Just diagnosed

Retinoblastoma – just diagnosed

If your child has just been diagnosed with retinoblastoma, it can be an extremely stressful and frightening time. We are here to support you in any way that we can, and your support worker will chat to you on the ward about how best we can help you.

We have a factsheet called Just Diagnosed, which offers an insight into how other parents felt at the time and how they coped. It’s just one of several factsheets we have for parents – please ask your support worker for the whole pack, which includes information on things like financial help and holidays.

How do I talk to my child about retinoblastoma?

When talking to your child about retinoblastoma, give them clear and honest information. Your instinct may be to protect them but it’s important to tell the truth because misleading them could cause more distress and make them mistrustful.

It can be hard to know when the right time to prepare them for surgery or treatment is. Telling them far in advance can sometimes leave too much room for fantasies of what will or won’t happen, but you need to give them enough time to digest the information and ask questions, which can help to ease their fears and anxieties.

Research suggests that younger children should be prepared for procedures one or two days before coming to hospital and no more than a week in advance. We have a children’s section which contains age-appropriate information about retinoblastoma – have a look and perhaps sit down with your child and go through it together. Your Rb team at the hospital will also be able to help you with this.

Asking questions

Your child might need time to absorb the information and you may find that they suddenly ask you questions some time after you’ve told them what’s going to happen. Let them know that they can ask you questions whenever they like – they should feel involved in the process of their treatment and management.

Children hear and understand more than we think, so be aware of the conversations that you have around them. If they misunderstand something that is said, or overhear parts of a conversation, it can lead to unnecessary anxiety and fear.

Involving siblings

Try to involve any siblings in your child’s treatment. Often brothers and sisters of ill children can feel overshadowed and neglected, so it’s important to listen and spend time with them too.

Encourage their involvement in the process. Their fears will often be heightened when they don’t know what to expect, so involving them can reduce their anxiety. Check with the hospital your child attends for treatment if siblings are allowed to attend appointments. If possible, bring them with you so that they can meet the team and see what happens at the hospital.

Often what they imagine happens is much worse then what actually happens.

Looking after yourself

Finding out your child has retinoblastoma can be extremely overwhelming and all the different options for treatment may also be a lot to take in. You may have family and friends who are waiting for you to let them know how your child’s appointment has gone, what the doctors said to you and what will happen next.

Some parents find it easy and comforting to explain it all to family and want support from them immediately; others need time to digest the information first.

As this is all new to you, we suggest that you tell people what the diagnosis is and what treatments your child needs, and then ask your friends and family to look at our website. This way you won’t need to repeat yourself many times, especially if you find yourself getting upset the more times you tell people.

Some people find keeping a diary helps and a few have started a blog about their child to let their friends and family know how treatment or check-ups have gone. You may find that there are a lot of people who want to know how you’re getting on but also appreciate that you won’t want to speak to everyone just after getting back from hospital. With a blog or even updates on Facebook, people can see how you are doing and let you know that they are thinking of you without the constant calls.

You may find that friends or family really want to help you but they don’t know how to. It can be hard to ask for help or accept the help that has been offered but if you can give people practical things to do it can make it easier. Ideas include:

• Doing a supermarket shop for you
• Looking after your child’s sibling while you’re in hospital
• Picking up siblings from school
• Giving you a lift to hospital appointments

It’s really important to look after yourself so that you have the strength to support your child through this as best as possible. Our support workers are always happy to listen to any concerns or difficulties you’re having and we can put you in contact with other families affected by retinoblastoma too.

You can contact one of our support workers by emailing support@chect.org.uk or calling 020 7377 5578.