CHILDREN WITH CANCER

Press, 29 January 1986, Page 18

CHILDREN WITH CANCER

More than 40 children with cancer have this week gathered at Living Springs, Governor’s Bay, for five days of adventure and fun. The special camp, called Camp Quality, has been organised and funded by Lions and Lioness Clubs and is the first of its kind in the South Island. In this article SUE LANCASTER talks to a Christchurch boy with leukaemia who is at the camp, and to his family.

‘The worst part is the treatment’

Children at the swimming pool sometimes stare at the scars on Justin Sheehan’s legs. It is hard to explain to the children that the doctors ran out of veins in Justin’s arms to inject cytotoxic drugs, and had to use his feet. That could have led to the ulcerated legs. It is hard, too, to explain that from the age of four Justin has been in and out of hospital and seen more friends die than they are ever likely to see. And it is hard to explain that Justin has leukaemia — and that the scars represent years of battling for his life. So Justin, aged 15, makes up stories, about being in a terrible, gory car accident, for the children at the swimming pool who would not understand the truth. Luckily, his school friends are very supportive and it is only strangers who stare or tease. Dr Michael Beard, a haematologist at Christchurch Hospital who has worked with Justin for several years, says that although patients can have side-effects from chemotherapy, such as feeling ill and hair falling out, the ulcers on Justin’s legs are extremely unusual. Justin had three years of chemotherapy after he was diagnosed as having leukaemia at the age of four. The illness then reoccurred when he was 11, and again he had three years of treatment. Acute leukaemia is the commonest childhood cancer. The bone marrow cells are affected and do not develop normally. In 1940, the average survival time of patients who got leukaemia was two months. Researchers then found that some forms of acute leukaemia could be brought under control by drugs. With current chemotherapy treatment, 50 per cent of children are alive and well after five years, says Dr Beard. Mrs Marie Sheehan says it was “hard going” for the first few years after Justin was diagnosed. “I was absolutely shattered when I found out — and it’s just as hard for me to accept it now.” Regular visits to the hospital mean that the parents, and children with leukaemia, get to know

each other well.

'“l’ve seen so many kids that I have loved and they’ve died. Justin has coped extremely well. “I think as he got older he’s the one who keeps us going.” Mrs Sheehan is very proud of Justin for his courage. “He’s lived a lifetime in his years — with what he’s seen.” Parents of children who have died have also been an inspiration to the Sheehans. “They inspire those of us plodding along to keep going.” It is “soul destroying” to watch the little children having the treatment, but while they have got the treatment they have hope. She does not know what she would do if the day came when doctors said: “I’m sorry there’s nothing more we can do . . .”

“At the moment we’ve still got light at the end of the tunnel.” The worst part of having leukaemia is the treatment, Justin says. “They keep prodding and prodding. Sometimes I feel like telling them to stick it and let me be for a couple of weeks, but I know it’s for my own good.”

Dr Beard says that recent improvements in injecting the cytotoxic drugs (chemotherapy) have meant that patients no longer need to be prodded continuously with needles to find the veins. “It is significantly easier than it was, but I’m not pretending it’s pleasant.” Mr Neville Sheehan says often they would go to the hospital with Justin for two hours and it would take 12 or 18 hours. Because so much time was spent at the hospital during Justin’s three-year treatments, Mrs Sheehan says she found it difficult to maintain a balance at home and to keep up strength for their other children — Jared Lee, aged five, Nathan, aged 10, and Carla, aged 13.

Both Mr and Mrs Sheehan believe their place is at the hospital with Justin, so the other I children have had to do a lot for themselves and grow up very quickly.

With the chemotherapy treat-' ment complete, the Sheehan houshold can get back to a “fairly” normal routine but they 2 take each day "one at a time.”' Justin is still deciding on a ’ career but is keen to be a doctor' or do something with his hands. ’ This year he just wants to get his ‘ School Certificate. His school work has not been hindered by the many hours he: had off school. He works extremely hard to catch up and ■ spends long hours doing homework, says Mrs Sheehan. He has 4 won several awards for his ef- - forts.

Justin’s attitude to the future is that he may as well get out and do things — “while I am still around.” “Everyone’s got to die and I’d rather die with leukaemia than get blown up by the bomb.”

He was lookig forward to Camp Quality — a camp organised this week by the Lion’s and Lioness’ Clubs for children with cancer. Last year, he went to a similar camp in Auckland. Mrs Sheehan says that Justin never looked as healthy as when he came home from the Auckland camp. Justin says the camp is a good opportunitiy to be with his “own kind.” "Everyone sort of accepts it. One girl has had her leg off — but everyone is treated equal.” In a sense he feels closer to his friends with cancer because they "understand what you’ve been through.” Christchurch Hospital treats about five new cases of leukaemia each year. Although it is more common in childhood it can affect anyone at any age. Dr Beard says patients are never told they are “cured” because leukaemia can recur, but it is rare for it to do so after five years.

The pain and the suffering of the chemotherapy treatment? “If it’s going to save your life, it’s worth it,” says Justin.

‘Easier, but ( not pleasant 9