Couple’s day of joy was one of their last together
But for Alex and Ali Lewis it held more significance than most.
The couple knew that Alex has just days to live and that made their wedding day one of the happiest and yet saddest.
“Alex always said why would people come to his funeral when they could come to his wedding?” explains his mum Angela.
Alex was diagnosed with the bone cancer osteosarcoma just weeks before his 18th birthday. After three years of intensive treatment including amputation of his arm, Alex realised he was running out of options and decided to cram as much into the time he had left. But he could not have known he would fall in love and find his soul mate.
Next week a moving documentary about the last eight months of Alex’s life is being shown on BBC 3 as part of the Extraordinary Me season.
Alex: A Life Fast Forward is a very personal film which follows Alex as he comes to terms with own mortality and the fact he has fallen head over heels in love and tries to cram as much as possible into the time he has left.
“Alex had met Ali while travelling in Australia but they were just friends. Then when they got back they just clicked. Ali knew right from the start that Alex had bone cancer. They were so happy together and it was very important to Alex that they showed commitment and that was why he wanted to get engaged, but he never put any pressure on Ali to get married, it was her who wanted to.”
The day of the wedding had to be brought forward on advice from doctors who knew Alex was very poorly,
“We ended up organising a traditional wedding, church, reception the whole thing in 10 days. It was a fantastic and very emotional day for everyone.”
On the first day of filming the documentary in June 2010 he talks about his sadness of not being able to commit to a long-term relationship. That evening he gets together with Ali and the pair become inseparable.
The documentary is a story of the power of love as Alex confronts his own mortality in the most emotionally-charged circumstances imaginable.
Alex decided to go ahead with the film after the family was approached by filmmaker and family friend David Dugan who had know him since a child.
“We were apprehensive about it at the time,” admits Angela,
“But Alex was really keen to do it, He was an amazing person and an inspiration. He wanted to help others who might find themselves in his position.”
Alex also wanted to raise awareness of the Bone Cancer Research Trust in Leeds – the only charity in the country funding research into this rare form of cancer.The BCRT had also given advice and support to his family following his diagnosis.
During his illness and since his death his siblings and also local villagers have raised hundreds of pounds towards the Leeds charity and the research it is funding.
Over the last 20 years massive inroads have been made into the diagnosis and treatment of cancer.
Sadly for those suffering from bone cancer the same cannot be said.
The survival rate of just over 50 per cent has remained unchanged.
What makes this cancer particularly cruel is that it is most prevalent in young people aged between 10 and 24. It is hard to diagnose, often being put down to growing pains or a sporting injury.
This is what happened to Alex, a talented tennis player and footballer whose painful arm was put down to over-doing his favourite sport.
When he was eventually diagnosed in 2007 the cancer had spread to his lungs and despite gruelling chemo and radiotherapy he lost his fight against cancer on February 12 this year – five days after his wedding and his 22nd birthday.
“The major reason behind Alex’s participation in the film was to raise awareness of primary bone cancer and the excellent work of the Leeds based Bone Cancer Research Trust,” explains Angela.
“Sadly, a recent publication funded by BCRT has shown that there has been no improvement in survival for people with bone cancer over 20 years. New effective treatments are urgently needed to treat people with bone cancer.”
This startling statistic was the reason Sarah Dawson decided to become a trustee of the BCRT.
Her son, Al, died from the same type of bone cancer as Alex Lewis in November 2007. He was 16 years old.
He too was a keen sportsman with his entire life ahead of him.
“One of the reasons I am so passionate about this is that there needs to be research into how and why does it start in the first place and why is it predominantly teenagers. It is terrible to think that over the last 20 years there has been no improvement in the rate of survival,” says Mrs Dawson from Wakefield,
“The prognosis for these young people is desperate. I am not angry; that is not what this is about. It is about finding better treatments and better diagnosis. All these young people like Al and Alex who makes documentaries to raise awareness and help other teenagers are so brave.”
The BCRT was set up by a group of grieving parents in 2004 who wanted to raise awareness and money for research into the specific cancer of the bone, rather than a general cancer fund.
With the help of Professor Ian Lewis, consultant paediatrician and adolescent oncologist at St. James’s University Hospital, Leeds, the charity was founded in 2006. Its aim was to raise awareness of bone cancer, offer support and information to sufferers and their families and also raise much-needed funds for research into this neglected area.
Twenty-four research projects have been funded by the charity to the amount of £800,000 in five years.
One of the projects is headed by Professor Sue Burchill of the Leeds Institute of Molecular Medicine, part of the University of Leeds.
She and her team are working in the laboratory to try to understand how the bone cancer develops in the first place to help improve diagnosis and hopefully improve treatments.
“Bone cancers are very rare compared to some of the more common cancers so that can in some part explain why there has been a lack of funding on bone cancer research,” says Prof Burchill.
“By putting more funding into bone cancer research we can attract more scientists into the field and as a result that will increase the chance of benefits to patients.”
Alex: A Life Fast Forward is on BBC 3, on Thursday July 21 at 9pm.