Clinical trials like the one which saved the life of Joe Johnson will push the boundaries of medical research, thanks to a multi-million pound North East childhood cancer centre.
The Future Fund, which aims to raise £5.5m to create the Newcastle University Centre for Childhood Cancer, will help continue the development of clinical trials in Newcastle which directly impact on the treatment of young cancer sufferers around the world.
The fund, which is a collaborative project between Newcastle University, North of England Children’s Cancer Research and The Great North Children’s Hospital, has gained support across the region including the mother of nine-year-old Joe who was diagnosed with childhood cancer neuroblastoma at the age of three.
Carla, from Meadomsley near Consett in County Durham, said: “He is a normal, happy boy now who loves his computer games and his Xbox. We are so incredibly close and have a very special bond because I’ve seen him go through so much and I’ll never stop asking why it had to happen to my boy.
“I should have a tree strapped to my back because I need to touch wood so often! People are always asking how Joe is and I’m always saying, ‘he’s okay, touch wood!’
“Something like this makes you realise how important family is. It gives you a real sense of perspective. I no longer waste time worrying about some things that used to really bother me. There’s just no point – life really is too short and too precious. It makes me sad that my daughter Gabbi essentially lost her mum for two years but we are all back together and that’s what counts now.
“By bringing all of the experts together under one roof the Future Fund will mean more families have an ending to their cancer story like ours.”
It was in August 2008 when Carla noticed three year-old Joe was becoming frequently tired and had started to lose weight that she found a lump in his side.
Doctors at the Great North Children’s Hospital confirmed Joe was suffering from childhood cancer neuroblastoma and a tumour had developed and wrapped around his kidney. The cancer spread to his adrenal gland and down his legs and Carla was warned his chances of survival were not good.
“At first I wouldn’t let the doctors call it a tumour, I asked them to say lump because I couldn’t bear to hear the word,” Carla said.
“In the space of a few days he went from having a normal life to starting the first of many intensive treatments. Joe had a very high risk cancer so he had to have incredibly intensive treatments. He had a reaction to one dose of chemotherapy and his liver started to back up. He was taken to intensive care and I was told that night to prepare myself because I was probably going to lose my son.
“I don’t have any words to describe how that felt. A lot of it is just a haze now. I remember being virtually carried around the hospital because I think I was in shock. I remember standing outside the hospital in the pouring rain with no shoes on. Moments are burned into my memory, like when Joe asked me how old he’d be next year and I honestly didn’t know if he’d be there to see it. You live in hope that it won’t be as bad as they fear but it Joe’s case it was the worst,” she said.
Joe’s health began to improve when he was put forward for a clinical trial run by the Northern Institute for Cancer Research at Newcastle University which investigated the treatment of neuroblastoma with the drug 13-cis-retinoic acid, which plays a key role in preventing the cancer from returning following surgery, chemotherapy and radiotherapy. He became stronger and stronger until news of his remission was finally announced. November this year will mark Joe’s fifth anniversary of his remission.
Carla said: “During the experience we had met so many families going through similar things and it broke my heart that their stories hadn’t all ended the way ours has. You see it and it almost became normal but you never get used to it and it’s the same for the staff. I’ve seen ambulance drivers break down in tears because they’ve taken a child home to die. I found it incredibly difficult to adjust to ordinary life after that kind of experience.”
Problems to overcome – but we’re seeing progress
Dr Gareth Veal, Senior Lecturer at the Northern Institute for Cancer Research, Newcastle University, said: “Over the past several decades we have seen significant improvements in the treatment of childhood cancer, with overall five-year survival rates exceeding 80 per cent now being reported. Advances have largely been made through the development of new drugs and improvements in the use of established chemotherapy treatment.
“In the pharmacology group at the NICR, we are investigating how children’s bodies process cancer drugs, and how the actions of drugs are influenced by variation in a person’s genes. By investigating differences in the way that individual patients process drugs and respond to them we can endeavour to improve the beneficial effects of the drugs for every patient.
“In the study that Joe took part in, which was published in the scientific journal Clinical Cancer Research, we found that in three quarters of cases the patients were achieving drug exposures which may not be beneficial.
“The study showed that, when given a standard dose, some patients were achieving levels of drug in the bloodstream that could be too low to be effective, and that this could be overcome by individually tailoring the dose of the drug to children taking part in the study.
“A major challenge in administering 13-cis-retinoic acid is that it only comes in capsule form. As most children with neuroblastoma are too young to swallow the capsules, they have to be opened up and the contents either put down the child’s feeding tube or mixed with food.
“This means it’s very hard to control exact doses, as some medicine can be left in the capsule or not transferred efficiently. This under-dosing could have a significant impact on a child’s recovery.
“The findings from the trial, which recruited patients being treated at hospitals across the UK, have resulted in patients being prescribed more appropriate doses Europe-wide.
“It is essential that drugs like 13-cis-retinoic acid are used as effectively as possible to further improve the treatment of childhood cancer. In this respect, clinical pharmacology studies are central to determining the most appropriate selection of drugs and dosing regimes to further improve survival rates and minimise side effects in children with cancer.
“The Newcastle University Centre for Childhood Cancer will enable us to continue to run clinical trials which directly impact on patient treatment, helping us to make more discoveries that save the lives of children like Joe.”