A mom has spoken out about how her "puffy eyes" led to a life-altering and near-fatal health diagnosis.
For Lizzie, a 56-year-old professional cellist from England, life has been a series of health battles.
The mom has faced a lifetime of medical challenges. Diagnosed with Immune Thrombocytopenia (ITP) at 17, she had her spleen removed at 21, leaving her immunocompromised.
Later, in 2020, she was diagnosed with fibromyalgia. Yet, it was her daughter’s sharp eye in February 2021 that set in motion a life-saving journey.
“At that time, Lowri was studying from home due to Covid,” Lizzie explained. “She spotted I had big bags under my eyes - they were huge - and urged me to see a GP. I said no, but she insisted. I owe my daughter an awful lot.”
Initially, the GP suspected an allergic reaction to Lizzie’s morphine patches for fibromyalgia, but blood tests told a different story. Weeks later, a hospital in Burton-on-Trent called to report anomalies in her results, leading to an urgent bone marrow biopsy at Derby Royal Infirmary.
“They told me I had leukemia,” Lizzie recalled to Leukemia UK. “Looking back, I’d been having night sweats, which I attributed to menopause, and fatigue, which was normal for me. But when they mentioned a bone marrow biopsy, I knew it was serious.”
On March 3, 2021, Lizzie was officially diagnosed with ALL - acute lymphoblastic leukemia.
What followed was eight weeks in Nottingham City Hospital undergoing chemotherapy. However, full remission required a stem cell transplant. With no donor match available, her only hope was her daughter, Lowri.
Born nine weeks prematurely in 1999 after Lizzie had endured six miscarriages, Lowri has always been a miracle to her mother.
“I was told she might have developmental problems, but she excelled — she even got into Oxford to study English. I’m so proud of her. And then, she saved my life,” she heartwarmingly shared.
Lowri was a sufficient half-match for the transplant. On September 8, 2021, Lizzie received her daughter’s stem cells, followed by a donor lymphocyte infusion in March 2022.
For 20 months, the mom enjoyed remission, resuming her music career part-time and spending cherished moments with her fiancé John and their doodle dog, Scout.
But in November 2023, a routine blood test revealed the leukemia had returned. Lizzie hadn’t recognized the warning signs, saying: “The puffy eyes came back on holiday, but I blamed cocktails and lack of sleep."
Her only chance of survival was CAR-T therapy, newly authorized for adults by the NHS. Lizzie said the process was grueling, sharing: “Outpatient chemo started again, which was a 100-mile round trip. I became very unwell - losing my sight in one eye and needing a wheelchair."
After an agonizing wait, Lizzie was approved for CAR-T by the Cancer Drugs Fund. In February 2024, her T-cells were collected, processed, and reinfused on March 30. She became Nottingham University Hospital’s first adult CAR-T patient for relapsed ALL.
Today, Lizzie is in remission, confirmed on August 1, 2024. Reflecting on her journey, Lizzie said: "My world fell apart when I relapsed, but thanks to my incredible family, friends, and the NHS team, I’m here. Nothing in life is certain, so I’m taking one day at a time and seizing every moment."
Sharing her story, Lizzie now wants others to be more aware of the symptoms. “I have a t-shirt that says, ‘I am the data,’” Lizzie joked. “CAR-T is still so new.”
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