We need to know more about leukaemia, say Shotley family who lost toddler
- Credit: Callan Brett
A family from Shotley are urging people to donate to the charity Leukaemia UK after losing their son to the disease.
Henry Brett was just 19 months old when he passed away in May last year. He was diagnosed with acute myeloid leukaemia (AML) on March 7, 2020, just before the country entered the first lockdown.
His family are sharing their story, in the hope of raising awareness and vital funds for leukaemia research.
“Henry was almost exactly 23 weeks old when he started chemo,” remembers his mother, Callan Brett.
“We went to Ipswich Hospital because he’d been ill all week and he wasn’t getting any better.”
“They then told us he had leukaemia and we were going to Addenbrooke's that night. We found out at about half eight in the evening, and by midnight we were settling into our bed on the ward.”
Within 24 hours, Henry had started chemotherapy.
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He spent the next seven months in hospital, Callan explains, in a loop of having seven weeks of treatment and then one week at home.
Covid, of course, made the whole experience even more difficult, since restrictions meant that Callan and her husband James were not allowed on the ward at the same time.
It felt, Callan says, as though they were “single parents with one child each.” Their oldest son, Theodore, is five.
Henry came home on October 8, and managed to spend Christmas at home with his mum, dad and big brother.
However, he kept developing fevers, which meant constant visits to Ipswich hospital.
“They couldn’t work out what the infection was at the beginning, they just knew it was viral. We kept thinking it was a cold from having a bigger brother who went to school,” says Callan.
“Then he developed a rash.” The rash eventually joined up all over Henry’s body and his skin started to peel.
In January last year, Henry was admitted back to Ipswich hospital. He went from there back to Addenbrooke's, and then, on March 8, to Great Ormond Street hospital.
He stayed there until May 13, when his family brought him home. He passed away a few days later.
Callan remembers her son as cheeky charmer.
“He used to wait for the nurses to come onto the ward for their shifts, and he’d go and hold their hands. He was in a baby walker and he’d escape from his room, and he’d hold their hands and walk down the hall with them.
“That’s the kind of kid he was. He loved to smile, he liked to flirt with the nurses, he liked all of their attention. His cheekiness just came out in whatever they allowed him to get away with.”
What Callan and James want now is for children like Henry who have this disease to not just survive, but be less ill while they are in remission. This can only happen through further research.
“AML is a really rare leukaemia to get in the first place, but it’s even rarer for children to get. Only 70 children a year are diagnosed with it in the UK,” says Callan.
“The reason we started working with Leukaemia UK in the first place is Henry was part of two different trials to find a chemotherapy that would work with him. He was in remission when he died.
“But the chemotherapy was just too harsh. He had 66 doses of chemotherapy in those seven months just to get him home. It was so extensive and exhausting. Although he went into remission, we’ll never know how much was too much, in the end.”
After Henry died, Leukaemia UK have kept in contact with the Bretts to offer their continued support, particularly from Paul Abbott who joined the charity in July.
Fiona Hazell, the Chief Executive of Leukaemia UK, says: “No child should have to suffer like Henry did. And no family should have to lose a child in this way. That’s why we’re funding over 20 research projects and clinical trials across the UK, all focused on delivering new treatments for leukaemia.”
Leukaemia UK are running several fundraisers at the moment. To support them, visit: www.leukaemiauk.org.uk