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.
Children with retinoblastoma are much more than a medical specimen. To achieve complete cure, we must consider them as a whole person, not just an eye or a body to be treated. A single word can completely change our focus.
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.
Abby White, WE C Hope co-founder and volunteer CEO, shares her experience of living with the consequences of bilateral retinoblastoma, and her very personal journey to the organization’s birth.
Meeting others who know understand life with retinoblastoma is a priceless gift. Marissa Gonzalez reflects on an afternoon of fun, friendship, knowledge and hope at the first CHLA Retinoblastoma Family Day.
We are looking forward to One Rb World and SIOP 2017 in Washington D.C. this October. Read about the 2016 One Rb World meeting and International Society of Paediatric Oncology World Congress in this blog mini series, originally shared later last year.
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.
