Retinoblastoma and me: age 1-6
Welcome to the part of our website for 1 to 6-year-olds. We hope you like it. This section explains a bit more about retinoblastoma and can be used to help mums and dads, or for children to learn about Rb by themselves.
We have lots of things that you can read about, including a story from another child who had Rb and some books you might like to have at home.
What is Rb or retinoblastoma (ret-in-o-blass-tow-mar)
Retinoblastoma (Rb) is a type of illness called cancer. Cancer can make people unwell in different parts of their bodies. Rb is a kind of cancer that makes your eye unwell.
There are lots of different ways the doctors can help make you better when you have Rb. Ask your mum or dad what the doctors are doing or did to make you better so you can read about your treatment. Find out more about your treatment below.
Chemotherapy (kee-mow-ther-apee) is a type of medicine that will help to make your eye feel better. It is different to the type of medicine mummy or daddy gives you at home, so you will have to go to the hospital to get it.
To help the medicine go straight to your poorly eye the doctors will put a tube in your chest. The tube is called a Hickman line or wiggly and you will have a special sleep when the doctors put it in.
You will need to have the medicine a few times so they will leave the wiggly in until all your medicine is finished.
The medicine can make you feel a bit sick and tired, but it will be helping your poorly eye get better. Sometimes the medicine can make you feel a bit sleepy or grumpy and sometimes it can make your hair fall out, but if this happens your hair will grow back once you stop taking the medicine.
You will need to have an enucleation (ee-new-clee-ay-shun) when your eye is poorly and the only way to make sure that it doesn’t make the rest of you feel sick is to take it out and give you a new eye that isn’t poorly. This will be a pretend eye and won’t be used for seeing.
You will have a special sleep so that you won’t feel the doctor take it out. When you wake up you will have a bandage over your new eye and it might be a bit sore, but you will have some medicine to help make it feel better.
Cryotherapy (cri-yo-ther-apee) works by making the poorly part of your eye really cold.
You will have a special sleep and the doctors will use a special tool that is really thin like a pen. They will put it on the poorly part of your eye to freeze the part that is unwell.
Laser (lay-zer) therapy is a special type of medicine that the doctors give to you while you have your special sleep.
The doctors will use a special machine that shines directly into your eye so that it gets right to the area that needs treatment.
Intra-arterial (in-tra-art-ear-ee-all) chemotherapy (IAC) or Melphalan (IAM) is a special type of chemotherapy medicine.
It is a different type of chemotherapy medicine because it is given while you have your special sleep and you don’t need your wiggly to have it.
While you have your special sleep the doctors will put a special long tube that goes all the way up your body and into your poorly eye. The medicine, called Melphalan, will go right up into the eye to help make it better.
After the medicine reaches your eye the doctors will take the long tube out and you will wake up from your special sleep.
Radiotherapy (ray-dee-oh-ther-apee) is a way to help your eye feel better. You will need to have a special sleep and the doctors will use a very special machine which has an invisible (that means you can’t see it!) ray of medicine that goes into your eye to help make your poorly eye better.
These plaques (plaks) are like small round pieces of material that the doctor will put inside your eye. So that the doctor can get the plaque on your eye you will need to have a special sleep.
When you wake up you will have to stay in your hospital room until the doctor takes the plaque off. You will have an eye patch over your eye so that the medicine stays inside of your eye. When the doctor takes the plaque off you will have another special sleep.
Starting school or nursery
Some children’s eyes don’t work very well after treatment or they may have a magic/special eye now.
When you first start school your mummy or daddy may talk to your teacher about how they can help you in class, to find the best seat for you and make sure you are looked after well. You may have to wear special glasses to look after your eyes when you do PE.
When you start nursery or school your friends may ask you about your special/magic eye. What would you like to tell them about it? Talk to mummy or daddy about what you would like to say and what you are happy for your friends to know.
You don’t have to tell them anything – it can be your secret, but sometimes it is good to know what to say if anyone asks. Here are some suggestions from other children who have a magic/special eye which you might like to try out:
- I have two eyes, but can only see with one.
- I have a magic/special eye that doesn’t see.
- I have two eyes but only one that moves.
Mummy or daddy may find the following section useful too: in school/nursery.
I don’t remember anything about my operation because I was only two but mummy tells me I got lots of teddies at the time.
I like taking my eye out. I like to clean it so that the water makes it go cold. I like it to feel cold when I put it back in.
I didn’t like it when I was little because the feeling I had wasn’t nice. I thought it was going to hurt me.
Then my mummy made me practice eye work lots and then I realised if I didn’t wriggle and jiggle that it wouldn’t hurt me. I just felt a bit scared.
Practicing was fun because I got to play with my special toy dog afterwards that mummy only got out when we did eye work.
After lots of practice I wanted to learn how to do it by myself so it was easier for my mummy. I can now take my eye out, wash it and put it back in. I used to use a mirror but I don’t even use that any more.
I wanted to tell my friends at school because I thought it was important they know in case they poked me in my real eye. I was worried that they might think my real eye was also a magic eye.
So I stood up in front of all the classes in reception year and my teacher helped me tell the children all about my eye. It made my tummy feel funny which mummy said happened because I was nervous but I felt happy afterwards and was glad that everyone knew.
My friends were really interested and I showed them some of my spare eyes and they asked me lots of questions. Everyone was really kind to me.
Here are some books you can read to help you learn about Rb. If you would like to read any of these books, please get in touch with us for more information.
- Treating retinoblastoma: the first eye exam
- Removal of an eye (Enucleation)
- Treating retinoblastoma: chemotherapy
These books have been written by Tara Shea, a qualified Child Life Specialist. They each tell the story of a child who may have been treated by doctors in the same way as you.
- My Special Eye (Tino the cat)
This book has been written by the French Rb charity Retinostop but we have copies written in English for you to read. It tells the story of Tino and Mirabelle who both have special eyes and visit Mr Rainbow who makes them both new eyes.
- My Pretend Eye
Written by the National Artificial Eye Service (NAES), this tells the story of a child who has an artificial eye made and fitted. You might be given one if you visit the NAES but you can ask for one from their helpline on 01253 951131 .