|  | | |  | Coping with childhood leukaemia |
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|  |  |  | | | | Coping with childhood leukaemia | | | | |
| | This booklet has been written to try to help you as a family to cope with the stresses and problems of having a child with leukaemia.
Not all of the difficulties discussed will necessarily apply to you but they may be important factors for other members of your family or other similar families.
The book has been divided into four sections. We would like to suggest that you read the first two sections within a few days of hearing the diagnosis as they will help you through the first weeks. The remaining two are more concerned with the future and are best left a little while. They deal with practical problems and the help that is available and how to set about getting this help.
They also discuss possible long term difficulties and how to handle them.
 | The diagnosis and the first few days |
You have recently suffered a very severe shock because you have learned that your child has leukaemia. You may have suspected this diagnosis but naturally hoped that you were wrong. Now that you know the truth you are besieged by many bewildering thoughts and feelings. It is important for you to know that this is natural and that you are not unusual in having these thoughts.
The doctor in charge of your child's treatment will by now have talked to you and tried to explain to you what leukaemia is and how it is likely to affect your child. You will probably have taken in very little of what was said and will have forgotten a great deal. Do not worry about this. The doctor understands this and will be prepared to explain everything again. If he/she does not suggest this then do not be afraid to ask for the opportunity of another talk. It is often a good idea to write down the questions which keep coming to your mind - you can then go through them with the doctor, otherwise you might forget them. It is hard at first not to be very depressed or angry about the news but you must remember that so much can be done today for children with leukaemia and you must have hope. More than half the children diagnosed and treated in the special centres are successfully treated and this number is increasing. Some children have as good as an 80% chance of treatment being successful and these children will go on to lead completely normal lives. It is never possible for your doctor to be absolutely certain about the outlook for your child but what you are told will be a fair assessment and, even if there is some uncertainty, the doctor is being honest. No-one knows at the time of diagnosis which children will survive. The doctor can only talk of risks and chances.
The doctor will explain to you what the treatment for your child is likely to entail. While it will sound very complicated and frightening to you, remember that the doctors and nurses are carrying out these treatments every day and for them it is as much a routine as it is, for example, a policeman to direct traffic, a mechanic to find and mend a fault in a car engine or a lawyer to draw up complicated legal documents. The people treating your child are experts in their field. While this should give you confidence it may also make you feel inadequate.
Remember that you are very important to your child and by remaining calm and giving encouragement you can help him/her with the numerous tests and investigations which have to be done. The doctors and nurses are aware of your feelings and they will want you to help nurse your child and assist in other ways. If you feel able to stay with your child while tests are being done then that should be possible, but if you find it upsetting then it is probably better for you to wait close by. If you are yourself agitated and upset you will convey this to your child and make the situation more frightening. You must not feel ashamed of these feelings; most people not used to hospitals are on edge when they first go to one and you are naturally even more anxious because of your child's serious illness. You are probably much better waiting so that you can comfort your child and play with him/her after the procedure is over.
These days most children's centres treating leukaemia give the patients an anaesthetic to do the more painful tests. In this case you will probably be allowed to stay with your child until he/she is asleep and will be able to sit at the bedside waiting for him/her to wake.
Visiting and living in hospital with your child
Children's hospitals always have free visiting for parents and this should also be the case in all children's units of district general hospitals. This means that parents can come at any time and stay until the evening. Obviously the nurses have to settle the young in their beds and cots in the early evening, but they will encourage you to see your child settled and it is best to follow your usual routine. Lots of other vistors are not welcomed because the children get tired quickly and are easily overwhelmed. They are also prone to have too many infections and it is not a good thing to have too many people around the bed. The ward sister will however usually allow brothers and sisters to visit at weekends and this is important so that the family can get together.
Most children's hospitals have facilities to allow you to live in with your child. Many of you will wish to do this but it is important to give it some thought especially if you have other children at home. The nature of your child's illness means that repeated hospital visits and further admissions are likely in the future and the rest of the family may feel rather neglected. Parents have a great need to talk with each other about this shock which has struck the family and to discuss their feelings, reactions and worries. You both need comfort and support and it is easier to give this to each other if you have time alone together. This is very difficult if mother is living in at the hospital and father trying to keep the rest of the family together. Some parents find that the most sensible solution is to spend as much time as possible with your child in the day and go home in the evenings. The circumstances are different from those of a short-lived acute illness where the child soon recovers and the usual family routine can be quickly restored. The family can cope for a few days in these cases but with a disease like leukaemia the ongoing treatment, although mostly on an outpatient basis, will last about three years and it is important from the onset to work out a method for your family so that no one feels neglected or put upon.
No-one will think the less of you for spending some time away from your child. We all need some time to ourselves especially at periods like this when we need to "refuel". The staff all realise how stressful it is to be on a busy ward for long hours with little to do.yourself.
| Coping with the problems of treatment |
In the majority of cases the child with leukaemia responds quickly to treatment and returns to an active normal life. The period of time in hospital will vary according to the type of leukaemia and treatment programme but most children have a first stay in hospital for about three to six weeks. Your doctor will be able to give you some advice as to how long the child is likely to remain in hospital. On your return home and despite the resumption of normal health and activity there will be constant reminders to you of your child's illness, for example loss of hair, variable appetite, moodiness and sometimes a more dependent attitude. The majority of these symptoms are due to the effects of the drugs which your child has to take and it is important not to pay too much attention to them.
On returning home it is essential that you try to return to the normal day-to-day life of your family and also maintain your usual routine. You will of course have to make regular visits to hospital but these will usually occur on average every two to three weeks and the doctors will not expect serious complications or deterioration to occur in a sudden way. You will be warned of the symptoms to look out for, which should alert you to contact the doctor. Do not hesitate to discuss problems with the doctor who can advise you how to handle them.
Some children who have received a lot of attention while in hospital continue to be demanding while at home. This must be discouraged as it is detrimental to normal family relationships -brothers and sisters will feel neglected and then they will also play up to gain attention. Your child with leukaemia will be happier and better able to deal with the disease if you accept it as something which you all have to try to overcome.
While it cannot be ignored, it should not become centre of all attention and conversation. Everyone in the family must remain important, with their special needs and requirements. Your doctor will tell you when your child is fit to return to school, nursery or playgroup. This will usually be within a couple of months of diagnosis but it depends on the treatment schedule. If the child has to be readmitted for further drug treatment or for radiotherapy then return to school may be delayed. Return to normal activities should be a goal to look forward to as should family holidays. In the early days following diagnosis father will probably have had time off work. This should not be prolonged unless your child's life is in immediate danger which is very rarely the case and if it is the doctor will have told you. Similarly if the mother has a job she should try to return to it. Cutting yourselves off as a family from workmates, friends and other contacts leads to isolation and this makes coping more difficult.
| The people who can help you |
There are several groups of people whose job it is to provide help and support to families in your circumstances. In addition there may be relatives and friends who would like to help in pratical ways as well as sitting talking with you about your child's illness. Within the hospital, as well as doctors treating your child, the sisters and staff nurses on the ward and in the clinic will have had a lot of experience of the way you are feeling and the kind of difficulties you may have. Most of the large children's units have sisters, social workers and health visitors specially appointed to provide assistance. It is wrong to think that these people are only there to help "problem families", people with financial difficulties or people who cannot cope on their own. There may be a simple solution to the problem which is worrying you and even if there isn't discussing it will always help. Many Regional centres also now have parent self-help groups. You may find it very valuable to meet other parents who have "been through it all" themselves, so that you can share your experiences. Your local group's organiser will help to put you in touch with appropriate other parents.
Your general practitioner will be happy to listen to your personal fears and anxieties - your feelings of guilt and anger. Your neighbours and friends will be pleased to look after other children, do some shopping and maybe drive you to the hospital. Grandparents often feel lost and do not know what attitude to adopt. Family discussions can be helpful so that they too understand what is to be expected. In their young days leukaemia was almost invariably a fatal disease and they may need the reassurance of a talk with the doctor before they can believe that your more optimistic attitude is realistic.
This booklet has tried to cover many aspects. It is not intended to imply that every family will experience all the diffculties mentioned. We all have different circumstances and our response to anxiety, stress and illness is a very individual thing. It is hoped that you will be helped by those comments which seem to apply to you and if there are other problems not dealt with then mention them to the doctor or social worker. They will also be interested to hear from you about your own method of coping and how you have been helped. |
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