Nicola Francis’s life took an unexpected turn at just nine months old, when a seemingly innocuous tumble while learning to walk resulted in a swollen mouth. While the initial swelling subsided after a week, one side of her face continued to enlarge, baffling her mother, Iveta Kosova, and medical professionals alike. Repeated visits to the GP and dentist yielded no answers, leaving Iveta increasingly worried as Nicola’s face continued to swell. A subsequent fall and injury to Nicola’s cheek during a waiting room visit finally prompted a referral to Northampton Hospital, where an operation to remove some teeth was performed. However, the swelling persisted, leading to a biopsy that revealed a devastating diagnosis: Nicola had a giant cell tumour, a rare and aggressive condition characterized by painful growths in and around the jaw.
The diagnosis shattered Iveta’s world. The prospect of her daughter facing a challenging and uncertain future filled her with despair. Nicola was transferred to Great Ormond Street Hospital in London in March 2020, where the relentless growth of the tumour necessitated repeated surgeries every seven weeks. Iveta described the tumour reaching the size of her fist before each operation, a stark illustration of the aggressive nature of the condition. The lack of a definitive treatment meant that surgical removal remained the only option, a cycle that continued for an extended period.
In 2020, a glimmer of hope emerged when Nicola began receiving chemotherapy injections in her leg. This treatment proved effective in halting the tumour’s growth for three years, offering a much-needed respite for Nicola and her family. However, the relief was temporary. In July 2024, concerns about the long-term effects of chemotherapy on Nicola’s developing body led to the discontinuation of the injections. With the tumour once again growing unchecked, the family found themselves back in a state of uncertainty, grappling with the unknown and searching for alternative treatments.
By this point, Nicola had endured an astounding 20 operations to remove the recurring tumour. The most recent procedure involved fitting a plate into her jaw to compensate for bone loss from previous surgeries, enabling her to eat and experience greater comfort. Despite the physical and emotional toll of her ordeal, Nicola, now five years old, remained a remarkably happy child, finding joy in attending school whenever her health permitted. Her resilience and positive spirit shone through, inspiring her family and friends, who marveled at her courage in the face of adversity.
Behind Nicola’s cheerful exterior, however, lay a constant struggle. The ongoing medical challenges posed a significant strain on the family, not only emotionally but also financially. The frequent trips to London for treatment, coupled with the associated expenses, created a mounting financial burden. To alleviate some of the pressure, the family launched a GoFundMe campaign to help cover travel costs and other related expenses, hoping to ease the financial strain of Nicola’s ongoing care.
Giant cell tumours (GCTs), as described by Sarcoma UK, are non-cancerous bone tumours that typically affect people between 20 and 45 years of age. While benign, they can exhibit aggressive behavior, growing rapidly and potentially damaging the affected bone and surrounding soft tissue. Although rare, GCTs can, in some instances, become cancerous. Common symptoms include pain, swelling around the tumour, fractures due to weakened bone, and restricted movement. Treatment options vary depending on the individual case but may involve surgery or biological therapy such as Denosumab. Nicola’s case, while unusual due to her young age, highlights the challenging nature of these tumours and the need for ongoing research and treatment advancements. Her story serves as a testament to the strength and resilience of children facing serious medical conditions, and the unwavering support of families navigating the complexities of such journeys.
