Research at a proposed £5.5m childhood cancer centre in the North East could help children like Joseph Green.
The 10-year-old, from South Shields in South Tyneside, is in recovery after being diagnosed with acute lymphoblastic leukaemia in 2009 and embarking on a three and a half year battle against the disease.
On Saturday, the Journal helped launch The Future Fund campaign which sees Newcastle University joining with the North of England Children’s Cancer Research charity and the Great North Children’s Hospital to raise £5.5m to create the Newcastle University Centre for Childhood Cancer.
The work undertaken at the centre will enable world-leading academics and clinicians to advance and accelerate the children’s cancer research and Joseph’s family are backing the campaign to raise the funds for the multi-million pound facility.
Dad Stephen said: “As he was blowing out the candles on his sixth birthday cake, Joseph’s hair was falling out into the flames and I can remember the sound of it crackling at it set alight.
“The experience taught me how good I am at properly crying. You don’t realise how much you can physically cry. Sometimes I’d just wake up at 2am and just sob. I couldn’t believe it was happening to us.”
The family had just returned from their first holiday to Florida when Joseph complained of a painful toe at school which looked like a simple infection. However, a routine blood sample revealed a dangerously high white blood cell count and just three days later he was beginning an intensive treatment of chemotherapy.
“At 2am on Armistice Day 2009, in the small Sister’s office on the children’s ward, we were told Joseph had leukaemia,” said Stephen.
“It was a very surreal moment that I’ll never forget. We don’t have family nearby so I called my mum 250 miles away and I can recall my voice saying ‘mum I’m going to lose my boy’. It was the day before our eldest son’s birthday and he ended up opening his presents in hospital as we did our best to make it still feel special while trying to hide our panic.”
Despite both working for the NHS, Karen and Stephen’s healthcare backgrounds could not prepare them for the challenges ahead. During periods of his treatment at the Great North Children’s Hospital, Joseph was taking 17 different tablets and having injections in his spine every three months, into a port in his chest every month and throughout the process bone marrow was taken from his pelvis to check on his progress.
Just before Christmas in 2012, Joseph had his last chemotherapy treatment and shortly after the family were told he was in remission. Joseph has now rejoined his classmates at St Bede’s Catholic Primary in South Shields and has gone back to his beloved karate classes.
“He now has gorgeous long red hair which is lovely and curly – we call them his chemo curls,” said Stephen.
“Another little reminder of his experience is a scar on his chest where his port was removed and he calls this his bacon because it is silvery, like a bit of uncooked bacon!
“Our story has ended well but there were so many families that we met along the way that simply stopped turning up for treatment and we know that’s not because their children got better. The plans for a new research centre into children’s cancer are so important because they will give the intellectual push in the right direction.
“It’s about having a critical mass of expertise in one place so that things can move forward at a greater pace. It’s the difference between everyone setting off in separate cars to reach the same destination and taking a different path and everyone getting on the same bus to arrive there much quicker.”
University professor tells of progress
Professor Christine Harrison, Professor of Childhood Cancer Cytogenetics at Newcastle University said: “Joseph was diagnosed with acute lymphoblastic leukaemia (ALL), a cancer of the white blood cells, which is the most common childhood cancer.
“Thanks to improved treatments and disease monitoring, up to 90% of children with ALL are now cured. Research at Newcastle University into the underlying genetics of ALL has contributed to improving the survival rate.
“Years of study, including research within our own group, the Leukaemia Research Cytogenetics Group, has shown that genetic abnormalities in ALL predict the way in which patients respond to therapy. As a result, these abnormalities are used to guide the choice of treatment for individual patients.
“‘Good risk’ abnormalities are present in about half of children with ALL, and patients with these abnormalities have an excellent outcome on standard treatments. Unfortunately, a minority do not respond to standard treatment, resulting in a high risk of relapse.
“Much of our research has focused on improving outcome in these ‘poor risk’ patients. Ten years ago, we discovered an unusual genetic abnormality among poor risk patients, known as iAMP21. We found that this abnormality was present in around two per cent of children diagnosed with ALL and that it gave them a much higher risk of relapse.
“Since 2003, every child diagnosed with ALL has been tested for the presence of this abnormality using a genetic test designed by our research group. Once identified, they are immediately recommended for very intensive treatment.
“Recent results after long-term follow up have shown that children in this group treated with intensive chemotherapy had their risk of relapse reduced by 75 per cent, and the proportion surviving for five years or more increased to nearly 90 per cent. These results demonstrate the huge potential of personalised medicine.
“These discoveries have been possible because we maintain the largest cytogenetic database in the world, containing genetic data from more than 27,000 children and adults diagnosed with acute leukaemia treated on UK and international clinical trials.
“The Newcastle Centre for Childhood Cancer will enable us to continue to develop our research in this area and will ultimately result in more lives being saved. It will also enable us to build on our equally important work into the reduction of the long-term side effects of treatment.”
The Future Fund
The Future Fund aims to raise £5.5 million to create the Newcastle University Centre for Childhood Cancer, a specialist children’s cancer research facility at Newcastle University. How to donate: online via the Just Giving page found at www.futurefund.co.uk , by calling 0191 208 7250 or in person at The Journal, Groat Market, Newcastle. Get involved on Facebook/futurefundnewcastle, on Twitter @FutureFundNCL and use the hashtag #NCLFF