Living with childhood leukaemia

Updated 10 Aug 2017

Being told your child has leukaemia is likely to be extremely upsetting and there’s a lot of support you – and those close to you – might need at various stages.

As well as medical information about your child’s condition, other information will be important – such as advice and support on telling people, looking after you and your family’s emotional needs and your child’s physical needs, and practical advice about things like finances.

Finding out more

After your child has been diagnosed, it’s worth taking some time to think about what information you want to know, when and how. It 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 time to think about what information you need, when you need it, and what kind of format works for you. For some parents, this helps them to feel slightly 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 and keep them handy for when you see your child’s consultant or key worker. 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 your consultant. Do whatever works for you.
  • Some parents find it useful taking someone with them to consultations. If you’d find it helpful, you could ask them to take notes while you listen. You can choose who to take; it doesn’t have to be a family member.
  • If you’re staying in hospital with your child, it might be harder to arrange to have someone with you when you speak to 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 joining a support group is helpful. It may be easier to talk to someone outside your family about your child’s illness and being able to share similar experiences might also help you.

Telling people

Many parents and carers tell us that keeping in touch with loved ones during their child’s cancer treatment keeps them going. However, some people may find it stressful discussing their child’s condition again and again with family, friends and colleagues.

You might find it easier to ask a trusted family member or friend to be your spokesperson and ask them to keep people updated on you and your child’s behalf. Another idea is setting up a blog or Facebook page, so you or different people can post information that everyone can read.

You or your child might not want to tell many people outside the immediate family about your child’s condition. This is ok too, whatever works for you.

Telling siblings and your child’s friends

Talking to your child’s brothers, sisters and friends about their cancer can be a difficult thing to do. There are many agencies available that provide support and advice about how to explain it to children of different ages.

Telling your child’s school

Telling your child’s school can also be difficult, but they’ll need to know as soon as your child is diagnosed. Your healthcare team can help you liaise with the school and make arrangements.

Telling your child’s GP

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

As the patient’s parent or carer, you’ll often be sent a copy too. These letters may contain unfamiliar medical terms, or there might be something in them which worries you. In this case, let your hospital or GP know – a quick chat with them might help to reassure you.

Cancer and work

If you work, consider telling your work about your child’s diagnosis. It can be hard asking for time off at short notice if no one knows about your child’s illness. Your colleagues and human resources department might be able to offer support.

> Find out more information about talking to brothers and sisters about cancer on CLIC Sargent's website

> You can also find some useful information about cancer on Macmillan's website

Physical support for your child

Your child’s physical symptoms might be due to their leukaemia or may be caused by side effects from their treatment is.

Keeping active

Your child may feel tired a lot (fatigue). This may be caused by their illness or their treatment. It isn’t the same as normal tiredness, which improves with rest and sleep.

It’s worth encouraging your child to keep as active as they can, because evidence shows that this could help to make their symptoms less severe. However, they’ll need to stop and rest more often than before their illness.

In childhood leukaemia, fatigue is particularly linked to periods of steroid treatment, although fatigue may happen at any time. If you think your child is being affected by fatigue, you might want to ask your consultant or specialist nurse for advice on the best way to deal with it.

Although staying active may help, there’s no evidence that any particular exercise programme can improve your child’s condition or how they respond to treatment.

Diet

There’s no evidence that a special diet will improve your child’s response to treatment. When your child is in hospital, a dietician will make sure they get the nutrition they need. When your child is at home, follow general advice on healthy eating from your hospital or GP.

A healthy diet and lifestyle will reduce the risk of infection and help your child cope with the effects of leukaemia and its treatment. Preventing infection is very important because your child’s immune system can’t destroy germs or resist infection in the same way a healthy child’s immune system can. It’s important to avoid not only infections from other children but also food poisoning. You should be particularly careful about food ‘use by’ dates and about keeping cooked and raw meat separate in the fridge.

Changes in your child’s condition

When your child is home between treatments or has finished their treatment, it’s very important to contact your healthcare team at the hospital straight away if you notice any new symptoms; don’t wait for your next check-up. Symptoms to watch out for include:

  • a raised temperature
  • cough or sore throat
  • confused or agitated behaviour, especially if this comes on suddenly
  • quickly becoming more ill
  • fast heartbeat and breathing
  • difficulty in passing urine or not producing urine
  • suddenly increasing pain

Measles and chickenpox

Your child’s specialist nurse will advise you about warning signs and what to do if your child becomes ill. It’s particularly important to stop your child being exposed to measles or chickenpox. You’ll be given detailed advice about this and a letter will be sent to your child’s school or playgroup to explain the situation if needed.

Vaccination

You’ll be given a schedule of when your child should get boosters of childhood vaccinations. This will usually be around 6 months after the end of chemotherapy, when their immune system has had the chance to recover. Your healthcare team will let you know when it’s the right time.

Always check in with them if you’ve got any questions around vaccinations, as there are some vaccines that children who’ve been treated with leukaemia shouldn’t have, until a set time afterwards.

Alternative and complementary therapies

There’s an important difference between alternative therapies, which are offered instead of medical treatment, and complementary therapies, which are used alongside standard treatment.

Extensive research has shown no evidence that any alternative therapy has any benefit in the treating of any form of cancer. We don’t recommend that you consider giving your child any alternative therapy in place of proven medical care.

There’s some evidence that some complementary therapies may help, particularly with the side effects of standard treatment. If you’re considering any form of complementary therapy for your child, it’s very important to tell your healthcare team, as some therapies may interfere with the treatment they’re having. Acupuncture should be avoided as it involves putting needles in the skin, which carries a risk of infection. Herbal remedies may be safe for a healthy person but may be dangerous when combined with chemotherapy.

Emotional support for you and your child

Being told your child has leukaemia is likely to be extremely upsetting and you’ll almost certainly experience many different emotions. Friends and family can offer a great deal of support, but it might be hard for them to understand the long term emotional impact your child’s leukaemia will have on you and your child.

Your healthcare team look at your child’s emotional, as well as physical needs – this is called a holistic needs assessment. As your child’s emotional needs might change, they may have an assessment several times during the course of their treatment and beyond. If your child has brothers or sisters at school or playgroup, it’s very important to let their teachers and child minders know they are under stress at home. It is also important to ask schools or play groups to warn you if a brother or sister has been in contact with an infection.

Play specialists

Younger children may be distressed at being in the hospital, so an important way to help them cope is through guided play. All children’s wards employ play specialists to help younger children understand their treatment, how it’ll be given and how it might make them feel. They can also help your child to find an outlet for frustration or anger. The play specialist may also be able to work with brothers or sisters who may have some difficulty coping with their sibling’s cancer diagnosis, as well as the changes to family routine. Siblings may resent the extra attention given to the child who is ill, then feel guilty about their resentment. The healthcare team can advise you about how to best work through this with them.

Emotional support for you

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

Practical support

Your own work, education or domestic arrangements may be affected by your child’s illness. It can be a good idea to tell your employer or college about your child’s condition. Most organisations will do all they can to help.

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.

You might need to provide written proof of your child’s diagnosis, which your healthcare team can provide. If you have other children or if you’re a carer, you may need support during your treatment, including making alternative care arrangements for the people you look after. Your child may have unplanned stays in hospital because of infection, for example – it’s helpful to have plans in place just in case.

Children’s hospitals will often have educational staff and schools to provide teaching while your child is an inpatient. The hospital teaching staff 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 healthcare 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.

Cancer and the law

People with cancer, or any other serious disease, are covered by a law called the Equality Act – for the purposes of the Act, cancer is considered a disability. The Equality Act provides rights for people not to be directly discriminated against or harassed because they have an association with a ‘protected person’.

This can apply to a carer or parent of a child with cancer.

Getting to hospital

Most children are treated in specialist centres as inpatients, meaning they stay overnight.

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

Financial support

Your finances might be the last thing on your mind if your child has just been diagnosed with blood cancer but there are lots of places you can get help and advice.

Your hospital will normally have medical social workers or welfare rights (benefits) advisors who can advise on benefits you could get, if any. These might be especially useful if you’re on a low income or unemployed.

Where to get help and support

There are lots of organisations out there who offer information and support to people caring for children with leukaemia.  Many parents and carers of children with childhood leukaemia find it useful to call on the expert information, advice and support offered by a variety of organisations, including ourselves. Here are some we recommend.

Bloodwise

We offer patient information online and in free printed booklets, and have an online community you may like to join.

We can help with practical and emotional support and signpost you to other available services.

Macmillan Cancer Support

Offers practical, medical, financial and emotional support.

Children with Cancer

Provides practical support for young cancer patients and their families.

The Children’s Cancer and Leukaemia Group

Brings together healthcare specialists who care for children with cancer and also offers support and information to parents

Teenage Cancer Trust

Provides specialist units and nurses for children and teenagers with cancer. They also have an education team which visit schools to raise awareness of cancer. They also provide a support network so you and your child can meet others in a similar situation.

CLIC Sargent

Provides clinical, practical, financial and emotional support to help young patients and their families.

CancerHelp UK (Cancer Research UK’s patient support service)

Offers information about different conditions, current research and practical support.

Leukaemia Care

Offers patient information, a 24 hour care line and support groups for people affected by leukaemia, lymphoma, myeloma, myelodysplastic syndromes, myeloproliferative neoplasms and aplastic anaemia.

African Caribbean Leukaemia Trust (ACLT)

The ACLT aims to increase the number of black, mixed race and ethnic minority people on the UK Bone Marrow Register by raising awareness and running donor recruitment drives.

Anthony Nolan

Runs the UK’s largest stem cell register, matching donors to patients with leukaemia and other blood related disorders who need a stem cell transplant.

Maggie’s Cancer Caring Centres

Centres across the UK, run by specialist staff who provide information, benefits advice and psychological support.

Financial advice

Citizens Advice Bureau (CAB)

Offers advice on benefits and help with filling out benefits forms.

Department for Work & Pensions (DWP)

Responsible for social security benefits. Provides information and advice about financial support, rights and employment.

Macmillan Cancer Support Grants

A Macmillan grant is a one-off payment for adults, young people or children with cancer, to cover a wide range of practical needs.

Travel insurance

Macmillan Cancer Support

Provides information about what to consider when looking for travel insurance. It also has a list of insurance companies recommended by people affected by cancer.

Association of British Insurers (ABI)

Provides information about getting travel insurance and contact details for specialist travel companies.

British Insurance Broker’s Association (BIBA)

Offers advice on finding an appropriate BIBA-registered insurance broker.

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