The First Alphabet of Hope
In 2012, for the first One Retinoblastoma World meeting in London, we produced a beautiful Alphabet of Hope, with insights and reflections from families affected by retinoblastoma around the world. Every 2 weeks throughout 2018, we shared via social media a word and accompanying thought 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 previous experience of childhood eye cancer, to family members, medical professionals and individuals with different personal experiences. It sparked conversation and gave a voice to subjects 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 benefit from this simple form of expression, and the possibility of beginning a new Alphabet in 2019. And so the Alphabet of Hope began to evolve.
Explore the Previous Alphabets of Hope
The 2022 Alphabet – #RbCare
Retinoblastoma is a complex cancer afftecting very young children, often involving treatment over several years or more, intensive follow up care, and lifelong implications. The diagnosis pathway, the child’s treatment, how it is delivered, and care for the entire family, has a huge impact on their experience of the cancer, wellbeing during and after medical care, and medical experiences long into adulthood.
This year’s Alphabet of Hope captures some of the themes most important to families and survivors when considering medical care of the child with retinoblastoma.
Please follow this year’s #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 experiences of #RbCare as we share each letter – whether you are a parent, survivor, or medical professional. Please join in the conversation on our social media throughout the year.
- Search for our posts using the hashtags #AlphabetOfHope and #RbCare.
- Visit this page for all published letters and signposts to further resources on our website. You can navigate to the page quickly at wechope.org/alphabetofhope
The Current Letter
#RbCare Alphabet of Hope 2022
Complete Text and Resources to Date
A
Awareness of turned eye and white pupil glow is key to early detection of retinoblastoma. Children have the best chance for sight-saving care, with least threat to their life, when tumours are small.
Further Resources:
Know The Glow – learn all about white pupil and retinoblastoma, and what to do if you are concerned.
From Our Blog: When ‘Something’ Looks the Same As ‘Nothing’: Strabismus, Leukocoria and Childhood Eye Cancer
B
Babies and toddlers develop eye cancer, but they can’t tell you how their sight is changing. Parents see important signs in a child’s eyes, and in their behaviour. Listen to their concerns to aid early diagnosis.
Further Resources:
From Our Blog: Eye of the Storm: the impact of ‘not knowing’ on mental health
C
Circle Of Care includes parents and caregivers, from before diagnosis, through every stage of treatment and beyond. Clinicians draw on parent knowledge of their child for best care. Parents advocate, and support healthy coping.
Further Resources:
A Therapeutic Alliance: A positive, open relationship between parents and the medical team is vital to ensure both child and family receives the best possible care.
From Our Blog: DePICT the Cancer Care Journey, Overcome Rarity Through Collaborative Research
D
Diagnosis changes a family’s world. Yesterday’s life is turned upside down; plans are frozen, hopes and dreams for child and parents are questioned. Share true hope that honours all emotions, gives real comfort and strength.
Further Resources:
Diagnosis and Staging: This is probably the most stressful time of your child’s cancer journey. Understanding the process can help make things a little easier.
From Our Blog: TNM Staging System for Retinoblastoma
From Our Blog: Talking About Your Child’s Cancer Diagnosis With Family and Friends
E
Everyone does better with child life supports during medical procedures. Clinicians are safer, while children and parents are less stressed and more engaged. Procedure are often faster and need fewer people, saving money too.
From our blog: Your Child is Not Misbehaving: How Stress Affects Behaviour
More than Play: Using play, preparation, education and self-expression activities, Child life helps children of all ages cope with medical experiences and traumatic life events..
F
Family Support helps parents and children cope better within and beyond this cancer world. Connect families to support at diagnosis, assist and encourage social connection through Rb groups. No one should travel this path alone.
Further Resources:
From Our Blog: How to Support Siblings Receiving Retinoblastoma Screening
From our Blog: , How to Support Siblings of Children with Retinoblastoma
Living with Retinoblastoma: Practical advice to help you live well, emotionally and physically, despite retinoblastoma.
Family & Friends: Guidance for relatives and friends to help you give encouragement
G
Genetic Counselling impacts retinoblastoma care, for the diagnosed child, and for siblings. Wherever possible, please include genetic testing early in care, so personalised knowledge can inform treatment and screening plans.
Further Resources:
Retinoblastoma Genetics: Retinoblastoma is caused by errors on the RB1 gene or MYCN gene. They may be inherited or occur spontaneously during early foetal development, or after birth.
From Our Blog: How DNA and Genetic Knowledge Changes Lives: the impact of genetic testing for five families affected by retinoblastoma
From Our Blog: Familial Retinoblastoma Screening: When Eye Cancer Runs in the Family
H
Hope sustains; it is a way through the trauma of cancer. But false hope expects unrealistic events, obstructs good choices, and harms body, heart, and mind. Encourage true hope with facts, compassion, and love.
Further Resources:
Psychosocial Support: Children are amazingly resilient. But they do need lots of support in dealing with treatment or life after retinoblastoma. There is much you can do to help your child – and you – cope and thrive.
Focus on Hope: True hope is what helps us survive trauma. Though it means different things to different people, encouraging hope every day is very important for the wellbeing of everyone in your family.
From Our Blog: No Pain = Gain: How to Manage your Child’s Pain During Uncomfortable Experiences
From Our Blog: Why Joy is a Superpower and How to Nurture Daily Joy – Even in Tough Times
From Our Blog: Who Cares? Becoming Your Best Friend with Compassion, Care and Love
From Our Blog: Child Life Programs: Play With Purpose at Retinoblastoma Gatherings
I
Informed Consent needs open discussion, questions, and clear, honest answers. Parents need full knowledge of all possible risks and benefits to make the best decisions, with greatest peace, for their child and family.
Further Resources:
Informed Consent: Before a procedure, you will be asked to sign a consent form, giving permission for it to be done. Informed consent means you clearly understand about the procedure when you sign the form.
Understand shared decision making and informed consent: Step 4 in our 12-Setp Treatment Decision Making Guide. You have a right to make decisions about your child’s medical care, guided by the advice of health professionals. You also have a responsibility to ensure you fully understand the treatment options so you can evaluate their benefits and risks before making an informed decision.
From Our Blog: The Informed Parent – 6 Tips for Staying Up to Date in a Social Media World
J
Jungle of info lives on the web, from accurate facts and valuable personal insight to confused, incorrect, and incomplete stories, and biased opinion. Carefully assess what you find; and always talk with your care team.
Further Resources:
Clinical Trials: Clinical trials systematically test treatments to help medical professionals provide the most effective therapies with minimum side effects
From Our Blog: DIY Guide to Assess Medical Information and Research – a 2-part series.
From Our Blog: 12 Step Treatment Decision Making Guide: Includes sections on Understanding Rb, Evaluating Treatment Options, and more.
K
Killer childhood eye cancer strikes when it can. Safe treatment depends on multiple factors to protect a child’s unique, precious life: cancer stage, one or both eyes, risk to life, potential for sight, access to care…
Further Resources:
From Our Blog: 12 Step Treatment Decision Making Guide: Includes sections on balanced decision making, values and goals, understanding Rb, evaluating treatment options, reviewing decisions, and more.
From Our Blog: Always Life Before Eye – So Why Are Curable Children Dying?
L
Lived Experience shapes and reshapes our lives. Personal knowledge and insight, feelings, empathy – sharing together builds community, influences how we care, encourages hope, and changes the future.
Further Resources:
From Our Blog: 10 Things Parents Want You to Know About Retinoblastoma
From Our Blog: 10 Things Retinoblastoma Survivors Want You To Know
From Our Blog: 4 Reasons Survivors and Families May Not Participate in Retinoblastoma Research, and Ways to Improve Engagement.
