Mother’s instinct
Doctors missed my girl’s deadly disease – again and again...
I knew this was more than just tummy trouble
Ifrowned as my daughter Kayleigh, 13, plodded down the stairs for breakfast.
Her stomach was swollen beneath her pyjama top, her complexion grey.
‘Want anything to eat, love?’ I asked.
She shook her head, opting for water instead.
Taking a sip, she set her glass down. ‘I’m full, Mum,’ she grimaced. It was January 2016 and Kayleigh hadn’t eaten properly for months. Now she wasn’t eating at all. Plus she hadn’t been to the loo in nearly three weeks.
I whisked her to the doctor, who diagnosed tummy trouble and prescribed laxatives. But days later, still nothing. ‘This is more than constipation,’ I told my husband Andrew, 38.
After several more calls and visits to the GP, Kayleigh was referred to the Queen Victoria Centre for a scan.
But hospital staff turned us away, saying they didn’t carry out scans for constipation.
Kayleigh was prescribed stronger laxatives.
‘Why won’t anyone help us?’ I wept to Andrew.
Kayleigh was getting worse. Her skin was pale and waxy.
Unable to eat, she’d plummeted to 4st 2lb and her bones jutted out. Only her tummy was getting bigger.
One morning in March 2016, Kayleigh was so weak, I called my mum Sandra, 55.
‘Please take her to A&E,’ I begged.
So Mum drove Kayleigh to Royal Lancaster Infirmary, while I looked after our six other kids.
I joined Mum after Andrew had finished work.
Kayleigh was admitted overnight for observation and we were told to go home.
But at 5am the next morning, we got a phone call.
At hospital, Kayleigh had started being violently sick.
As quickly as doctors replaced her fluids, she was bringing them back up. Mum and I raced back there. Kayleigh was sent for a scan, but later we were asked to move into a private room.
‘It’s not constipation,’ a doctor said. ‘It’s a tumour. We’re certain it’s cancerous.’ I sank to the floor, screaming. ‘It can’t be. She’s too young!’ I cried.
More scans revealed the true horror of Kayleigh’s illness.
The tumour was 12in long, weighed 7lb – the size of a baby. And it was ovarian cancer. My little girl was only 13. ‘Isn’t that something older women get?’ I said.
Doctors explained that, while rare, there was a handful of cases affecting girls in the UK.
Kayleigh was one of the youngest ever.
I was devastated. And furious. By now we’d seen three doctors.
How had no-one noticed?
But what I was told next made me feel physically sick.
‘If you’d waited much longer, the cancer would’ve been terminal,’ a doctor told us.
My girl was just days from death.
We told Kayleigh everything from the start. It was her body and d we didn’t want to hide anything from her.
Her bravery amazed me, she took it all in her stride.
But I could see in her eyes that she was worried. ‘Will it hurt, Mum?’ she asked. I couldn’t lie, but told her I’d be by her side the whole time.
Kayleigh was transferred to Royal Manchester Children’s Hospital and started having intensive chemotherapy.
Within a fortnight, she’d lost her hair. It broke my heart, but she was brave.
A month into her treatment, Kayleigh was allowed home for a few days.
As we lay together on my bed, she turned to me.
‘Mum, am I going to die?’ she asked, voice shaking.
Heartbreaking.
‘I don’t know, darling,’ I whispered. ‘But whatever happens, we’re in this together.’
Kayleigh nodded, then listed songs she wanted at her funeral.
I choked back tears. My girl was barely a teenager. Yet here she was, contemplating her own death.
After several more rounds of chemo, the tumour started shrinking. Six operations followed to remove it.
It was so big, parts of Kayleigh’s bowel and one of her
ovaries had to be removed.
Then, eight months after her diagnosis, we had good news. Kayleigh was in remission. Back home, she found life hard. She’d gone from happygo-lucky teenager to a shell of a girl. I barely recognised her.
Kayleigh, now 15, has been told the treatment may have left her infertile. And the cancer could come back.
‘If it does, and it’s terminal, I don’t want more chemo,’ she’s sh told us.
It was hard to hear. But I have to respect her wishes.
For now, though, we’re taking each day as it comes.
Kayleigh is slowly starting to get her old self back, having counselling. And she’s thick as thieves with her sister Ella, 18. They tell each other everything and I often find them giggling.
I’m thankful I trusted my mother’s instinct and sent her to hospital that day. But I’m angry she was misdiagnosed for so long.
I’d urge any worried parent to push for answers.
It might save your child’s life.