A former dance teacher who planned her daughter’s funeral “100 times over” in her head while she was gravely ill with leukaemia says that seeing her own child sail that close to death has inspired her to become an undertaker.
When tests showed that Lisa Nicholl’s six-month-old daughter Savannah did not simply have a “troublesome cough” but had juvenile myelomonocytic leukaemia, a rare type of blood cancer, the devoted mother said her “world crumbled.”
Although she survived, Savannah, now 14, was left with brain scarring and epilepsy from a spinal infection, while Lisa, 36 – who is also mum to Chelsi, 18, Taila, 16, Zaidee, 11, and Romeo, four- quit her job to care for her.
Fearing she might lose the child she adored, single Lisa, of Truro, Cornwall, was left wishing that death was not a taboo subject and that people were better prepared to face it.
And after speaking at a friend’s funeral in late 2018, she became convinced she could help families to cope with loss by becoming an undertaker, saying: “I want to break the silence surrounding life’s final taboo – death.”
Volunteering twice a week as a funeral assistant, she plans to complete a family and funeral celebrant diploma next year, so she can finally land the job which she is convinced will help her to make a difference.
She said: “People assume because you want to work in the funeral industry that you love dead bodies – of course I don’t.
“It’s about looking after people in their final moments and paying tribute to the life they lived.
“I realised after nearly losing Savannah that we’re never prepared to lose a loved one – especially our children.”
She continued: “All I could think about was what kind of funeral she would want.
“It may sound morbid, but if death wasn’t such a taboo, maybe bereaved families wouldn’t struggle so much with the idea of burying loved ones.
“That’s why I got into this industry, because I want to make a difference and to help.”
Before Savannah’s illness, the thought of being an undertaker had never crossed Lisa’s mind.
Instead, in 2005, she had the job of her dreams – running her own hip-hop dance schools for people aged from four to 24.
“It was a dream come true,” she said. “I taught 150 students and twice a year we’d put on big performances at the local town hall.”
She continued: “We were well known in the area and would raise lots of money for charity from the shows.”
But, when Savannah was just three months old, Lisa grew concerned about her nasty, persistent cough.
Suffering with a high temperature and sniffles, doctors suspected the tot had a chest infection.
“The doctor was convinced it was nothing serious and prescribed antibiotics,” said Lisa.
But, with the cough still persisting three months later – and after several more visits to the surgery – Savannah was referred for further tests.
“The doctor agreed to do some blood tests to rule out anything sinister, to put my mind at rest more than anything else.”
Just a week later, in June 2006, Lisa’s world came crashing down when doctors told her the tests indicated Savannah had blood cancer.
Referred to Royal Cornwall Hospital for bone marrow testing, the results confirmed that she had juvenile myelomonocytic leukaemia, a rare type of blood cancer.
“I couldn’t believe what I was hearing,” Lisa said. “I had been told it was most likely a chest infection and here I was being told my little girl had cancer.”
Told the only treatment for the condition was a bone marrow transplant, Lisa and her two eldest daughters were tested to see if they were a match – with all three coming back negative.
But, in November that year, she received a life-changing call – an anonymous donor had been found through the bone marrow donation database Anthony Nolan.
After six weeks of pre-treatment chemotherapy, to prepare her body for the bone marrow transplant, Savannah spent her first birthday and Christmas in Bristol Royal Children’s Hospital, before having the procedure in January 2007.
Within days of the operation, by which time she was barely a year old, Savannah developed acute disseminated encephalomyelitis (ADEM), which the NHS defines as a rare inflammatory condition that affects the brain and spinal cord.
“Doctors said if it wasn’t for the cancer and treatment her body would have fought off the infection easily,” Lisa said.
“But her immunity had been wiped out and she slipped into a coma.”
Pumped full of antibiotics, after four days and showing no sign of improvement, Savannah’s family were told to say their goodbyes.
“We sat by her bed literally preparing for her to pass away. It was the darkest moment of my life,” said Lisa.
“She was in a coma for days and I must have planned her funeral 100 times.”
She continued: “All I could think about was how we were going to say goodbye to our little girl.”
Miraculously, after six days, Savannah started responding and slowly began to regain consciousness.
While Lisa was overjoyed to hear that the bone marrow transplant had been a success – eradicating her daughter’s cancer – the ADEM had left Savannah with brain scarring and epilepsy, a neurological disorder that can cause seizures.
“We saved her life, but this was the price we paid,” said Lisa.
Putting her dance tutoring career on hold to become Savannah’s full-time carer for over a decade, Lisa increasingly found herself drawn to the funeral industry.
And, when a dear friend lost their child in 2015, she immediately offered her support to the grieving mother.
“I reached out to the mum and let her know I’d do whatever I could to help,” she said.
“She was so overwhelmed at the time and I just wanted to offer some comfort to her.
“I helped with making plans for the funeral and spent a lot of time working on the eulogy and helping people write their speeches.”
She continued: “That’s when I realised I had a knack for funeral planning and supporting people in times of grief.”
But, it was not until she lost her dear friend, Reverend Julyan Drew, that Lisa finally decided to pursue a new career as an undertaker.
She continued: “The Reverend had been a huge part of my life ever since Savannah was poorly – and always had her in his prayers.”
She continued: “We were a funny pair, as I didn’t believe in God and obviously he did, but we got on so well.
“I’d confided in him my desire to become involved in the funeral industry and, the friend that he was, he made me promise to deliver his eulogy when he passed away.”
So, when Reverend Julyan died aged 64 in November 2018 from pancreatic cancer, she was only too happy to stand up and speak.
“It was an absolute honour to stand up in front of Julyan’s loved ones and help celebrate his life,” she said.
“It was just months after Savannah had started going to a special needs school and I thought, ‘This is it. You’ve got to make this funeral work happen.’”
But, after months of struggling to find an apprenticeship or entry-level job in the industry, Lisa decided the only way to climb the undertaker ladder was to volunteer.
So, she started helping out as a volunteer to funeral director Scott Watters, at the Cornwall Funeral Service in Redruth, twice a week in August 2019.
“I looked and looked for a way to get into the funeral business but with no experience or training, it simply wasn’t doable,” she said.
“Then, with Savannah back at school, I was finally at a point where I could sacrifice two of my days to pursue something for me.”
Thrown in at the deep end, Lisa will never forget her first day on the job.
“There was no holding back,” she said. “On my first day I saw three dead bodies.
“I saw them washed and made them up.”
She continued: “Now I do everything you’d expect someone who works as a funeral assistant to do.
“I collect bodies and wash them. I’ll do their make-up and nails, or give them a shave.
Now she has volunteered for over a year, Lisa hopes to complete a family and funeral celebrant diploma in 2021.
“People often ask why I want to do this,” she said. “I feel that it really is the greatest honour – helping someone on their final journey.
“Death is the last taboo and I want to help break that.
“No one talks about dying and, as someone who nearly lost their child, I think we need to talk about death to prepare us for it – after all, it’s the one thing that we can’t avoid in this world.”
She concluded: “I want to help people to celebrate the lives of their loved ones in a positive way.
“Even death doesn’t all have to be doom and gloom.”