Thank you for taking time to read this section about school life and children with retinoblastoma.
On this page, we highlight several issues that are unique to children with retinoblastoma. We hope these pointers, links within this website and the further reading resources for teachers will be useful.
We encourage you to meet with your student and her parents before she begins or returns to school. This will enable you all to discuss concerns and any medical restrictions, and develop an individual education plan.
Child’s Stress
Children attend hospital regularly during retinoblastoma treatment and follow up care. Some find these visits stressful, particularly receiving eye drops, injections and general anaesthetic (necessary to carefully examine the eye).
Children may “act out” or become unusually quiet in the days before or after the hospital visit. Be alert to this, and talk with the parents about how you can help the child at these times.
Artificial Eyes
Most children diagnosed with retinoblastoma have at least one eye surgically removed to protect their life. After surgery, an artificial eye is fitted. This looks like a big contact lens and is painted to look like a real eye, but it does not allow the child to see. You can read more about enucleation surgery and artificial eyes on this website.
Rarely, the artificial eye may become dislodged, or a very confident child may remove it deliberately for effect. Having a plan in place to deal with this will avoid needless panic and upset for the child, classmates, parents and you.
This plan should be led by the parents and child, who know what works best. Make sure the following are included in the plan, and give a copy to all staff who work with the child.
- Who to contact if the eye comes out (a named parent, carer etc)
- Where you will store the eye if it is not replaced immediately.
- How you will comfort the child if she is distressed.
For 6-10 weeks after surgery, the child will not be able to wear an artificial eye while the surgical wound heals. When the eye is not in place, the socket looks pink and moist, just like the inside of your lip. You can see a picture of this here. In many countries around the world, children do not receive an artificial eye because they are not available or are too expensive.
When your student is not able to wear an artificial eye, she will need a lot of psychological support, sensitivity, understanding and encouragement. We encourage you to read our Child Life section on supporting children who cannot wear an eye.
Explaining to Other Children
Explaining retinoblastoma early often avoids awkward questions from inquisitive children. Talk to the child and her parents about how they would like to handle this. Establish the child’s understanding about what has happened and the explanation she wishes to give if questioned.
Often a simple explanation will suffice for young children. For example, “Daisy’s eye was sick and the doctors had to take it away so she wouldn’t become very poorly.” Reassure children that they cannot “catch” cancer, to prevent fears and misunderstandings.
You may like to consider inviting someone to come and talk with the children, such as the child’s parent, a children’s cancer nurse or a child life specialist.
A range of books have been written specifically for young children about cancer, and its treatment, including the loss of an eye. Reading one of these with your class can help peers understand your pupil’s experience.
Download Preparing for an eye Exam Under Anaesthesia (EUA) as a PDF direct from our website.
Download Preparing for Enucleation Surgery as a PDF direct from our website.
Download My Prosthetic Eye as a PDF direct from our website.
Books produced by other organizations:
- The Extraordinary Eye (written by an Rb mom and teacher, available on Amazon)
- Tino’s Eye (Retinostop)
- My Fake Eye (Institute for Families)
- Joey’s Special Eye from Eye Cancer Foundation
- My Pretend Eye UK National Artificial Eye Service
Second Primary Cancers
Some children who have retinoblastoma are susceptible to other cancers throughout life. These usually occur in the long bones of the arms and legs, around the eye, in soft tissues or muscles, or in the brain.
Any unexplained pain that persists for more than a week should be checked out by the child’s doctor. Please be sensitive to parents’ anxieties over injury or illness, and report any unexplained complaints of pain to the parent.
Teacher Resources
Several excellent resources are available to support teachers of children affected by cancer.
Pupils With Cancer: a guide for teachers and parents
Bette Peterson-Broyd: Head Teacher, Royal Marsden Hospital School.
Parents and teachers may obtain a free copy from the Specialist Schools and Academies Trust.
Educating the Child with Cancer: A Guide for Parents and Teachers
edited by Nancy Keene
Parents and teachers may obtain a copy free of charge from the American Childhood Cancer Association.
