Carys’ Journey: Overcoming a Life-Threatening Illness with Hope and Resilience

Carys’ Journey: Overcoming a Life-Threatening Illness with Hope and Resilience

Carys was a lively, engaging, and sociable young girl. Her parents, Mark and Laura, cherish memories of her early years. She was inquisitive, eager to make others happy, and appeared to be in perfect health. “Carys was basically ticking every box, and we were very comfortable with how things were going for her,” Laura reminisces. “She was always bright and eager to please.” The family’s life felt typical, filled with school, playdates, and family outings. However, the tranquility of her early childhood was soon disrupted by a health crisis that would alter their lives forever.

The initial signs of trouble emerged just as the family was gearing up for a long-anticipated vacation to Fiji. Carys developed an ear infection, leading to a doctor’s visit. Shortly after, she began to suffer from nosebleeds, unusual bruising, and a noticeable decrease in energy. At first, Laura hoped these symptoms were minor, possibly linked to the ear infection or the pressures of daily life. But as days went by, her concerns grew. With COVID-19 restrictions making healthcare access challenging, securing appointments was tough. When Laura took Carys’ younger brother, Cohle, for his vaccinations, she decided to bring Carys along for a check-up. The GP’s response was immediate: take her directly to the hospital.

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Mark dropped Laura and Carys off at the hospital, expecting a routine check-up. Within an hour, he received a call that made his heart drop: “Come back to the hospital; it’s more than just an ear infection.” Blood tests confirmed their worst fears. Carys’ white blood cell count was alarmingly high — the second highest the doctors had ever encountered. It became evident that she was gravely ill. Laura vividly recalls the moment: “About an hour and a half later, I went into shock. I just remember sitting there feeling sick.” Carys was diagnosed with acute lymphoblastic leukaemia (ALL), a life-threatening cancer affecting the blood and bone marrow. The news was devastating, made even more harrowing by the realization that had they boarded that plane to Fiji, Carys’ illness could have been fatal. “If we’d put her on that plane to Fiji, she would have died there,” Laura reflects.

Treatment commenced with efforts to stabilize her dangerously elevated white blood cell count. Only after this could chemotherapy begin. The initial months were filled with fear, uncertainty, and intense medical intervention. Laura recalls being repeatedly warned that Carys’ condition was critical. “We were warned that we might lose her,” she shares. The chemotherapy was harsh: fevers, skin issues, and periods when Carys ceased to communicate altogether. Each treatment cycle tested her strength and the resilience of her family. Yet, through the pain and fear, Carys displayed a bravery that inspired everyone around her.

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After months of treatment, Carys finally completed her first round of therapy. She returned home, rejoined her school, and began to reclaim her childhood. For a while, it seemed the family could return to a semblance of normalcy. However, the relief was short-lived. During a routine check-up two and a half years later, blood tests revealed concerning irregularities. Late in the afternoon, Laura received a call from the hospital: Carys had relapsed. It was Halloween 2023, a date that would forever be etched in their memories.

The relapse was heartbreaking. Carys had previously completed treatment and had been told she had a 90% chance of not relapsing. “Receiving that news of the relapse is probably the worst thing that’s ever happened to me in my entire life. It was so devastating,” Laura recalls. The family faced a return to hospital life, uncertainty, and the emotional burden of knowing that the upcoming fight might be even tougher than the first. Carys herself struggled to grasp what was happening, needing time to understand that she would once again endure painful treatment and extended hospital stays.

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Early in this second round of treatment, the family enrolled Carys in the Zero Childhood Cancer Program (ZERO), which allowed for advanced genomic testing to inform her therapy. In January 2024, the oncologist revealed the results: Carys’ leukaemia was not the common B-cell ALL initially diagnosed but a rare subtype known as Philadelphia chromosome-like ALL (Ph-like ALL). This discovery significantly altered the treatment plan, introducing new possibilities but also new uncertainties. Meanwhile, Carys remained critically unwell, and her parents feared for her life during the initial weeks of treatment.

The second battle involved a combination of chemotherapy, radiotherapy, immunotherapy, and a bone marrow transplant. The regimen was grueling. At one point, Carys spent a week intubated in the intensive care unit, battling both the disease and the severe side effects of her treatment. Laura and Mark took each day as it came, focusing on small victories: a stabilized temperature, a completed therapy session, a moment of communication or a smile. Gradually, the treatment began to take effect, and after eight months, Carys started to emerge from the ordeal stronger and more resilient than anyone could have imagined.

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By 2025, Carys had returned to school, entering Year 6 with the joy of childhood restored. She reconnected with friends, re-engaged with her community, and began to enjoy life beyond the confines of the hospital. “The future will always be a little uncertain, but the longer she goes without relapsing, the easier life becomes,” Laura states. The family remains vigilant, understanding that regular check-ups are crucial, but they are also thankful for every day that Carys spends healthy, happy, and growing.

Mark and Laura express deep gratitude for the support from ZERO and their community. “We want people to know that this program truly has real-world impacts,” Laura emphasizes. “Treatment options and outcomes for so many children are radically different because of it.”

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Carys’ journey is one of courage, resilience, and hope. Twice, she has confronted life-threatening illness, endured intensive treatment, and emerged with strength beyond her years. Her story serves as a reminder that with determination, love, and community support, even the most daunting challenges can be overcome. Every smile, every step, and every day she thrives is a testament to her bravery and the extraordinary impact of research and care for children battling cancer.