An end to fear and loathing

19th December 2003 at 00:00
You can't catch it from someone else, and your chances of surviving it are good. Two facts about childhood cancer that pupils are being taught in an education programme aimed at heightening awareness of an illness that affects one in 600 pupils before the age of 15. Rachel Pugh talks to a young sufferer, now fully recovered

Minus his hair, his face puffy from drugs, 11-year-old Tom Morrissey returned to school after his first treatment for leukaemia, resigned to being mocked and having his hat stolen. But nothing prepared him for the day a teacher confiscated his headgear.

"He had given me two warnings about wearing a hat in school," explains Tom, now 13 and fully recovered following a bone marrow transplant. "But I did not dare tell him why I was wearing it, because I had only just started in Year 7."

This incident (for which the teacher later apologised) and others - which saw his blue Manchester City hat kicked into the mud and Tom jostled by older pupils in the school corridors - came to a swift end the day his elder twin sisters, Lucy and Anna, decided to take matters into their own hands and to tell their year group exactly what Tom, they and their family were going through.

Standing in front of a silent assembly of 200 14-year-olds at Tytherington high school in Macclesfield, Cheshire, the two girls talked about the impact of the cancer diagnosis on their family, about the treatment Tom was having, the bone marrow transplant he would need, and their anger at the bullying. Teachers and pupils alike wiped away tears as the twins told of their fears that their brother might die.

Lucy, now 16, explains: "We just thought that if we could tell everyone all together it would save us having to tell people in bits. After that, things were different at school."

Word spread throughout the school. Tom acquired himself a "minder" in the form of their next-door neighbour Nick Thompson, from the same year as the twins, who made it his business to keep a watchful eye at break times.

Between lessons, boys in Tom's class took the initiative and took up positions in front and behind him to prevent him falling on the stairs when radiology treatment caused him joint problems. The school immediately became involved in fundraising for cancer.

Macmillan Cancer Relief's Cancertalk education programme is designed to prevent the kind of difficulties Tom and his sisters faced in school, by helping teachers to talk about cancer with their pupils. A new pack includes information about cancer and Macmillan Cancer Relief, plus two videos - one aimed at primary-aged children and the second one of case studies (including Tom Morrissey) designed for 11 to 16-year-olds.

When Macmillan produced a trial pack two years ago the organisation was inundated with more than 6,000 requests from schools. Since the pack was completed in June, it has had more than 3,500 requests. Maureen Rutter, director of Macmillan's East Midland and Northern region, says: "It comes down to the fact that four out of 10 people will get cancer, and we cannot ignore the issues and the impact on children - to do so is a cop out."

The expanded Cancertalk pack is in response to nationwide research by the charity following the first pack, showing that 98 per cent of teachers believed it was important to teach and talk about cancer despite their own fears. Research also revealed a need to combat ignorance about cancer among young people. Around 74 per cent of 12 to 14-year-olds believe cancer always kills (70 per cent of childhood cancers are curable), and 20 per cent believe it is contagious.

Tom's parents - Paul and Alison Morrissey - say Cancertalk should be used regularly in schools, if only to increase awareness of how a family whose lives are turned upside down by a cancer diagnosis has to cope.

Tom's diagnosis of acute lymphoblastic leukaemia (ALL) came out of the blue in the half-term just after he had started secondary school. He seemed well at the time, but he and his sisters had been taken to Royal Manchester Children's Hospital for their annual check for an inherited blood condition, when doctors told Paul that Tom's results were not normal and they suspected leukaemia.

Further tests confirmed their fears. "Your first reaction is disbelief, followed by shock, then you go into autopilot," says Paul, a toxicologist by training.

Suddenly their healthy boy was fighting for his life. Although ALL has a survival rate of more than 70 per cent, Tom did not go into remission as predicted after two weeks of treatment, but teetered for an agonising seven weeks. The slowness of his response made doctors decide to give him a bone marrow transplant. Anna was a 95 per cent match and was therefore the donor.

During the months of treatment following diagnosis, Tom's parents were determined to keep life as normal as possible - which included school work.

Getting busy teachers to remember to send work was not easy, and for some months he had a home tutor. Tom's lifeline with his classmates was via email. Close friends frequently came round to "hang out".

Tom's transplant was successful and he returned to school full-time 11 months after his first leukaemia diagnosis. His parents are awaiting the five-year follow-up before putting the episode behind them.

At Tytherington high school, the first Cancertalk pack was used with Year 7 pupils to prepare them for dealing with a Tom who looked different and often felt unwell. Tom's former year head, Colin Rowe, says: "Tom was the first child in the school who had suffered from cancer and we found it very helpful. We needed to raise awareness among the kids - some of them thought they could catch cancer from Tom."

The presence of a very sick child in their class, sometimes sporting a Hickman line - a catheter surgically implanted in the chest - to deliver chemotherapy into the blood stream, is the most terrifying aspect for teachers, according to doctors, which is why many medics welcome the opportunity Cancertalk offers to demystify the subject. Consultant paediatric oncologist at St James' Hospital Leeds Dr Sue Picton wishes more teachers would come into hospital to visit children with cancer. "There's a lot of ignorance out there," she says. "It is easier to talk about cancer than it used to be because some of the TV soaps have used cancer in their storylines, but we are faced by parents who ask us not to use the word to their children even though there are signs using it all round the ward. We try to be upfront with the children and we wish schools and parents would be the same.

"We should be giving out a positive message that children with cancer are likely to survive, and have every likelihood of being very normal."

Macmillan Cancer Relief's Cancertalk packs consisting of videos of Jenny's Diary and Living With Cancer are available free to teachers. Tel: 0845 601 1716. For more information and downloadable lesson plans, visit:

Cancer and children: the facts

* Childhood cancer is comparatively rare, affecting one in 600 children before the age of 15 (compared with one in three adults). Around 1,450 children receive a diagnosis of cancer every year in the UK.

* Survival rates have improved dramatically. Currently, the number of children who make a complete recovery stands at around 70 per cent across all the forms of the disease. This compares with an overall survival rate in the early 1960s of less than 30 per cent.

* The improved survival rates are the result of factors including the introduction of combination chemotherapy in the late 1960s and early 1970s, the development of swift methods of delivering cancer drugs into the body, such as the Hickman line, and the centralisation of specialised care.

* Around 300 children died from cancer in the UK in 2000. Between the ages of five and 14, the death rate from cancer is highest, representing one in five deaths in this age group. Successful treatment has more than halved the number of childhood deaths over the past 30 years. In 1969, there were more than 850 deaths.

* The type of cancers suffered by children are different from those of adults. They look different under the microscope and react differently to treatment.

* Many of the more common childhood tumours, such as neuroblastoma (cell pictured above), occur in emybryonal tissue.

* Leukaemia is the most common childhood cancer, accounting for 32 per cent of cases. Brain and spinal tumours account for 23 per cent.

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