02 Mar 2023

Raising awareness of the symptoms of leukaemia: Elizabeth and Jonathan’s story

Elizabeth (Liz) Taylor died in July 2022 of APML, a very rare form of leukaemia, at just 51 years old. Her devastated husband Jonathan has chosen to share their family’s story to raise awareness of the symptoms with this type of aggressive blood cancer, and to encourage the funding of research and education into more effective diagnosis processes and treatments.

Here is their story.  

Liz was tragically diagnosed with acute promyelocytic leukaemia (APML) the day before she passed away. And although she’d suffered over six months of varying symptoms leading up to her eventual hospitalization, her diagnosis came too late. 

Up to May 2022, Liz and her husband Jonathan, who live in Desford, Leicestershire, simply thought her ongoing fatigue and tiredness was down to a hectic lifestyle. But over the subsequent months, Liz rapidly began to develop other symptoms. These included a severe pain in the sternum area of her chest, a pain in her leg, migraines and blurred vision and then eventually heavy bleeding. 

“Liz, who worked as a full time Teaching Assistant at Stafford Leys Primary school in Leicester, went to the optician to enquire about the migraines,” said Jonathan. “There was no problem found with her eyes and she was advised to go to her GP who gave her a blood test. This showed her blood count was very low and was at serious risk of infection, but no reason could be found other than possibly some kind of virus.” 

The migraines and blurred vision steadily increased and became more frequent which eventually prompted a visit to A&E. Here Liz was diagnosed with neutropenia – a low number of a particular type of white cells in her blood. But again no cause was found. 

Her symptoms continued to worsen. Finally having received the results of an MRI scan which showed multiple infarcts (marks on the brain), Liz was diagnosed with effectively having continued mini-strokes and was immediately admitted to Leicester Royal Infirmary.  

“Given blood clots are generally a major cause of strokes, the hospital’s initial diagnosis was that a heart problem had been causing the multiple blood clots and strokes – which later proved not to be the case,” said Jonathan. “During the following ten days Liz underwent numerous cardio checks and assessments, during which time she suffered a larger, more serious stroke. Having been initially cancelled due to her hospital admission ten days earlier, eventually a bone marrow test was scheduled.” 

Once the bone marrow results came back, Liz was diagnosed with APML. She tragically passed away the day after her diagnosis on July 14th 2022 from a brain hemorrhage, a direct effect from the previous stokes.  

Only 160 people in the UK are diagnosed with APML each year. Although patient symptoms are often similar as other leukaemias, its appearance isn’t easily detected in blood samples. APML is a very aggressive, rapidly-developing cancer which can normally only be conclusively diagnosed with a bone marrow biopsy.  

“Initially I was searching the internet trying understand more about the rare APML type Liz was eventually diagnosed with when I came across Leukaemia Care and Leukaemia UK’s #SpotLeukaemia campaign,” said Jonathan. “This prompted me to wish if only I and the medical teams caring for Liz had the knowledge and foresight to identify the signs earlier, Liz could have been diagnosed sooner. She passed away on the day after her APML diagnosis aged 51, without having had any opportunity for treatment. 

“The family, in particular her two daughters Kate 26 and Charlotte 23, are still coming to terms with her loss, struggling to truly accept what has happened and how or why their beautiful mum was taken so young. The entire family including her Mum, Dad, and Brother are still numb and in shock that someone so young, fit and healthy can be taken in this way.” 

Jonathan and Liz’s friends and family are raising money for Leukaemia UK and other leukaemia charities to fund campaigning work to raise awareness about leukaemia symptoms and research into more effective treatments. They’re organizing a luncheon at the local Rugby Club in Hinckley on 1st April, staging a Summer Solstice Walk on June 21st (the longest day), and arranging a Golf Day and various 5k and 10k runs throughout the year. 

In 2024 and beyond they’re potentially planning a major event focused around Dubai, where Liz lived for many years and loved to return. The Desford to Dubai or Miles for Liz’s Smiles campaign will encourage people walk, run, cycle or swim a total of 4,500 collective miles.  

“We want to urge people not to dismiss any sign or symptom they may have or put it down to daily aches and pains we all often suffer, irrespective of age,” said Jonathan. “Before Liz’s eventual diagnosis, the tell-tale signs were dismissed as fatigue, menopausal, migraines and eye deterioration. Even later having suffered from mini strokes the prognosis was to investigate it from a cardiology not from a haematology viewpoint. Sadly, for Liz, the now-obvious multiple symptoms she had from APML were never all joined up, and heartbreakingly the eventual bone marrow test came too late.  

“Guilt isn’t the right word, but there is widespread remorse and regret that with all of Liz’s symptoms the family and medical teams hadn’t been knowledgeable enough to understand and link together the true symptoms of APML. Our focus now is on leaving a positive legacy in Liz’s name, through charity events and raising awareness on the early signs of Leukaemia, in particular APML.” 

Signs and symptoms of APML include but are not restricted to: 

  • Fatigue – caused by low numbers of red blood cells (anaemia) 
  • Repeated infections – caused by low numbers of white blood cells 
  • Blood clots which could lead to pains around the body, headaches or problems with vision 
  • Bruising and bleeding easily – caused by low numbers of platelets   
  • Unexplained weight loss 

If you have any concerns about possible APML symptoms, please speak to your GP. 

You can donate to the fundraiser set up by Liz’s family and support research into leukaemia.

Want to read more about others who have been diagnosed with leukaemia? Read Sinead’s story about her diagnosis.

Read more stories from our community.

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