The End of Treatment

By Janet Mikkelsen

Janet Mikkelsen BSc (Hons), R (Comp)N, has been employed at Starship Children's Hospital in Auckland as a staff nurse in paediatric oncology and haematology for various periods since 1990.

In 1992 and 1993, Janet was Charge Nurse at Starship and she has also been data manager and in charge of sibling days, which she helped to establish. Janet has worked at the Royal Children's Hospital, Melbourne, the Great Ormond Street Hospital, London, Bedford Hospital in the UK as well as Princess Mary and Starship. She is currently working part time in clinic.

The end of treatment. It signifies so much. For some: an end to daily tablet taking. For others: getting back some control over family life, a time to celebrate. But also, for many families: a time of high anxiety as they learn to live without the medicine stopping the cancer coming back.

Many children and families have built strong friendships and relationships with other families from the ward and clinic as well as the staff at the hospital and in the community. Will those end as abruptly as the chemotherapy does? For most childhood cancers, research has shown us that, after a certain time on chemotherapy, no extra benefit will arise from staying on it for longer, so it can stop. This can be as short as 10 weeks for some solid tumours or as long as three years for some boys with leukaemia.

I'm sure there are many parents who would like to keep some of it going for a bit longer "just to be on the safe side". However, for other families, it is a huge relief to be free of treatment - the huge effort is over. No one can tell you how you as a family or individual will feel coming to the end of treatment but, be reassured, that however you feel, there will be plenty of other parents who have felt the same way and the hospital staff that you see will certainly not be expecting you to feel a particular way.

For most parents, it is only time that will make them feel safer about their child - initially every headache, every bruise, every period of tiredness will cause anxiety. Most people will find ways of dealing with that anxiety and uncertainty and, as life slowly becomes more normal and their child regains their energy, they feel better. The doctors, nurses and social workers are also very aware of how difficult the initial period of treatment can be, so never feel that your anxieties or concerns are foolish or will not be listened to. As one parent stated (her child had been off treatment for a year): "I still worry and think in terms of the illness. For instance, he had to have some teeth pulled, and my first thought was to go get his counts checked to make sure that his platelets were high enough. Then I told myself that I was being ridiculous. I let him go in like a normal kid and it was fine." (Keene, pg 10)

The wellness path

Physically you will notice changes in your child - even those who have been on treatment for years and been very well on it will have noticeably more energy within a few weeks to months.

Often children will have problems with dry skin or rashes in the first months off treatment. Time seems to help with this, together with moisturiser at times and good sun protection care. Their ability to fight infections will also return. Their full blood count will, with most children, be back to normal within two months. Immunity to viral infections takes longer - after six months we are no longer worried about chickenpox and measles being life-threatening illnesses. Your doctor will discuss with you reimmunisation of the immunisations your child had as a baby. We believe that the chemotherapy somehow damages their memory of exposure to the immunisations so, to keep them safe, encourage reimmunisation. What and how many will depend on their age at diagnosis and what treatment they have had. Children who have had bone marrow transplants will have a much more intensive reimmunisation pro- gramme as well as longer and closer follow up after their transplants.

Check ups

In terms of watching your child physically, they will be followed up closely initially, then with visits and tests becoming less frequent as time goes by. For children with solid tumours there will be a series of scans and x-rays soon after treatment finishes and a schedule of further tests depending on what type of tumour it was and what protocol they were on. This will be discussed with you before treatment is finished so you should have a good idea of how frequently tests will be done.

Children who have finished leukaemia treatment, will have an end of treatment bone marrow aspirate and lumbar puncture. They will then have monthly blood counts for the first year off treatment, two monthly in the second year and less frequently after that. Some centres will only do blood counts after that second year if the child has symptoms that would suggest a problem. Others just do a blood count whenever the child comes to clinic whether it is six monthly, annually, or every five years.

Your centre will explain what the normal practice is for them. We do recognise that every child and family is different though and would always do an extra blood test if a parent was worried. There will be other tests done from time to time as well, depending on what sort of treatment your child had and whether it has the potential to cause longer term side effects. Children who have had bone marrow transplants will be followed very closely and you can expect that the first few months following discharge from a transplant to be spending a lot of time still at the hospital as an outpatient.

Centres also vary on how soon to take out portacaths and Hickman lines. For most they are left in for about six months after treatment finishes. Many families would like this to be sooner - it is the last visible sign of treatment really being over. There are reasons for leaving it though - even when we are very confident that for most children the end of treatment means just that, there will be a small percentage that will relapse and for many, that will be in the first period after treatment ends. Still having venous access will be one good thing amongst the host of bad things at that time. Also, six months gives the child's body a good chance to recover its immunity - the slight chances of bleeding problems or infection related to the catheter removal become much like that of any other child.

Marking the occasion

So how do families cope with the end of treatment? Some like to mark it with a formal celebration - a party, a church service, or something less formal - tipping all the leftover tablets down the toilet! Some want to immediately put it all behind them although that can be hard. Even if parents try hard to put the experience behind them and do not want it to become the defining experience of their child's life, there will always be friends, relatives and others in the community enquiring about the child. It is always concerning if a child starts to believe that people are only interested in them because they have, or have had, cancer. Most families also say that life never returns to the 'normal' they had before,- they have to create a new version of what normal is. As one parent stated, "don't think any of us will ever go back to the days when we just assumed that our kids would grow up, that the parents would die first; that sense of security is probably gone forever." (Keene, pg 8)

Other parents find that the stress they have been through over the past months or years of treatment, finally catches up with them. I have been involved with a number of parents who have been fantastic throughout treatment, coped with huge problems and pressure, but have got very depressed and anxious a number of months after treatment has finished. They can't believe they are falling apart then, when there are no longer any concerns but it really is a reaction to what has happened earlier. When they needed to they just kept going, but, once it had stopped, their minds and body reminded them that we are unable to maintain huge amounts of stress forever. For these parents, time to acknowledge the enormity of what they have been through is important and giving themselves time and the resources (counselling, sleep, massages etc) to recover.

Some people want to give back to the organisations that helped them through treatment - whether it be the hospital, the local community nursing service or parent support groups like the Child Cancer Foundation. This can be through gratitude for the help and support received and for the fact their child is alive, or because they feel strongly about what can help other families going through the same difficult situation. This is a very valid way of coping with being off treatment - it helps you stay involved with something that has been very important in your life as well as feeling useful after a period of often feeling helpless in the face of your child's illness. Other parents, though, wish to put the whole episode behind them and do not want to be involved in frequent reminders of the experience they have been through. Everyone is different.

In conclusion, the end of treatment brings about a myriad of emotions. It is a time to celebrate and acknowledge all you have been through but also a time requiring support. Talk to other parents and staff about how you're feeling - they can't live it for you but will understand in ways that other family and friends may not. Give yourselves time to get back to 'normal' - there may be as many up and down days as there were at the beginning of your childhood cancer journey. Be proud of yourselves and your children for having tackled (although not voluntarily) something much tougher than many families ever have to face.

Reference:

Keene, Nancy (1996) Childhood leukaemia: A parent's guide, Reilly and Associates, California.

Bibliography:

The Children's Hospital of Eastern Ontario Oncology Team (2002) Coming off treatment: now what? Contact, Candlelighters Spring Issue.