The family curse

My little boy's fighting to win the battle his cousin lost...

Published by: Amy Thompson
Published on: 28th January 2010

There's something amazing about how kids cope in a crisis. No matter what happens, they manage to smile through the worst of times.
Like my niece Chelsea. She was diagnosed with neuroblastoma - a cancer that attacks nerve tissue.
She was only two, and we were all devastated. But my little boy Zac, three, took it all in his stride.
Taking him to visit her in hospital, he jumped around, fetching teddy bears and toys from the playroom to take back to Chelsea's bed.
'You can be the princess, and I'll be the dinosaur,' he'd say, handing her a doll.
We worried he might be wearing her out, but Chelsea loved having him there.
They'd always been close, more like best friends.
Even when Chelsea was feeling really poorly, seeing Zac instantly put a smile on her face.
It put a smile on all our faces. My brother Andrew, Chelsea's daddy, was especially touched.
'They're such a joy to watch,' he smiled. 'It's almost like Chelsea's not really ill when Zac's around.'
But, over time, Chelsea wasn't the only one I worried about.
Zac's tummy had started to swell and I couldn't understand why. He wasn't eating any differently, and he never said he was in pain.
Worried, I took him to the GP.
'It's just a bit of wind,' he said. 'He'll be fine.'
Something had been niggling away at me, though, I had to ask...
'Could he have neuroblastoma?' I asked, quietly. 'It's just that his little cousin has it.'
The doctor shook his head. 'It's not a hereditary disease. Zac will be fine in a week or so.'
I nodded but, over the next few days, I couldn't shake an uneasy feeling.
Was I being paranoid because of what Chelsea was going through?
Zac wasn't even poorly, he was still running about like a loon, play-wrestling with his dad.
Or was my mother's intuition telling me something...?
I took him straight
to hospital when he came down suddenly with chicken pox
'I want you to test him for neuroblastoma,' I firmly told the doctor there.
After examining his still swollen tummy, he agreed, and gave Zac an ultrasound scan.
Instantly, I felt a weight had been lifted off of me.
Chances were I was being over-anxious. But at least this way, I'd put my mind at rest.
Me and my hubby Bob took Zac back to Kettering Hospital to hear his test results without any worry.
Then I saw the look on the doctor's face. My heart lurched.
'I'm afraid you were right, Sam,' the doctor said. 'Zac
has neuroblastoma. The chances of cousins both getting it are one in 10 million.'
I thought I was prepared for that moment. Deep down I'd known all along, but the doctor's words echoed inside my head - the chances of both getting it is one in 10 million...
Thanks to his cousin, my son's illness had been caught early.
Sitting Zac down, we explained that he was very poorly and had to have medicine just like Chelsea.
He didn't seem worried.
They even had chemo on the same ward. As always, they had each other.
'This teddy needs his injection now,' I heard Chelsea telling Zac one day. Picking up the bear, Zac held its paw as though he was checking its pulse.
They were only toddlers but they had already been through
so much.
Then, the worst happened.
After two years battling cancer, Chelsea died.
She was four years old.
Telling Zac was terrible.
'She's gone to heaven, and she's playing happily now,' I told him.
'But... I want to play with her,' he said. It was heartbreaking, he couldn't understand why his best friend wasn't around any more.
'Chelsea was more poorly than you,' we explained, gently. 'Her medicine didn't work. But she's in heaven now, where she doesn't have to have any more injections or medicine.'
Zac looked up at me.
'Can I go to heaven, too?' he asked, tearfully.
I felt like I'd been punched in the stomach.
'No, sweetheart,' I said, hugging him to me to hide the tears spilling over my cheeks. 'Not just yet.'
Zac had two rounds of chemo, which shrunk the tumour in his stomach enough for it to be removed in one piece.
The op left him with an arrow-shaped scar on his tummy.
But even when he lost all his hair, eyebrows and eyelashes as a result of his treatment, it didn't bother him in the slightest.
I couldn't believe how brave my little boy was.
And I wasn't the only one. When a children's charity heard about Zac, they entered him into a prize draw to be the mascot for Manchester United for a day.
He was chuffed to bits when he found out he'd won.
'Will I meet Wayne Rooney?' he grinned.
'Looks like it,' Bob chuckled.
Thankfully, Zac was well enough to go to the game, so he walked out on to the pitch with Ryan Giggs and had a kick-about with his heroes. I've never seen a bigger smile on his face.
If only his little cousin could have been there, too.
We couldn't help laughing when he seemed to think he'd be playing the entire game. They practically had to carry him off the pitch!
After two rounds of intensive chemo, his doctor had bad news.
'We can give Zac a third dose of chemo, but there's no guarantee it will cure him,' he said.
'There's treatment available in America which will give Zac a 70 per cent chance of the disease not coming back. But it's expensive,' he added.
'How much?' I asked.
'£250,000,' he replied.
I stared at him in stunned silence.
I'd already given up my job in retail to look after Zac full-time. Bob worked as a forklift driver - where could we find that kind of money?
'Whatever it takes,' Bob said to me as we left the doctor's office. 'We'll find the money somehow. Zac hasn't given up, neither will we.'
We tried everything, getting everyone involved. From sponsored chest waxes to parachute jumps, our friends and family pulled together to raise money for Zac's treatment, but we've still got a long way to go.
Zac's due to have his third dose of chemo this year, and then he'll need treatment in America.
I don't think about what will happen if he doesn't have it.
All I can do is pray that his cousin is still watching over him.
Hopefully, Chelsea will give him the strength to win the battle she lost.

-To make a donation towards Zac's treatment, visit the website at
-For more information about research into neuroblastoma in children, visit
Sam Knighton-Smith, 41, Rushden, Northants