical and supportive care for the child patient, survivor, and family. Rb Survivor, Abby White explores different types of medical research; their goals, benefits, and limitations; and opportunities to overcome the current challenges.
Events that unite our retinoblastoma community are vital for mutual support and collaboration to advance care for children, adult survivors, and families. They all happen thanks to dedicated volunteers. In the second of this 2-part post, we explore the many ways volunteers support our work, benefits to both the individual volunteer and community, and how you can help.
Retinoblastoma is a rare childhood cancer with unique family and lifelong impacts. Events that bring our community together are vital for mutual support and collaboration to advance care. They happen thanks to dedicated volunteers. In part 1 of this 2-part post, we focus on Family Days and the One Rb World conference, planned and hosted entirely by volunteers.
Being in hospital during the Holidays means children and parents cannot join the usual festivities. But you can bring festive spirit and familiar traditions into your hospital space to delight and sustain you all. While cancer has no regard for Christmas, Rb Survivor, Abby White shares 10 ways to support your emotional wellbeing, and your child’s, and welcome festive cheer during a yuletide inpatient admission.
Parenting children through retinoblastoma is tough. Being their chief advocate is one of your most important roles throughout their cancer experience. Rb Survivor and WE C Hope CEO, Abby White, discusses why parents and caregivers should advocate for child life support, how to ask for child life services, and how to work effectively with child life professionals for the best outcomes.
The glorious visual spectacle of this Holiday Season can exclude and isolate a child with vision loss from retinoblastoma, but we can experience these traditions with all our senses. In part 2 of this festive blog, bilateral Rb Survivor, Abby White, shares six more ways to include blind and visually impaired children in Holiday traditions, creating delight for the whole family.
When a child has vision loss from retinoblastoma, highly visual aspects of this Holiday Season can be challenging, exclusionary and isolating. But a little thought and creative adaptation can completely change the experience. In part 1 of this 2-part blog, bilateral Rb Survivor, Abby White, shares 12 ways to include blind and visually impaired children in traditional Holiday activities.
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.
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.