Her son’s life journey is one that no parent would ever wish for their child. But Galway father Brian Higginbotham hopes other children with childhood cancer will benefit as he shares the life story of his son Myles, who died of a rare form of leukaemia, three years ago.
Since the death of Myles on December 2, 2019 at the age of just four, Brian and his wife Lisa Chambers have been on a sea of grief. As they face another Christmas without the love of their lives known to many as “Little Fighter,” Brian and Lisa are determined that their son’s legacy will be one of bringing hope to families in the darkest of times.
Last October, Brian launched a fundraiser for the Cancer Fund for Children, an island-wide charity that supports children, young people and families affected by cancer through short-term therapeutic stays at their centre, Daisy Lodge in Newcastle, Co Down, providing social and emotional support in the hospital and at home.
He hopes any funds raised will go towards building a brand new facility in the west of Ireland for children with cancer and their families. So far he has raised over €156,000 and the money is still pouring in as people touched by their little boy’s story continue to donate.
Shortly after Myles was born in July 2015, Brian and Lisa decided to move to Galway from Dublin to be closer to their families. Brian’s parents live in Salthill while Lisa’s parents live in Newport, Co. Mayo. They settled into their new life and Myles started attending a daycare center just around the corner.
It was St. Patrick’s weekend in 2018 when Myles developed a fever and was not feeling well. Lisa, who had taken him to her parents’ house in Mayo for the bank holiday weekend, returned home and the couple took their son to the doctor’s who was out of hours.
Myles’ condition was thought to be viral, but the doctor told his parents to take him to his GP if his condition didn’t improve. When he was still not himself a few days later, the GP who saw him was concerned his stomach was bloated and sent the family to the emergency room, but doctors still believed it was viral.
A few days later, Lisa became concerned when Myles kept falling over running across the kitchen. They took Myles straight to the hospital. After waiting several hours and drawing blood, Brian and Lisa received the most shocking and devastating news – their son was seriously ill.
The next morning, Myles rode in the ambulance to Crumlin Children’s Hospital with his mother, while Brian followed in the car with his own father. Myles was diagnosed with high-risk T-cell acute lymphoblastic leukemia. His white blood cell count was off the charts.
At lunchtime, Myles was in a medically induced coma. Brian says he always thought it was all just a bad dream. “We were just picked up and turned upside down,” he says.
What followed was 20 months of protracted hospital stays, during which Lisa and Brian took turns with their son. Doctors told the family that Myles would need a bone marrow transplant to have any chance of a cure.
After 11 rounds of high-dose chemotherapy and eight whole-body radiation sessions, Myles was considered ready for his bone marrow transplant on May 17, 2019. He spent 65 days in his hospital room after the transplant. His family hoped this might be the last major hurdle he faced.
Within a few weeks he began to collect himself. Hospital visits became weekly appointments. Doctors suggested that the family consider starting school for Myles after Christmas.
After his weekly checkup, Brian recalls going home for Halloween and Myles dressed up as Batman. Lisa was driving to Dublin for a work event when Brian’s phone rang just after 6pm on November 1, 2019. The call was from the transplant center in Crumlin and Brian was confused as to why they were calling him at this time of day.
The news was devastating – leukemia had returned to Myles’ blood. Myles had a relapse. When the family returned to Crumlin, blood test results showed Myles’s white blood cell count had increased, indicating an illness.
After consulting Myles’ doctors, the family opted to return to Galway, accompanied by a Garda escort.
Brian says they decided to make the ordinary extraordinary for Myles with his extended family and friends.
“He had to turn on the Christmas lights in Galway City in front of thousands of people. One of our friends flew it in the skies over Galway on a plane. Santa Claus came to the house. Some of his favorite sports stars came to the house – he was crazy about his sports like rugby and golf. He had to do things I’ve never had the opportunity to do in 43 years of my life, and I’m proud to be his father,” he says.
Myles didn’t get really sick until the weekend of Late Late Toy Show, the last weekend of November. “He never really complained. He just rubbed his stomach and said ‘ouch’. We knew it was only a matter of time,” says Brian.
On Monday December 2nd Brian went for a walk and when he came back Lisa went for a walk. Brian remembers how Kevin, one of the palliative care workers who looked after Myles, advised her not to go too far.
It was 8:26pm on an ordinary Monday evening when Myles – who had lived for four years, four months and two days – died to ensure life would never be the same for his mother and father.
“Myles was ill and he hadn’t eaten in two days. I put some yogurt in it. He lay on the couch and didn’t really say anything. He used to love certain songs and one of them 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.
During his illness, Brian says his son never gave up. Even after grueling treatment, he would zip through the hospital corridors on his scooter and play football at St. John’s Ward in Crumlin.
The loss of her golf and soccer loving little boy has left such a hole in her life and hearts that Brian says if you haven’t been through it you can never have any idea what the grief is like.
“There are days when you don’t want to do anything, but I keep doing things. We are very fortunate to have a very close family and an extensive network of friends who continue to support and flock to us. People keep saying, ‘I don’t know how you do that,’ but there’s no escaping it,” says Brian.
He decided to raise money to build a Daisy Lodge because they were supposed to go there with Myles but 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 possible because he knows the pain and suffering that families of children with cancer go through.
“It was important to hold the event at my home club as it was the first place Myles wanted to go after being discharged from hospital,” says Brian of the event he is organizing in Galway with the support of Trends Golf Golf Club held society last October.
Myles and Lisa both believe that it is the power of the people who are touched by Myles’ story that will make a difference for children affected by cancer and their families.
“They say that people who are really strong lift people up and that people who are really strong bring people together. Myles was such a powerful person. He continues to bring people together and all for good,” says Brian. And for parents watching their kids undergo cancer treatment, Brian says it’s not even about taking things day-by-day, but minute-by-minute. His advice to families this time of year is simple. “Enjoy every minute”.
Phil Alexander, CEO of the 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 center would be a safe, supportive place where families coping with childhood cancer could focus on spending time together.
“It is inspired by the Cancer Fund for Children’s existing Daisy Lodge in Newcastle, Co Down, which supports around 1,800 children and parents from across the island of Ireland each year. A second therapeutic center will allow the charity to increase that number to 4,000 per year,” said Mr. Alexander.
*For anyone wishing to donate, please visit idonate.ie/fundraiser/BrianHigginbotham
https://www.independent.ie/life/health-wellbeing/health-features/losing-a-child-to-cancer-people-keep-saying-i-dont-know-how-you-do-it-but-theres-no-getting-out-of-it-42243543.html Losing a child to cancer: ‘People always say, ‘I don’t know how you do it’ – but there’s no way out’