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.
Our 2022 Alphabet of Hope captured some of the themes most important to families and survivors when considering medical care of the child with retinoblastoma. We have added signposts below to further information with every letter.
We hope you enjoy this video showcasing the complete Alphabet and all the images shared throughout the year. A full text version can be found directly below the video.
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.
M
Multidisciplinary Team provides best care. Co-ordinator, doctors and nurses, imaging, genetics, pathology, ocularist, child life, social work, family and more. Often a multicentre collaborative team; stronger together.
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.
N
Nurses are heroes of children’s cancer care. Positive, helpful, intuitive, and patient; they listen, console, and offer silent hugs or a gentle hand of hope. They are a constant place of safety in the greatest storm.
Further Resources:
From Our Blog: Life as a Registered Mom – 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.
O
Ophthalmologist and Oncologist are equal partners in the best child eye cancer care. Focused together on the whole child first, reducing symptoms, protecting life, and saving sight when safe and possible. Stronger together.
Further Resources:
From Our Blog: Visualizing Cancer Treatment – explore four of the most common eye-saving treatments.
From Our Blog: Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.
P
Prosthetic Eyes are unique works of art, hidden in plain sight. They rebuild hope when an eye is removed to stop cancer spread; help parents consent to life-saving surgery. Ocularists save young lives, spirits, and smiles.
Further Resources:
Living With a Special Eye – There are many ways you can support and empower your child with a special eye, at home, in public and at the ocularist’s office or hospital.
From Our Blog: Driving With Monocular Vision
Q
Qualitative Research has great value. Health care professionals, parents and caregivers, patients and siblings… Subjective worldview shapes our reality; understanding it informs how we care and improve.
Further Resources:
From Our Blog: Ethnography: A New Frontier in Retinoblastoma Research
R
Relapse is common after eye salvage. Frequent eye exams are vital to catch and treat tumour regrowth early. Intense emotions and unspoken fears rise and fall with each EUA – the coaster rolls onward when first treatment ends…
Further Resources:
From Our Blog: EUA Frequency During and After Retinoblastoma Treatment
S
Seeking best outcomes, solid research asks: “Is this treatment more or less effective than current therapies, with more or fewer side effects and risks?” Our questions matter, as professionals, parents, and survivors.
Further Resources:
From Our Blog: Parents and Survivors Can Help Doctors Create Great Retinoblastoma Care
T
“Treatment” includes the modalities used to cure eye cancer or slow its advance, to ease side effects and symptoms, and crucially: how we deliver that care. Treatment experience impacts the rest of the child’s life.
Further Resources:
From Our Blog: 10 Child Life Tips for Clinicians
Child Life – Practical advice to help you support your child with cancer and other children through this experience.
U
Untreated retinoblastoma spreads beyond the eye, dramatically reducing chance of cure. Prompt diagnosis, appropriate cancer treatment, and close follow-up will decrease threat to a child’s life, and light their path to cure.
Further Resources:
From Our Blog: Under-Treatment and Over-Treatment of Retinoblastoma
From Our Blog: Social Media Support: 10 Reasons Why Exchanging Medical Advice can be Unhelpful, and What to do Instead
AND
Social Media Support: 7 Ways to Respond Effectively, and Why Our Responses Matter
V
Visual Impairment is a potential effect of every retinoblastoma treatment, either immediately, soon after, or many years later. Clinicians, survivors, families, please discuss this more, to end stigma, fear, trauma, and ableism.
Further Resources:
From Our Blog: Retinoblastoma Treatment and Vision – The Double-Edged Sword
From Our Blog: Living With Vision Loss: Challenges and Changing Perspectives
W
Worldwide, children and survivors have vastly unequal access to quality Rb care. With support and collaboration, we can overcome the barriers families, survivors and clinicians face, to ensure effective care and reduce burdens.
Further Resources:
From Our Blog: Perfect Vision: Care and Cure for Children with Eye Cancer in Developing Countries
From Our Blog: International Care: Challenges and Opportunities
X
eXpertise and eXperience unites; real-world perspective shared by clinicians, scientists, survivors and families. Learning flows both ways, advancing research and medical care. Together we build a brighter future for everyone.
Further Resources:
From One Retinoblastoma World
Explore the full livestreamed program from the last three meetings:
Y
Yuletide holidays are wondrous to a young child, but they don’t pause for cancer. In clinic, in the procedure room, at the bedside, at home, for the child with sight-loss, we can embrace the festivities to delight young hearts.
Further Resources:
From Our Blog: 10 Ways to Celebrate the Holidays in Hospital
From Our Blog: Celebrating the Holidays with a Child in Treatment
From Our Blog: 12 Ways to Inclusive Festive Fun
From Our Blog: 12 Ways to Have a More Joyful Holiday
Help During the Holidays – Tips for friends and relatives supporting a family affected by retinoblastoma through the Festive season.
Z
Zero Death Cancer is our ultimate goal for all children around the world. With early detection; prompt, appropriate treatment and follow up; and practical family care, all children can grow up beyond retinoblastoma.
Further Resources:
Follow our 2023 Alphabet of Hope, highlighting aspects of #RbResearch that can improve early diagnosis, medical care, family support and lifelong survivorship care.
