It’s a shocking photo. Here, Jessica’s dad insists he was right to release it – because it shows the true face of cancer
THE photograph is a potent expression of a child’s agony, shocking in its brutal honesty. It depicts a dying four-year-old girl and makes no attempt to disguise the stark reality of her suffering. Few images make such a direct and visceral appeal to the human heart.
This week, Andy Whelan took the photo of his daughter Jessica, who has terminal cancer and just weeks to live, and posted it on social media, and an anguished howl of sorrow reverberated round the world.
Within 24 hours, Jessica’s photo had reached half a million people. The outpouring of empathy was overwhelming.
Why did Andy and his partner Nicky Prendergrast, Jessica’s mother, decide to share their family’s grief and their daughter’s distress in such an uncompromising way?
‘We knew the photo would challenge people, that it would evoke strong emotions,’ Andy says. ‘And I battled with myself: should we share this? But I knew it needed to be seen.
‘So many photos show smiling bald children in hospital wards surrounded by santas, actors and celebrities, their happy faces full of hope, which is uplifting. But this is not the everyday face of childhood cancer, which is brutal and painful and shocking. We wanted to strip away the sentimentality, to make people aware of what cancer does to a child in the final weeks of life.
‘This is the true face of the disease: my little girl’s blood vessels visible under her skin, a solitary tear running down her cheek, her body stiff and her face contorted with pain.
‘It was taken at the moment when we, her parents, could offer her no comfort, during a flare-up of pain before her fast-acting morphine had taken effect, Jessica pushing us away as she rode out her searing pain in solitude.’
The picture marks an awful milestone. Andy took it last Saturday only days after he and Nicki had learned that their only daughter — who had been fighting cancer for 13 months — had only weeks left to live.
A month earlier, they had made the decision that Jessica had suffered enough; that as she could never be cured of the awful disease that was ravaging her small body, she should endure no more treatment to prolong her life. The endless hospital visits, the cannulas administering strong drugs, the fresh agony to her tiny pain-racked frame — all of it should end and she should come home to Oswaldtwistle, Lancashire, for palliative care and to die in her little bed next to her parents’ bigger one, surrounded by her teddies and the family who adored her.
‘Death from cancer is not a quiet slipping away,’ says Andy. ‘It is hell. And there was part of me, too, that knew I would need to look back on a photo of Jessica as she suffered excruciating pain so I would be able to say: “We made the right decision in not prolonging her treatment.”
‘Of course we want to hold onto her for ever. We cannot bear the thought of losing her. But seeing her suffer is agony, too, and we cannot wish on her a life of pain just so she can stay with us longer.
‘So when I look at that photo in a future without Jessica, I will be able to remind myself of the terrible pain she endured and the fact it has mercifully ended.’
Since Andy posted the image on his Facebook page, the outpouring of love for Jessica and sympathy for her family has buoyed them.
Donations have poured into a fundraising page Andy set up. Even the One Direction singer Harry Styles read about her, rang Andy and has promised to make a special recording for her.
‘The response from around the world has been so overwhelming and positive,’ Andy says. ‘ Families who have been through the same anguish as us have commended us. Parents of healthy children have sent their thoughts and prayers.
‘Now I hope this photo of Jessica will become iconic, that it will help to raise awareness of our daughter’s disease and, through that, funding for research.
‘She has a rare cancer, an aggressive stage four neuroblastoma, and I’d never heard of it until she was diagnosed. With this photo I do not mean to offend or upset; I do mean however to educate; even to shock.
‘My hope is that the day will come when no child will have to suffer Jessica’s pain, because science will have found a cure; and no parent will have to bear witness to their own flesh and blood deteriorating daily.’
Neuroblastoma is a cancer of the nerve cells, usually occurring in the abdomen, and is diagnosed in around 100 children every year in the UK. Most of them, like Jessica, are under five.
Andy recalls the daughter she was before the escalating nightmare enveloped them.
‘She was a delight,’ he says. ‘So easy to look after, so much fun to be around and bursting with such energy.
‘She loved her Barbie dolls. She was our perfect little princess, but she could be a tomboy as well. One minute she’d be having her nails painted, the next she’d jump in a pile of horse manure.
‘She has a real thirst for knowledge, too; an inquisitiveness. She needed to know what and why about everything and she was excelling at her little nursery school.
‘Manners were important to her. They still are. Last night I took a brew up to her in bed and she said: “Thank you, Daddy.” ’ He pauses, momentarily choked.
Andy, 30, is a strong, muscular man; the parent Jessica clings to for physical comfort; for protection. It is he who tells his daughter’s story because Nicki, 28, cannot trust herself not to break down and they know they must not crumble. They must stay strong for Jessica and their 21-month- old son, James.
So it is Andy who tells how their happy family life fractured when, in July 2015, Jessica fell, hurting her shoulder.
‘She banged her arm and she was very upset,’ he says. ‘ In fact she seemed unduly so.’ Nicky took her to their GP who referred her to Black- burn Hospital for an X-ray. Then came the first intimation of the horror that would unfold. Andy, an electrician, was working away in Birmingham when Nicki rang him with awful news.
‘She said, “The radiographer believes she could have cancer” and I just remember telling my boss, “I have to go” and I shot up to be with them.’
Within 72 hours, however, their worst fears were allayed. A specialist diagnosed an infection and inflammation of the bone and prescribed antibiotics. Jessica spent two weeks in hospital then was discharged.
‘ We were ecstatic because she seemed well and we could resume our normal lives,’ recalls Andy.
But ten days on, her shoulder was swollen again and once more she was admitted to hospital. Andy took time off work to stay with her. More courses of different antibiotics followed.
‘And though the doctors were telling us it definitely wasn’t cancer, she had an agonising pain in her tummy and at night- time she would wake up screaming,’ he recalls.
‘So she went for an ultrasound scan, which showed a growth around her liver and kidneys. They tried to calm us. They said: “It might not be sinister. It could be a cyst.”
‘But she needed an MRI scan to find out. She was sedated for it, then there was this awful 16 hours while we waited. Then the doctor came into the room and closed the door, and as soon as I saw his face I knew it was bad news.
‘That was when he told us it was cancer, neuroblastoma, and I didn’t know what it was. I felt sick. My head was pounding. They said they’d wait until Jessica came round, then they’d take her to the Royal Manchester Children’s Hospital.’
It was at 8pm on September 21, 2015 when Andy and Nicki walked into the children’s cancer ward at the hospital and saw the future that lay ahead for their beloved daughter: the children who’d lost their hair through chemotherapy, the brave smiles, the parents’ cheerful camaraderie masking an awful shared desperation.
‘And in the days that followed I couldn’t eat or sleep. I was on a frantic Googling mission finding out about neuroblastoma. We had to know what we were facing.
‘Of course we couldn’t tell Jessica. A child of four should not know about cancer. She just knew she was poorly.
‘Then we asked the oncologist what the prognosis was, and he said little over 50 per cent survive longer than five years. It ripped us to pieces.
‘But we had to try to be positive. We told ourselves she would be one of those who got through it. But I fell into a massive depression. For the next couple of months I slept only for two or three hours a night. I was asking: “Why, why, why?”
‘Within two days of the diagnosis Jessica had begun a course of chemotherapy at Manchester. When we look back at photos of her then, we can see she was close to death. She lay in her hospital bed staring blankly into space. It almost broke Nicki to see her like that.’
In the fraught weeks that followed, grandparents rallied to help Nicki care for their baby son James. Andy stayed at Jessica’s bedside and an extraordinary bond formed between father and daughter.
‘She seemed to have trust in me,’ he says. ‘I’m strong enough to lift her gently without hurting her, and if I left her she’d cry for me. So I slept in a little bed next to her and she wanted me, not the nurses, to take her temperature and blood pressure.
‘At night, I woke every two hours to give her medications and feeds and to do her observations because that is what she wanted.
‘ It was mentally and physically exhausting, but we began to see a turnaround. At Manchester she had the right pain relief and proper medicines, and psychologically she turned a corner. She trusted the doctors and nurses.
‘After two courses of chemo she was improving, doing well. She’d started to eat a little bit. We took her home,
‘Jessica was such a delight, bursting with energy’ ‘It will remind me her pain has mercifully ended’
and then in January this year the scans showed the primary tumour had shrunk, although the secondaries were still there.’
A six-month course of treatment, aimed at prolonging Jessica’s life and improving its quality, was scheduled.
‘We were told it was unlikely to provide a cure, but that she could have the treatment from home, which seemed wonderful,’ Andy recalls. ‘And she did well. She started eating enough to sustain herself and the nose tube through which she’d been fed was removed. I started to hope, “She’ll beat this” .’
But their hopes were cruelly quashed. By July, the tumours were growing again.
‘Then our brilliant oncologist came up with another plan of treatment: radioactive targeted therapy via injection,’ Andy remembers.
‘It meant being isolated from Jessica for up to a week because of the high levels of radiation, but she responded brilliantly. She started to walk unaided. She even half-ran. She could climb up onto her chair.
‘We were all so delighted. We thought she would have a few more years of good quality life, she had responded so well.’
But the respite was short-lived: her parents’ see-sawing emotions plummeted once again when, last month, Jessica began to suffer pain in her legs.
‘We took her to hospital and she had a scan. The oncologist said: “It’s coming back. It’s progressing to new areas now, and although the primary tumour was defunct, secondaries were littered all over her body. He said she had only months to live.
‘And although we had been preparing ourselves for this, steeling ourselves to lose her, it was as if my heart was being ripped out of my chest while someone sucked air from my lungs. It completely paralysed me.
‘Nicky was nearly sick. I had to grab her to stop her from falling down.’ After that prognosis, Andy and Nicky faced the most agonising decision of all: should they decide on Jessica’s behalf to prolong her treatment, or make the heroic but heartbreaking decision to let her die?
The latter course would allow her ‘normality’: she would spend her remaining time on Earth in the cosy family home; her little brother near her, her parents ever present — Andy has given up work to enjoy what remaining time is left to her.
‘We needed time to reflect,’ says Andy. ‘ Fortunately we both came to the same decision, to stop her treatment, but it was agonising.
‘It would have been easier if the doctors had said: “We’re deciding for you,” but it had to be our decision and it was the hardest one we’ve ever made.’
He sobs, collects himself, continues: ‘And in the two weeks since, Jessica has deteriorated massively. A fortnight ago she was walking. Now she sits in her buggy, sedated, her pupils fixed and dilated.’
The matter of her death has, of course, never been broached. ‘No four- year- old should or could understand about death,’ says Andy. ‘ And we would rather she passed away not knowing, not questioning, without anxiety.
‘But one day she said out of the blue, “I don’t want to die” and we had to excuse ourselves, to walk out of the room for a moment.’
Jessica sleeps as Andy talks. This is how her days are spent now, drifting between hazy wakefulness, watching her favourite films — then sleeping.
Andy hopes she will not live to see Christmas: if she did, it would be a grim travesty of the joy it should be and he could not endure it.
‘ So we like to remember the wonderful Christmas she had last year, the laughter, singing and dancing with my parents. We want to preserve those happy memories, not have them wiped out by terrible ones.’
Even now, though, as they face the day when they will say their final farewell to Jessica, small sparks of happiness relieve the gloom.
‘I was cuddling up next to her last night on her bed with her hot water bottles, her blankets and her million teddies, and we had such a nice conversation,’ says Andy.
‘She said how much she loved me, and how much she misses me when I’m not there beside her.
‘I gave her a little kiss and told her how much I loved her too, and then I had to turn away and go downstairs because I couldn’t stop myself from crying.’
gofundme.com/caringforjessica
‘I had to turn away. I couldn’t stop crying’