Coping with young children during leukaemia

People with acute leukaemia usually spend long periods in hospital having treatment. With young children at home this can be especially difficult. Some people’s spouses or partners took leave from work to look after their children in addition to visiting their loved one in hospital. Others enlisted family members to help with childcare or sent their children to stay with grandparents (see ‘Intensive chemotherapy’). Deb’s leukaemia had been diagnosed while he was temporarily in the UK; he sent his children home to India to live with their grandparents. Friends offered to look after Neil’s youngest daughter.

Some people’s children visited them regularly in hospital but stayed away if they had a cold. Others didn’t see their children or grandchildren for long periods while they were in hospital, either to avoid the risk of an infection or because they didn’t want the children to see them so ill. Kerry said she didn’t want her children frightened by how she or other patients looked. She missed her children terribly but phoned them regularly. She felt envious of other people doing things with their children. Jeff was sad that his grandchildren weren’t allowed to visit because his immune system was weak, but he watched recordings of them dancing and singing for him. Kerry often had breaks at home during her treatment but her mother only brought her children to visit if her immune system was strong enough.

Health professionals may not always offer advice about how to talk to children about cancer or leukaemia, but charities such as Macmillan and Leukaemia Care do. Talking to children about cancer can be very difficult, and may upset both parent and child. What parents choose to say will depend on the age and maturity of the child. Most people said they had not used the word ‘cancer’ but had told their children that they had a serious problem with their blood. They didn’t volunteer too much information but would answer any questions. Some children didn’t ask questions.

One woman said her son knew she had a serious problem because she was having frequent blood tests; now that her chronic myeloid leukaemia (CML) is well controlled she sees no need to explain more to him.

It can be difficult to know what effect a parent’s serious illness is having on a child as their ability to understand, and their needs, vary at different stages. Some children may not be able to talk to their sick parent about their feelings but may show their concern through changes in their behaviour. Others may be upset by seeing changes in their parent’s appearance, such as hair loss from chemotherapy. Ian’s children had been about 8 and 6 when he was first diagnosed; he felt they had been too young to understand what was going on. Elaine had been unaware of any adverse impact of her illness on her children aged about 5 and 6. Neil said that his younger daughter’s behaviour had changed for the better since realising she might lose her father; his older daughter now wants to become a doctor.

Children need someone they can confide in about their concerns, and some people were comforted to know that their child had talked to a friend about the illness or that staff at their school had been supportive. Deb’s twin daughters were very close so he felt sure that they would have discussed it together, although they put on a brave face for him.

Some people said that their children had been understanding and supportive during their illness. Ian’s children had been good at leaving him alone when he was at home after his hospital treatment and needed to rest. Marilyn’s grandson had suggested that drinking tomato juice would help her blood to get better because it was the same colour.

Last reviewed: December 2018.

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