When my baby boy refused his milk I knew something was wrong – but the truth floored us


A MUM who had a gut feeling her baby’s feeding wasn’t right was devastated to find out the truth.

When Lucy Ellerker was pregnant with her fourth child, she felt a sense of doom.

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Lucy Ellerker said she knew there was something wrong with Opie before he was even bornCredit: PA Real Life
Opie is now two-years-old and has faced a difficult life so far

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Opie is now two-years-old and has faced a difficult life so farCredit: PA Real Life

Most of 41-year-old Lucy’s pregnancy was a smooth ride, but as her due date grew closer, she became extremely concerned.

She said: “My intuition was screaming at me. I kept thinking that something was up.

“I was going back and forth to the hospital, asking them to double check things.

“In the end, I was induced two weeks early as I couldn’t stop stressing.”

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Baby Opie was born on May 19, 2020, weighing 8lb 2oz, to the delight of his mum Lucy and dad, Lewis Jones, 34. 

They already shared Emily, five, together, and looked after their daughters from previous relationships. 

Lucy, of Warboys, Cambridgeshire, said: “He was just perfect.

“Over the next few months, Opie grew bigger, hitting all his milestones.

“But, as this was my fourth child, I started to notice little differences in his behaviour. 

“At five-months-old, he was quieter than my girls had been at his age.

“[He] wouldn’t have as much milk as I felt he should be wanting.”

Gut instinct

Determined to get to the bottom of it, social worker Lucy booked a doctor’s appointment.

She said: “The doctor checked him over and everything seemed fine, but while we were there, Opie had a sharp intake of breath which the doctor noticed.

“Feeling his tummy, he also noticed that Opie’s stomach was enlarged.”

The doctor advised Lucy take Opie to hospital, but at the time, she didn’t feel worried.

“I stopped off at home before going to hospital and I remember Opie gurgling and smiling away from his carrier,” she said.

“Little did I know, it was the last time our family would feel normal.”

Opie had an evening of blood tests at Hinchingbrooke Hospital in Cambridgeshire, before a consultant took Lucy and Lewis, who are engaged, aside.

“He told us that they thought Opie had leukaemia and it was really serious,” Lucy said.

“I completely freaked out. It was the last thing I had expected – every parent’s worst nightmare.

“I ran out of the room crying, unable to comprehend what lay ahead for my little boy.”

Opie was taken by ambulance to Addenbrooke’s Hospital in Cambridge on October 27, 2020, and admitted to intensive care.

Lucy said: “I wasn’t allowed to drive him myself as he was at risk of a stroke.”

Doctors confirmed Opie’s leukaemia diagnosis. He was only five months old at the time.

Recalling Opie starting chemo, Lucy said: “Doctors wanted to lower the number of cancer cells in his blood while they searched for a bone marrow donor.

“The chemo really wiped Opie out, though, and it was very hard to see him so poorly.”

In December, Opie became eligible for immunotherapy, before in February 2021, he finally had his bone marrow transplant from a donor in the US.

Lucy said it felt like “the light at the end of the tunnel”, as the bone marrow saw Opie reach his first birthday.

But sadly, in the end, Opie’s bone marrow transplant failed and by June 2021, there were signs his leukaemia was returning. 

Lucy said: “Suddenly, we were thrown back onto the rollercoaster of searching for treatment.

“It was terrifying. We felt like we were out at sea and the waves just kept on crashing over us… the storm had started again.”

Lifeline 

A new treatment, CAR-T therapy, was considered as a last option for Opie.

Lucy said: “The doctors make it clear that this was Opie’s last chance. Nothing else had worked and if the CAR-T therapy failed, then we were out of options.”

The CAR-T therapy involved extracting T cells from Opie’s blood and ‘training’ them to fight cancer cells.

Afterwards, the blood was put back into Opie’s bloodstream, at Great Ormond Street Hospital.

While the treatment has been available to adults on the NHS for 10 years, it has only recently been made available to young children.

Opie is only the ninth baby in Europe to receive it and Lucy says it’s keeping him alive. 

She said: “If Opie hadn’t had the CAR-T therapy, he wouldn’t be here. It’s the reason my little boy is alive.

“So far, everything looks clear and he is officially in remission.”

The hope is that if the CAR-T cells are still there one year later, they will be permanent and prevent the cancer returning, and after five years, Opie would be in the clear. 

In the meantime, Lucy is delighted that Opie – now two-years-old – is home and living some kind of normal life.

She said: “He really is just like any other two-year-old. He’s the cheekiest little boy, he’s so funny.

“He couldn’t go to nursery or playgroups for a while, as his immune system is still rebuilding, but he has just recently been given the go-ahead by doctors.

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“Every night, as I tuck him into bed, I can’t believe how lucky I am to have Opie safely at home with us.

“I’ll always worry about his health, but I’m incredibly grateful to his medical team for the progress he’s made.”

Lucy said the diagnosis was "every parents worst nightmare"

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Lucy said the diagnosis was “every parents worst nightmare”Credit: PA Real Life
Opie was diagnosed with cancer when he was five months old. He is pictured in hospital at six months

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Opie was diagnosed with cancer when he was five months old. He is pictured in hospital at six monthsCredit: PA Real Life
CAR-T therapy (which Opie is pictured receiving) was Opie's last option. Lucy says it is the reason he is still here

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CAR-T therapy (which Opie is pictured receiving) was Opie’s last option. Lucy says it is the reason he is still hereCredit: PA Real Life

What is leukaemia?

LEUKAEMIA is a type of blood cancer that affects cells in bone marrow and attacks the immune system.

It is a cancer that leads to the body making too many abnormal white blood cells (immune cells that fight infection).

These blood cells are not fully developed and are called leukaemia cells.

As the bone marrow becomes full of leukaemia cells, it is unable to produce the large numbers of normal blood cells which the body needs.

It means the body is less likely to be able to defend itself against infection.

There are four main types of leukaemia. Combined, around 9,900 cases are diagnosed each year in the UK.

There are 4,830 deaths each year.

Symptoms include:

  • Anaemia
  • Weakness and tiredness
  • More frequent infections
  • Fever
  • Bleeding and bruising





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