18 Apr 2024

Billie the Brave

“The chemotherapy they use is so harsh on little kids’ bodies. It would be nice to have a future where there are kinder treatments.” 

Three-year-old Billie Turner has spent nearly a third of her life in hospital undergoing gruelling treatments for leukaemia. At one point the little girl endured a week in intensive care after the chemotherapy drugs that were killing her cancer left her vocal cords paralysed and in need of a tracheostomy. Billie is now back home with her family on maintenance chemotherapy, and her incredible strength has given her the nickname, and the Instagram account, ‘Billie the Brave’ (@billiethebrave_).   

Billie was just 21 months old at the start of November 2022 when she came down with what appeared to be a sickness bug. 

“She’d been throwing up for two days so we rang the GP who told us to take her straight to A&E,” said mum Freyja Harpham, 29, who lives with Billie, Dad Zac, 29, and Billie’s 6-year-old sister Ada in Sheffield. “They said it was just gastroenteritis and she would get over it although it might take a couple of weeks. She did get better, but she still wasn’t right. She’d lost her appetite and her sleep was really disrupted which was odd as she’d always been a great sleeper. She was really unsettled all the time, something was just off, although she wasn’t seriously unwell.” 

Two weeks later Billie developed a temperature, cough and cold and started struggling with her breathing. Her parents took her back to A&E where doctors said she had a viral respiratory infection and there was nothing they could give her as it would clear on its own eventually.  

“That was the Sunday, so we took her home but she just got worse. On Monday morning she woke up with two big bruises on her forehead in places where I couldn’t explain how she’d got them. She was breathing really badly. I dropped Ada at my Mum’s, rang Zac and told him to meet us at the hospital and took her straight there.” 

Doctors immediately put Billie on oxygen and started a barrage of tests including blood tests and a scan of her abdomen. The family spent 24 hours in A&E before Billie was transferred to the Oncology Ward at the Sheffield Children’s Hospital. On 29th November 2022 her family was told she had acute lymphoblastic leukaemia (ALL).

“I felt like the world was about to end. I knew deep down something was wrong with her but we never expected that. After being told Billie had cancer, the consultant left us in the room with her to process the news. Zac and I sat and cried and cuddled Billie, before taking it in turns to go outside and ring our close family and friends to tell them the news. It was really hard to do.” 

Billie was suffering from three different infections on her lungs and was too weak to start the chemotherapy treatment she urgently needed for her leukaemia. She was put on antibiotics and high flow oxygen for three days, and once her infections had subsided, treatment started.  

“She had five rounds of chemotherapy and six weeks of a trial immunotherapy drug. We basically spent a year going in and out of hospital with her. For the first five weeks of treatment Billie was on high dose steroids. They made it really difficult for her to sleep so Zac and I used to take it in turns to stay up with her at night, which was exhausting. She always wanted to be held and cuddled, and cried every time we put her down. We also had to isolate Billie when she wasn’t in hospital as she was so immunosuppressed. This meant we couldn’t have visitors at home which was hard as we really needed the help from family. People used to come and take Ada out for us so she could have more of a normal life but it meant as a family we missed out on lots of social events. We had to spend Christmas 2022 on our own as Billie was too poorly. One of the rounds of chemo paralysed her vocal cords so she had to have a tracheostomy and was in intensive care again. Then we had to learn how to adapt to life with the trachy. The whole year of intensive treatment felt relentless and like it was never going to end.” 

Billie is now home and on maintenance chemotherapy. The family have rearranged their lives to enable them to care for their daughter. Freyja worked as a research facilitator for the NHS and after six months on full and then six months on half pay has now had to take a career break as it is impossible for her to work. Zac is a self-employed joiner who has also had to take significant amounts of time off. Freyja and Zac had to cancel their wedding, which was scheduled for September 2023, as Billie was so poorly, but hope to have a combined wedding and celebrate the end of her treatment.

After the chemotherapy paralysed her vocal cords, Billie was struggling to breathe and was diagnosed with subglottic stenosis (swelling). Then during a routine examination, doctors discovered her airway was as narrow as the inside of a biro pen and had to give her an immediate tracheostomy – a small surgical opening in her windpipe containing a plastic tube that allows air to flow in and out. 

“One of us has to be with her 24 hours a day because of the danger of the tracheostomy getting blocked, which makes everything harder. We carry a special suction machine around and tracheostomy box with all her equipment so we can unblock it if necessary. My Dad has just completed the training to do it which will help, but Billie can’t have sleepovers or do normal things like that.  

“She’s missed out on loads. We had to pull her out of nursery and she’s missed out on the social side of things so much. But she has met loads of other kids in hospital going through the same as her who have become her best friends. She’s such a bright little girl, nothing phases her, she’s happy and smiley. The tracheostomy means she can eat and drink normally but she can’t speak. That’s the hardest thing – it’s taken away her voice when she was just starting to speak. But we’ve learnt Makaton – a form of sign language that supports spoken words – on YouTube and she watches Mr Tumble who uses Makaton so we’ve all picked it up and can communicate that way. 

“We’ve tried to keep Ada’s routine as normal as possible and she’s hardly taken any time off school apart from when Billie was in intensive care. She’s so understanding of it, so good with Billie, although she doesn’t of course understand all the ins and outs. She struggles a bit with all the attention Billie gets and maybe has a few more tantrums because of it.” 

Billie celebrated her third birthday on 14th February 2024. It’s hoped that by the time she is four in 2025 she will have finished her maintenance chemotherapy treatment and will have her tracheostomy removed. Speech and language therapy will then help Billie catch up with her peers. In the meantime, Freyja is just glad to have her back home. 

“Sheffield Children’s Hospital have been amazing. They’re incredible people, we owe them everything for saving Billie’s life. You get to know everyone on the ward, from the cleaners to the play team and all the nurses and doctors, it’s like a little family. Friends and family have also been fantastic at rallying round, I don’t know what we would have done without them.” 

One of the friends who’s been on hand throughout Billie’s leukaemia treatment is 23-year-old Hannah Smith. Freyja and Hannah have known each other since they were Billie’s age as their mums are best friends. Hannah took a big role in making sure Ada’s routine remained normal and she got plenty of attention. 

Hannah, who works as a canine physiotherapist, has now committed to running the London Marathon 2024 to raise money for Leukaemia UK in honour of Billie.  

“Freyja’s mum, Lyndsay Harpham, rang me the evening Billie got her diagnosis to tell us that she had ALL,” said Hannah. “I remember that evening so clearly. It was heart-breaking and devastating, I just thought to myself how can this be real? However I just knew I had to be strong and do whatever I could to help and to help keeps Ada’s routine as normal as possible. Throughout Billie’s treatment I have picked Ada up from school, taken her to do fun activities, had her for sleepovers, and gone on many play dates. Since Billie’s diagnosis and seeing her have many blood transfusions I have also signed up to give blood and have officially given three blood donations with my fourth booked in.   

“Seeing Freyja and Zac go through what no family should have to go through over the past year has been heart breaking, however they really are a true inspiration to everyone around them and have shown amazing strength. I am so proud of them and I would be there for them within a heartbeat if they ever need anything. Since Billie has been diagnosed with ALL I have taken up running and have set myself the challenge to run the London Marathon. I am proud to be running to help those who really need it and playing my small part in helping find a cure for this awful disease that no child or family should have to go through.” 

Freyja set up an Instagram account @billiethebrave_ to help share Billie’s story, raise awareness and help others.  

“The chemotherapy they use is so harsh on little kids’ bodies,” said Freyja. “And when she has her week of steroids once a month it just changes her personality – she becomes angry, sad and starving hungry. I have to explain to Ada that her sister didn’t mean to be horrible to her, it’s just the medicine she’s on. It must be so hard for Billie though, wondering why she’s feeling so poorly. It would be nice to have a future where there are kinder treatments.”  

“Billie’s superhuman fighting spirit has been inspirational through everything she has gone through so far,” said Hannah. “Billie has shown amazing strength and resilience, as have her mummy, daddy and Ada.”