When Jack Parton started experiencing back pain and tiredness, doctors initially thought it was due to grief.
The 12-year-old lost his twin brother Ben to a brain tumour just a few weeks before.
But just a fortnight after Ben’s funeral in December last year, the family were given the heartbreaking news that Jack had leukaemia – a type of blood cancer.
The boys’ mum, Julie, 51, from Cannock, Staffordshire, said: ‘It’s almost impossible to put into words how horrendous this has been.
‘Having gone through everything with Ben and, just as we were grieving his loss, it was a hammer blow to find out only two weeks after his funeral that Jack was also fighting cancer.’
The boys were revising for their SATs in March last year when Ben started to complain about headaches.
Soon he was also vomiting but his mum thought he’d caught the sickness bug going around school. When it didn’t get better, she took him to hospital.’
She explained: ‘We were waiting for an appointment at the opticians but I took him to the urgent care clinic at Walsall Manor Hospital where he was checked over and we were reassured to be told he had gastroenteritis.
‘The sickness would stop and start again a couple of days later and by mid-April Ben had lost quite a bit of weight and was struggling to move his right arm so it was back to urgent care where I was told, once again, it was a stomach bug. We were given antacid medication and told to seek a paediatric referral through our GP.
‘I felt everyone was dragging their feet and, with Ben still poorly, I took him to A&E once again where we were told his blood results were fine and we were sent on our way.’
Just four days later, Ben collapsed and the family had to call an ambulance. He was given a CT scan, which showed he had a brain tumour.
24 hours later, he had surgery to remove the tumour and a biopsy revealed he had a grade 4 glioblastoma multiforme (GBM). Sadly, his family where told just 20% of patients live beyond five years of their diagnosis.
He was scheduled to have radiotherapy four weeks later but a scan before showed the tumour had already grown back, which meant more surgery.
Ben started 30 sessions of radiotherapy on 3 July followed by four cycles of chemotherapy in September, but by the second round, it was clear the treatment wasn’t working.
Sadly, the cancer spread and Ben passed away eight months after his diagnosis in December 2019.
The heartbroken family prepared to lay Ben to rest but at the same time, Jack started to feel very tired.
Doctors thought it might be the post traumatic stress of losing his twin but genetic testing raised the alarm.
Julie explained: ‘During Ben’s many tests it had been discovered that he had a genetic disorder which meant his TP53 gene, a tumour suppressor, was faulty.
‘And it was during screening to see if Jack was similarly affected that the alarm bells started to ring. We were told that his symptoms were not neurological so, mercifully, he didn’t have a brain tumour.
‘However, when we were immediately recalled to the hospital and told to bring an overnight bag, I was so scared.’
Jack had to have treatment at Birmingham Children’s Hospital, where his brother had gone just the year before.
Amazingly, Jack is now cancer-free but will have to stay on chemotherapy tablets for two-and-a-half years to stop it coming back.
Julie said: ‘All things considered, Jack is doing well although some days are incredibly tough. He misses Ben so much and would give anything for them to be on PlayStation together.’
She is campaigning with the charity Brain Tumour Research and is urging people to make a difference by signing a petition to increase the national investment into brain tumour research to £35 million a year which would bring parity of funding with other cancers such as leukaemia, breast and prostate.
‘Thanks to the investment in research, Jack and other leukaemia patients now have hope of a cure. Ben was not so lucky, he never really stood a chance,’ Julie said.
‘Historically, just 1% of the national spend on cancer research has been allocated to brain tumours and treatment options remain very limited and survival rates very poor.’
According to Brain Tumour Research, more children and adults under the age of 40 die of a brain tumour than any other cancer
Since national cancer spend records began in 2002, £680 million has been invested in breast cancer, yet only £96 million in brain tumours – a difference of £35 million a year over 17 years.
Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours.
The charity is calling for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
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