When Sarah Howells learned her 23-year-old niece had been diagnosed with a cancer so rare it affects just one in every 50 million people, she picked up a pen and started writing.
The result is The Clockwork Key: Secrets of Eldridge Hollow, a children’s fantasy book that the Sittingbourne woman hopes will help raise vital funds for research into cancer – and give young Ellie Howells something to smile about amid an ordeal that has seen her lose five stone, endure months of misdiagnosis, and navigate gruelling treatment while raising a three-year-old son.
Ellie, an NHS 111 call handler from the Isle of Sheppey, has been diagnosed with Langerhans cell sarcoma. She started feeling ill last November with pains in her upper back and abdomen. She was also vomiting, felt fatigued and was losing weight. She made more than 30 visits to her GP and Medway Hospital to try to find out what was wrong. Scans failed to establish what was happening, with theories from medics such as lymphoma to gastroenteritis. By now, Ellie was really poorly with lumps appearing on her body.
She was transferred from Medway Hospital – whose care she described as ‘traumatic’ – to the cancer specialist Royal Marsden Hospital in London. It was there that Ellie was diagnosed with Langerhans cell sarcoma in early June. By now, she had lost five stone in weight.
She started a course of chemotherapy but came off after the fourth round as the treatment did not seem to be helping.
Since then, Ellie has had a trial of a daily oral medication. Currently at home, the hope is that she will go into remission and maybe then have a bone marrow transplant.
Sarah said: ‘The new trial has given us a bit of hope.’
This summer, Ellie married fiancée Jack Rogers, which she described as ‘the best day of my life’. The couple have a son aged three named Teddy. With an uncertain future, the focus is on making happy memories.
Ellie admits her ordeal has impacted her mental health but says she tries to stay positive for her son. ‘He has made it a lot easier. He says things like “you are beautiful with no hair”.’
Reflecting on delays in her diagnosis, she said: ‘I’m stage 3 now. If my cancer had been found earlier, my treatment could have started earlier and maybe my cancer would not be as advanced.’
Sarah, 41, said: ‘Ellie is a fantastic mother and wife. She’s a real trouper, a real strong young lady. She has gone so far and been so brave. I had the idea to write the book when Ellie was diagnosed. It was so the kids in the family can enjoy something I had written.’
Sarah, who works in a transport office, intends her book to be the first in a series of five – the second is already in the pipeline – with half of the proceeds going to charity Sarcoma UK. The Clockwork Key: Secrets of Eldridge Hollow is for children aged ten to 16 and is available on Amazon at bit.ly/TheClockworkKeySeries
Director of Fundraising and Communications at Sarcoma UK, Kerry Reeves Kneip, said: ‘Sarah’s creativity and love for her niece have produced something really special. These cancers are notoriously difficult to identify, and earlier detection could transform outcomes for patients. We’re really grateful to Sarah for choosing to support our work, and we’re inspired by Ellie’s courage through such an incredibly challenging time.’
