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.
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.
Familial retinoblastoma affects more than one member of the same family. Diagnosing children early provides the best opportunities for life and sight-saving care. Alison Skalet, ocular oncologist and director of the Rb service at Casey Eye Institute, Oregon Health & Science University, explores opportunities for early diagnosis when a parent, sibling or other relative has already been diagnosed.
Just 3 paediatric oncologists serve Ghana’s population of 29 million, but this dedicated team leads one of the best childhood cancer programs in West Africa. Dr. Vera Essuman (paediatric ophthalmologist) and Prof. Lorna Renner (paediatric oncologist) discuss retinoblastoma in Ghana and the development of care for children with eye cancer across the country.
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.
Vision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explores the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.
Intra-arterial chemotherapy (IAC) offers potential to save eyes and sight in children with retinoblastoma, when life is not at risk. Through the FAQ of this treatment, Sameh Soliman, MD reviews its goals, indications for use, benefits, risks and limitations, and offers resources for further reading.
Progress of eye-saving treatments for retinoblastoma is very exciting, but an increasing number of curable children are developing metastatic relapse and dying after eye-salvage therapy. With parent experiences woven throughout, Retinoblastoma survivor Abby White, asks why this is happening and what can be done to prevent it.
A diagnosis of childhood cancer can leave parents feeling adrift and utterly alone. The friends who walk with them through their child’s medical care are often cherished lifelong, and from a central thread in their own healing. Megan Santos reflects on the many friendships formed before, during and after her daughter’s treatment for retinoblastoma.
On Saturday 12 May, International Nurses Day celebrates the incredible life-saving, life-changing work of nurses around the world. Janine Patterson shares the uncommon experience, benefit and burden of being a nurse when your child is diagnosed with cancer, and important things she has learned along the way.