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You are here: Home1 / Retinoblastoma Resource2 / Living With Retinoblastoma
A child life specialist uses a toy cat with removable eye to help a young girl receiving chemotherapy cope with eye removal and artificial eyes.

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Living With Retinoblastoma

Children launch candle-bearing wish boats on the Wish Pond at Camp Sunshine.

Healing With Love, Knowledge, Understanding and Hope.

Raising children can be challenging at the best of times. The stress of a child’s life-threatening illness places increased pressure and demands on parenting skills and the familiar rhythm of family life.

Childhood cancer complicates family life on all levels, and your previous way of life may be almost unrecognizable within a short time. This can be a bewildering experience, drenched in overwhelming emotions. Now more important than ever, your communication skills and inner strength will be tested to their limits.

The needs of your child with cancer may change rapidly, as may your own needs and those of your partner, other children and their grandparents. You will all need to be flexible, understanding and patient with each other, and kind to yourselves.

Life continues in spite of cancer. Milestones of the first day at nursery or school can be hugely uplifting and hopeful experiences. With appropriate support, children can excel in school and achieve great things throughout their lives.

The death of a child is one of the greatest challenges a parent or sibling will face. The depths of pain experienced break the confines of language. For a time, family life is frozen by the passing of one so loved. Grief is immensely personal. Each person will find their own way through it, to a calmer understanding and a different kind of hope for the future.

Most children with retinoblastoma in the developed world are cured today. However, even after cure, the ghost of cancer walks with many survivors throughout life. Emotions, impaired vision and other effects of treatment, life-long second cancer risk and adapting to meet the challenges of the world can be hard. But life after retinoblastoma can also be richly blessed and full of living, with knowledge, understanding and the right support.

Believing in a better tomorrow is vital throughout the cancer journey. Hope is not a way around cancer, but a way through it, motivating, encouraging and sustaining us in difficult times.


Children

Children can be overwhelmed by intense emotion. They have fewer coping skills than adults, and need extra support to help them through traumatic experience.


Parents

Parents describe the experience of their child’s cancer as like riding a terrifying roller coaster, with no ability to see the way ahead and no emergency stop cord. Knowing how to look after yourself during this time is very important.


Grandparents

Grandparents experience deep emotions in response to retinoblastoma. Often these are complicated by genetic implications of their grandchild’s cancer.


School

Retinoblastoma and its treatment can disrupt educational, social and cognitive development, but children can still thrive in school with positive support.


Eye Care

As well as taking your child to regular ophthalmology appointments, you can help protect your child’s sight by encouraging her to live healthily and stay safe.


End of Life and Beyond

We grieve because we love. Even when anticipated, losing a child to retinoblastoma is an agony almost beyond bearing. Healing requires courage, time and understanding.


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.

Give life and sight to a child with eye cancer today

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  • Retinoblastoma Overview
    • How the Eye Works
    • Retinoblastoma Biology
    • Unilateral Retinoblastoma
    • Bilateral Retinoblastoma
    • Extraocular Retinoblastoma
    • Trilateral Retinoblastoma
    • Genetics of Retinoblastoma
    • Global Incidence
    • Signs and Symptoms
    • Referral and Diagnosis
    • Treatments
    • Care After Treatment
    • Prognosis
    • Retinoblastoma Glossary
  • Know the Glow
    • Fundal (Red Eye) Reflex and Red-Eye Reduction
    • White Eye Reflex
    • Photo Challenge
    • White Eye and Rb
    • White Eye after Rb Diagnosis
    • White Eye and Adults
    • PhotoRED Technique
    • Next Steps
    • Examining the Fundal / Red Reflex
  • Medical Care
    • Questions to Ask the Medical Team and Yourself
    • Diagnosis and Staging
      • Staging Systems
      • Multidisciplinary Team and Tumour Board
      • Treatment Plan and Care Pathway
      • Hospital Packing Tips
    • Retinoblastoma Genetics
      • Rb Genetics Explained
      • Mosaic Mutations
      • MYCNA Retinoblastoma
      • Genetic Counseling
      • Genetic Testing
      • Genetic Test Results
      • Pre-implantation Genetic Diagnosis (PGD)
      • Genetics Glossary
    • A Therapeutic Alliance
      • Your Child’s Doctors
      • Good Communication
      • Resolving Conflict
      • Second Opinions
      • Changing Doctors
      • Medical Staff
    • Medical Procedures
      • Informed Consent
      • Procedure Pain
      • Blood Draw
      • Bone Marrow Aspiration
      • Bone Scan
      • Chest X-ray
      • CT Scan
      • Echocardiogram
      • EUA
      • Eye Pressure Test
      • General Anaesthetic
      • Hearing Tests
      • Inserting an IV
      • Intrathecal Injection
      • Lumbar Puncture
      • MRI Scan
      • Radionuclide GFR
      • Subcutaneous Injection
      • Taking a Temperature
      • Transfusion
      • Ultrasound of the Eye
      • Vision Testing
      • Vision Testing – Support Your Child
      • Vision Testing – Just For Kids!
    • Treatment
      • Risk of Under-Treatment and Over-Treatment
        • Reduce Risk of Under-Treatment and Over-Treatment
      • Treatment Decision Making Guide
        • Step 1 – Acknowledge Your Thoughts and Feelings
        • Step 2 – Understand Your Decision-Making Style
        • Step 3 – Find Your Expert Team
        • Step 4 – Understand Shared Decision Making and Informed Consent
        • Step 5 – Set an Intention to Make Balanced Decisions
        • Step 6 – Learn About Retinoblastoma
        • Step 7 – Evaluate Your Options
        • Step 8 – Consider Your Values and Goals
        • Step 9 – Manage Disagreement and Conflict
        • Step 10 – Make Your Decision
        • Step 11 – Review Your Decision
        • Step 12 – Support Your Child and Yourself
        • Review the 12 Decision Making Steps
      • Enucleation
        • Making the Decision
        • Eye Removal Surgery
        • Orbital Implants
        • Types of Orbital Implant
        • Side Effects
        • Pathology
        • After Surgery
        • Coping with Other People
        • Artificial Eyes
        • Artificial Eye Care
      • Focal Therapy
        • Laser
        • Cryotherapy
        • Periocular Chemotherapy
        • Intravitreal Chemotherapy
      • Chemotherapy
        • Chemotherapy for Rb
        • Intra-Arterial Chemotherapy
        • Regimens and Protocols
        • During Treatment
        • Central Venous Catheter
        • CVC Care and Risks
        • Blood Test Results
        • When to Call the Doctor
      • Radiation Therapy
        • Radioactive Plaque
        • Coping With Isolation
        • Radiotherapy
        • Radiotherapy Planning
        • Treatment Process
        • EBRT Side Effects
        • Ask the Doctor
      • Transplant
        • Types of Transplant
        • Transplant Process
        • Coping With Transplant
        • Complications
        • Long-term side effects
        • Ask the Doctor
      • Side Effects
        • Low Blood Counts
        • Pneumonia and Chickenpox
        • Protect Your Neutropaenic Child
        • Pets and Infection Risk
        • Fatigue
        • Pain
        • Hair Loss
        • Nausea and Vomiting
        • Taste Changes
        • Oral Care
        • Skin and Nails
        • Diarrhoea
        • Constipation
        • Bed Wetting
        • When to Call the Doctor
      • Occlusion Therapy (Eye Patching)
        • Introduction to Eye Patching
        • Preparing to Patch
        • Support Your Patching Child
        • Eye Patching – Just For Kids!
    • Clinical Research
      • Clinical Research Introduction
      • Clinical Research Phases
      • Protocol Document
      • Monitoring and Safety
      • Rb Clinical Research
      • Informed Consent
      • Ask the Investigator
      • Ethnography Research
      • Patient-Led Research – A New Approach
      • Patient-Led Research – Challenges and Development
    • Surviving Hospital
      • Advocate for Your Child
      • Packing for Hospital
      • Hospital Life
      • Your Child’s Space
      • Record Keeping
      • Recreation
    • International Care
      • Contacting Doctors
      • Finances and Fundraising
      • Travel and Housing
      • Questions to Ask
    • End of Treatment
      • Celebration
      • Follow Up Care
      • Follow Up Schedule
      • Life-Long Follow Up
      • Removing the Central Line
      • A New Normal
      • Relapse
      • Second Primary Cancers
      • Symptoms of Second Primary Cancers
      • Ask the Doctors
    • End of Life Care
      • Changing Treatment Goals
      • Palliative Care
  • Child Life
    • Child Life is More Than Play
      • The Art of Child Life
    • Procedure Support
      • Stay Calm
      • Make a Plan
      • Medical Play
      • Distraction Play
      • Comfort Positions
      • Giving Eye Drops
      • Support for Needle Procedures
      • Anaesthetic Induction
      • Preparing for Surgery
      • Preparing for Enucleation
      • Imaging Scans
      • HandWashing for Kids
      • Reduce Face Touching
    • Pain Management
      • Know the Signs of Pain
      • Manage Pain
      • Mind-Body Strategies
    • Living With a Special Eye
      • Before Enucleation
      • Going to the Ocularist
      • Making an Artificial Eye
      • Handling the Special Eye
      • Keeping the Eye in Place
      • The Young Child Living With a Special Eye
      • The Older Child Living With a Special Eye
      • When There Is No Eye
    • Psychological Support
      • Reduce Your Stress
      • Infant Massage Training
      • Talking With Kids About Vision Loss
      • Talking About Vision Loss – For Kids!
      • Support and Encourage
      • Coping With Difference
      • Worry Eaters Guide
      • Personal Story Books
      • Youth Retinoblastoma Support at Upopolis
      • Camp Sunshine Rb Week
      • Activities for Isolating With Children
      • Post-Traumatic Stress Disorder in Childhood Cancer
  • Living With Retinoblastoma
    • Children
      • Children Learn From You
      • Sibling Responses
      • Support Siblings
      • Communicate
      • Reduce Stress
      • Tantrums
      • Discipline
    • Parents
      • Emotional Responses
      • Manage Anger
      • Depression and PTSD
      • Look After Yourself
      • Relationships
      • Sharing the News
      • Update People
      • Seek and Accept Help
    • Grandparents
      • Genetic Implications
      • How You Can Help
      • Look After Yourself
    • School Life
      • Effects of Treatment
      • Preparing For School
      • School Activities
      • Artificial Eye Care
      • Infection Control
      • Older Children
      • Advice for Teachers
    • Eye Care
      • Prevent Eye Injury
      • First Aid for the Eyes
      • Nutrition for the Eyes
    • Bereavement
      • End Of Life Care
      • Before the Funeral
      • Acts of Remembrance
      • Parental Grief
      • Sibling Grief
      • Carrying the Torch
    • Focus on Hope
      • False Hope
      • Encourage Hope
      • The First Alphabet of Hope
      • Alphabet of Hope 2018
      • Alphabet of Hope 2019 – #LifeBeyondRb
      • Alphabet of Hope 2020 – #FamilyInSight
      • Alphabet of Hope 2021 – #MindAndBody
      • Alphabet of Hope 2022 – #RbCare
      • Alphabet of Hope 2023 – #RbResearch
      • Alphabet of Hope 2024 – #RbEarlyDiagnosis
      • Alphabet of Hope 2025-2026 – #RbChildLife
  • Family and Friends
    • Practical Support
    • Emotional Support
    • Financial Support
    • Giving Gifts
    • Help From Young Friends
    • Words That Help
    • Words That Harm
    • Help During the Holidays
  • Through Our Eyes
    • RAE of Hope
    • Unilateral Rb
      • John (Kenya)
      • Rati (Botswana)
      • Connor (Canada)
      • Ewan (England)
      • Rowan (USA)
      • Bisrat S (Ethiopia)
      • Alexa (Ireland)
      • Linda (Kenya)
      • Lele (China)
      • Katelyn (USA)
      • Jordan (USA)
      • Danielle (Canada)
      • Bright (Cameroon)
    • Bilateral Rb
      • Daisy (UK)
      • Aidan (Canada)
      • Libby and Ella (USA)
      • Angie, Kieran and Cameron (UK)
      • Bisrat E (Ethiopia)
      • Abby (USA)
      • Brady (USA)
      • Sera (Fiji)
      • Katy and Harry (UK)
      • Hope (South Africa)
      • Ross Richard (USA)
      • Bella (Philippines)
      • Peter (Kenya)
      • Jaymee (Australia)
      • Ella Nina (Burundi)
      • Ernest (Kenya)
    • Extraocular Rb
      • Rati (Botswana)
      • Ross Richard (USA)
      • Bella (Philippines)
      • Sera (Fiji)
      • Ella Nina (Burundi)
      • Ernest (Kenya)
      • Bright (Cameroon)
    • Trilateral Rb
      • Libby and Ella (USA)
  • Other Organizations
    • Rb Communities on Social Media
    • Retinoblastoma Organizations
    • Childhood Cancer
    • General Cancer Support
    • Emotional Support
    • Financial Support
    • Transport Providers
    • Hospital Housing
    • Support for Children
    • Support for Siblings
    • Support for Survivors
    • Cancer Camps
    • Wish Granting
    • Disability Support
    • Bereavement Support
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