Lily's Story,
told by her parents, Emily and Josh.

Lily Harley was one of those people that you met and then never forgot. She had a huge impact on so many people as she spread her positivity, love and kindness throughout the world. She was a soul like no other, her intelligence and social skills so good for her age. She never stopped laughing, smiling, or playing – even on her darkest day. She felt and showed so much love towards everyone and everything she came across, always making herself and those around her happy with her smile, jokes and dancing. 

Lily was born on 30th January 2019 and spent the first two years of her life as a completely healthy child. In December 2021, Lily began to present with her head tilted to the left and became off-balance when she walked. We didn’t think much of it at the time: Lily had always been a child that thrived from routine and we thought that excitement and the lack of naps at Christmas had made her overtired. In January 2022, Lily’s childminder and nursery teacher also noticed the symptoms and raised their concerns. Lily was taken to her local Urgent Care to be checked, where we assumed she may just have an ear infection or potentially a problem with her eyesight. After no signs of infection were found, Lily was sent to her local hospital for a CT scan which came back clear. The doctors told us that she had likely pulled her neck muscle and that she would need physio. However, over that weekend, Lily’s balance became worse and we took her back to the hospital. Over the next couple of days, Lily became extremely unwell and barely conscious. She had another MRI scan which showed she had a brain tumour. 

Lily got transferred to Sheffield Children’s Hospital, where she immediately underwent surgery to insert a drain to remove the fluid in her head. She then underwent two further brain surgeries which both lasted 10 hours to remove her tumour and take a biopsy. This confirmed that her tumour was a type of cancer called a Grade 3 Ependymoma. Lily spent 5 weeks on the neurological ward, in which she had to learn to do everything again after surgery. She had a NG tube fitted to assist her with feeding whilst she learnt to swallow, talk, sit, crawl, stand and walk again. 

After 5 weeks, we flew to Essen, Germany with Lily where we stayed for just over two months so that Lily could receive Proton Beam Radiotherapy. She went under general anaesthetic 5 days a week in order to receive 33 rounds. 

When the three of us returned to England in May 2022, Lily began her chemotherapy as part of a clinical trial. Lily underwent 7 rounds of chemotherapy, all of which involved a minimum of a 3 day stay in hospital with her mum. Due to the nature of the chemotherapy and the fact that Lily had a broviac line, everytime she had a temperature -which occurred after every chemotherapy round- we had to travel 2 hours with Lily to stay in Sheffield Children’s Hospital so she could receive IV antibiotics and have blood tests. The chemotherapy meant that Lily lost her hair, her appetite and her strength, but her resilience and character meant that she never lost her smile or desire to carry on doing everything she loved.

Lily finished her chemotherapy in September 2022 and in October had a clear MRI scan, meaning during treatment the cancer had not returned. This left family and friends excited and hopeful for the future, particularly with how well Lily was doing. She had her NG tube removed and was back to her wonderful self.

Unfortunately, a routine scan in January 2023 showed that Lily’s cancer had returned, and although it was not in its original place, the scan showed three tumours in her spine and one in her brain. Lily was immediately put onto steroids and we were told that due to the fast and aggressive return of the cancer, she would now be palliative: there was nothing else anyone could do. Thanks to generous help from friends, families and strangers that had heard Lily’s story, we took her to Disneyland Paris, Center Parcs, London and on other various days out to make the most of our time left together. We started an Instagram called @lilyharleysbucketlist to chart our memories together. A heartbreaking title of a social media page for a four-year-old to have.

Lily received one round of radiotherapy on her spine in Leeds to attempt to slow down the growth of the tumours and keep her quality of life the best it could be for as long as possible and she started a small dose of maintenance chemotherapy at home. However, in March, Lily began to complain of headaches and a further scan showed that Lily now had multiple tumours all over her brain and that the months she had been given had reduced to weeks. Neither the doctors, nor ourselves, could believe how well Lily presented considering what her body was going through.  

Just over a week later, Lily passed away on 28th March 2023, at 4am, in our arms. In true Lily style, she was smiling, singing, talking about her dogs and playing until the very end.

Although Lily’s time on earth ended far too soon, it has had an impact on so many. The happiness and love that she spread spoke volumes and she was a blessing. As her parents, we hope that her life and legacy continue to be impactful and we will strive to make a difference to others faced with our situation. For this reason we have set up Lily’s Rainbow Fund to raise money for other children in her situation. Please find out more by clicking on the link. We hope her photos bring happiness and the thoughts of her bring laughter and that every time someone sees anything purple or related to rainbows or unicorns, they think of Lily.