When a child has retinoblastoma, doctors often need to move quickly to remove the cancer-filled eye.
When both eyes have cancer, the medical team will often need to remove the eye that is most affected.
Often the medical team will want to remove the eye within a few days of the initial diagnosis, to protect the child’s life.
Even in this rapid pace of care, there is always time to prepare yourself and your child – at every age – to support everyone’s coping and wellbeing.
Seek Support for You
Many parents may find this time before enucleation overwhelming. First receiving the news that your child has cancer, then learning that their eye needs to be removed as soon as possible can be difficult to process.
Whenever possible seek out support and assistance in coping with this news. From your partner, family members, the medical team and other parents who have been through the process and understand your feelings.
Even infants Need to Be Prepared
If your child is under 1 year of age, explaining what will be happening to him and his eye may seem inappropriate since he will not fully understand. However, it is important that you give some information about the steps and stages of going in for surgery to have the eye removed.
Use child friendly language, words, actions, play and touch to enhance your child’s understanding and support his coping through these steps.
Choose Words Carefully
For infants and young toddlers it is helpful to use simple statements aloud, and repeat them. Some appropriate statements are:
“Your eye is sick. The doctor(s) are going to remove your sick eye. We will have to stay together/sleep over together at the hospital after the doctor removes your sick eye.”
Be consistent with the language you choose to use about the cancerous eye – you can say sick, poorly, boo boo, cancer – whatever your family decides you want to call it. Always use the same terms when referring to the cancerous eye.
You also need to select a word that you will consistently use about removal of the eye. Some young children may feel that the word TAKE is negative (“The doctor is going to take out your sick eye”), since “take” is often used when someone takes a toy away from them.
You can use the word remove and demonstrate what the word means using a doll or toy. When making these statements aloud, you can also touch the area around the affected eye gently to identify it clearly.
Explain What Will Happen After Surgery
Toddlers need to be clearly told that the sick eye, once removed, will not be returned to them. Explain that the eye is sick and they will not get it back after surgery – it does not work anymore.
Some young children fear mutilation, so be clear that the doctor is not going to do anything but remove the sick eye, and put a large bandage over the area where the sick eye was. Stress that no other part of their face will be touched or affected by removal of their sick eye.
