Retinoblastoma and me

Chemotherapy

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, daddy or guardian 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.

Enucleation

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

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

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 chemotherapy

Intra-arterial (in-tra-art-ear-ee-all) chemotherapy (IAC) 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, 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.

Intravitreal chemotherapy

Intravitreal (in-tra-vi-tree-all) chemotherapy (IVC) is a special type of chemotherapy medicine.

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 the medicine in your eye to help make it better.

Radioactive plaque

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.

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, daddy or guardian 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, daddy or guardian 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.