31 Aug 2023

“If I have to live the entire rest of my life without him, then there has to be progress in that time.”

After a difficult pregnancy, in which Callan and her husband James were told on two separate occasions that their baby might need to be delivered early, Henry was born in April 2020 as a healthy and happy full-term baby. The family quickly settled into life as a family of four, with Henry’s older brother Theodore, aged 4, doting on the new addition.

Callan said: ‘Henry adored Theodore, and Theodore adored him. They would laugh and play all the time. If Henry burped, Theodore would just find it hilarious! Later on in the hospital, Theodore would Facetime Henry whenever he could, and they would just babble and giggle in their own language, for as long as they could.’

Henry was 5 months old when he began to seem unwell, crying regularly and displaying a fever, with a few small lumps appearing on his head. Callan took Henry to A&E along with his grandmother, Sally; a nurse with 35 years’ experience, who told the hospital that they would not be leaving until Henry had been given a blood test. Callan tried to remain optimistic, until they were taken into a private room and given the devastating news that Henry had leukaemia.

‘I was shellshocked,’ said Callan. ‘The only way I can describe it is total devastation. All I could feel was sheer panic. Later, I felt such guilt as well. If he’d been my first child, I might have worried sooner, but because he was my second – and because he was such a happy baby – I was more relaxed. I just felt so guilty.’

Henry was admitted to Addenbrooke’s Children’s Hospital that same night, with a Hickman line to administer chemotherapy fitted in the early hours. He would go on to spend months in hospital enduring four rounds of brutal chemotherapy. Due to Covid restrictions in place at the time, Callan and James were only allowed to be with Henry individually. Theodore, who was unable to visit his beloved younger brother, began struggling with his mental health as the once happy family was now brutally torn apart.

‘The risk of infection was so huge that we only managed to all be together three times, from the moment Henry was diagnosed until the day he died,’ said Callan. ‘Christmas 2020 was one of the last times. We were able to bring Henry home and Theodore was so excited, sharing everything with him. Henry sat on his Grandad’s lap and ate chocolate biscuits most of the day! His aunty would carry him around any chance she could. Everyone just doted on him.’

On Boxing Day, however, Henry was ‘a completely different child’ and once again appeared very unwell. Soon, Henry was taken to Great Ormond Street Hospital in London. 

In May 2021, after a rare weekend in which Callan and James were able to spend time together as Henry’s grandmother looked after him, the parents were driving from Ipswich to GOSH when they received a call from Sally.

‘She asked what time we were going to be there,’ remembers Callan. ‘She sounded annoyed, so that annoyed me. I thought, you know how long the journey takes, why are you asking? Now, I know that she wasn’t annoyed – she was panicking.’

When they arrived at the hospital, Callan and James were met by Henry’s lead nurse – who told them to be prepared for what they were about to see.

‘He was intubated to keep him breathing,’ said Callan. ‘His little body was just covered in wires. They took him for an emergency CT scan and we couldn’t go with him. Then they moved us all to PICU and I lay in bed with him that night, where he had a seizure. His brain was full of abscesses and he was in pain. He developed a rash that eventually joined up all over his body and his skin began to peel. Towards the end, he had diarrhoea and started vomiting blood. It was brutal. And it was so unfair. There was nothing more that they could do.’

Callan and James decided to bring Henry back home, hoping that he would survive the journey to see Theodore one last time. Fortunately, he did.

‘He stayed alive for 56 hours,’ said Callan. ‘It was the longest weekend of my life. I can barely remember it. I didn’t sleep – I just wanted to look at him. Theodore came in and spoke to him about Minecraft. Then he just let go.’

Six months after Henry’s death, Callan retrained as a Health Care Assistant having experienced the importance of support for families dealing with illness. She is now determined to tell Henry’s story and to raise awareness of infant leukaemia, both to help other families experiencing the same thing, and to highlight the urgent need for research.

‘My baby cannot have died for no reason,’ said Callan. ‘His death has to mean something. If I have to live the entire rest of my life without him, then there has to be progress in that time. We cannot have lost him for no reason, and we cannot stand by knowing that more research could spare another family from his type of heartbreak.’

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