Losing a child to cancer: ‘People keep saying: “I don’t know how you do it” – but there’s no getting out of it’
Their son’s life journey is one that no parent ever wants for their child. But Galway dad Brian Higginbotham hopes that by sharing the life story of his son Myles, who passed away from a rare form of leukaemia three years ago, other children with childhood cancer will benefit.
ince Myles’ death on December 2, 2019, at only four years old, Brian and his wife Lisa Chambers have found themselves adrift on a sea of grief. As they face into another Christmas without the love of their lives, who was known to many as the ‘Little Fighter’, Brian and Lisa are determined that their son’s legacy will be to provide hope for families in the darkest of times.
Last October, Brian embarked on a fundraising drive for Cancer Fund for Children, an all-island charity that supports children, young people and families impacted by cancer through therapeutic short breaks at their centre, Daisy Lodge in Newcastle, Co Down, as well as providing social and emotional support in hospital and at home.
He hopes that all monies raised will go towards the building of a brand new facility in the west of Ireland for children affected by childhood cancer and their families. So far he’s raised over €156,000 and the money is still coming in as people touched by their little boy’s story continue to donate.
Not long after Myles was born in July 2015, Brian and Lisa made the decision to relocate from Dublin to Galway to be nearer their families. Brian’s parents live in Salthill while Lisa’s parents live in Newport, Co Mayo. They settled into their new lives and Myles began attending a creche just around the corner.
It was on St Patrick’s weekend of 2018 that Myles spiked a temperature and wasn’t feeling himself. Lisa, who had taken him to her parents in Mayo for the Bank Holiday weekend, returned home and the couple took their son to the out-of-hours doctor.
It was thought that Myles’ condition was viral but the doctor told his parents that if his condition didn’t improve, they should bring him to his GP. When a few days later he still wasn’t himself, the GP who saw him was concerned that his stomach was distended and sent the family to A&E but again doctors still believed it was viral.
A few days later, Lisa became concerned as Myles kept falling over as he was running around the kitchen. They took Myles straight to hospital. After waiting several hours and getting bloods done, Brian and Lisa received the most shocking and devastating news — their son was seriously ill.
The next morning, Myles travelled to the children’s hospital in Crumlin by ambulance with his mum while Brian followed behind in the car with his own father. Myles was diagnosed with high-risk T-cell acute lymphoblastic leukaemia. His white blood cell count was off the charts.
By lunchtime, Myles was in a medically induced coma. Brian says he just kept thinking it was all a bad dream. “We just got picked up and thrown upside down,” he says.
What followed was 20 months of lengthy hospital stays, where Lisa and Brian would take it in shifts to be with their son. Doctors told the family that Myles would need a bone marrow transplant for any chance of a cure.
After 11 rounds of high-dose chemotherapy and eight full-body radiation sessions, Myles was deemed ready to have his bone marrow transplant on May 17, 2019. Following the transplant, he spent 65 days in his hospital room. His family hoped this might be the last major hurdle he’d have to face.
Within weeks, he began to rally. Hospital visits became weekly appointments. Doctors suggested the family start thinking about school beginning for Myles after Christmas.
After his weekly check-up, Brian remembers going home for Halloween and Myles dressing up as Batman. Lisa had gone to Dublin for a work event when Brian’s phone rang just after 6pm on November 1, 2019. The call was from the transplant ward at Crumlin and Brian was confused as to why they would be ringing him at that hour of the day.
The news was devastating — leukaemia had shown up in Myles’ bloods again. Myles had relapsed. When the family returned to Crumlin once again, blood test results showed Myles’ white blood cells had increased, indicating disease.
After consultation with Myles’ doctors, the family made the choice to return home to Galway, a Garda escort guiding them.
Brian says they decided to make the ordinary extraordinary for Myles with his extended family and friends.
“He got to switch on the Christmas lights in Galway City in front of thousands of people. One of our friends flew him in an airplane in the skies over Galway. Santa came to the house. Some of his favourite sports stars came to the house — he was mad into his sports like rugby and golf. He got to do things I never got to do in 43 years of my life, and I’m proud to be his Dad,” he says.
Myles didn’t become really ill until the weekend of the Late Late Toy Show, the last weekend of November. “He never really complained. He would just rub his tummy and say ‘Oww’. We knew it was just a matter of time,” says Brian.
On Monday, December 2, Brian went out for a walk and when he came back Lisa went out for a walk. Brian recalls how Kevin, one of the palliative care nurses who attended Myles, advised her not to go too far.
It was 8.26pm on an ordinary Monday night when Myles — who had lived for four years, four months and two days — died, ensuring life would never again be the same for his mum and dad.
“Myles had been sick and he hadn’t eaten for two days. I got a bit of yoghurt into him. He was lying on the couch and he wasn’t really saying anything. He used to love certain songs and one of those was Someone You Loved by Lewis Capaldi. It came on in the kitchen and he looked up at me and Lisa, and then he smiled and closed his eyes,” says Brian.
Throughout his illness, Brian says his son never gave up. Even after gruelling treatment, he’d be zipping around through the hospital corridors on his scooter and playing football on St John’s ward in Crumlin.
The loss of their golf and football-mad little boy has left such a hole in their lives and their hearts that Brian says unless you have gone through it, you could never have any idea what the grief is like.
“There’s days you don’t want to do anything but I keep doing things. We are very fortunate to have very close family and an extended network of friends who continue to support and rally around us. People keep saying: ‘I don’t know how you do it’ but there’s no getting out of it,” says Brian.
He decided to raise money for the building of a Daisy Lodge because they were meant to go there with Myles but they never got the chance in the end.
Plans are underway to build one in Cong, Co Mayo, and Brian says he’s actively trying to raise as much money as he can because he knows the pain and suffering families of children with cancer go through.
“It was important to have the event at my home club as this was the first place Myles wanted to go when he got out of hospital,” Brian says of the event he held at the Galway Golf Club with the support of the Trends Golf Society, last October.
Myles and Lisa both believe that it’s the power of the people who are touched by Myles’ story who will make a difference for children and their families impacted by cancer.
“It’s said that people who are truly strong lift people up and that people who are truly powerful bring people together. Myles was one such powerful person. He continues to bring people together and all for the good,” says Brian. And for parents watching their children go through treatment for cancer, Brian says it’s not even about taking things day by day, it’s minute by minute. His advice to families at this time of year is simple. “Enjoy every minute”.
Phil Alexander, CEO of Cancer Fund for Children described Lisa and Brian’s efforts to raise vital funds to support other families as truly humbling. He says the new therapeutic centre would be a safe, supportive space where families navigating childhood cancer could focus on spending time together.
“It’s inspired by Cancer Fund for Children’s existing Daisy Lodge in Newcastle, Co Down, which supports approximately 1,800 children and parents from across the island of Ireland each year. Having a second therapeutic centre will allow the charity to increase this number to 4,000 a year,” said Mr Alexander.
*For anyone wishing to donate please go to idonate.ie/fundraiser/BrianHigginbotham
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