Many 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.
Local 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.
A 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.
Living 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.
Many 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.
On March 10, 2019, our beloved child life specialist Jayne Kamau died aboard Ethiopian Airlines flight ET302 as she returned home from SIOPAfrica in Cairo. WE C Hope Child Life Director, Morgan Livingstone, reflects on more than a decade of mentoring, friendship and working together to advance child life in Kenya. Co-authored with WE C Hope CEO, Abby White.
Examinations Under Anaesthetic (EUA) are an essential part of retinoblastoma diagnosis, treatment, and surveillance follow up care. Combining content from our Child Life Resource, Morgan Livingstone CCLS CIMI MA reviews 10 ways parents can support children of all ages through the experience to benefit everyone’s wellbeing.
Talking about a child’s cancer with family and friends can be deeply cathartic for parents one day, and utterly exhausting the next. Asking for and receiving help can be a minefield too. Morgan Livingstone CCLS explores why this is so, and offers tips and tools to reduce stress, improve coping and boost effective practical support.
For many individuals diagnosed with retinoblastoma, sight-loss means braille is the primary means of reading and writing. In celebration of World Braille Day on Friday January 4th, Rb survivor Ffion Miles introduces us to a very special relationship she has with six tiny dots, and the marvellous adventures they’ve shared together.
The WE C Hope blog has been busy in 2018. We’ve shared 24 posts from 17 authors – parents, survivors, researchers or professionals providing retinoblastoma-related care. Each has brought valuable experience, knowledge and perspective, and we are very thankful to them all. Here is a recap of posts we’ve shared in the past 12 months.