Luke Bell was a remarkable young boy who had a lively and charming personality. He was inquisitive and compassionate and always stood up for what was fair and just. Despite being young, he had a keen grasp of sarcasm and loved spending time with his dad's rugby buddies. Luke shared a special bond with his mum and sister, who simply adored him. His loss at the age of eight from neuroblastoma is a tragic loss for everyone who had the pleasure of knowing him.
Luke Bell was only eight years old when he died of high-risk neuroblastoma, but the journey to his diagnosis was a challenging one that started during Christmas time in 2016. He was showing signs of fatigue that worsened over time, which worried his parents. Although he was an energetic and active six/seven-year-old, Luke struggled to walk short distances and frequently asked to be carried, blaming it on growing pains. However, when he began falling asleep in class, his parents took him to a GP who initially thought he had anaemia.
It was only after Luke developed a lump on his head that his parents pushed for more tests and found out he had cancer. Luke was diagnosed with acute leukaemia after additional tests. It was initially considered a positive diagnosis because it was a well-known and treatable cancer. However, doctors later discovered a tumour, confirming that he had neuroblastoma, a childhood cancer that develops in nerve tissue.
To treat the neuroblastoma, Luke underwent ten cycles of chemotherapy, immunotherapy, and radiotherapy, and by Christmas 2017, his body was free of cancer. Unfortunately, the probability of relapse in this type of cancer was high, and Luke relapsed in April 2018.
After Luke's cancer had spread throughout his body, his family searched for clinical trials and enrolled him as the first patient on an international MiNivAN trial in Southampton. Despite the diagnosis being terminal, Luke remained positive and responsive throughout the treatment.
As his family tried to come to terms with the devastating news, they faced the daunting task of making the most of the precious time they had left with him. Luke passed away on December 23, 2018, which left his family heartbroken but determined to honour his memory.
They used their grief and pain to establish a neuroblastoma awareness charity in his name. The goal of the charity was to raise awareness and funds for research to prevent other families from suffering the same tragedy.
Luke's family's dedication to their son's wellbeing was evident when they raised an incredible £125,000 to fund his neuroblastoma treatment, in Barcelona. He was offered a place to receive Hu3f8 treatment in Barcelona but Luke died before the date his treatment was due to start. After his passing, they decided to continue their efforts by creating a charity, TeamLuke, to raise awareness and support for neuroblastoma patients and their families.
Despite the challenges they faced navigating the complex world of charities, they remained committed to their principles and worked tirelessly to bring existing charities together to collaborate and fill gaps they had experienced during Luke's treatment.
TeamLuke has made significant strides in raising awareness of neuroblastoma and its symptoms, with a particular focus on misdiagnosis. Using word of mouth and social media, they have distributed posters and leaflets in GP surgeries, children's centres, and other relevant places to educate the public about the importance of early detection and diagnosis.
Over the past five years, the charity has received remarkable support and engagement from the community, earning the respect of other charities and providing guidance to a new charity in development. Their impact in raising awareness for this devastating disease is truly heartwarming.
TACKLING. NEUROBLASTOMA. TOGETHER.
Although neuroblastoma is a devastating disease, progress is being made in its diagnosis and treatment. Cases like Luke's have raised awareness, and the government is now more aware of the need for better treatments for childhood cancer. While the toxicity of treatment can be a challenge, research projects are striving to develop personalised treatment plans for children.
Parents facing a neuroblastoma diagnosis should remain strong and positive while educating themselves on the available options. Charities like TeamLuke can provide vital support and information to help families navigate the complex process of diagnosis and treatment.
Luke's legacy lives on through the incredible work of his family and the TeamLuke charity, which has made a meaningful impact in raising awareness and providing support to those affected by neuroblastoma. As we continue to make strides towards better treatments and outcomes for children with cancer, let us not forget the inspiring courage and determination of young fighters like Luke.
Through collaboration with the world-renowned Institute of Cancer Research (ICR), our foundation drives impactful projects that aim to make a difference in the fight against cancer.
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