Coping with childhood leukaemia
Hearing that your child has been diagnosed with leukaemia is an extremely distressing experience and one that can trigger a whole range of intense emotional responses ranging from denial to devastation. It is normal to react with extreme fear, disbelief and confusion. You may become angry or even furious with the doctor or those around you. There may be a sense of numbness or that the situation is not real, that a 'mistake' has been made. Naturally most parents experience their worst fear of all – the possibility of losing their child. This is a very normal reaction but it is worth remembering that survival rates for many childhood cancers are currently very good, and will continue to improve in the future. It takes time to adjust to the diagnosis of your child's leukaemia. However, with enough time, enough information and a great deal of support, the shock of the diagnosis will be replaced by the reality of the situation and what you need to do next.
There are many and varied demands placed on parents and families when a child is diagnosed with leukaemia. Many urgent decisions need to be made about treatments and procedures and in many cases the care of siblings and other dependent family members. Treatment requires specialist care that is only available at metropolitan and regional hospitals. As a result many parents and other family members have to spend some time away from the comfort of their own home and adjust to new and unfamiliar surroundings. Many treatment centres now have reasonably priced accommodation for you and your family, on site or close to the hospital. In some areas the Leukaemia Foundation has free accommodation for patients and families. Suitable accommodation can be arranged for you and your family by contacting the social worker at your treatment centre, where possible before you leave home.
Parents are naturally concerned about any fear, distress or pain their child might have to endure during the diagnosis and treatment of leukaemia. It is important to remember that every effort will be made to ensure that your child is as comfortable as possible at all times. The doctors and nurses at your treating hospital will use a range of safe and effective strategies to ensure that your child is as comfortable and relaxed as possible during any test or procedure. In addition, you, or your partner will be encouraged to stay where possible, and comfort your child during this time. If your child requires a general anaesthetic you will be allowed to stay by their side until they are asleep, and be there to greet them again when they wake up afterwards.
It is not easy to tell a child about a diagnosis of cancer. The amount of information that can, or needs to be given often varies with the child's age and level of emotional development. In general it is important to have an open and honest approach, providing children with as much information as you, and they, are comfortable with, and they can understand at the time. In many cases, attempts to withhold information can cause even more anxiety than if the truth had been told from the start. It is important to allow children of all ages to openly express their fears and anxieties, to communicate as openly as possible with them and where appropriate to include them in decisions regarding their care.
Following initial treatment, many children can be treated as an outpatient with periodic hospital stays where necessary. While your child is at home it is important to try to reestablish as normal a family life as possible. Planning ahead and encouraging the child and other members of the family to get on with their lives despite treatment and the uncertainty of the future can help to quell anxiety and instill hope within the family. It is also important to try to maintain as much as possible the normal rules and boundaries on behaviors for all children within the family. This will not only contribute to a calmer home environment, it will also help to make the children, including the child who is being treated, feel more secure and relaxed.
Children should be given every opportunity to live as normal and happy a life as possible while they are being treated for leukaemia. Between treatments and as soon as they are well enough children are usually encouraged to participate in their normal childhood activities, including attending school or day care. This not only gives them an opportunity to learn and spend time with their friends, it can also provide them with a sense of returning to normal and hope for the future. The doctors and nurses at your treating centre will provide you with information on things to look out for, for example signs that your child might have an infection, and some common sense strategies to help your child stay as healthy as possible while they are away from the hospital. You can pass this information on to teachers and carers. Many hospitals run outreach programs where health professionals, like specialist nurses, provide child and age-specific education for teachers and carers.
Most paediatric treatment centres have an educational psychologist, counsellor or school liaison officer who can also help.
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