Luke Everett

07 December 2011

Luke was diagnosed with hepatoblastoma, a very rare cancer when he was just six months old. His mum Claire shares their story.

Luke Everett as a baby

"Luke appeared to be a healthy, very happy, contented baby.

When he was five months old, he began to take less milk in a feed, needed to feed more often, and didn't appear to enjoy solids. We weren't overly concerned and neither was his Health Visitor.

One morning when I was changing his nappy (he was six months old), I noticed a lump protruding from under his ribcage when he was lying down. It felt very big and it was hard and solid.

I rang my Health Visitor with my concern and she visited within the hour. She didn’t seem overly concerned but advised we see our GP over the next few days.

I got an appointment for the following morning Friday 14th December 2007 - the beginning of the worst time of our lives.

Luke was referred for blood tests and scans

The world as we knew it fell apart and we started the long journey that was cancer.

I remember sitting in the waiting room with Luke asleep in his carseat, the Christmas tree in the waiting room and carols playing. He looked so healthy and contented. It will be nothing, I thought.

Anyway, the GP examined him and referred him immediately up to Frimley Park Hospital A&E department as he wanted a scan done and bloods taken. He didn't alarm me too much but he was persistent and serious.

We spent the afternoon at the hospital and he had an ultrasound scan, CT scan and numerous bloods tests.

It was very distressing for us all.

They informed us that evening that our baby boy had cancer – but they didn’t know what type and how serious it was.

"Babies don’t get cancer!! There must be a mistake," I thought. The world as we knew it fell apart and we started the long journey that was cancer.

Luke

Luke was transferred up to Great Ormond Street Hospital in London - we spent a week on Lion Ward whilst the oncology team did further tests, a biopsy of the lump, inserted his central line, he had an MRI scan and another CT scan .

Luke went through so much that week but he was still the happy baby boy we knew and loved.

We missed our other 2 children terribly and it was a very difficult time for them too. Luckily we had grandparents to help as much as they could.

Chemotherapy and surgery to remove the tumour

Luke has been in remission now for three years...and he is doing really well.

On 21st December 2007, he was diagnosed with Stage 1 hepatoblastoma - a very rare tumour in his liver.

Only one in every million children develops this disease and our son was one of them.

Stage 1 was good as it meant the tumour had not spread although it was 11cm wide and was squashing most of his abdomen - including his stomach which answered why he wasn’t eating very well. The tumour was so big it was inoperable at that time.

Luke endured four rounds of toxic chemotherapy for two months, followed by major surgery lasting six hours to remove the tumour once it was small enough for them to remove safely.

He then had further chemotherapy to ensure that no cancer was left inside him.

Luke at four years old

Luke has been in remission now for three years

Although he still has regular follow-ups and will continue to do so for years to come, he is doing really well. He started school in September 2011.

Thank goodness our GP took it seriously – any delay in diagnosis and treatment may have meant a very different outcome."

Read more: About childhood cancer | Treating childhood cancers

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