14 Mar 2024

Luke’s 20-year battle with leukaemia

Luke Croarkin’s 20-year battle started when he should have been taking his GCSE’s and enjoying life as a teenager. Since then he’s suffered two relapses, and is currently waiting for this third stem cell transplant. Luke has had the maximum amount of chemotherapy any patient is allowed but is now benefitting from new generations of drugs. 

Luke in hospital as a child

Luke was just 15 when he was first diagnosed with leukaemia. His family – mum Dawn and brother Jamie, along with Dawn’s partner at the time and his two daughters – were on their first family holiday abroad to Benidorm in November 2003 when his symptoms began.  

Aching all over

“On the second day after we got there, I started to feel like I had flu,” said Luke, 36, who lives in Felixstowe in Suffolk. “After about 24 hours I couldn’t get out of bed, I was aching all over and felt so ill. Mum rang the emergency doctor and they told her to take me to hospital. I ended up spending over two weeks at two different hospitals while they tried to find out what was wrong with me. Part of it was in isolation as they thought I’d bought some infection with me from the UK. 

“It was absolute hell for my mum. As a parent now I just can’t imagine what she went through. She was battling with our travel insurers to try and get me home, because they thought I must have been ill before I went on holiday. She had to sleep in a chair and was hardly eating as they didn’t feed guests and we didn’t have much money at the time to buy food. Kind nurses and other patients used to take her for lunch. The most traumatic bit I remember was being given a lumbar puncture through my chest with no anaesthetic and being pinned down by the doctor. That was the worst pain ever. And they still couldn’t work out what was wrong with me.” 

Luke’s brother and the rest of the family group eventually had to leave to go home. Shortly afterwards Dawn succeeded in getting their insurance to pay for Luke to be flown by British air ambulance back to the UK.  

“I remember being taken onto the runway and having a quick passport check then getting onto this little private jet where there was a stretcher bed for me,” said Luke. “The best thing was they gave us British food and drinks. The hospital food I remember as awful – I was 15 years old and all I wanted was McDonalds! I was flown to Southend Airport, taken to Southend Hospital near where we lived and then after a couple of days transferred to Middlesex hospital. I remember a nurse saying to me that I was going to go up to a ward and it might be scary as there were children there with no hair. Of course it was the cancer ward.” 

Devastating diagnosis

Luke’s father was by his side when his devastating diagnosis was revealed. A bone marrow biopsy showed he had acute myeloid leukaemia (AML). He was immediately transferred to University College Hospital London where he started chemotherapy on his 16th birthday – 23rd December 2003.  

Throughout the first part of 2004 Luke endured several gruelling rounds of chemotherapy, radiotherapy, blood and platelet transfusions and antibiotics to fight his blood cancer and the infections that he was experiencing due to the treatment. He had several serious reactions to chemotherapy including his nerve endings being ‘burnt’. This meant he couldn’t walk or stand as it felt like his feet were on needles. The teenager became bed-bound and needed a wheelchair to move around. His muscles shrunk and he would eventually need to go to an in-patient physiotherapy unit for three weeks of treatment to stretch and strengthen them. Luke also found it impossible to eat and so had to have a gastrostomy tube into his stomach. Luke’s Nan Eunice Williams was a huge support during this time. She regularly made the three-hour return train journey from Southend with a little shopping trolley full of snacks and drinks for her grandson, despite being in her 70s.  

Eventually, at the end of summer 2004 he received a bone marrow transplant from brother Jamie who was a perfect 10/10 match. Finally Luke was in remission.  

“She is my absolute hero”

“But six months later, just before Christmas 2004, after a routine blood test I received the terrible news that I had relapsed. They said as I had already had one bone marrow transplant so they couldn’t do another one so soon and there was nothing further they could do for me. I walked out the room as I was so upset. But mum stayed in there, and eventually she came out and said it’s fine, they’re going to do it again. She fought my case, she is my absolute hero. My elder brother Kaan was also incredible. He was working in India when I got diagnosed and he came back and spent so much time with me at weekends and evenings, to give mum a break. He’s quite tough and was the person that gave me a kick up the bum when I needed it. ” 

In July 2005 Luke had one more round of chemotherapy and his second bone marrow transplant, again from his brother Jamie.

“This was successful, I was in remission again. It was the start of the rest of my life.” 

Luke was just about to take his GCSEs when he was first diagnosed but had to abandon the exams. As soon as he was strong enough he enrolled in part time college courses in maths and English, and then got his first job. 

“It was in a bedding shop called Roseby’s. I’d gone round handing out CVs and hardly anyone got back to me. But they did. It was unusual at the time to have a young lad in there cutting curtains but I loved it! It was my first ever job and I was earning money. Kaan worked at HSBC and I then ended up getting a job there as a call handler in debt management, and then got a trainee position at a brokers’ firm in London. But the commute was terrible and I realised office work just wasn’t for me. After a spell selling kitchens and labouring, in 2011 through my uncle I got a job painting lines on road. It turned out to be the best thing for me. I was still quite a thin young lad, I struggled with my strength and the manager had his doubts. But they took a chance. Every day was like a full work out, at first it was exhausting but I got stronger, I got my apprenticeship and started my career.” 

Luke and Kirsty’s wedding

A return of flu-like symptoms

As well as developing his working life, Luke was also settling down. In 2008 he met Kirsty, the couple married in 2011 and then moved to Felixstowe to be near Kirsty’s family. Life was complete when they welcomed sons Jake, in 2014, and Logan, in 2017.  

Then at the end of 2021 Luke discovered a lump on his shoulder. It was diagnosed as liposarcoma, a cancerous tumour in fatty tissue, likely caused by the radiotherapy he had for his leukaemia. The lump was removed and Luke was given the all-clear. But in November 2023, Luke’s health took a turn for the worse. He started to again have flu-like symptoms and eventually went to A&E at Ipswich Hospital after his temperature soared to over 40 degrees. Doctors diagnosed Luke with pneumonia and he spent a week being treated in hospital. During this time, blood tests were taken, and anomalies were discovered.  

Luke with his sons Jake and Logan

“I was referred to the haematology department. I knew at that point what was happening. Two days later on 23rd November I had a bone marrow biopsy which confirmed that after 17 years my leukaemia was back but this time mixed phenotype – both AML and acute lymphoblastic leukaemia (ALL).” 

“We were devastated,” said Kirsty. “We’d been together 16 years when he had this second relapse and while we always knew it could come back it was such a shock. Of course I knew about everything he’d gone through, and he was actually still recovering when we met. But life had moved on and we’d celebrated his ten years in remission with a huge party. I always said I wished I was with him when he was ill so I could have supported him – now I am and of course I wish it wasn’t happening. But Luke is the strongest person I know. And there isn’t a day goes by where I don’t think he’s got this, he will be OK.” 

Luke was also diagnosed with weak heart muscles, most likely caused by his previous treatments. In December 2023 he underwent an intensive round of FLAG-Ida – a combination of three chemotherapy and one other drug. He also had blood and platelet transfusions and antibiotics. 

“The family and I were devastated”

Luke in hospital

“I was in hospital for my birthday, Christmas and New Year. Because I was neutropenic, my children were only able to visit on two occasions to keep the infection risk to a minimum. This was extremely hard for me and the family. There was also an outbreak of Covid which I caught. After fighting that off, I had another bone marrow biopsy which confirmed the chemotherapy had not had any effect on the leukaemia cells. Because of the weakened heart muscles I can’t have any more chemotherapy. The family and I were devastated.” 

Fortunately, doctors discovered Luke had an FLT3 mutation in his leukaemia cells and could benefit from the drug Gilteritinib which targets this mutation in AML and inhibits the growth of cancer cells. “I was able to take this from home with my family by my side, which is great. There were a lot of side effects including fatigue, aching legs, weight loss, dizziness and nausea, to name but a few! But after 28 days I had another bone marrow biopsy which confirmed the leukaemia cells had reduced by over 50% – the drug is working!” 

Luke is now on his second round of Gilteritinib and will have another biopsy in mid-March 2024. The aim is for him to have a third bone marrow (now known as stem cell) transplant, and tests are currently ongoing to see if his brother’s donor cells are still suitable. 

Jake and Logan’s fundraiser for Leukaemia UK

In the meantime the family have decided to put their efforts into fundraising for Leukaemia UK’s research which could make the all difference to Luke and other leukaemia patients.  

“On 24th February, we were watching Celebrity Wheel of Fortune when our son Jake asked if anyone could raise money for charity,” said Luke. “Kirsty said yes this was true, and he asked “Why are we not doing anything then?”. We agreed the boys would run 100k jointly throughout March to raise money for Leukaemia UK. They have several events planned to help them get to 100k and we are astounded by the support from our family, friends and the wider community. Kirsty’s family in particular have been a great support, enthusiastically helping the boys out with their events and fundraising. They beat their £1,000 target in just a couple of days. What’s so great is they’re buzzing from it. They wake up every day and want to go running, and when they get back from school they want to ‘get their k’s in’! It’s changed the atmosphere of the house because we’re not just sitting here worrying.”  

“We want to raise money for Leukaemia UK to help fund research which is urgently needed to develop kinder and more effective treatments for this horrendous disease,” said Kirsty. “Leukaemia UK’s mission is to find and fund life-changing research to stop leukaemia devastating lives. Without this type of action, new medicines like the one Luke is currently having, wouldn’t be available. We also want to raise awareness about leukaemia because it’s often hard to spot and people are diagnosed late, impacting their chances of survival. Jake and Logan wanted to help and do something for their amazing dad in his fight.”  

Luke with Kirsty and their sons

Visit the family’s fundraising page

Visit Luke’s sons’ YouTube channel