JAMIE INGLIS would love to join the children in the colourful playroom on the other side of the hospital corridor.
He would like to play with his new friend, Ryan, who he has painted a picture for and who has waved at him from the doorway but who wasn’t allowed to come in. He would like to spend longer looking for spiders outside.
Instead, to guard against possible infection and to stay near to medical treatment, the seven-year-old spends every day in the sunny bedroom that could belong to any boy if it wasn’t for the drip, monitors and medical equipment standing alongside his Batman posters, bright paintings, action models and cuddly toys.
Jamie has a little more freedom than a few weeks ago when, for a month, he was kept in isolation in a sealed room, which his parents had to be disinfected and wear gowns to enter.
Now, as long as he puts on a mask and a hat to protect him from the cold, he is allowed to slowly pad through the hospital corridors on legs weak from not walking, and travel the short distance to the hospital-owned Elternhaus where his parents, Vicky and John, are staying close to the children’s hospital in Tubingen, near Stuttgart.
Jamie is undergoing pioneering treatment that could save his life, but which is unavailable in the UK. The medical trial, led by world expert Professor Peter Lang and his colleagues, has seen John’s stem cells transplanted into his son’s system in order to create a new immune system to help his body fight the cancer he was first diagnosed with at the age of three and which returned this year.
There can be fewer more charming children than Jamie, whose beaming smile wins the hearts of everyone he meets, from his nurses to the hospital teacher.
An inquisitive and happy little boy, he has watched a YouTube video to understand how the IV line, which feeds him morphine and food supplements through an artery in his chest, works. And he will readily show visitors his mouth to show how the ulcers caused as a side effect throughout his digestive system as a result of the treatment have begun to heal. He understands he is in hospital because of the “bad cells” and admits he has been “fed up” but adds that the new stem cells will make him better.
It is a strange and stressful life for Vicky and John, whose three-year-old daughter Poppy is staying with her grandparents in Oxfordshire while they seek the only treatment available to their son aside from palliative care. While they know there is no official cure for neuroblastoma, medics in Tubingen believe they are making significant progress in prolonging the lives of children who have suffered a relapse and in reaching a cure.
Every day, the couple arrive at the hospital when Jamie wakes up and stay until he goes to bed, when they return to the Elternhaus to eat, sleep and start again.
“In the background of this we have to think of our mortgage, bills, our daughter,” John said, “It comes at a price. We accept that, but it does put a strain on things.
“Although it can be very isolating, you do not feel alone because there are so many people in our position.”
It was while Vicky was pregnant with Poppy that a doctor found a lump in Jamie’s stomach.
After being referred to the hospital, Vicky and Jamie found the room suddenly full of men in white coats – medics had found a 20cm long tumour and the pair were put into a taxi, to be taken for urgent treatment, with a nurse who Vicky recalls had tears in her eyes.
Jamie went through the treatment in hospital in Germany, where John was serving in the Army, before his family and friends raised £350,000 for pioneering treatment in the United States in 2010. The treatment appeared to work, but the family suffered a devastating setback earlier this year when a tumour that caused paralysis was found on Jamie’s spine.
It was removed, but he had to learn to walk again. With the help of wellwishers, including Jamie’s schoolfriends at Lord Deramore’s Primary School in Heslington and neighbours in Kelfield, they are now fundraising to make £250,000 for the German treatment.
“For Jamie to have such a long period of remission, it’s so cruel that after all that time it came back and that was what I found really hard at the beginning,” said Vicky, a teacher at Derwent Infant and Junior School.
“We are taking that life that he is enjoying – all of that has been taken away again.
“We would do anything within reason – you have to judge the quality of life that he’s got and balance it with the risk of not doing something.
“We know there isn’t a cure but what we do know is that things are moving so quickly in neuroblastoma research that every couple of months there’s something new on the horizon that people are talking about and if we are able to keep Jamie’s health at the level, that means that one day another option should be available should we need it... he has still got options.
“As parents, we have gone into this not thinking there’s a cure, but if in a couple of years it turns out that this is it, this is what is going to stop it in its tracks, then...”
“He’s a tough little lad,” John said, “We’re still here and still fighting, albeit the second time around. He is doing well. Some kids with the disease, it progresses very quickly and some children don’t seem to have fight in them. Some kids, they may get it time and time again but they come back fighting.
“We’ve seen other families fall by the wayside. It’s very saddening and sometimes it’s very demoralising... you have try and separate yourself from that and be positive. The way we feel now is we know there’s no guarantee but it may have a positive outcome.
“We were very frightened to put Jamie in this position but we know that by not putting him in it, the risk of this cancer coming back and being even more drastic or aggressive than it was before – and most oncologists would agree – is fargreater than doing nothing. The best case scenario is that it cures the disease. The second is that it might buy him some time. For example, in taking him to the States that probably bought him 18 months and in that time he went to school – you can’t put a price on it.”
John and Vicky said they felt constantly torn between obligations. John has worked in occupational health and safety for the Forces for 22 years, but will leave next month. They think about Poppy all the time, wondering what she is doing and about how to give her the most normal life possible.
When the family arrived in Germany the weather was swelteringly hot; now the trees on the forested hills around Tubingen are turning colour but the family still has no idea when they will be able to return to the UK. They had thought they might be able to return to see Poppy and to go home briefly in a break between treatment, but Jamie needs to start eating before he will be allowed to even stay the night with his parents at the Elternhaus.
“He used to love his food but he can’t taste anything,” John said. “Everything tastes like paper.”
They watch anxiously and cheer encouragement as their smiley little boy proudly eats macaroni cheese and then a few bites of roast dinner, a momentous occasion for the family, which brings them papable joy and relief.
“In our world it’s like walking on the moon”, John said.
Little guy who ‘runs on kryptonite’
The MEDICAL trial being conducted by the doctors in Tubingen involving Jamie and a small group of other patients could prove to be a major breakthrough for sufferers of neuroblastoma, one of the most common childhood cancers.
It currently has no proven cure but it is hoped the work will lead to the trial being introduced on the NHS, experts have said.
Jamie’s parents, John and Vicky, are disappointed that the NHS has refused to offer any financial contribution, only offering Jamie “palliative care” and leaving them to raise £250,000 for the German treatment.
Jamie has pleased doctors with his progress through the first gruelling stage of the treatment of chemotherapy and having his father’s stem cells transplanted into his system to create a stronger donor derived immune system.
Mr Inglis, pictured, said: “We’re just spectators really. Jamie is the one who has survived, which is astonishing really with all the odds stacked against him. He’s a little guy, but he runs on kryptonite.”
Mrs Inglis, a teacher at Derwent Infant and Junior School, said: “He has got through the most difficult part. The most unpredictable part was the conditioning (chemotherapy) and the stem cell therapy. To get through that is what we were aiming for.
“Our doctor said it could have been very different in response to the transplant. Jamie has kept really well. He is on track.”
To keep Jamie safe from infection during the process, he has spent a month in an isolation ward, able to spend time with his parents only after they had been disinfected and had put on medical gowns.
The next stage of the process, which is specifically for relapse patients, is due to begin in a matter of weeks and will see Lord Deramore’s Primary School pupil Jamie have a week at a time of antibody treatment which will attack the tumour cells, making way for the natural killer cells in the blood to bind to tumour cells and remove them.
Experts in the UK are watching the progress of Jamie and his fellow patients with interest. Jamie’s oncologist at Leeds General Infirmary, Dr Martin Elliott, said if it was successful, the UK was likely to join the trial, offering NHS places for a small number of patients.
John and Vicky have been overwhelmed by the support they have received so far and are hugely grateful. Donations can be made at justgiving.com/jamiesappeal or by texting JAMY99 and the amount to 70070 – eg, JAMY99 £10.
•The Press would like to thank the Holiday Inn Express Stansted Airport for its support.
•On Monday, Kate Liptrot speaks to the medical expert bringing hope to families around the world.