Fifty retinoblastoma patients, survivors, and their family members joined World Eye Cancer Hope USA in February for three days of connection and fun in Colorado’s capital. Marissa D. Gonzalez, President and Founding Board Member or WE C Hope USA, shares highlights from the weekend, and why these gatherings are so important to our community.
At seventeen months old, Marissa Gonzalez was diagnosed with bilateral retinoblastoma – the first turning point in her lifelong journey with this cancer syndrome. Today, as President of WE C Hope USA, she celebrates 32 years free from eye cancer, and shares the latest chapter of her cancer survivorship story, with two appeals to all in our community.
Worldwide, many children with eye cancer are diagnosed late. Early diagnosis saves lives, and offers the best opportunity for safe vision saving therapy. Leukocoria awareness advocate, Megan Webber, explores why glow awareness and community eye screening are vital to early detection and referral, and how Know The Glow and WE C Hope are helping to ensure children receive timely, effective care.
When eye cancer is diagnosed early, it may be possible to save a child’s eye or even sight. But tumours and treatments themselves affect vision. Sandra Staffieri, orthoptist and Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, reviews how different retinoblastoma therapies can impact the eye, and how parents can support their child.
Many families tell of delayed pathways to care when their child is diagnosed with eye cancer. Orthoptist and retinoblastoma care coordinator, Sandra Staffieri, and leukocoria awareness advocate, Megan Webber, are frustrated by the repeated stories and their negative patient impacts. They explore why these delays continue, some efforts to overcome the challenges, and where they find hope for the future.
For many survivors of bilateral retinoblastoma, vision changes throughout life. This may be due to treatment late effects, eye health, or other medical events. World Eye Cancer Hope USA President and founding board member, Marissa D. Gonzalez, recounts her journey with vision loss during two different seasons of life, and her difficult course with acquired blindness as an adult after decades of good sight.
Retinoblastoma care is a complex balancing act. Some children receive too little treatment, while others receive more than necessary, with potentially devastating results. Sharing two children’s stories, Rb survivor Abby White explores what under- and over-treatment are, when they may happen, their consequences, and how we can prevent them.
Anyone affected by retinoblastoma can experience survivor guilt – child and adult survivors, siblings, parents, grandparents, and others. WE C Hope CEO and Rb Survivor Abby White concludes this four-part series on Survivor Guilt with 8 practical suggestions to help acknowledge, move through, and heal from the destructive emotions that fuel survivor guilt.
Survivor guilt of some kind is an almost universal experience for individuals affected by retinoblastoma – survivors and siblings of all ages, parents, grandparents, and others. Continuing our four-part series on Survivor Guilt, WE C Hope CEO and Rb Survivor Abby White explores the causes, risk factors, and underlying emotions.
Anyone affected by retinoblastoma can experience survivor guilt – survivors and siblings of all ages, parents, grandparents, partners, and others. WE C Hope CEO and Rb Survivor Abby White continues to explore the many ways in which family members experience survivor guilt, and the potential impacts during treatment and throughout life.
