Children often come home from school with bruises or a cough or cold they can’t seem to shake off. Most of the time it’s nothing to worry about.
But sometimes, as the parents of five-year-old twins Jamie and Zakk Cornish found out, it is. Sheena Grant reports.
A year ago Michelle and Chris Cornish were preparing for the holiday of a lifetime with their five-year-old twins, Jamie and Zakk.
The boys had had charts on their bedroom walls for ages, counting down the months, weeks and finally just days until they jetted off to Florida for two weeks at Disney World. As the time ticked down, the sense of expectation in the family home at Clapgate Lane, Ipswich, was tangible.
There was just one slight cloud. Jamie had been a bit off colour for a couple of weeks with coughs, colds and “general achiness”.
They’d been backwards and forwards to the doctor, says Michelle, but Jamie wasn’t getting over it.
He’d also got bruises on his legs that his parents put down to playground rough and tumble. But when he came out in a purple rash around his shoulders there didn’t seem to be a harmless explanation.
“The first thing that came to my mind was meningitis,” says Michelle. “I pressed a glass onto the rash, like they advise, and it didn’t go away, so we took him straight back to the doctor. She said she thought he’d been coughing so hard the blood vessels under the skin had broken.”
Chris sat his son down for a chat. Jamie had been saying for a while that children at school were being mean to him. But on closer questioning it turned out this “meanness” was actually his friends telling him he was now too slow to keep up with their games.
“That is when we realised things weren’t right,” says Chris.
“We took him back to the doctor, who examined him. They said he needed to go to hospital and asked us to wait outside, which should have been a clue...”
So unprepared were the family for what was to follow that even when they were sent by ambulance to Addenbrooke’s Hospital, Cambridge, that same day, they were still thinking they’d be back home again soon.
“We thought he’d be out in a couple of hours,” says Michelle. “When they called us in to give us the diagnosis I thought they were going to say he was anaemic and they would give us some medicine to sort it out.”
Instead, Michelle and Chris were told their bright little boy with the mischievous grin had acute lymphoblastic leukaemia and would have to start treatment immediately. The holiday was off. But that was the least of their worries. “It was a huge shock,” says Michelle. “The first thing you think of when you hear the word cancer is death.”
But they already knew Jamie was a fighter. He and Zakk had been born nine weeks prematurely and needed special care. He’d come through that, hadn’t he? And anyway, they soon learned, cancer treatment had come a long way. The survival rate for Jamie’s illness was only 20-30% in the 1970s but was now up to 95%.
Still, the enormity and suddenness of what they were facing was overwhelming.
“The diagnosis came on our wedding anniversary,” says Michelle. “I was getting congratulations text messages from people and then having to tell them what had happened. But you cope. You have to.”
The boys, meanwhile, were heartbroken that they would no longer be going on holiday.
And Chris and Michelle had another decision. How much should they tell the twins about Jamie’s illness?
“We were advised to be completely honest and were given books to help explain it,” says Michelle. “It was the best thing to do. The boys are close and have helped each other through. Just having Zakk around, having that ‘normality’ of someone to play with and get support from, has helped Jamie.”
Jamie stayed in Addenbrooke’s for 10 days, having high-dose chemotherapy and a so-called Hickman line inserted, which stays in place long-term to make giving intravenous medicine easier.
There was also the issue of trying to keep the family together when Jamie was having such intensive treatment miles from home. One parent could stay by Jamie’s bedside in those first days and, thanks to the Sick Children’s Trust, they were also given a family room nearby.
More help came from CLIC Sargent, a charity providing support for children with cancer and their families, which gave a £170 grant towards the family’s travel and other costs. In the months since, it has also provided a social worker to help Zakk cope with his feelings of frustration about what has happened to his brother and specialist nurses who come to the family home to give treatment, avoiding unnecessary hospital visits and helping life establish a new normality. Michelle says: “It was simple things, such as paying for hospital parking and buying Jamie every sort of food he craved. One minute he would love something and the next he would hate it. It was a real struggle to get him to eat and keep weight on.
“Even something as simple as nurses coming here made such a difference. They would even come on a Saturday and Sunday and give Jamie his medication so we wouldn’t have to go to the hospital. I don’t know what we would have done without them.”
Chris adds: “CLIC Sargent and other charities do invaluable work supporting the NHS, which has been fantastic but can’t do it all on its own.”
In the early days, Chris, who works in local government environmental health, considered leaving his job but luckily his employer was supportive and allowed him time for Jamie’s needs, as did Michelle’s local government employer.
“When this is all over we want to get back to a normal life,” says Chris. “I realised that in the long term it wouldn’t have helped the family if I left work. CLIC Sargent has helped so much.”
After Jamie’s initial stay at Addenbrooke’s he returned home and has had out-patient treatment ever since.
“The first six months were intensive,” says Chris. “We go back to the hospital much less frequently now – unless he gets a temperature over 38C.”
But the treatment, even the oral medication given at home, was gruelling.
“When we first came home, Jamie said he wasn’t going to have any more treatment,” says Michelle. “We had to tell him that if he didn’t take the medicine, eventually he would die. Everyone got upset and when Jamie realised we were all quite sad about it he changed his mind. He’s adapted pretty quickly, really.”
The constant treatment and uncertainty makes planning life difficult. The family have ventured as far as Center Parcs, at Elveden, but even then Jamie got a sudden temperature and had to spend the first night of the break in West Suffolk Hospital.
“It turned out to be just a cold,” says Chris. “That’s one of the biggest effects on us now. You put off booking things socially because you don’t know what might happen. The kids should be staying with grandparents at this age but haven’t been able to, and that’s hard on everyone.”
But spending just a little time with Chris and Michelle at their home, where the boys’ school pictures adorn the sitting room and the odd toy Nerf dart litters the floor, it’s plain to see how they have supported each other through the last year.
“It’s important you remember each other as well,” says Chris, when I tell him how united they seem.
“It doesn’t work like that for every couple, though. The statistics show massive divorce rates for parents of children with cancer. The pressures cause people to lose their jobs and even their homes.”
The couple’s ninth wedding anniversary was on Wednesday.
And things are definitely looking better than on their eighth, when Jamie’s illness was diagnosed. Jamie, now six, is back at Cliff Lane Primary School full-time and can even play football again. Best of all, from December last year his leukaemia has been in remission. The family even have a date for his final treatment, if all goes well: December 16, 2016.
“It still seems a long way in the future but at least we’ve got a date,” says Michelle.
And, needless to say, top of everyone’s agenda when that date comes is something the boys still ask about constantly: their holiday to Florida.
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