When Vicky Weaver told her nine-year-old son Jack he had a tumour in his spine, he asked her if that meant he was going to die. She replied: “No Jacky, no, it might be terrible and you might feel unlucky, but look - you’re still here.”
It was a conversation Vicky had been dreading. Jack, now 10, was diagnosed with a slow-growing, inoperable spinal tumour in February 2017. For Vicky, finding out the news herself was devastating enough, but passing this on to her son was even more distressing.
“I initially didn’t want to say the word cancer to Jack,” the 42-year-old from Teesside tells HuffPost UK. “His grandma died suddenly from lung cancer and he was old enough to remember.
“I thought if I said cancer, he would have thought he’s going to die.”
However, doctors told Vicky it was important to talk about cancer directly with Jack, because he was going to see it on some of the child-friendly leaflets they gave him.
“I said to him: ‘You have a lump that isn’t meant to be there and sometimes you might hear people say it’s cancer. Some of them are worse than others and you’re lucky that your one is not likely to try and make more lumps around your body’,” she explains.
Vicky says her son took the news really well - she and her husband were the ones with tears in their eyes.
Vicky started calling the tumour Jack’s ‘lump’. “I just said they’ve done a scan on your neck and they’ve found a lump in there and it’s pressing on your nerves, so that’s causing the pain. I told him the lump shouldn’t be there, but they can’t get it out. He called it Mr Lumpy.
“I told him there are things doctors can do to stop Mr Lumpy growing and I told him: ‘Don’t worry, you’re not going anywhere’.
“He didn’t need to know worst-case scenarios and the side effects of treatment, he needed reassurance he was going to be okay.”
Jack started suffering from bad headaches and neck pain at night in December 2016. His mum took him to the doctors because he was unable to sleep, “Nothing would touch the pain, not even paracetamol or ibuprofen,” says Vicky.
At first, medical staff concluded he’d probably pulled a muscle. But as time passed the pain got worse to the point that Jack could barely move, so he was sent for medical tests.
After an MRI, doctors told Vicky and her husband they had found a mass in Jack’s spinal cord, it was cancer. “When you’re taken into a room with six people, you know things aren’t looking good,” she says. “Everyone looks at their shoes. “Our world fell apart.”
Jack was taken to hospital in Newcastle and put on a steroid drip, which immediately took the pain away. He slept through the night for the first time in weeks.
The next day, Vicky was told the doctors were unable to operate on the tumour, but could treat it. Jack was offered radiotherapy for six weeks and went every day from Monday to Friday. He had to be fastened down to a table so he didn’t move.
“The tumour could never be fully removed as it is too entwined with the nerves,” Vicky explained. We were told it is something he’d need to live with long-term and that at best the radiotherapy would hopefully stop the tumour growing or if we were very lucky, shrink it a bit. Hopefully the remainder would lay dormant.”
After a couple of months a scan showed the tumour had shrunk. A nurse suggested the family connect with Make A Wish - a charity granting wishes of seriously ill children - as Jack was in a good place health-wise to enjoy it.
Jack wished “to be a millionaire” and the charity managed to grant this by giving him a taste of a lavish lifestyle with a trip to the Suri suite in the Dorchester Hotel, London.
“He still talks about that day now,” Vicky says. “He couldn’t believe the scale of everything. When he got into the suite he was dashing around with my phone. He felt really, really special because he has always been a little bit badly done by. It really lifted his mood. He felt like a movie star.”
On a day-to-day basis, Jack’s illness affects his ability to walk and balance. He also struggles mentally and finds it hard to make friends. He has scans every four months to check the tumour and so far, there are no new signs of growth.
Vicky says things seem stable at the moment, but she knows that this can change in a day. “He has his days,” Vicky continues. “He’ll say it’s not fair that he can’t run as fast as his friends. A few weeks ago he couldn’t walk and was in a wheelchair, every time he put his leg down he had a shooting pain.”
To cope with Jack’s illness, Vicky says the family always try to stay positive. Whereas previously they may have put things off such as family holidays or trips out, now they try and do what they can because, as Vicky says, “we don’t know what’s around the corner”.