My lovely princess in the Skye

Funny, bossy, and so brave... that was my daughter

Published by: Jean Jollands
Published on: 1 December 2011

Most mums dread the school holidays. And with eight kids, my house was definitely a mad house!
There was Ryan, 12, Damien, and Liam, both 10, Skye, four, three-year-old twins Zoe and Rachel, Harley, two, and one-year-old Amber. My partner Damien, 31, and me had our hands full!
Now Skye was jumping up and down, trying to get my attention.
‘Mummy, Mummy! Look at my princess dance!' she trilled.
With her pink frilly dress and sparkly tiara, she looked every inch the princess as she danced around.
‘Well done, you!' I applauded.
‘Thank you, Mummy!' she whooped, finishing with a cheeky curtsey. ‘I love you to the end of the world and back again.'
As always, our little saying brought a smile to my face. We'd been saying it since she was old enough to string words together. Hard to believe she'd be starting school next month.
Skye had been so excited picking out her smart grey pinafore a few days earlier. ‘I'm a big girl now,' she'd boasted, happily.
No, she'd always be my little princess. After giving birth to three boys, I'd been over the moon when Skye had come along - a bonny, healthy 7lb 6oz bundle. And she was the girliest girl ever, wanting pink everything!
Right now though, she was straightening her tiara with one hand and pretending to pour a drink with the other. ‘We're having a tea party,' she told Amber.
Honestly, she could be such a bossy little thing sometimes!
But the following day, my bubbly, lively princess seemed out of sorts. She looked sort of... off-balance when she walked.
When she started vomiting, I took her to our GP, who said it was a viral infection.
Back home, the vomiting grew worse - and the left side of her face started to droop. ‘I'm taking her to A&E...' I gasped to Damien, calling a taxi to take us to the Royal Manchester Children's Hospital.
But doctors couldn't work out what was wrong with her. ‘There's a chance it might be meningitis, or a leak to the brain,' one said. ‘We'll need to give her a brain scan.'
I called Damien to join me there.
Over those next anxious hours, Skye was put on a drip, and her condition stabilised.
But at 4am, doctors ushered Damien and me into an office. ‘I'm sorry,' the consultant began saying. ‘But Skye has a large tumour in the middle of her brain stem.'
Tumour? Cancer? I heard myself howling in terror as his words hit me. Known as a diffuse intrinsic pontine glioma, Skye's tumour was in the part of her brain that controlled everything from talking and walking to breathing.
‘But you can get rid of it, can't you?' I pleaded, bewildered.
‘I'm afraid it's inoperable,' he explained. ‘With treatment, we think she has about nine months left to live.'
My perfect little princess, who was dancing and singing around the living room yesterday, had less than a year to live?
A wall of hurt closed in on me as doctors explained that they'd give Skye a 30-day course of radiotherapy to try to shrink the tumour, as well as steroids to help control it.
‘It can't cure her,' they told us. ‘It can only make the time she has left more comfortable.'
Shell-shocked, Damien and me hurried to Skye's bedside. Despite the doctor's cruel diagnosis, her vomiting had stopped. The colour returned to her cheeks.
‘Sit down on my bed and stay with me, Mummy,' Skye ordered. The bossiness was back.
A week later, Skye was strong enough to come home. I sat her down and tried to explain. ‘You've got an evil spot on your head, sweetheart, 'I said gently. ‘You're a bit poorly.'
‘Will I get better, Mummy?' Her blue eyes stared up at me.
‘I hope so,' I gulped.
Damien broke the news to our other kids.
Our family was devastated. ‘Surely there's a chance?' willed Damien's mum Margaret, 46.
But a few weeks later, Damien gave up his job as a mechanic to look after the kids while I took Skye to her gruelling, daily radiotherapy treatment.
As the weeks passed, the steroids made her fill out, and I started putting her in pyjamas for six-year-olds, then 10-year-olds.
Just four months after her diagnosis, we celebrated her fifth birthday. ‘We'll make it her best day ever,' Damien vowed. So we secretly hired a pink Hummer limo to take Skye and her little friends to a nearby soft play centre.
Her face, when it turned up! ‘Thank you, Mummy!' she whooped. ‘I feel like a proper princess now!'
I think we must have bought her half of Argos that day, she had that many presents. All the money in the world couldn't buy the one thing we wanted, though - for the tumour to go away.
Skye became unsteady on her feet, and we had to start pushing her around in a pram. One day, we passed a group of little girls skipping and she looked up at me.
‘Why can't I play like them?' she asked. It broke my heart.
But, despite her ordeal, my gorgeous little girl never complained, even when she was too weak to walk.
Seven months after her diagnosis, she lost the use of her legs, then her left arm, and became bed-bound.
She'd ballooned from 3st to 6st and, when she became too heavy for me to lift her, me and my girl started sleeping in the living room.
‘It's like I'm watching a horror film, and this is all happening to someone else's little girl,' I confided to Damien.
It was all too real, though. Skye suffered severe headaches, and doctors put shunts in her brain to try to unblock the build-up of fluid.
In July this year, just 10 months after she'd first fallen ill, doctors decided to stop the steroids.
Her breathing was laboured, the life ebbing out of her as our family came to say goodbye.
‘I'll never forget you, sweet princess,' I murmured, as Macmillan nurses sat our other
kids down and explained Skye wasn't going to make it.
Three days later, she slipped away at home - me and Damien holding her hands.
I gave her the send-off my angel would have loved - a bright pink coffin with white horses in white, and pink feather boas. Everyone was dressed in pink.
We stuck loads of family pictures on her coffin lid.
‘So she never feels alone,' I told the kids.
I don't think that they truly understand it, though. ‘I want Skye back now, Mummy,' Amber says to me, looking expectantly at the front door.
Our perfect princess isn't coming back, though. Goodbye Skye, I will always love you to the end of the world and back again.
Sue Hartley, 32, Beswick, Greater Manchester