In-person contact with other families and survivors affected by childhood eye cancer is life-changing. On November 5th, World Eye Cancer Hope USA hosted 80 retinoblastoma community members for a picnic party in glorious fall sunshine. Marissa D. Gonzalez, bilateral Rb survivor, and President and founding board member of WE C Hope USA, shares highlights from the day of sunshine and smiles.
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.
Medical appointments, procedures, and treatments are potentially stressful for children and their families, at all stages of their retinoblastoma experience. Child life specialist Morgan Livingstone shares 10 simple ways all medical professionals can ease stress and anxiety, support healthy coping, and help children and families thrive throughout simple interactions and complex cancer care.
Every child with retinoblastoma, parent, sibling, survivor, and medical professional has a story to tell of their journey through childhood eye cancer. Understanding our individual and collective experience empowers us to develop and deliver holistic care for all. Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.
Play is the language, university, and business of childhood. Medical play is a key part of child-focused health care, helping young patients learn, reduce fear, and take part in their care. Sophie Goldberg, child life intern and student of Child Life and Pediatric Psychosocial Care, explores what medical play is, and how you can use it to empower your child through their medical experiences.
For many children and their families, eye cancer diagnosis begins a lifetime journey, with many twists and turns through treatment and long after being declared cancer free. World Eye Cancer Hope USA President Marissa D. Gonzalez reflects on three decades being cancer free from retinoblastoma, the journey of a cancer survivor, and the future with her cancerversary fundraiser.
Throughout 2021, our fourth Alphabet of Hope shared top tips for practical action to reduce stress and nurture mind and body. Bilateral Rb Survivor and WE C Hope Volunteer CEO, Abby White, introduces our complete 2021 alphabet, and offers suggestions for creating your own Self-Care Action Plan to help ease stress through difficult moments and tough days.
On 1-3 October, we hosted a hope-filled One Rb World 2021 meeting. Planning and hosting is always an adventure, and the 6th One Rb World was especially so! Co-Chairs, Dr. Sandra Staffieri PhD, Rb Care Co-Ordinator, Royal Children’s Hospital, Melbourne, Australia, and Marissa Gonzalez, Bilateral Rb Survivor and President, World Eye Cancer Hope USA, share behind-the-scenes insight and conference highlights.
As the 6th One Retinoblastoma World Conference fast approaches, this year’s organizers Sandra Staffieri and Marissa Gonzalez, together with Megan Webber, are excited to share an update. They give an overview of the program, highlighting some of the sessions and goals, and the need for global discussion and collaboration involving all stakeholders.
