Retinoblastoma
Canada
Special fund at the University Health Network
About WE C Hope
UK
Registered Charity #: 111-11-33
Our Programs
USA
501(c)(3) National Non Profit - EIN: 45-4886827
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Kenya Partner
Kenya Childhood Cancer Trust
Bullying After Retinoblastoma: How to Help Kids Respond With Confidence
/in Child Life, Hope, Living With Rb, Resources, Retinoblastoma, Support, Survivorship, WE C Hope /by AbbyChildren diagnosed with retinoblastoma are especially vulnerable and sensitive to bullying due to treatment effects. Morgan Livingstone CCLS discusses what bullying is and isn’t, how parents can recognize the signs, and help young Rb survivors use stories and develop skills to stand up to bullies with confidence.
6 Ways to Help Older Children and Teens Cope With and Conquer Hospital Anxiety
/in Child Life, Hope, Living With Rb, Medical Care, Resources, Retinoblastoma, Support, Survivorship, WE C Hope /by AbbyMany children and teenagers experience anxiety with medical interactions after retinoblastoma diagnosis. Pediatric registered nurse and child life intern, Michelle Badejo, describes how hospital anxiety can manifest, and explores how parents can help them cope, be active participants in their ongoing care, and raise their quality of life.
When Survivors Grow Up: Family Experiences After Retinoblastoma
/in Awareness, Genetics, Hope, Kenya, Living With Rb, One Rb World, Our Stories, Research, Retinoblastoma, Support, Survivorship, USA, WE C Hope /by AbbyRetinoblastoma is highly curable, but lifelong impacts are significant for survivors, siblings, parents and extended family. After a particularly painful personal insight, Rb survivor and WE C Hope CEO Abby White asked families and survivors about their own experiences of life beyond childhood eye cancer care.
How Do I Create A Family When I Have An RB1 Mutation?
/in Awareness, Genetics, Hope, Living With Rb, Medical Care, Our Stories, Research, Resources, Retinoblastoma, Support, Survivorship, UK, USA, WE C Hope /by AbbyIndividuals who carry an RB1 mutation have a 50% chance of passing the retinoblastoma cancer syndrome on to each child. Melissa Mills, bilateral retinoblastoma survivor and genetic counsellor, explores the psychological and physical impacts of this experience, and the different routes to creating a family when a prospective parent has an RB1 mutation..
A Day Well Spent – California Family Day
/in Awareness, Child Life, Fundraising, Hope, Living With Rb, Medical Care, One Rb World, Our Stories, Retinoblastoma, Support, Survivorship, USA, WE C Hope /by AbbyLocal in-person support specific to the needs of families and survivors affected by retinoblastoma is much needed but very rare. Lisa Hester, mother of a young Rb survivor, reflects on the second WE C Hope California Family Day, held in August 2019, the seeds of our mission to bring this support to all across America.
Reflections of Camp Sunshine by Rb Moms
/in Awareness, Child Life, Fundraising, Hope, Living With Rb, Medical Care, Our Stories, Retinoblastoma, Support, USA, WE C Hope /by AbbyA diagnosis of childhood eye cancer impacts families in so many ways, during the immediate crisis of treatment, and years after “cure”. Knowing you are not alone on the journey is the greatest comfort and strength. Five mothers reflect on the healing power of Camp Sunshine, a retreat that cares for the entire family when cancer strikes.
Mindfulness Tips for Retinoblastoma Families and Supporting Teachers
/in Art For Eyes, Child Life, Hope, Living With Rb, Medical Care, Research, Resources, Retinoblastoma, Support, Survivorship /by AbbyLiving with the daily effects of childhood eye cancer can be overwhelming, for all family members. Both the immediate crisis of diagnosis and treatment, and the long-term impacts and risks. Child Life Intern and Student Teacher, Meagan Fuller, highlights some simple mindfulness techniques parents and children can use to ease daily tension.
TNM Staging System for Retinoblastoma
/in Awareness, Genetics, Hope, Medical Care, One Rb World, Research, Retinoblastoma /by AbbyRetinoblastoma is staged to help doctors describe the extent of cancer in a child’s body, define potential for cure, vision and eye salvage, identify the best treatments, and compare impact of different therapies. Dr. Ashwin Mallipatna explains the TNM Staging System for Retinoblastoma and why it is the best approach for patient care.
Retinoblastoma Survivors’ Perspectives on Long-Term Follow up Care
/in Awareness, Child Life, Genetics, Hope, Living With Rb, Medical Care, One Rb World, Our Stories, Research, Retinoblastoma, Support, Survivorship, UK, USA, WE C Hope /by AbbyMany retinoblastoma survivors live with significant long term treatment impacts and second cancer risks. Yet most children, adult survivors and their families struggle to access appropriate ongoing care. Len Burns, a totally blind bilateral Rb survivor and licensed family therapist, highlights the most common survivor concerns, and potential ways to improve long term care and quality of life.
When ‘Something’ Looks the Same As ‘Nothing’: Strabismus, Leukocoria and Childhood Eye Cancer
/in Awareness, Hope, Living With Rb, Medical Care, One Rb World, Research, Retinoblastoma, Support, WE C Hope /by AbbyStrabismus (turned eye) and leukocoria (white pupil), the most common signs of retinoblastoma, can also occur in healthy eyes. Sandra Staffieri, Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, examines both and answers the key question – when should parents and doctors be concerned?