12 year old James is a sports enthusiast who for the past year and a half has battled acute lymphoblastic leukaemia (ALL). In 2016 James and his parents David and Karen enjoyed the benefits of a Box4Kids experience. This is his story.
James’ parents initially did not think much of it when he started complaining about muscular aches and pains. He was an active 10-year-old, regularly participating in cricket, taekwondo, rugby, football, swimming, and riding his BMX with his friends.
After deteriorating for a week, leaving him lethargic and missing cricket training (unusual for James) his mum took him to the GP, he sent them to their local hospital for blood tests, abnormalities where recognised in his blood counts before being transferred to the Royal Manchester Children’s Hospital where James was diagnosed with ALL on 15th July 2015.
Initially responding well to chemotherapy at the start of his intensification treatment, hopes to go home after
weeks as an inpatient were shattered as James became very poorly. After monitoring James for a few days and a couple of CT scans later decision was made to carry out emergency surgery – a reaction to one of the chemotherapy drugs had caused a perforation to James’ bowel, an extremely rare occurrence.
James spent fifteen days in the paediatric intensive care unit. Ventilated and sedated he endured another two operations before he was released to the high dependency ward. It took another two weeks before he recovered from sedation and David and Karen started recognising him as James again.
“He was bedridden for around eight weeks, which took his mobility completely. He was initially so weak he did not have the strength to turn in bed. It was such a shock to us that somebody who had been so active became so weak in such a short period of time.
“The following months were spent through a lot of physiotherapy, building muscular use back up to get him walking again whilst still undergoing chemotherapy, which at time was very difficult for James but through a lot of sheer determination, desire, pain and tears he has continually improved.”
One hundred days and nights after first being admitted to hospital James was allowed to go home every other week to recover from the ongoing chemotherapy. Hospital remained a significant part of James’ life.
“The reality, due to medical precautions at the time, was frequent admissions back into hospital in-between his planned admissions. An example of this was to drop his sister and nephew off at the airport one evening, after they had been home from New Zealand for the first time since James’ diagnosis for his birthday, only to carry on in to central Manchester to the hospital for another few nights’ admittance as he had developed a high temperature.
“James spent his birthday, Christmas week and Christmas Day morning in hospital, getting home in the afternoon only to be too tired from the medication to play with his presents. As much good as the staff and charities do for the children in hospital in the build-up to Christmas it was obviously good to get home.”
David hails the support from the NHS, family, friends, work, school and a range of charities, including the Barrie Wells Trust.
“We, and most importantly James, have had the benefit of great care and fantastic staff within the NHS and Hospital Trust, and through charitable organisations like the Barrie Wells Trust and Box4Kids. Family, friends, work and school have also been really supportive in numerous ways for us as a family.”
James was nominated by Royal Manchester Children’s Hospital for a VIP Box4Kids event at Sales Sharks in April 2016, with the great honour of meeting two England internationals, Mark Cueto and Ben Kay.
He was then nominated again a month later to attend the final match of the season in Barrie Wells’ box at Liverpool Football Club. It was an important day for both of them.
“That particular evening was a great tonic for James and ourselves as it took his mind off the further bowel surgery that was planned the next day.
It was a fantastic enough opportunity to attend the match, but meeting Katrina Johnson-Thompson and Darren Campbell filming for the BBC documentary ‘Faster, Higher, Stronger’ was more than memorable.
We were getting messages from friends when the documentary was aired who we hadn’t even told but who had seen James on TV. It was a great surprise to relive the occasion again.”
Surgery was successful and after a couple of weeks James and his family went on a half-term break to Cornwall, a holiday that had been cancelled after James’ diagnosis the previous summer.
James is now looking forward to his first live concert, Madness at Manchester Arena, which his parents are taking him to in celebration of his 12th birthday.
Although unable to participate in any contact sport for the foreseeable future, which has been mentally tough for him, James is keeping busy. He plays table tennis regularly and is due to return to his Taekwondo club for non-contact elements in the near future. He has also taken up a new interest in music, enjoying regular guitar lessons.
“We are immensely proud of James with how he gets on with things, he just strives to get on as normal as possible.”
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