Joy as walking miracle Caleb defies the odds and starts Primary 4

Caleb Stirrat is all smiles on his first day in Primary 4 at St Eunan’s Primary School in Clydebank.

He is the wee walking miracle who has fought back from the brink four times.

Eight-year-old triplet Caleb Stirrat – with his sisters Poppy and Alyssia – battled for survival after being born 13 weeks early at Glasgow’s Queen Elizabeth University Hospital. They were so tiny they could fit into the palm of a hand.

But, just after their third birthday in 2019, tragedy struck when Caleb was diagnosed with a rare brain tumour and was given just weeks to live. His parents fought against the odds for their son to be part of a new but risky drug trial in the slim chance it would keep him alive. It worked.

Caleb Stirrat along with his sisters Alicia, left, and Poppy.

Then, in the run-up to Christmas 2020, little Caleb developed meningitis and his life once more hung in the balance.

Yet again he defied the odds, making it home from hospital to his family in time for Christmas Eve.

In the summer of 2021 he even started school, a day his family were told they would never see.

Their joy was short-lived when in October 2022 the drug trial that was keeping Caleb alive ended. The cruel knowledge that without it his tumour could return left them devastated. Their wee boy faced another death sentence.

Defying the odds

Yet this week, as Caleb – alongside his sisters – entered primary four at St Eunan’s RC Primary School in Clydebank, his mum Karen revealed that 22 months after the trial ended, a scan has shown no signs of the tumour.

Karen said: “It’s a miracle. I don’t have any words for it because it’s amazing, even the doctors are amazed. It will be two years this October since Caleb stopped having the trial drug.

“He was scanned a week past Wednesday and there was no change. The tumour has not grown back. It’s mad – good mad – we are so relieved.

“Look at where he is now compared to where he was when the doctors told us he had weeks to live and recommended palliative care. He wasn’t expected to survive long enough to even start school and here he is going into primary four. It’s astonishing.

“The big battle back then was to get him into the trial. We succeeded, and that was going well, then they decided to give him a half dose of the drug that was keeping him alive. We thought the tumour would return, but it didn’t.

“Then, 10 months later, the trial stopped and we thought the tumour would definitely come back.

“Caleb was having six-weekly scans and all was good. Then they upped that to a scan every 10 weeks, and then every 12 weeks, and it was still good. And now here we are with still no sign of the tumour.

“But we are taking each day as it comes.”

Caleb’s journey

The triplets were born in January 2016 after their mum and dad had IVF to realise their dream of becoming parents. Alyssia weighed in at 2lb 2oz, Poppy at 2lb 3oz and Caleb at 2lb 8oz.

Everything was fine until a few weeks after Caleb’s third birthday, when he became violently ill following a light bump to his head at a soft play centre. At first his vomiting and severe headaches were thought to be viral. But he was eventually seen by a neurologist, who arranged a scan. Karen said: “In the space of half an hour I was told he had a large mass on his brain that had haemorrhaged.”

Caleb was rushed to the operating theatre where he underwent eight hours of brain surgery before being taken to the intensive care unit. Within a week he was walking and talking again. But biopsy results confirmed he had an atypical teratoid rhabdoid tumour (ATRT). It’s thought the bump to his head triggered events.

He was given chemotherapy and even went to the US to have specialist proton therapy. The family were buoyed by two subsequent clear scans.

But the Covid pandemic meant further regular scans were delayed.

They sought a second opinion and, within days, found an oncologist in Manchester who agreed to put Caleb on a clinical trial – which it was hoped would prevent any regrowth of the tumour – but only after it was removed.

Glasgow Royal Hospital for Children agreed to carry out the surgery. It went ahead just over two weeks later and was a success. The operation was followed by 30 sessions of radiotherapy.

The trial’s start depended on a scan showing Caleb was tumour-free.

Once that happened, the tazemetostat drug trial started two days later. There was no guarantee his tiny body would cope with it, but he continued to do well until December 16.

She said: “He was admitted to the Royal Hospital for Children on December 16 with a high temperature and given a lumbar puncture and blood tests and meningitis was diagnosed.”

Caleb was treated with antibiotics and allowed home on Christmas Eve, just in time for bed and the arrival of Santa.

But he had to return to the hospital once a day to complete his treatment. He continued to have the trial drug, initially on a full dose then reduced by half, until the trial ended.

Caleb’s Trio of Hope

Caleb has helped his parents launch a charity to support other families facing palliative care for their children. Caleb’s Trio Of Hope, which has already raised £24,000.

He became the Pride of Scotland awards’ Child of Courage earlier this year.

His mum said: “Caleb is doing magnificently in comparison to where we were with the brain tumour, but there are problems.

“His treatment came with risks, and he has two brain injuries which have caused cognitive and memory issues, but we can deal with that.

“It is hard work some days but not anything near as bad as it was.

“All that matters is he is alive and able to do the things he needs to do.”