Managing your child's leukaemia treatment

The hospital team will look after your wellbeing as a family as well as treating your child for leukaemia. Don’t be afraid to ask them questions and discuss any concerns you have.

Our Support Service is also on hand to offer practical and emotional support when you need it.

Your hospital should give you the names and contact details of their consultant, clinical nurse specialist (CNS) and other members of their team.

It's a good idea to write them down. You can then contact the team if you have any questions or concerns when you’re not at the hospital.

At diagnosis and in the first stages of treatment, children with leukaemia will be admitted to a hospital that specialises in caring for children with cancer. Later on, and depending on your child’s type of leukaemia, it may be safe for them to have their treatment and tests at a local hospital.

This is known as shared care. The specialist centre will still be responsible for your child’s overall treatment and will see your child regularly.

If your child is a teenager aged 16 to 18, they should be seen in a specialist centre for teenagers and young adults – a TYA centre. If they are aged 19 to 24, they should have the choice between treatment at a TYA centre or at a local hospital that’s approved to treat young adults.

Having a child diagnosed with leukaemia can be an emotional time and there’ll be a lot to take in. Things can happen very quickly, and you’ll have important decisions to make.

It’s worth taking some time to think about what information you want, when you want it, and how you want to get (for example, face-to-face, in print or online). For some parents and carers, this helps them to feel a bit more in control over what’s happening.

• Let your child’s consultant and clinical nurse specialist know how much information you’d like and in what form. You can always ask for more information later.
• Write down any questions you have for your healthcare team and keep them handy for when you see your child’s consultant or clinical nurse specialist. If they can’t answer your questions, they’ll be able to tell you who to speak to.
• You might prefer to talk to your child’s clinical nurse specialist rather than the consultant – it’s OK to do whatever feels right for you.
• Some parents find it useful taking someone with them to appointments. It can be helpful to ask them to take notes while you listen to what the healthcare team says. It doesn’t have to be a family member – it’s your choice who to take.
• If you’re staying in hospital with your child, you may not have a specific time booked to see your child’s consultant. Ask in advance what time the consultant is likely to speak to you, so you can try to arrange for someone to join you.

Some people find it useful to write down the questions they want to ask so they don’t forget when they get to an appointment. Here are some questions you might like to ask at different times.

Many parents and carers say that keeping in touch with loved ones during their child’s cancer treatment keeps them going. Others find it stressful discussing their child’s condition again and again with friends and family.

You might find it easier to ask a trusted family member or friend to keep people updated on your behalf. Another idea is setting up a blog or Facebook page, so you or someone else can post information for everyone to read.

You or your child might not want to tell many people outside the immediate family about your child’s condition. That's is OK too. It’s entirely up to you.

Talking to your child’s brothers and sisters about cancer can be a difficult thing to do. Sometimes, the medical team, social workers or play specialists at the hospital can help. There are organisations that provide support and advice about how to explain things to children of different ages.

Young Lives Versus Cancer has information for brothers and sisters and the Children’s Cancer and Leukaemia Group has information and resources for parents to support siblings of a child with cancer.

Telling your child’s school can also be difficult, but it’s important to let them know what’s happening. Your hospital team can help you liaise with the school and keep them informed.

The hospital team will write to your GP to keep them informed about your child’s condition and any treatment they’re having.

As the parent or carer, you’ll often be sent a copy of these letters too. They may contain unfamiliar medical terms, or there might be something in them which worries you. If that happens, talk to the team at the hospital or your GP – a quick chat might help to reassure you.