On Saturday 12 May, International Nurses Day celebrates the incredible life-saving, life-changing work of nurses around the world. Janine Patterson shares the uncommon experience, benefit and burden of being a nurse when your child is diagnosed with cancer, and important things she has learned along the way.
Retinoblastoma survivor and WE C Hope co-founder / CEO, Abby White, considers the central importance of DNA and genetic knowledge in caring for the child and family. She introduces us to Alice, Jamie, Megan, Rachel, Peter and their families, to find out how genetic testing can influence treatment, screening and lifelong care.
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.
Google and social media play an increasingly significant role in the lives of families affected by retinoblastoma, but without careful use, they can complicate a child’s medical care and even put life at risk. Dr. Jesse Berry shares her recommendations for being a safely informed parent advocate in the modern hyper-connected age.
Brenda Gallie, global leader in retinoblastoma clinical care, research and innovation, discusses an exciting technology promising to improve care during treatment and beyond. DePICTRB supports collaboration among the child’s entire circle of care, gives parents open access to their child’s record, and empowers clinical research.
When Sandra Staffieri left Australia in August 2012 for a conference in Italy and a tour of retinoblastoma centres in North America, she had no idea how radically the journey would change her life and care at the Royal Children’s Hospital, Melbourne. Yet as she departed, the key destination was not even on her itinerary…
What does it mean to be told your 12 week old baby has a rare eye cancer? Jim Valavanis shares his experience of first-time parenting, nearly five years of childhood cancer treatment, and Life Through Sam’s Eyes – the hope-filled book that emerged from his healing journey.
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.
Focused on best care for all, One Rb World 2017 included the first ever US national Family & Survivor Day. The collaborative program covered awareness, treatment, parent advocacy, life-long care, research, child life and the pathway to progress for our global community.
Focused on best care for all, One Rb World 2017 included the first ever US national Family & Survivor Day. The collaborative program covered awareness, treatment, parent advocacy, life-long care, research, child life and the pathway to progress for our global community.
