Young Girl’s Delayed Cancer Diagnosis Sparks Awareness Campaign

A family in Bridgend County faced a harrowing ordeal after their daughter, Lacie John, was diagnosed with B-cell acute lymphoblastic leukaemia (ALL) following months of misdiagnoses. The young girl, only four years old in 2022, exhibited persistent symptoms that were initially dismissed by medical professionals, leaving her family devastated when they finally received the correct diagnosis.

Lacie’s mother, Jess John, recounted the numerous visits to healthcare providers over a span of seven months. The little girl suffered from frequent colds, bouts of sickness, fatigue, and even chickenpox. “She was always tired and complaining her legs were hurting,” Jess, a primary school teacher, explained. Despite her mother’s concerns, Lacie was repeatedly reassured that there was nothing to worry about.

The situation escalated when Lacie developed a noticeable lump on her neck. After being admitted to the hospital, doctors struggled to identify the cause of her symptoms. Following a week of severe symptoms, including vomiting and a high fever exceeding 40 degrees Celsius, Lacie was transferred to Noah’s Ark Children’s Hospital in Cardiff. There, she was diagnosed with ALL, a rare and aggressive form of leukaemia primarily affecting children aged between 0 and 4 years.

According to Leukaemia UK, every day, 28 individuals in the UK receive a leukaemia diagnosis. The symptoms can vary widely and often do not point directly to the disease, making it easy to overlook or misdiagnose. Common symptoms include extreme fatigue, unusual bleeding, and repeated infections.

The diagnosis shattered Jess and her husband Grant’s world. “We were heartbroken and in denial. I remember feeling numb,” Jess shared, reflecting on the emotional turmoil following the diagnosis.

Lacie began chemotherapy immediately, but initial tests showed the treatment was ineffective. She was placed on a more intensive regimen, receiving Blinatumomab, a specialist drug not routinely available on the National Health Service (NHS). After a successful funding application, Lacie underwent two cycles of this treatment, which was administered continuously through a PICC line and backpack.

“Thankfully the Blinatumomab worked after the second cycle,” Jess noted. Despite the rigorous treatment, Lacie faced numerous challenges, often requiring hospitalization and the use of a naso-gastric tube to help her maintain weight. “The whole year was tough in different ways,” Jess stated, acknowledging the emotional and physical strain on the family.

Lacie’s resilience has shone through, as she is now back in school and in the maintenance phase of her treatment. Jess has also found strength in a new community of parents whose children are facing similar battles. A close friendship with Charlotte, whose daughter Betsy was diagnosed shortly after Lacie, has been particularly supportive. “The girls call each other sisters,” Jess said, emphasizing the bond formed through their shared experiences.

Looking ahead, Jess shared Lacie’s dreams for the future: a trip to Tenerife, getting a pet rabbit, having her ears pierced, and starting swimming lessons. “Above all, we pray for her to remain healthy and cancer-free,” she added.

September marks Blood Cancer Awareness Month, and organizations such as Leukaemia UK and Leukaemia Care are urging the public to familiarize themselves with the symptoms of leukaemia through their #SPOTleukaemia campaign. Jess has actively supported this initiative by sharing Lacie’s journey, hoping to raise awareness and help others.

Fiona Hazell, Chief Executive of Leukaemia UK, emphasized the importance of recognizing the signs and symptoms of leukaemia. “Early diagnosis saves lives, so we want to ensure more people are aware of the signs and symptoms and know to contact their GP for a full blood count test,” she stated.

Colin Dyer, Chief Executive of Leukaemia Care, echoed these sentiments, highlighting Lacie’s story as a powerful reminder that leukaemia can affect anyone, regardless of age. “Too many people can spend months searching for answers before receiving a diagnosis,” he remarked, underscoring the significance of the #SpotLeukaemia campaign in promoting awareness and encouraging timely medical intervention.

Through her advocacy, Jess John aims to ensure that other families do not have to endure the same uncertainty and heartache that her family faced.