It's easy to look back with hindsight on the changes in Adam's behaviour that began during early 2009 and wonder whether we should have realised earlier that something was wrong. He would complain 'I've got my tummy ache again' when he didn't finish his meals. He would regularly wake several times during the night and need taking back to bed. But he was a 5 year old boy who was in his first year at school and having two other older children we knew that kids went through these sorts of phases. So we put it down to starting infant school and part of growing up and got on with our daily lives. Hell, we even got cross with him for not eating his dinner and for waking us up several times a night.
Of more concern was the swollen gland in Adam’s neck just above his collarbone. It was clearly visible beneath the skin, about one inch in diameter. The first time it appeared during the night and had all but disappeared by the following morning. Over the next couple of weeks Adam was off colour and eventually developed bright red cheeks. He was diagnosed with slapped cheek – a condition that most parents encounter at some time or other – and we attributed the gland to the onset of this.
The following month Adam appeared at our bedside one morning announcing ‘my swollen gland is back’. Again it reduced, this time over a period of a few days. However, a week later in mid-June 2009 it returned once more and this time we took him to the GP. She was rather puzzled and immediately arranged an appointment with the paediatric day unit at Epsom Hospital for the following day. That appointment was unremarkable except for Adam refusing to relax his tummy muscles so the doctor could feel around his abdomen. Blood tests showed an increased CRP count - a general marker for infection, and he was started on antibiotics. A second consultation to re-assess his condition was scheduled for two weeks later.
It was around this time that Swine Flu mania was at it's height and more and more cases were appearing in the press each day. On Thursday 2nd July the government changed UK policy from containment to treatment, which meant that individual cases were no longer tested and confirmed. Diagnosis was instead made by comparing against a list of potential symptoms. During the following week Adam's older brother developed some of these symptoms and was started on Tamiflu. When Adam also developed a temperature and became visibly unwell he too was diagnosed with probable Swine Flu and prescribed Tamiflu.
Whilst his brother's condition improved with Tamiflu, Adam's did not. One night that week he appeared at our bedside in the early hours with chest pains and having difficulty with his breathing. After calling NHS direct we dialled 999. The attending paramedic was less than enthused about being called out to a suspected Swine Flu patient but nonetheless performed all the necessary checks. By the time he had finished Adam's condition was much improved. It was agreed between ourselves, the paramedic and the doctors in A&E that Adam should not be taken to hospital. His condition had improved and there would be complications at the hospital because of the risk of Adam spreading Swine Flu. At this time there was much talk in the press about the side effects of Tamiflu in younger children and Adam’s symptoms seemed to fit with this idea.
Nobody ever mentioned neuroblastoma; nobody ever mentioned the 'C' word at all.