17 Feb 2025

“My symptoms began not long after my first birthday”: Isla’s Story

“My symptoms began not long after my first birthday,” said Isla Chilton, now 20, who lives in Hertford. “I had a bad case of tonsilitis which I never properly recovered from. Then flu symptoms, and then my parents noticed bruising on my temples and back. I was also very clingy but they put this down to the fact we had just moved house. 

“On the 13th of September 2005, a normal Tuesday, my mother noticed I had a rash which didn’t look right. She spoke to a woman in her NCT group and she suggested we should go to the GP as we were going on holiday the week after so we didn’t want anything to come up while we were away. So we went to the GP, my mum with nothing with her not even spare nappies as we thought we would just be in and maybe get some antibiotics and then leave.  

“The GP took one look at the rash and sent us to A&E at the QE2 Hospital in Welwyn Garden City. Mum called my dad to tell him we were on the way to hospital and he should go straight there as he was on his way home from work. When we got there they took us straight in for a blood test as they said they suspected I had meningitis.”

“Mum was of course upset as she knew meningitis was bad, but also thought it would be OK if it was found early. In the time it took to do the blood test my dad arrived, then the nurse came over and sat next to my parents to say it was bad news: ‘she has leukaemia’. My mum distinctly remembers saying ‘no, no, no’ and my dad had a panic attack and had to be given a paper bag to calm down. My parents didn’t know much about leukaemia but they thought it would be a death sentence.”  

“When we were first told that Isla had leukaemia, we thought we were going to lose her,” said Isla’s mum, Lorna. “I didn’t know anything about the disease or the treatment. It was a very frightening time.” 

“We then got straight into an ambulance down to Great Ormond Street Hospital (GOSH) in London and started with a bone marrow biopsy,” said Isla. “My parents say I was completely oblivious to what had happened and spent the ambulance ride patting the drip bag attached to me, finding it funny how it swung back and forth!” 

Isla was diagnosed with B-cell acute lymphoblastic leukaemia (ALL). She started having blood transfusions that day and then began chemotherapy a week later.  

“This was a gruelling time for my poor parents as I wasn’t old enough to understand what was going on a lot of the time. I had just learnt to walk before starting treatment but due to the chemotherapy and it being too painful to walk I had to learn again when I finished. I also had problems with my Port-a-Cath (a type line that is fixed into the body to enable chemotherapy, drugs and fluids to be administered) as one moved and one got infected, the worst GOSH had ever seen at the time. I ended up having three inserted in the end and still have some scars, along with more I got from bone marrow biopsies.”  

Isla initially spent two months in hospital, and then continued her treatment at home and with regular trips to both Great Ormond Street Hospital and the Lister Hospital in Stevenage. Her treatment officially finished in November 2007, six months after her little brother was born. She was given the all clear when she was eight years old, although continued to have regular checkups.   

“I started school at the normal time because my leukaemia had happened to me so young. But I still had quite short hair then and I remember being sensitive about that. I was also much more advanced in my speech as I’d had to learn to speak to the doctors to communicate how I was feeling. I was very mature for my age. So I was a bit different to all the other kids.  

“One great thing was that we were allowed to use the pool at the Keech Hospice Care in Luton for me to learn to swim as it was a sterile environment. My parents encouraged my swimming and general fitness, and I have gone on to swim competitively for Hertford. On one of my recent check-ups the doctors questioned how low my pulse was and it’s because of my fitness.” 

“Thanks to our NHS, the staff at GOSH and the Lister Hospital, she received the best possible care, I can’t thank them enough,” said Lorna. “My late husband, Isla’s dad, was amazing throughout her treatment. He was a rock, I could not have coped without him. And Isla dealt with the treatment so well. All the hospital visits, blood tests, and check-ups, she took in her stride. I am so proud of her strength and determination to overcome this illness.” 

“I have been in remission for over 15 years now,” said Isla. “My care recently moved from Great Ormond Street to University College London Hospital (UCLH) as I am now an adult which was another big milestone but I miss the safari theme on the children’s day care ward with the lovely animal pictures along the walls! I also remember stealing some of the toys! I actually used to enjoy going to Great Ormond Street for my checkups as mum always made it an exciting day out and we could take the day off of school to go Hamleys toy shop or up the Monument Building where the great fire of London started. The nurses and doctors have been there through all of my milestones including sending me a congratulations card on completing my A levels and finishing school. 

“I have been lucky to have very few side effects from my treatment as well. I have a slight memory issue, and a tiny bit of hearing loss. But that’s all. Leukaemia has always been a part of my story as I was diagnosed at such a young age that I have never known anything different. It’s strange because all these people talk about when they learnt that they had it – for me it’s always been there.” 

Sadly Isla’s father Dean passed away two years ago. He had been a strong supporter of both Isla and other leukaemia patients, shaving his hair off when she lost hers, and raising £28,000 for Blood Cancer UK on a sponsored cycle ride. His commitment to giving back has influenced Isla who is currently in her third year of a marketing and management degree at the University of Exeter whilst doing a year working at British Airways on their business placement scheme. She gave up her time to volunteer to work with Leukaemia UK on the charity’s annual Who’s Cooking Dinner? Fundraiser in October 2024. The prestigious dining event has raised over £8million in 25 years. 

“As a family we try to look back positively that everything worked out for us and I am still here today. Sometimes were especially hard but my parents always looked at the moody teenagers at the hospital waiting for their leukaemia checkups and thought ‘If they made it why can’t our daughter’.”