Bonded by blood
No wonder our Phoebe is such a
Hands shaking, I Googled her condition… ‘My God!’
My daughter Phoebe, 4, was curled into her daddy on the sofa.
‘Can I have a cuddle now?’ I asked. ‘I’ve got popcorn!’
Phoebe looked at me, her beautiful, wavy brown hair bouncing around her face.
‘No, Mummy,’ she said. ‘I’m cuddling Daddy. You cuddle Harriet.’
She was talking about her 20-month-old sister. I laughed.
The moment she was born,
Phoebe was a daddy’s girl.
With her almond-shaped blue eyes, she was his double.
‘She’s amazing,’ he’d gasped, totally besotted.
She adored me, too – but Phoebe and her dad shared such an amazing bond.
At weekends, they’d spend hours paddling on the beach near our home, throwing stones into the sea.
Best pals.
In December 2017, we celebrated Phoebe’s fifth birthday.
But days later, she looked pale.
‘She’s floppy, too,’
Tom worried.
‘That time of year,’ I sighed, tucking a blanket over her on the sofa.
There were so many bugs going about.
We gave her Calpol, but she didn’t improve.
She was sleeping all the time, barely eating and her hair felt dry.
‘We’re taking her to hospital,’ Tom said days later.
There, she was diagnosed with pneumonia and given antibiotics.
‘I still want to do my Nativity,’ Phoebe mumbled.
She was playing a sheep and was so excited!
But on the day of her play, Tom and I sat watching her on the stage.
‘She’s still not right,’ I worried.
Phoebe was just standing there, not singing, and drained of colour.
So we took her back to South Tyneside Hospital, and the doctor immediately arranged a transfer to the Great North Children’s Hospital. ‘Why?’ I panicked.
‘She needs oxygen and more tests,’ he said.
‘It’ll just be a precaution,’ Tom said.
But I could see the fear on his face.
We thought it was a bad virus, but doctors started talking about bonemarrow failure. We didn’t understand enough to ask more, were still in a daze.
Phoebe was given stronger antibiotics, and we were told to return in the New Year.
Thankfully, she started to perk up. So, at our next appointment, we were trying not to worry.
This time, doctors gave us all a blood test, including Harriet.
‘We want to do some genetic testing,’ the consultant explained. They also wanted to test Phoebe’s bone marrow. She was so brave, didn’t kick up a fuss. Three weeks later, she had a follow-up appointment.
‘I’ll take her to it,’ Tom offered.
So I took Harriet to soft play, was happily watching her throw herself into the ball pit when my phone rang.
‘You need to come home,’ Tom said quietly.
‘What’s wrong?’ I panicked. ‘Phoebe has Fanconi anaemia,’ he whispered. ‘It’s a rare genetic disease. Just come home.’
Hands shaking, I Googled it. ‘My God!’ I choked, sobbing as I read it caused bone-marrow failure and an increased risk of cancer. It was rare, life-limiting.
Grabbing Harriet, I drove
straight home.
‘What’ll happen to her?’ I sobbed to Tom when I got there.
‘It’s going to be OK,’ he soothed, hugging me.
Phoebe’s bone marrow wasn’t producing enough healthy blood cells.
Without a transplant, she could develop leukaemia. It could be fatal. ‘The blood tests were to see if we were a match,’ Tom said.
He then explained how it was a race against time to find a donor, and a sibling was usually the best bet. Only, Harriet wasn’t a match. ‘But I am,’ Tom said. ‘Really?’ I gasped.
It was incredible. Against odds of
200 to one, Tom was a 100 per cent match. Doctors said they rarely even bothered testing parents any more, the odds of a match were so unlikely. ‘I’ll do anything for our little girl,’ Tom choked. I couldn’t stop crying. We felt both cursed yet lucky at the same time.
We didn’t want to scare Phoebe, so we didn’t make a big deal of it.
‘You just need some new blood. You’ll be getting some of mine,’ Tom told her.
‘I’ll have the same blood as Daddy!’ she grinned.
So last July, Phoebe was admitted to the Royal Victoria Infirmary in Newcastle.
She spent a week in an isolation bubble having chemo to strip her immunity.
She didn’t moan once, even though the chemo knocked her for six.
Tom and I took it in shifts to be with her. We’d have to wash thoroughly first, couldn’t even take a cuppa in for fear of infection.
Then, finally, it was time for the transplant.
Tom had 1.5 litres of bone marrow taken, and the next day it was given to Phoebe through a drip.
After, she spent another four weeks in isolation.
‘She’s such a happy little thing,’ nurses gasped.
She contentedly watched videos, did endless drawings.
Her room was covered floor to ceiling! ‘Most of them are to her daddy,’ I chuckled.
It was heartbreaking seeing her so frail, without any hair.
But we knew she was lucky compared to some other children with the condition, who are desperate for a donor but can’t find a match.
Phoebe eventually came home after 37 days. Only, a week later, she was struck down with encephalitis – inflammation of the brain. Her immune system had been so weakened by the treatment. My poor girl couldn’t speak, swallow, walk… ‘Why is this happening?’ I sobbed, distraught. But our brave little warrior bounced back. And now, almost a year on, Phoebe is doing amazingly. She’ll have regular health checkups as she’s still more prone to some cancers and tumours.
But we refuse to live in fear.
Phoebe’s just started Rainbows – Girl Guides for little ones. And she loves school.
But she is never happier than when she’s with her beloved daddy.
Her hero.
Their bond saved her life – and our family.
We felt both cursed yet lucky at the same time