Fireside Chat: Lucy Ellerker-Jones, Founder, Opie Jones Foundation

In a deeply moving presentation, Lucy, mother of five and social worker, shared the incredibly personal and challenging story of her son Opie's battle with infant acute lymphoblastic leukaemia. Her account offers a powerful glimpse into the realities of childhood cancer treatment and the family's journey through hope, despair, and ultimately, resilience.

Key Points from Lucy's Story:

• Unexpected Diagnosis: Opie, Lucy and Lewis's baby boy, was diagnosed with high-risk leukaemia at just five months old after what initially seemed like a minor illness. The diagnosis shattered their normal family life, plunging them into a world of hospitals and uncertainty.
• Brutal Chemotherapy and Bone Marrow Transplant: Opie endured multiple rounds of intense chemotherapy, which Lucy described as incredibly toxic, causing severe side effects like third-degree burns and mouth sores. When chemotherapy failed, Opie underwent a bone marrow transplant, requiring a gruelling five-week hospital stay for Lucy and Opie, separated from the rest of their family.
• Relapse and the Hope of CAR-T Therapy: After a period of hope and celebration following the bone marrow transplant, the devastating news of Opie's relapse arrived. This led them to CAR-T therapy at Great Ormond Street Hospital, a treatment they had initially learned about but hoped would never be necessary.
• CAR-T: A Kinder, More Tolerable Treatment: Lucy highlighted the stark contrast between CAR-T therapy and previous treatments. While still requiring hospitalization, CAR-T was remarkably less toxic for Opie. His recovery was quicker, with fewer side effects compared to chemotherapy and the bone marrow transplant. He didn't lose his hair and was more interactive during this treatment phase.
• Questioning Treatment Protocols: Witnessing the comparative tolerability of CAR-T led Lucy and her husband to question why this kinder treatment wasn't offered as a first option, rather than after exhausting and highly toxic conventional treatments.
• Beads of Courage: A Tangible Representation of Ordeal: Lucy poignantly presented Opie's "Beads of Courage," a collection of beads, each representing a medical procedure or milestone in his treatment journey. This visual representation powerfully illustrated the immense burden and trauma endured by such a young child.
• The Opie Jones Foundation: Turning Pain into Purpose: Driven by their experience and a desire to help other families, Lucy and Lewis established the Opie Jones Foundation. The charity focuses on providing mental health support to families affected by childhood cancer, recognizing the profound and often overlooked trauma they experience. They also advocate for kinder and more effective treatments to be available sooner for children like Opie.
• A Message for the Medical Community: In a powerful closing statement, Lucy thanked everyone in the pharmaceutical industry, labs, and policy makers for their work, emphasizing that their efforts directly contributed to saving her son's life. Her plea to remember Opie and all patients underscores the human impact of their work and the ongoing need to push for better treatments.