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.
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Entries by Abby
Gratitude may be one of the best ways we can support our health and wellbeing. But it’s much more than giving thanks. It isn’t easy when we’re living with cancer and its effects, and used in the wrong way, it can do much harm. In the first of two posts, Rb survivor Abby White explores what gratitude is, what it is not, the benefits, and how we can practice gratitude – even in tough times.
Gratitude is potent self-care. In part 2 of our Gratitude deep-dive, Rb survivor Abby White explores “the gratitude gap” – a big challenge that’s easy to overcome when we know about it. Plus how this knowledge can help children develop gratitude skills early. And 10 varied ways to practice and strengthen gratitude year-round, during the Holidays, and even in hard times.
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.
This summer, patients, survivors and families gathered for the first-ever Midwest Retinoblastoma Family Weekend, just outside Chicago. WE C Hope USA President and Rb survivor, Marissa Gonzalez, reflects on the friendship, support, hope, and fun shared, and the importance of coming together in person as a community. She also gives an update on more events coming soon to other regions across the USA.
Children need a lot of support when they begin or return to school after treatment for cancer. Child Life Specialist and Elementary School Teacher, Meagan Fuller, explores how child life specialists in schools can help children with retinoblastoma adjust to school life, understand their experience, and find healthy ways to talk with peers about their cancer and visual impairment.
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.
Breastfeeding is one of the many decisions parents navigate when their baby or toddler has retinoblastoma. Paediatric nurse and child life specialist, Cindy Pilchuk, explores the benefits and challenges of breastfeeding through treatment, with practical tips for continuing or re-starting breastfeeding, weaning after diagnosis, maintaining milk supply, and comfort supports for both mother and child.