Children and blood cancer

It is not easy to tell a child about a diagnosis of blood cancer.

The amount of information that can be given often varies with the child’s age and level of intellectual and emotional development. No one knows your child better than you and no one can tell you when or how to tell them about their illness.

While very young children are more likely to be concerned about possible separation from a parent, slightly older children will have some understanding of the diagnosis. Fear of pain and bodily harm is common in this age group as is the belief that they are in some way responsible for their illness. Older children and teenagers are generally capable of understanding the implications of their illness.

It is important to allow children of all ages to express their fears and anxieties, and to communicate with them as openly as possible. Where appropriate, you should also include them in decisions regarding their care. 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.

Children react differently to treatment. The type and severity of side effects can vary from child to child, depending on the type of treatment used and how an individual child responds to it. In general, more intensive treatment is associated with more severe side effects. There is no doubt that side effects can be very unpleasant at times, but it is important to remember that most are temporary and reversible. It is important that you report any side effects your child is experiencing to the nurse or doctor because many of the side effects can be treated successfully.

Most children go on to enjoy long and healthy lives after being successfully treated for a blood cancer. Sometimes, however, the treatment can affect a child’s health months, or even years after it has finished. These are called long-term or late effects. Your doctor will discuss any potential long-term effects of your child’s treatment and the steps that can be taken to help reduce or prevent them. The long-term effects of treatment depend on several factors including the types of drugs and combinations of drugs used and the individual and cumulative doses used.

How do we make treatment decisions?

Most parents feel overwhelmed when their child is diagnosed with blood cancer. In addition to this, waiting for test results and then having to make decisions about proceeding with the recommended treatment is very stressful. Some people do not feel that they have enough information to make such decisions while others feel overwhelmed by the amount of information they are given, or that they are being rushed into making a decision. It is important that you feel you have enough information about your child’s illness and all of the treatment options available, so that you can take part in decisions which are being made about the best way forward for your child. Sometimes it is hard to remember everything the doctor has said. It helps to bring a family member or a friend along who can write down the answers to your questions, prompt you to ask others, be an extra set of ears or simply be there to support you.

Naturally, many parents feel a great sense of sadness and grief at the possibility of the death of their child. It is important to remember that survival rates for children with blood cancer have risen dramatically, and will continue to improve in the future. It is also important to remember that the doctors, nurses and other health professionals caring for your child are experts in this area. Parents are encouraged to stay, where possible, and comfort their child during various tests and procedures. Remaining calm and confident and encouraging your child can be of great assistance during these times. If you find it too distressing you can always stay close by instead, and return to comfort your child as soon as possible afterwards. It is best for parents to speak directly to their doctor regarding any questions they might have about their child’s disease or treatment. It can also be helpful to talk to other health professionals including social workers or nurses who have been specially educated to take care of children with blood cancers.

How do I tell them?

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.

How will blood cancer affect our family?

The diagnosis and treatment of blood cancer can cause an extreme amount of stress within any family. The demands of treatment bring many disruptions to normal day-to-day lives. Family routines are often disrupted with frequent trips to the hospital for tests or treatment. Members of the family may suddenly have to perform roles that they are not familiar with, for example cooking, cleaning, doing the banking and taking care of children. In other cases they may have to take on extra roles and responsibilities within the family, sometimes on top of their paid work. This can be both physically and mentally exhausting. Some parents find that, where possible, allowing themselves to maintain as much of their familiar role as possible within the family helps to maintain some normality in the situation and give them and everyone else in the family a better sense of control.

Serious illness within a family can be very challenging for partner relationships. Effective communication between partners is essential. Acknowledging and talking about the stress in the situation can help. Many treatment centres have a counsellor, psychologist, outreach nurse consultant, social worker and pastoral care workers who can assist you and your family in coping better with the practical and emotional difficulties you may be experiencing. They can also identify strategies that will help you and your family cope during and after treatment. We are also here to provide you with support and understanding.

Relocating to hospital for treatment for childhood blood cancer, especially in the early stages, requires specialist care that is usually only available at metropolitan hospitals. As a result many patients and family members have to spend some time away from the comfort of their own home. If you need to travel a long distance to the treatment centre, accommodation may need to be arranged for your family. You may also need some accommodation outside the hospital if your child is being treated as an outpatient. Contact the social worker or the Leukaemia Foundation office in your state for more information.

Can my child still go to school?

Interacting with other children is an essential part of any child’s social and psychological development. Because of the nature of blood cancer treatment most children spend more time out of hospital than in hospital. Between treatments and when your child is well enough they can participate in their usual daily activities including attending playgroups, day care or school. For the child with blood cancer they can also provide a sense of returning to normal and hope for the future.

Children undergoing treatment may have interrupted school attendance during treatment and at other times when they are unwell. Some children miss their school friends and the social life that comes with being a student. Where possible, keeping  in contact with the school, informing them of your child’s progress and encouraging classmates to keep in contact with your child through visits, phone calls letters from class mates, cards or posters with thoughtful messages, using a webcam, videos or emails which can be accessed through the hospital. This will benefit them while they are out of school and will also make the transition back to school after or in between treatments easier.

It is important to provide teachers and/or carers with an adequate amount of medical information about your child’s illness and how the disease or its treatment may affect them at different times. This will put them in a better position to anticipate and meet your child’s needs. Tiredness and risk of infection are important concerns when your child is undergoing treatment and for some time afterwards. The doctors and nurses at the treatment centre will provide you with information and some common sense strategies to help reduce these risks while allowing your child to lead as normal a life as possible during this time. You can pass this information on to teachers and carers. It is also important to make teachers, carers and other parents aware of your child’s situation and the need to be informed about any outbreaks of contagious infections like chicken pox or measles so that you can take steps to prevent your child from infection. Organisations like CanTeen, the Make-a-Wish Foundation and the Starlight Foundation can be a useful source of information and peer support during this time.

What about the ‘well’ sibling?

When a child has been diagnosed with a blood cancer the ‘well’ siblings may experience many confusing emotions. The way in which they respond to these emotions will depend on their age and development level. They may worry about the sick sibling, and feel sad about family separations. It is normal for well siblings to feel that they are missing out, especially in the early stages of treatment when the parents have to spend a great deal of time at the hospital with the sick child. They may feel resentment at having their lives disrupted, jealousy about the amount of attention given to the sick child and guilt about having these negative feelings in the first place.

Helpful suggestions:

• Reassure the siblings that they are loved.
• Give the well sibling opportunities to talk about how they are feeling.
• Talk about the disruptions and reassure the child that your family is not alone in this regard.
• Ask other family members or friends to spend time with the sibling or take them on a special outing.
• Give the sibling appropriate information about what is happening to the sick child and assist them to understand the reasons for the hospital visits and treatment.
• Including the sibling in some hospital visits can be helpful.
• Try not to expect too much of the well sibling during this stressful time. For example, some children will want to help out with extra household chores while others will not.

It is important to remember that although there are many challenges for siblings of sick children, most do go on to adjust very well.