An 18-year-old Health and Social Care student from Shrewsbury is calling on young men from across the UK to join the Anthony Nolan register and give hope to patients in need of lifesaving stem cell transplants.
Last summer Jack was diagnosed with acute lymphoblastic leukaemia (ALL), a rare blood cancer that affects the white blood cells. Jack had been studying Health & Social Care at the time, however needed to receive treatment to cure him.
Jack’s mum, Kate, says: ‘Jack had just turned 17 and we’d not long moved into our new house. He’d been out and about with friends – it was the height of summer. Jack started to experience night sweats and had been feeling exhausted. He had also developed some bruising, so we took him to the GP and explained Jack’s symptoms.
‘Our GP suggested blood tests the following week, so we returned home. Jack wasn’t very well at all so I took him to A&E for the blood test, but they wouldn’t do it – we were told to go back to the GP.
‘We thought the bruising might have been from playing football, however one afternoon Jack developed a mottled rash all over. It looked serious; I thought it could be meningitis, so I rang the GP again. They did the blood test and, that evening, we went to our local hospital.
‘The next morning, we were told that it was acute lymphoblastic leukaemia, which was a huge shock. I wasn’t expecting that; Jack’s symptoms seemed to be lots of little things – it hadn’t entered my mind that it could be something as serious as leukaemia. As a parent, I did feel guilty.’
After six rounds of chemotherapy Jack, a Manchester United fan, was told the cancer was in remission. Earlier this year Jack started maintenance treatment, to prevent the blood cancer from returning. A bone marrow biopsy showed some abnormalities; the family had to wait for the results of a second biopsy which would reveal if the treatment had worked.
Three weeks ago, Jack, and his mum Kate, were given news that the ALL had returned, and he would need to receive immunotherapy to prepare him for a stem cell transplant.
Kate, a social worker, says: ‘When we were told that, yes, Jack’s blood cancer was back it was hard to hear. We had been working towards maintenance, which seemed to be this utopia: one he hit maintenance everything would be a lot easier for Jack. He could go out, potentially go back to college and do things to be little bit more “normal”.
Jack is currently being treated at The Queen Elizabeth Hospital, Birmingham. He needs a stem cell transplant: cells from a healthy person, with the same tissue type, to replace and repair his own damaged cells. Jack and Kate are sharing their story to raise awareness of Anthony Nolan, the world’s first stem cell donor register. The charity finds and matches donors, of the correct tissue types, with patients like Jack who need stem cell transplants.
‘Sharing our story is the only practical thing I can do as a parent,’ says Kate. ‘I’m in the hands of the medical staff. What I can do is to highlight what I’ve learned – which is there is a need for more young men to join the Anthony Nolan register.
‘Until Jack’s treatment I didn’t realise how many people, at any one time are in need of a stem cell donor. Or how difficult it can be for people who are mixed race or are from Black Asian and minority ethnic backgrounds. Sharing our story is something I can do for lots of other people who will need to have stem cell transplants in the future.’
Jack and Kate travel to Birmingham for his immunotherapy, and, despite the challenges Covid-19 has presented to the family are relishing their time together.
Kate says: ‘We’ve spent a lot of time together over the last year and are lucky because we get on really well. I was quite young when I had Jack so we can have a laugh about all sorts of things, and I hope he feels he can talk to me about anything.
‘Covid put a complete dampener on ‘normality’. My partner had to move out of our home in March. He has two children from a previous relationship he needs to see and work. Jack and I have been shielding together because I’m able to work from home.’
Lockdown brought a pleasant coincidence for gamer Jack. Kate says: ‘In a funny way Covid has also meant that Jack’s had more of a social life than he would have done otherwise during his treatment. His friends had started turning 18 and going to pubs but have been unable to because of lockdown. They’re gaming instead, which has meant that Jack has been able to stay connected to them as they chat while they play.’
Speaking about his treatment, Jack said: ‘It has been tough, but it’s definitely not how I expected it to be when I first got diagnosed. I thought I would always feel ill and I would never have any good days but it’s not like that at all, in fact most days are a good day, but when it gets hard it gets hard.
‘The main reason I want to share my story is because I know that lots of people will be reading this thinking it could never happen to them. The reality of it is though that it does. That’s not to scare anyone, but I’m just saying that I’m just a normal 18-year-old who was at college, played football, went to the gym etc yet this still happened to me.
‘What I would say to people is, please join the stem sell register. Imagine if it was one of your friends or family in need, somebody else’s life can be saved by you. For the people that do join, myself and thousands of other people can’t thank you enough.’
Alice Hirst, National Recruitment Manager at Anthony Nolan, says: “We are wishing Jack and his family all the very best as they prepare for the transplant journey. It is really very inspiring that, despite going through a very tough time, the family are raising awareness of the need for more young people to join the Anthony Nolan register.
‘What many people don’t realise is just how simple it is to register to become a potential donor. Registering, if you’re aged 16-30, simply involves filling out a form and providing a saliva sample. This could help patients, like Jack, find their matching stem cell donor and give that person, their family and their friends a second chance of life.
‘Our ground-breaking research shows that younger donors give the best chance to patients, so our recruitment age range means we focus on recruiting the best possible donors. We especially need more young men to join the register because they make up 18% of our pool of donors but provide 50% of all donations.’
Anthony Nolan recruits people aged 16-30 to the stem cell register as research has shown younger people offer better survival rates for patients. The charity also carries out ground-breaking research to save more lives and provide information and support to patients after a stem cell transplant, through its clinical nurse specialists and psychologists, who help guide patients through their recovery.
It costs £40 to recruit each potential donor to the register, so Anthony Nolan relies on financial support to make sure the charity can continue giving patients the best possible chance of life.
Find out more about joining the Anthony Nolan register at www.anthonynolan.org/join4jack