A grieving mother has channeled her profound loss into a mission to transform a hospice, aiming to create a more welcoming environment for families facing similar heartbreak. Kirsty Boles’s eldest son, Jack, died of acute myeloid leukaemia (AML) in 2021, just months before his 21st birthday, leaving his mother with indelible memories of his final days.

Kirsty vividly recalls the “walk from hell” down a long corridor to see Jack at the Hospice in the Weald, a journey that overwhelmed her with grief before she even entered his room. Her son was the youngest patient on the ward at the time, and the stark reality of the hospice’s purpose contrasted sharply with the immense love and care she found there.

Jack’s battle with AML began 18 months before his death, with what his mother describes as “extremely subtle” symptoms. Initially dismissed as common ailments like shoulder pain from awkward sleeping, headaches, and tiredness, the true severity of his condition became apparent when Jack mentioned swollen testicles. This symptom prompted a medical investigation that led to his devastating leukaemia diagnosis.

The diagnosis in July 2020, when Jack was just 19, shattered the family’s world. AML, a fast-growing blood cancer, had already spread to his lungs and heart. The initial shock was compounded by the visible yellowing of his skin, a stark indicator of his deteriorating health, as his mother rushed to be by his side at the hospital.

Jack’s treatment involved seven months of intensive chemotherapy at University College London Hospitals NHS Foundation Trust. The COVID-19 pandemic added significant emotional strain, restricting family visits and forcing difficult choices about who could spend time with him. Despite the challenges, Jack maintained an astonishingly positive attitude throughout his ordeal.

His resilience shone through until the night before a crucial bone marrow transplant on his 20th birthday. He confessed his fear of dying to his mother, a moment of vulnerability that led to one of the most difficult conversations they ever shared. Tragically, after receiving the all-clear post-transplant, the cancer returned six months later, with his symptoms reappearing.

With the devastating news that Jack would not reach his 21st birthday, the family organized an early celebration, attended by approximately 300 loved ones, to honor his life. Jack, dressed smartly and in good spirits, relished the occasion. His final days were spent at Hospice in the Weald, where he shared a poignant final walk with his mother.

Jack passed away peacefully in his chair, surrounded by his siblings, who held onto different parts of him as they expressed their love. His last moments were marked by a nod, a massive smile, and a peaceful departure, a memory Kirsty cherishes amidst her profound grief.

Two years later, Kirsty is now a dedicated volunteer at the hospice, offering support to other families navigating similar experiences. She aims to provide a beacon of hope, assuring them that healing and moving forward are possible, even if the pain of loss never truly fades.

Driven by her own experience, Kirsty is actively involved in the hospice’s refurbishment plans. She is working with architects and other stakeholders to transform the inpatient corridor and patient areas into brighter, more welcoming spaces. Her vision is to ensure that the physical environment reflects the love and care within, helping to alleviate the fear and distress of those entering the hospice.

The ambitious renovation project seeks to create a more therapeutic and uplifting atmosphere, bringing elements of the outside in to foster a sense of peace and well-being for patients and their families. Kirsty’s commitment underscores the profound impact one individual’s journey can have on an entire community.

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Keywords: acute myeloid leukaemia, AML symptoms, leukaemia in young adults, hospice care, palliative care, grief support, cancer patient experience, mother's advocacy