A dad-of-four whose neck pain was originally diagnosed as a pulled muscle when in fact it was a rare form of cancer has been given just a year to live.
Jack Willis, 33, from Boughton Monchelsea, near Maidstone, was given the devastating diagnosis only days after he thought he was in remission.
His heartbroken partner Kayleigh Barnes, 37, said he first started experiencing pain in his neck in July last year.
“The doctors put him on some strong pain relief at first which took the edge off for a couple weeks but it flared up again.
“He started being sick and getting dizzy spells so he went to A&E at Maidstone Hospital.
“He was just told he was taking too much of the pain relief but he was only taking what he had been prescribed.”
By November, he had collapsed twice so when it happened a third time Kayleigh called an ambulance.
He collapsed again while paramedics were there and they took him to hospital as he was grey and was vomiting.
Kayleigh explained: “A couple hours later he rang me and said he needed picking up and was told he had an ear infection so he was put on antibiotics and anti-sickness medication.”
Soon after, he collapsed again so she took him back to A&E and told them she was not going to leave the hospital until they gave him a CT scan.
“They said he didn’t fit the criteria but in the end they sent him round to the CT unit,” she said.
“At this point Jack was crying in excruciating pain. It was all in the back and side of his head.
“I had to pop home because of the children and Jack rang me an hour later and said he had a mass on his brain and needed to be blue-lighted to King’s College Hospital to do an MRI.”
When he arrived at the London hospital he was told he had so much fluid on his brain that it was a “miracle he was still standing”.
On December 1, Jack, who is a truck driver, underwent emergency surgery and had 750ml of fluid drained from his brain. A week later he had a biopsy in the back of his head.
Kayleigh said: “When he was in recovery he told me that everything was fine and they’d taken the tumour out, but a few days later the neurosurgeon said what Jack had told us wasn't completely right.
“They then told us Jack had CNS lymphoma cancer in the brain and it had wrapped around his brain stem. The treatment wasn’t to cut it out but to undergo intense chemotherapy so we started that.”
CNS lymphoma is a rare cancer that affects your central nervous system.
After coming home in February, he collapsed again and went back to King’s. He had blood clots on his lung, knee and thigh and was bedbound.
“He had to be in a wheelchair and learn how to walk again,” Kayleigh said. “He missed his little girl's birthday and Christmas.
“He had five or six rounds in intense chemotherapy and went on to have a stem cell transplant on May 30.”
Afterwards he came back home and “bounced back”. He learned to walk again and was going on bike rides up until last week.
He had an MRI in May after experiencing head pain and the hospital found a greyish area in his brain.
However, medics were not able to confirm whether or not the lymphoma was back or if it was damage from the treatment he’d had.
Kayleigh said: “We went to King’s for another MRI and the radiologists said the same, that there was an area on the front lobe they could see that they were unsure of but the neurosurgeons reviewed it and said they had no concerns.”
On September 6, Jack was told he was in remission and the family celebrated his 33rd birthday on September 11.
However, two days later he started feeling unwell again and couldn’t feel his leg. He ended up having a seizure.
Kayleigh said: “I called for an ambulance but they said they wouldn’t be able to get there for hours.
“I waited for the convulsions to stop and my neighbours took my children in for me and I got him to A&E. They did a CT scan and the grey area came up again and they put him on steroids and anti-seizure medication.
“We came home and I contacted his CNS lymphoma nurse from King’s and she told me it sounded like the lymphoma was back.”
On Friday, September 14, the family got a call to say the cancer was back in three places in his brain.
The next treatment option for Jack is radiation, however Kayleigh said: “It’s not a cure it’s just to prolong him being with us for as long of possible and it will shrink the lymphoma down.
“His time here with us is limited, maybe a year if we are lucky, and as you can imagine we are all devastated. His children's hearts are broken and we are a complete mess.”
The family have set up a gofundme to raise money to spend days together and make memories.
Jack is dad to Maria-Rose, three, and Archie, six, as well as step dad to William, 11, and Henri-John, 15.
Kayleigh said: “We’d love to go to Chessington with the children and stay overnight in the themed hotel.
“Jack’s going to do an indoor skydive at Bluewater with his brother and cousin next week. We just want to spend the time together while Jack’s still able to.
“My 15-year old is absolutely devastated, they all are. My middle son William is finding it quite hard to deal with, our little boy Archie who’s six just keeps saying he doesn’t want his daddy to die and that he wants him to be here forever.
“Maria-Rose is only three so she knows something upsetting is going on. The other day she broke down and cried and said ‘please daddy don’t leave me’. They’re all just quite scared, and I think it’s not knowing when it’s going to happen and when he’s going to deteriorate.”
The couple say they feel let down by the A&E service at Maidstone Hospital as well as their GP.
Kayleigh explained: “They should be looking into things more deeply. The cancer may not have spread into his brain and caused a brain tumour if they caught it earlier.
"To go four months before you find out what’s wrong is a long time, it affected him working and having time with his children.
“Our focus now is to have happy times with what time Jack has with us before he deteriorates and to take our children out for family days and cherish every moment.”