The first thing that springs to mind when Jo Crews is asked about her daughter Toni, the eldest of her three girls, is the honesty and openness with which Toni approached her life.
‘She was such a positive person,’ says Jo, 53, an accounts manager from Deal in Kent. ‘She was a caring big sister. And she was my best friend.’
Their chats ‘about anything and everything’ are the things Jo has missed most since Toni died from a rare cancer in August 2020, at the heartbreakingly young age of 30. Her cancer began in the lacrimal gland above her eye and spread throughout her body.
‘Toni had no secrets,’ says Jo. ‘She never shied away from difficult situations, nothing was ever hidden. All she wanted to do after she was diagnosed with cancer was to educate people.’
Toni died from a rare cancer in August 2020, at the heartbreakingly young age of 30. Her cancer began in the lacrimal gland above her eye and spread throughout her body
Indeed, after undergoing surgery to have her eye removed in 2016, Toni, a single mother of two young children, took to social media to share her experiences — and scars — in the hope they would help someone else.
Toni was also always on her phone ‘constantly sharing information about symptoms for all kinds of cancers, not just her own’, recalls her father Jason, 51, a former delivery driver who since her death has stayed at home to look after her children.
Toni was so passionate about educating others that soon after she learned that her cancer had spread and was terminal, she took the extraordinary decision to donate her body after her death so that medical students could continue to learn from the progression of her disease.
Furthermore, she took the unique yet entirely characteristic decision to consent to the dissection of her body being shown publicly, as well as her identity being known — the first donor in the UK to do either.
This allowed the normally closed doors of the anatomy lab to be opened to a wider audience, including the public, which meant the dissection could be filmed and broadcast.
The first thing that springs to mind when Jo Crews (pictured above with Toni’s father, Jason Crews) is asked about her daughter Toni, the eldest of her three girls, is the honesty and openness with which Toni approached her life
The result is a groundbreaking film, My Dead Body, to be aired on Channel 4 next week — which sets the dissection of Toni’s brain and body, led by Claire Smith, a professor of anatomy at Brighton and Sussex Medical School, against a backdrop of home video and moving diary entries documenting Toni’s gruelling four‑year battle with cancer.
‘I always wanted to be a doctor or a nurse,’ she says at one point in the film.
‘I was fascinated by the body and science, and loved all things to do with biology. I’d love for people to learn from my illness.
‘Life has a strange way of working things out.’
Jo admits that when Toni first told them she had already signed the consent forms, she was initially appalled.
‘At the time, we had hopes that her cancer could be cured and I didn’t want to think about her dying,’ she says.
‘But Toni wanted us to know that she had completed all the paperwork, ticked the boxes agreeing for her body to be used to teach students, and for public display — and she had included these wishes in her will.’
Jason adds: ‘We never tried to change her mind because it was what she wanted.’
And her amazing act of altruism has had an extraordinary impact: a thousand students have learned unique lessons from Toni’s donation and it is estimated that this could translate to informing one million patients’ care.
And through the dissection, which is filmed so respectfully you never lose the feeling of who Toni was and the enormity of her donation, Professor Smith was also able to chart, exactly as Toni wanted, the path of the cancer around her body.
Toni’s own journey started in the summer of 2016, when she began suffering from headaches, blurry vision and a ‘puffy’ right eye.
Her optician noticed a swelling towards the corner of her eyelid and suspected it could be a tumour in her lacrimal gland. She was immediately referred to an ophthalmic surgeon at Charing Cross Hospital in London and a biopsy confirmed that it was cancer.
Lacrimal tumours are rare —around 85 are diagnosed in the UK every year — but while they can be benign, around 55 per cent are malignant like Toni’s and need urgent treatment.
She had surgery in November that year to remove her right eyeball and eyelid, as well as the skin and muscle around the tumour.
‘It was a terrible shock but she was told surgery was her only option,’ says Jo. ‘It was either lose your eye or die. Those were her options.’
Toni dealt with the loss of her eye with the same candour she approached the rest of her life. She had a prosthetic eye but she rarely wore it. While she customised and designed her own, ‘she would quite happily wander around town without her eye patch’, says Jason.
‘She was proud of her scars — the way she saw it, if she didn’t have them, she’d be dead. She always wanted to talk about what she’d been through.’
However, a year after her surgery, Toni was still getting headaches and in the spring of 2018, she asked her surgeon for an MRI scan.
It showed that her cancer had returned and she needed further surgery to remove a tomato-sized tumour from her brain.
In 2019, three years after her diagnosis, Toni discussed body donation with her oncologist in the event of her death and requested consent forms.
Under the Human Tissue Act 2004, written and witnessed consent for anatomical examination must be given prior to death.
But unlike organ donation, where there is a central organisation (NHS Blood and Transplant), it operates under a postcode system, where people who are interested in donating their bodies contact their nearest medical school, listed on the Human Tissue Authority (HTA) website.
Twenty-six medical schools accept donor bodies — and while no records are kept of how many people do this every year, Professor Smith’s own research has found that 1,300 are needed but that the number often falls short.
(Donor bodies are used for training — helping students learn about disease processes, but also what normal human anatomy looks like — and some research.)
Toni was an unusual donor not only for consenting both to public display and choosing not to remain anonymous, but also because of her youth.
Research published by Professor Smith in 2020 in the journal Anatomical Sciences Education found that the average age of donor bodies is around 70, with an equal proportion of males and females.
Her research also showed that people who donate their bodies were also likely to be organ donors and to have given blood.
Medical schools need one donor body for every ten students, says Professor Smith.
‘In Brighton we take around 60 donors a year — 20 to 25 are used to teach first-year and second-year medical students, and the rest are expertly dissected for students to inspect or used for surgical practice — to plan difficult surgical cases or find new ways of operating.’
Around the same time Toni gave her consent, Brighton and Sussex Medical School had applied to the HTA for a public display licence which allows people outside the medical profession — such as psychologists, police, school science teachers and any members of the public who want to learn about the body — to view specimens.
‘We believe it’s important to help the public learn the science behind the human body, and we hold a range of public events to facilitate this, along with open days, where prospective students can view our facilities,’ Professor Smith says. ‘We wondered whether a donor would ever consent to a public display licence, and Toni was the first to do that.’
‘She wanted to educate as many people as possible,’ says Professor Smith. ‘And we wanted to fulfil her wishes.’
For nearly two years Toni was free from symptoms until January 2020 when she developed a cough — ‘we also noticed a little mark on her back, like an insect bite’, says Jo.
She underwent X-rays, which revealed spots on her lungs and a biopsy confirmed these were multiple secondary tumours, or metastases.
And the tiny marks that were appearing all over her body were not insect bites, but small tumours in the connective tissues.
The results of a PET scan (which uses a special dye to identify whether a cancer has spread) were devastating: Toni had ten small tumours in her brain and dozens more all over her body.
The brain tumours caused seizures, which meant Toni and her children had to move back in with her parents.
‘That was the only time we saw her really upset and angry,’ says Jason. ‘She was so stubborn and independent, she was determined to do everything for herself.
‘She had one ‘why me?’ moment, but the rest of the time she was happy, smiley Toni.
‘She was still preparing the kids’ breakfast and making their lunch three days before she passed away.’
Toni, who had worked as a carer since leaving school, had finally been about to realise her own ambitions; she was due to start a university course in forensic criminology in September 2020.
Jason believes her decision to donate her body was partly fuelled by feeling that she hadn’t achieved all she wanted in her life.
‘She passed away in the August and she didn’t get the chance. She wasn’t here long enough to fulfil her dreams,’ he says, struggling to hold back tears.
‘So she worked out a way of continuing to help share information about her cancer after her death.’
Jo and Jason were with Toni when she died at home on August 23, 2020.
‘It was ‘some comfort’, Jason says, to be able to fulfil their daughter’s last wishes.
Her body was accepted by Brighton and Sussex Medical School. After it was embalmed, her body was stored in the anatomy laboratory, which held a series of 12 dissection workshops and further clinical training sessions between March and July 2022 attended by more than 1,000 students.
The process started with the original tumour site, and then moved down towards the abdomen, where the pattern of the cancer’s journey was revealed.
When Professor Smith opened Toni’s abdomen, she could see hundreds of tiny tumours that hadn’t shown up on scans.
As Professor Smith explains, tumours can spread from their primary site either through the bloodstream, usually to other organs such as the liver or lungs, or through the lymphatic system to different lymph nodes within the body.
‘Metastatic spread is often a more important problem than the primary tumour because it can affect many organs and impair their function.
‘Combining [Toni’s] scan images and the dissections, we were able to illustrate these ways of spread to the students.
‘We concluded that the first event of spread was through the lymphatic system leading to tumour deposits in the lymph nodes within the chest. This was rapidly followed by tumour spread through the bloodstream to the liver and lungs, and subsequently to the brain.
‘Tragically, it was this spread to the brain that proved the ultimate cause of death because quickly-growing brain metastases raise the amount of tissue and fluid and thus pressure within the skull and this impairs brain and brainstem function, such as control of heart and breathing centres.’
Although it is sensitively handled, the programme, which shows the dissection of Toni’s head and body, is tough viewing for everyone, but particularly her parents.
Jo and Jason have watched it twice.
‘It was difficult, but we knew it would be,’ says Jason. ‘It didn’t look like Toni when she was alive, so I could distance myself.
He says the home video footage of her when she was a child affected him far more.
‘The bit where they removed her [remaining] eye, I wanted to hold her and give her a big kiss and say sorry to her,’ says Jo, tearfully.
‘The other thing that made me feel emotional was seeing everyone’s reaction to her and how respectfully and nicely they treated her [in the anatomy lab]. It made me happy and proud — what she’s achieved is just massive.’
Medical schools will usually arrange and pay for donated bodies to be cremated, unless the family requests the return of the body for a private burial or cremation.
After her dissection, Toni’s body was collected and a cremation was held in London, attended by a handful of family members.
‘We could have had her body back and held a funeral, but Toni told us she’d rather we spent the money on the kids,’ says Jason.
For Professor Smith, this has also been ‘an emotionally challenging and difficult experience — it was the first time in 20 years I’d had a close connection with a donor’s family and it’s been an honour and a privilege’.
Meanwhile, Toni’s gift continues to benefit others: as well as the 1,000 students who watched the dissections, ‘over the next five years another 8,000 to 10,000 students will learn from the tissue and body parts we retained from Toni’, says Professor Smith.
‘We can also estimate that, based on a doctor or health professional looking after 20 patients a day, five days a week for 46 weeks a year, the lessons learnt from Toni may inform one million patients’ care.’
‘Toni was never going to go quietly,’ Jo reflects with a smile.
My Dead Body airs at 10pm on December 5 on Channel 4.The Human Tissue Authority website: hta.gov.uk