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Alphabet of Hope: Rewriting the Future of Retinoblastoma Care
Monday January 4, 2021
After a year of publishing the #FamilyInSight Alphabet of Hope, we bring you the complete collection of 2020 Entries. This is the third #AlphabetOfHope. WE C Hope CEO, Abby White looks back at the alphabet’s genesis, and examines the insight, wisdom and motivation this literary project brings to the retinoblastoma community.
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A selection from the three alphabets published to date. From left to right, #AlphabetOfHope (2012/2018), #FamilyInSight (2020), #LifeBeyondRb (2019).
We are delighted to share the complete #FamilyInSight Alphabet of Hope, shared throughout last year. This video weaves together 26 powerful fortnightly insights from parents, survivors, siblings and extended family members affected by retinoblastoma.
Childhood cancer impacts everyone – from the diagnosed child and their immediate relatives to grandparents, aunts, uncles, cousins, close friends and neighbours. Family experiences and perspectives of retinoblastoma vary widely, and our 2020 alphabet captures just a little of the ripple effect created by this monumental diagnosis.
In 2012, for the first One Retinoblastoma World meeting in London, England, we produced a beautiful Alphabet of Hope, with insights and reflections on the word “Hope” from families affected by retinoblastoma around the world. Every two weeks throughout 2018, we shared via social media an entry from the Alphabet, to help raise awareness of different experiences through the retinoblastoma journey.
Perspectives shared through the Alphabet of Hope spoke to people who had no personal experience of childhood eye cancer, to family members, medical professionals and affected individuals with different experiences. The brief insights and observations sparked important conversation, and gave a voice to subjects through viewpoints infrequently discussed.
As our sharing of the Alphabet of Hope drew to a close, we began to think about how different aspects of the retinoblastoma experience could be illuminated through this simple form of expression. And so the #AlphabetOfHope began to evolve.
In 2019, the Alphabet of Hope focused on the many complexities of #LifeBeyondRb. Life beyond the immediate treatment of eye cancer, and recovery from it, receives comparatively little attention. Research has well-documented the genetics of retinoblastoma, heritable and second cancer risk. But this has not yet translated into recognizable care for most survivors. The mental health impacts of early life treatment and retinoblastoma burden have also not been acknowledged or effectively researched.
Words in the 2019 #LifeBeyondRb alphabet highlighted the impacts of childhood cancer and its treatment on the diagnosed child and family, sight loss, emotions, long term implications of genetics and second cancer risk, and ongoing healthcare challenges. The content was developed with the international retinoblastoma survivor community, through collaborative discussion within a large and well established Facebook group, and a smaller working group.
Each insight in the original Alphabet of Hope was inspired by the word HOPE. When promoting the alphabet, we highlighted the four entries beginning with letters H, O, P, and E. They formed an insightful combination and definition of HOPE.
Our charity name, World Eye Cancer Hope, shortens to WE C Hope. So what does WE C Hope mean in the context of the Alphabet? We found that taking the entry for each of these letters from all three alphabets captures our goals well – awareness, medical care, and support for all children, survivors and their families. Huge challenges, but so much hope propelling us all forward.
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In the first three years of our alphabet, two words have been contributed twice (joy and knowledge), while three sets of similar words have appeared (family and friends / family life, memories / memory, and vision / vision loss). In each case, the meaning attributed to individual words differs, highlighting both complexity of the English language and breadth of human experience with retinoblastoma.
If you follow the #AlphabetOfHope closely and see a word you think you have seen in previous alphabet creations, please don’t dismiss it. The entry may share new insight, knowledge or perspective that helps us all think and discuss more deeply, and act more boldly for future progress.
Family and friends / Family life
Memories / Memory
Vision / Vision loss
Five common themes recur across all three alphabets. Below is a small sample.
Medical Care and Psychological Impacts
Aspects of medical care and psychological impacts of retinoblastoma occur most frequently, ranging from diagnosis of infant cancer through lifelong survivor experiences.
Wisdom, Observations, and Wellbeing Tips
All three alphabets are filled with rich observation that so often passes by unnoticed. Deep wisdom shaped by extraordinary lives combines with wellbeing tips that have carried parents and survivors through some of the darkest valleys.
Wisdom and Observations
Lastly, the desire to create change features across the alphabets. The search for meaning in the individual experience of retinoblastoma, to improve care and quality of life for ourselves and others, to be part of the hopeful future we all desire.
An A to Z of Calls to Action
The original Alphabet of Hope opened and closed with a focus on translating experience into positive change. From small daily gestures to united responses, hope thrives on action. Every entry in each Alphabet is a call to action for retinoblastoma care – a hopeful seam of gold to be mined for a healthier future.
We draw from the wealth of experience shared in each Alphabet as we develop our programing, produce online content, and respond to individual families. Every entry motivates us daily in our work for all members of our retinoblastoma community. Thank you for sharing the journey with us.
Introducing our 2021 Alphabet of Hope – #MindAndBody
Our 2021 #AlphabetOfHope launches this week, focusing throughout the year on wellbeing for all affected by retinoblastoma, and all who provide care for families and survivors.
Life with retinoblastoma is tough! All three of our previous alphabets emphasize this very well. 2020 was an unbelievably rough year for the whole world, and remains so while COVID-19 persists. While serving the retinoblastoma community through this global pandemic, the majority of our international WE C Hope team have been, and continue to navigate significant personal challenges. Those of us living with lifelong effects of retinoblastoma are acutely aware of the need for self-care to reduce the risk of overwhelm and burnout, especially when the road is tough.
Our 2021 #AlphabetOfHope is a collection of our top tips to support mental and physical health. Launching on 4th January, each #MindAndBody letter entry will share one practical tip every two weeks. We will add signposts to further reading with every new letter publication on our Alphabet of Hope page.
Please follow the 2021 #AlphabetOfHope!
Look out for the regular Alphabet posts shared on Twitter and our Facebook Page (both @wechope). We’d love to read your feedback and hear your wellbeing tips for each letter. Please join in the conversation on our social media throughout the year.
Search for our posts using the hashtags #AlphabetOfHope and #MindAndBody.
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.