‘My heart raced when my son said he had a lump on his thigh’: One mum reveals what it’s like when BOTH your kids had cancer
Childhood cancers account for 0.5% of all cancers in the UK but both of Claire Roberts' young sons have had the disease
CLAIRE Roberts, 41, works in childcare disability and lives in Swansea with her husband Alexander, 41, and sons Edward, 10, and Henry, four. She says:
"Feeling the satsuma-sized lump on my 10-year-old son Edward’s thigh, I knew it was bad news.
After all, it wasn’t the first time cancer had blighted my family.
When Edward was born in March 2006, both my husband Alexander and I were elated.
Six years later, our son Henry came along and it felt like our family was complete.
But from the moment he arrived, Henry was lethargic and irritable.
I took him to two GPs, who both said not to worry, but by five months his symptoms had worsened, so I consulted a third.
They suggested Henry have a CT scan, as he was displaying symptoms of hydrocephalus (a build-up of fluid on the brain).
Heartbreakingly, in October 2012, doctors at Swansea’s Morriston Hospital broke the news he had a thumb-sized brain tumour.
Alexander tried to stay strong, while I sobbed.
The doctor reassured us it was treatable, but we needed to act fast as it was blocking a ventricle in his brain, causing a build-up of fluid.
We were immediately transferred by ambulance to the University Hospital of Wales in Cardiff.
As Henry was dangerously ill, doctors put a tube into his skull to drain the fluid.
Two days later, he had an operation to remove the tumour. I was terrified I wouldn’t see him alive again.
Thankfully, it was a success, and afterwards in the intensive care unit he was a different baby, babbling to the nurses.
Within a week we were home.
It had been hard on Edward, as all our attention had been on Henry.
Edward was also scared of the stitched-up scar that crossed his brother’s skull.
We tried to get life back to normal, but a month later, we received the bombshell that Henry’s tumour had been cancerous.
So in November 2012, he began six months of chemotherapy and was fitted with a shunt (a small tube in the brain) to prevent fluid building up again – which could stay in his head forever.
I would have done anything to take his place.
In May 2013, Henry had his last treatment and doctors offered to test him for Li-Fraumeni syndrome, a hereditary condition that leaves sufferers predisposed to cancers.
We decided not to go ahead, as we’d only worry more.
Then in August 2015, Edward complained of a sore calf.
Thinking it was growing pains, I took him to the GP, who prescribed painkillers.
Two weeks later, I asked Edward why he always sat cross-legged.
He said it stopped the lump on his thigh hurting. My heart raced.
The next morning we took him to A&E and a scan showed he had a particularly aggressive tumour.
He was prescribed six chemotherapy sessions in 21-day cycles.
RELATED STORIES
By January, the tumour was small enough to be removed and Edward now has chemo and physiotherapy.
He’s been so brave, and goes to school when he can.
We’ve since had both the boys tested for Li-Fraumeni syndrome and while the results came back negative, the test isn’t fail-safe and doctors still treat us as a Li-Fraumeni family.
This means the boys may suffer from further cancers and get priority if they show any symptoms.
Our ordeal has only made my relationship with Alexander stronger, but I see a psychologist as I’ve suffered with anxiety ever since Henry’s diagnosis.
While it’s horrible knowing the boys may well have to go through treatment in the future, we try to cram as much fun in now as possible.
It’s taught us not to take anything for granted."
BTW
- Childhood cancers account for 0.5% of all cancers in the UK.
- Nearly half of those affected by Li-Fraumeni syndrome have a cancer diagnosis before they turn 30.
- The syndrome was first reported in 1969 by Frederick Li and Joseph Fraumeni.
Claire is supporting .