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.
Being the parent of a child with retinoblastoma, or living with the effects of this cancer, can be frustrating. We look at a few challenges and ways we can help the medical community advance care.
A special session at the 2016 World Congress of Paediatric Oncology was hosted in memoriam of Alfred G. Knudson, Jr., MD, PhD, who died in July. Knudson developed his “two-hit hypothesis” after years of observing children with retinoblastoma, and this now forms the backbone of cancer genetics. The session focused on most effective staging for retinoblastoma, identifying and treating high risk children.
“I have retinoblastoma”. Medical professionals would correct me – “you had retinoblastoma – now you are cancer-free”. But am I really free from cancer?
As a survivor of bilateral retinoblastoma, I am challenged to be supportive of dear friends facing their own second cancer journey, without being swamped by fear for my own future. I imagine this is a similar balancing act for parents whose children are in treatment now, as social media increasingly brings us into contact with families struggling to access appropriate care for their child.
