A student from Hertfordshire is calling for more of his peers to sign up as stem cell donors with blood cancer charity Anthony Nolan, after being told that there is currently no one on register who is a perfect match for him.
Alex Haines, 21, was diagnosed with acute lymphoblastic leukaemia, a type of blood cancer, in 2017. The diagnosis came when he was just 19 and about to start the second year of his psychology degree at York University.
Initially, the keen footballer and tennis player was diagnosed with Osgood-Schlatter disease, a common cause of knee pain in growing adolescents, after developing a lump in his knee. Other symptoms that presented around the same time, such as weight loss and fatigue, were put down to the “lazy uni student lifestyle”.
Alex’s GP referred him for a routine blood test, which delivered normal results. When the lump continued to grow and become more and more painful, Alex was given a biopsy.
He returned to university whilst awaiting biopsy results “but the biopsy wound wouldn’t stop bleeding” Alex’s mum Maya recalled. Within days, Alex had blood spots appearing on his legs at which point he was taken to A&E where blood tests showed that his platelets had dropped to dangerously low levels.
“That is when they confirmed it was a form of leukaemia, and Alex was ambulanced from York to London to begin immediate treatment at UCLH” Maya said.
The cancer had progressed rapidly in four weeks. “They don’t call it ‘acute’ for nothing” she added.
Alex’s case, with the leukaemia presenting initially as a lump, was so unusual that he is being written up in a medical journal.
Treatment was long and gruelling for Alex. “It was split into five blocks, each of about eight weeks” he explained.
“There were at least three chemotherapy cocktails, steroids or combination treatments. And these came with some horrendous side effects.”
Alex’s treatment lasted eleven months, eight of which were spent living with his mum either on a ward or in charity accommodation right next to the hospital. He picked up a bacterial infection and several fungal infections in his abdomen which meant he was unable take on enough nutrition and had to have a feeding tube inserted. An abscess on his leg rendered him immobile and the 5’9 teenager’s weight plummeted to 46kg. His kidneys stopped working so he couldn’t expel the chemo from his blood and developed severe mucositis as a result. “It was really grim” he admitted.
However, there was a chink of light at the end of the tunnel. Each bone marrow test showed progressive reduction in the number of leukaemia cells in his bone marrow.
After eleven months of treatment, Alex was in remission and started to pick up where he left off the year before. One of the most important things for Alex was to resume his studies. His diagnosis came around the same time that his university friends were finding their accommodation for the following year. Alex and his family were so determined to get back to normality as quickly as possible, that they paid up front for his room while he was in the midst of treatment. “At least this way we could pretend life was normal” Maya explained. “We wanted him back with his friends in York. It’s not natural for a twenty-year-old boy to have his mother sleeping only feet away from him for the best part of a year!”
Alex’s university agreed he could return to his studies part time. Unfortunately, even this was too wearing for Alex, now on ‘maintenance’ chemo. After a few weeks he found himself withdrawing for the second time. “If I had a day of lectures, it would leave me exhausted for three days” he recalled.
Despite the setback, Alex was spurred on by the support of a strong network of friends, both at home and in York. “It made things so much easier. Everyone was just acting normal, having a laugh. To them I was Alex, not just a hospital patient.”
A group of friends hiked the length of Hadrian’s Wall to raise money for a charity that supported Alex throughout his illness.
On 21 June this year, a routine test showed a small amount of leukaemia cells in Alex’s spinal fluid as well as some activity in his bone marrow. “It was a bit of a shock” said Alex. “You don’t expect to relapse when you’re on maintenance.”
It was then than doctors told Alex that his best chance of a long term cure would be through a stem cell transplant. Both his brother Joe and sister Beth were tested to see if they were a match. Neither were a perfect match for Alex, so Alex’s medical team set about searching the Anthony Nolan register for an unrelated stem cell donor.
“Until that point, I’d not heard of Anthony Nolan” Alex admitted.
“I’d heard of the charity as I’m of the age to remember the appeal for young Anthony. But the stem cell register is not something you usually think about if you are healthy” Maya added.
In order for a stem cell transplant to be successful, Alex needed to be put into the deepest possible remission.
“They decided to go with antibody treatment, which is a relatively recent development” Alex explained.
“It’s like a little box which you carry around attached to your arm for 28 days. It’s a non-stop 24- hour infusion.”
Alex is responding well to the anti-body treatment. He is now hoping to raise awareness of the Anthony Nolan register while he waits to see if a match can be found for him.
“Alex’s search is complicated slightly by the fact he has Indian blood. It may affect his chances of finding a match” Maya said.
“That’s why we’re trying to appeal for donors. It’s really not too late for people to sign up!”
When asked what he would say to someone thinking of joining the register Alex said: “If you’re a normal, healthy person, joining the stem cell register may not cross your mind but there’s no reason whatsoever why you shouldn’t. Just being on there it can make a massive difference to someone like me.
“I think a lot of people my age think the term ‘transplant registry’ daunting but it’s not much scarier than giving blood really. It may be inconvenient or uncomfortable but it’s nothing compared to what the recipient has gone through.
“All my friends have now signed up to the register. Even the ones that are a little bit squeamish, as they know what good it can do.
“It’s so easy to join, a mouth swab and you’re on.
“Just do it!”
Rebecca Pritchard, Head of Register Development at Anthony Nolan, said: “Alex was a regular uni student, whose life was knocked on it’s side by a diagnosis that no one would ask for.
“He’s one of the five people a day who start their search for an unrelated donor. A cure could be out there for him and we will do all we possibly can to help him find his match.
“Every single person who signs up to the register has the potential to give hope to someone like Alex who is in desperate need of a lifesaving stem cell transplant. We’re particularly calling on young men aged 16–30 to consider joining the Anthony Nolan register as they provide more than 50% of all stem cell donations but make up just 18% of our register. Together, we can work towards a future where nobody is waiting for their match.”
Find out more about Anthony Nolan at www.anthonynolan.org/Alex