Looking after a child with leukaemia

Your healthcare team will give you specific advice on how to look after a child with leukaemia and will be able to refer you to other professionals or services if you or your child need them.

Our Support Service is also here to give you emotional support and advice on where to get help.

If your child is back at home between treatments or after their last treatment, you need to watch out for changes in their health.

Contact your healthcare team at the hospital straight away if you notice any new symptoms. Don’t wait for your next check-up. Symptoms of infection include:

• a high temperature (38°C or above)
• a cough or sore throat
• confused or restless behaviour, especially if this comes on suddenly
• quickly becoming more ill
• a fast heartbeat and rapid breathing
• difficulty weeing or not weeing at all
• suddenly increasing pain.

We have more information about managing the risk of infection.

When your child is being treated, and for a while afterwards, their immune system will be low. This means it’s harder than usual for them to fight off infections. Measles, chickenpox and shingles can be dangerous to anyone with low immunity because of cancer treatment, so it’s important to try to avoid coming into contact with these infections.

Your healthcare team will give you advice about this and a letter will be sent to your child’s school or playgroup to explain the situation if needed.

Your child’s specialist nurse will advise you about warning signs and what to do if your child becomes ill.

You’ll be given a plan for when your child should get boosters of childhood vaccinations. This will usually be around six months after the end of chemotherapy, when their immune system has had a chance to recover. Your healthcare team will let you know when it’s the right time.

Always check in with your child’s specialist nurse if you’ve got any questions around vaccinations, as there are some vaccines that children shouldn’t have until a certain time after leukaemia treatment.

It’s important to look after your child’s general physical and emotional health during and after their treatment for leukaemia – and your own too.

You may find that your child is often very tired. This is called fatigue and it might be caused by their illness or the treatment.

If you think your child is being affected by fatigue, ask their consultant or specialist nurse for advice on the best way to deal with it.

It’s worth encouraging your child to be as active as they can, because there’s evidence that this could help to make the fatigue less severe. But they’ll need to stop and rest more often than before their illness.

When your child is in hospital, a dietitian will make sure they get the nutrition they need. At home, follow general advice on healthy eating from your hospital or GP.

It’s also important to avoid food poisoning, so be particularly careful about following basic food hygiene rules such as paying attention to use-by dates and keeping cooked and raw meat separate in the fridge.

When it comes to managing the emotional effects of your child’s leukaemia diagnosis, friends and family can be a great source of support.

In the longer term, it might be hard for them to appreciate the emotional impact on you and your child.

Your healthcare team should discuss your child’s emotional, spiritual, social, practical and physical needs with you and talk about how they can be met. This is called a holistic needs assessment. It should happen a few times throughout the course of your child’s treatment and afterwards, as their needs might change.

You may want to consider seeing a counsellor or psychologist yourself to give you some support through your child’s treatment. Some parents say they have found it helpful having someone to talk to who isn’t emotionally involved with their child.

We have information about looking after yourself when you're caring for someone with blood cancer.

Some people find joining a support group is helpful. Or you could ask your consultant or clinical nurse specialist if you can talk to another parent or carer whose child has had the same diagnosis as yours. It may be easier to talk to someone outside your family about your child’s illness and being able to share similar experiences might help you.

Bear in mind that someone else’s experiences won’t be the same as yours. For example, some children have side effects from a particular drug and other don’t.

The Blood Cancer UK online community forum is open to all. Just following other people's conversations can be helpful - you don't have to join in if you don't want to.

Your own work, education or home life may be affected by your child’s illness. So you may want to tell your employer or college what’s happening.

You might need to make a short-term arrangement with your employer or college, so you can have time off to stay with your child when they’re in hospital. They may ask for written proof of your child’s diagnosis, which you can get from your GP or hospital team.

If you have other children or if you’re caring for someone else, think about having plans in place in case something unexpected happens. For example, your child may have unplanned stays in hospital because of an infection.

Under UK law, cancer is considered a disability. This means employers and places of study can’t discriminate against people with cancer, and this can also apply to a carer or parent of a child with cancer. So if you tell your employer or place of study about your situation, they may have to make what’s called reasonable adjustments, such as allowing you time off for hospital appointments.

Children’s hospitals and specialist units for teenagers and young adults will often have a hospital school or teaching staff to carry on your child’s education while they’re staying in hospital. The teachers will work very closely with your child’s school to make sure they keep up to date. They’ll also encourage your child to keep in contact with their classmates.

Attending a hospital school will give your child a chance to mix with other children. The hospital team works very closely with the teaching staff to make sure that your child isn’t at risk from infection. This may mean there are times when your child isn’t able to join in with other children.

Most children and young adults are treated in specialist cancer centres as inpatients, meaning they have overnight stays in hospital.

You may be able to claim your transport costs from the hospital. Speak to your child’s hospital team or a benefits advisor to find out more.

There are lots of places you can get help and advice if you’re worried about money.

Your hospital will normally have social workers or welfare rights (benefits) advisors who can advise you which benefits to apply for. This might be especially useful if you’re on a low income or are unemployed. Ask to speak to an advisor as soon as possible after your child’s diagnosis. Alternatively, your hospital may be able to arrange for an advisor from somewhere else to visit you.