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You are here: Home1 / Retinoblastoma Resource2 / Living With Retinoblastoma3 / Bereavement4 / End Of Life Care
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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End Of Life Care

A parent’s natural instinct is to do the very best to protect their child, in health and in sickness.

You have been worn down by the pain and distress of your child’s battle, but always kept hope of cure alive.

You now know that your time together is limited. You may have few inner resources left, but you must now restructure family life around the knowledge that your beautiful child is dying.

A young boy.

A New Hope

Many families begin to grieve from the day of diagnosis. Even when the child’s chances of cure are very good, cancer forces the possibility of death into stark relief. You may already have been grieving the loss of your child’s eye or shattered dreams.

As your child began treatment, your strong emotions probably settled as hope grew again. Then came relapse, or the slow, gradual realization that treatment could not cure your child.

You may ask where hope has gone as you watch the cancer engulf your previously active, healthy child. Witnessing precious developmental milestones falling away one by one, even mutilation of the personality you love so much.

Yet hope does still exist. Hope is belief in a better tomorrow. Hope gives strength to endure each new trial. Hope is not a way around trauma, but a way through. There is still reason for hope as you share time with your child, enrich one another’s lives and make memories together.

Talking to Siblings

You will need to prepare your children for the death of their brother or sister, help them cope with their emotions and say goodbye. Children may overhear conversations and be very sensitive to the atmosphere and emotions of people around them. Simple honesty is vital to their emotional and physical wellbeing. .

Siblings may be very confused, especially if they had been told their brother or sister would get better. They may feel deceived and very angry. They may believe you have “given up” and insist that you try another treatment.

Your children must have time to share their thoughts and feelings. If you do not have the emotional energy to support them, seek professional help from a child life specialist, hospital social worker, chaplain, nurse or grief support organization.

Caring for Your Dying Child

Whether at home, in hospice or at the hospital, helping to look after your child can be very empowering and reassuring for both of you. Children are often most comforted by their parents helping with personal care such as bathing and toileting, rather than relying on nurses.

Help your child to understand what is happening, and what will happen. Give plenty of reassurance, just as you have always provided support through medical procedures. Help your child to loosen ties with the physical world and say goodbye.

Even very young children are more aware they are dying than they have words to explain. Children often want to give away treasured toys or write to their siblings and friends. Some want to help choose music or plan something special for their funeral.

Though these conversations may be very hard for you, they are important for your child. They will also create special memories of important feelings shared, and will help your child know that you give her permission to let go and find peace.

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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
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        • Regimens and Protocols
        • During Treatment
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        • When to Call the Doctor
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        • Ask the Doctor
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        • When to Call the Doctor
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        • Introduction to Eye Patching
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      • Removing the Central Line
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    • 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
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    • Pain Management
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    • Living With a Special Eye
      • Before Enucleation
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      • The Young Child Living With a Special Eye
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      • When There Is No Eye
    • Psychological Support
      • Reduce Your Stress
      • Infant Massage Training
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      • 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
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      • Post-Traumatic Stress Disorder in Childhood Cancer
  • Living With Retinoblastoma
    • Children
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      • Sibling Responses
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    • Parents
      • Emotional Responses
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      • Relationships
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    • Grandparents
      • Genetic Implications
      • How You Can Help
      • Look After Yourself
    • School Life
      • Effects of Treatment
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      • Prevent Eye Injury
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    • Bereavement
      • End Of Life Care
      • Before the Funeral
      • Acts of Remembrance
      • Parental Grief
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      • Carrying the Torch
    • Focus on Hope
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      • The First Alphabet of Hope
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