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.
Retinoblastoma is staged to help doctors describe the degree of cancer in a child’s body, define potential for cure / eye salvage, determine best treatments, and compare impact of different therapies. Each eye is staged separately to define potential for safely saving the eye and vision.
The retinoblastoma world lost a dedicated physician and friend on Friday, July 22nd. Dr Barrett Haik was a highly skilled ophthalmic surgeon, researcher, educator, mentor and fundraiser who cared deeply for the children, adults and families he treated. He led development of the ophthalmic oncology service at St. Jude Children’s Research Hospital, and supported international outreach that has improved the lives of thousands of children with retinoblastoma across the USA and around the world.
So many days I feel I am banging my head against a wall, watching children die who could have been saved with clear information, simple surgery and emotional support. But the knowledge of how life could be made better for each child, family and survivor is a strong motivational pull. The suffering that can be mitigated with relatively small resources. Somehow when I think I have no more energy, I mine a new seam from within, and from the encouragement and kindness of others, and I move forward, one step at a time.
Intraocular retinoblastoma is classified and staged to help doctors describe the degree of cancer in a child’s eye, determine best treatment options, define potential for cure / eye salvage, and compare impact of different therapies. Each eye is classified to define potential for safely saving the eye / vision. Stage of bilateral Rb is based on the worst affected eye, as an indicator of risk to the child’s life. When an eye might be classified into one of two groups, the higher risk group should be selected. This reduces risk of eye loss or life threatening relapse due to under-treatment.
Taking photographs to check for red eye reflex is one of the best ways parents can detect early signs of serious eye disease in young children. Here we explain red eye photography and the simple technique all parents should know to check for healthy red reflex in children.
Two children. The same affliction. Drastically different outcomes. Yet each story represents the most common reality for children with retinoblastoma in these respective parts of the world.
