Ellie Mae Wile-Dunne, 9, was diagnosed with acute lymphoblastic leukaemia in August 2012 – aged just four. Her mum, Nikki Wile, had taken her to the doctors and hospital with various infections eleven times in a matter of weeks in the run up to her diagnosis. It wasn’t until they were on a family holiday in Plymouth that Ellie Mae’s great auntie – a doctor’s receptionist – noticed something was wrong.
Nikki, said: “She was getting really tired, and despite being a month off starting school she was still needing a pushchair at the end of the day. My auntie noticed that Ellie Mae was looking pale, and with a rash that we now know was symptomatic of leukaemia. She told us to get a blood test, which we did the next day.” Ellie Mae arrived at Plymouth Derriford Hospital A&E at 10.30am, and by 5pm she had been diagnosed.
“I remember they took us to a side room and I remember feeling like I was on a TV set” said Nikki. “I was thinking it couldn’t be cancer. It couldn’t be right because she was running around on a farm the day before. I couldn’t take it in. I couldn’t believe it. Then we started thinking about the future. We were 250 miles from home.”
The family was taken to Bristol Children’s Hospital – the nearest principal oncology treatment centre to Plymouth. That is where CLIC Sargent stepped in. They offered Ellie Mae’s Mum and Dad a place to stay, free-of-charge in CLIC House – one of ten CLIC Sargent Homes from Home around the country near principal cancer treatment centres.
Nikki said: ”It was such a weight off our minds – as amongst all of that we couldn’t be thinking about hotels and places to stay. CLIC House is just a five minute walk. It is somewhere you can forget about hospital for a while, and meet other families. While we were there we met Steph and her son Romesh who were also in the Morrisons Jingle Bells video. We kept in touch and at the filming, it was the first time we have seen each other since.”
The CLIC Sargent social worker was also there to support the family come to terms with the emotional impact of treatment. Nikki added: “The poor kid didn’t know what was happening. She would scream the place down when they tried to take bloods. She couldn’t understand why these people were hurting her.
“She gradually withdrew and retreated into her shell. She was very quiet a lot of the time. She had always been such a bright bubbly girl – much like she is now. But any time a doctor would come into the room she was terrified. It was the worst thing to see. She stopped walking and she lost her hair. She became very clingy to me. She wouldn’t go to anybody else. Who knows what was going on in her head. All this was happening, and it was probably a couple of months before she got back to her old self.”
After ten days of intensive chemotherapy, the family was transferred to the Royal Marsden Hospital in London, where Ellie could continue her treatment closer to home. Like many children with leukaemia, Ellie grew weak and stopped being able to walk. But rather than regaining her strength as expected, she stopped walking for 14 months.
“They told us it was psychological” said Nikki, “but I knew it wasn’t. Then one day she had a stumble and she fractured her leg. She had got steroid induced osteopenia caused by the intensive doses of the chemotherapy drug vincristine and steroids. It meant her bones were thinning. She had to have intensive physiotherapy and hydrotherapy. She would walk everywhere on her knees and went through lots of trousers. It was brilliant to see her finally starting to walk again. I started her in dance lessons to help her get her confidence back. She was way behind the other kids in terms of physical ability, but she was focused.”
In March 2013, Ellie Mae got the news that she was cancer-free, and began the long maintenance stage of treatment to keep the leukaemia away.
Ellie finished treatment in December 2014 and rang the bell in February 2016, when the Royal Marsden Hospital first got an End of Treatment Bell.