When he was 14 we were told he had leukaemia. The disease was fairly advanced. His doctors were, quite correctly, very honest with us about his chances of survival. It was hard to take, and made all the worse because we had to decide if he should have experimental treatment to improve his chances, which would involve double the normal amount of chemotherapy. We knew that too much chemotherapy could be fatal. I have kept very quiet about his difficult years of treatment, and the agonising question of whether the leukaemia would return, because he needed space. He wanted to forget the transfusions, the lumbar punctures, the injections, the constant blood tests. He travelled. He went to university. He lived a normal life.
But now, 10 years since first knowing he had leukaemia, we both feel it is time to "come out", in the hope that we can help other people going through the same ordeal. The more you find out about leukaemia, the more you talk, face it, fight it, and even laugh about it, the more chance you will have of getting through it.
At the beginning we were distraught. I took Daniel to our GP one evening, about a rash on his ankles. When the doctor investigated his liver and spleen I began to feel alarmed. But he told me to carry on filming the next day for, ironically, a BBC special on the Chernobyl disaster and the implications of the nuclear fall-out on our health in the West.
My husband, John, took Daniel for further tests the next day, and I was told over the telephone that he had acute lymphoblastic leukaemia. Two colleagues came to collect me and drive my car back to London, on the assumption that my grief would turn me into a danger on the roads. I remember thinking: "He's been told he might die, and I wasn't there with him." I vowed to do everything and anything to keep him alive. On the journey my head throbbed and my heart hurt.
When I found Daniel and John at the hospital they were numb with shock. We cried together, but even then Daniel was enduring painful treatment with exceptional bravery, he was trying to be positive and he was succeeding in keeping his sense of humour. The doctor who had diagnosed leukaemia explained: "Today will be the worst day of all. Followed by the day when I may have to say that he has relapsed." He talked about the possible need for a bone marrow transplant. I thought about year after awful year of hospitals. There was a poster on the wall saying: `You thought it would never happen to you. Give generously to the Leukaemia Research Fund.'
Daniel was put in a single room "For very sick children", and given a transfusion of blood platelets because his own blood would no longer clot. He managed a joke although he was pale, weak and his chest was heaving. So ill, so loved. I stayed until he slept, and travelled the couple of miles home. After a bad night, John and I both wanted to go to hospital early in the morning. But we decided that for the sake of our older son, we would always overlap only briefly at the hospital, so that one of us could be at home. For the first few months we gave up work and a normal family life. When I arrived on that first day of treatment, Daniel told me how lonely it felt to wake and find himself in hospital with leukaemia.
It was vital to keep busy, to try to push any debilitating, negative thoughts away. We borrowed video games for Daniel. He was too ill to read books, but John found him a new comic every day, and arrived with gossip, jokes and photographs of the dogs, our cat and the life Daniel loved outside hospital. Nurses soon found that he was a patient who would make them laugh. The World Cup was on, so he impersonated the commentary team to lighten the gloom. But there were many bad moments during his summer in hospital and the two years of outpatient treatment that followed.
The early chemotherapy made him sick and low. His eyes often turned sad - sad not only for himself but for those he loved. One bad day he told me: "I wish I were dead. Why did it have to happen to me when there are 150 others in my year at school." The only other person he had known with leukaemia was a boy of about his age at school, who died soon after diagnosis. I found I could be strong when I was with Daniel, but would go to pieces at home. I felt at one point that if Daniel died I would want to die too. But at least I had the choice.
I was ashamed of my bitter, negative feelings. I constantly thought that he would die, but have since learnt that this reaction is normal. At first most parents mourn, which doctors feel is better than pretending that it could never happen. It is also normal to feel guilty. I worried that the leukaemia was caused by food I had given him, by stress or by the chemicals used for treating woodworm in our house. One doctor told Daniel that parents always over-react and that he should persuade me to go back to work. He claimed he was more worried about me than Daniel. But I wondered if this was a technique to make Daniel feel stronger and more in charge.
Daniel and I had lovely, long chats. "One thing about this awful disease, Mum, is that it's made us even closer," he once said. As he became sicker, so too did his humour: "Lose weight with the new, wonder leukaemia diet." Aids was in the news, so he worried about getting it from the blood transfusions. He fainted in the bath. There was blood in his vomit. The constant chemotherapy became too much at times. "I often feel like pulling out the line and walking out of hospital. But then I think I'd only die," he said. I read journals to find the answers to his many questions about leukaemia. The staff were terrific, but the doctors were too busy to tell him much, until a Sri Lankan took over his case. She gave him time, information, warmth, hope. We will always love her.
Parents pulled together through collective grief, shopping, making tea for each other, and pouring out worries on the hospital corridor. Everyone was affected when a baby died. Someone said: "This is like death row." I wondered how much worse it would be to lose a much-loved teenager. One anxious mother always counted the pills before allowing nurses to treat her daughter. She recognised me from my TV job on Tomorrow's World and said: "What on earth are you doing here? I thought people like you sailed through life." As I started to feel more calm and positive I noticed that Daniel's visitors had hurt faces, sad eyes. Strong men and schoolboys walked away in tears. But these friends were essential because they used their different talents to lift his spirits. An artistic friend brought paintings of Daniel's beloved saxophone, a sports correspondent gave him a football signed by the England team, a religious friend started prayer groups, and people cooked, in one case a whole car-full for the freezer. We received wonderful letters that gave us strength, but some friends did nothing, unable or unwilling to cope with our trauma. It has taught us to give support whenever possible. Silence is wounding.
Towards the end of the first course of chemotherapy, the doctors broke their silence with the marvellous news that he had responded to the treatment, and was in what is called remission. Although he knew there were years of treatment ahead, Daniel decided from that moment that he was "cured" and became extremely positive.
He came home briefly between the two course of chemotherapy and had to face the world as a pale, thin, tall and hairless teenager. People stared at us when we went out shopping for hats to hide the baldness. He let out a maniacal laugh: "You and I are a pair of freaks. People stare at you because you are on TV and at me because I am a freak with no hair''.
The second course of chemotherapy was more difficult than the first. He thought it was unnecessary. He was convinced he was already cured. It was experimental, and my decision that he should go through with it was the most difficult I've ever had to make. I had refused to let the doctors put him into random trials, insisting that he should have the most appropriate treatment. But at this time no-one could know for sure what that should be. After a month of intensive chemotherapy his immune system would not bounce back to the level where it was safe to leave hospital. But on the day when he was told he might spend weeks more inside his small, hot, hospital room, a blood test showed he had made a sudden recovery and could go home immediately. His band were playing at the school's garden party that evening. He led them. There were few dry eyes.
After radiotherapy to the brain, two years of outpatient chemotherapy began, with regular injections and blood tests at hospital. These tests were routine, but each one was a potential harbinger of doom. The blood counts, the numbers for haemoglobin, platelets and white cells that add up to life or death, dominated our life. They are all there still at the back of my diary. The steroids, which Daniel took for one week in four, made him restless, aggressive and unable to sleep. The drugs had nasty side-effects and when he failed a music exam because mouth blisters stopped him playing his saxophone with any subtlety, he fell apart. It was his lowest point.
A few ignorant people made life more difficult. The yobs who knocked his cap off when he was on the way to school and jeered at his bald head. The families who turned him down for French exchange with their sons. The journalist who tried to sell a sob story about us after pestering everyone at our home and work. And the people at the Ann Frank Museum in Amsterdam who assumed the worst of him when they saw him by a poster illustrating the return of anti-Semitism today showing photographs of young, shaven-headed neo-Nazis.
When he went back into hospital to have his own bone-marrow taken for freezing and storage just in case the leukaemia returned, it was depressing to be put on a small ward with terminally-ill adult patients. We tried to distract him from the misery. I stuck a Sony Walkman on his ears as he came round from the general anaesthetic after the operation and I got him out of the hospital that evening. He was on a train to Manchester the next morning when he should have been recovering from the painful operation. His band were playing there at a Valentine's Day Ball. As usual, Daniel just wanted to get on with life. He continued to be positive. After two-and-a-half years of treatment and two-and-a-half years of further tests, Daniel was cured. Like many others who get through leukaemia, he is determined to make the most of life. As a nurse working in this field told me: "They will always be special, more mature and giving than other children."
Judith Hann is donating the fee from this article to the Leukaemia Research Fund ...TEXT: There are more and more success stories like Daniel's. Twenty-five years ago few people with leukaemia survived. Today, 75 per cent of children with acute lymphoblastic leukaemia are cured. Tonight on BBC1's Watchdog Healthcheck (7.30pm), Judith Hann talks about new research that will improve that figure. Much of the research is paid for from donations to the Leukaemia Research Fund. Please send anything you can spare to them at 43 Great Ormond St, London WC1N 3JJ. It could save another life.Reuse content