When little Macsen Speakman bumped his head at 13 months old, his parents Ian and Bethan spotted a lump on his ear that did not go away. To be on the safe side they went to their GP, who then referred him for a biopsy in hospital.
"The doctors said that it might be something suspicious, and then we got a call to say that we should come into the hospital," explained Ian, from Llandaff, Cardiff. "They told us it was leukaemia, and from that moment everything changed - it felt like being in a vortex."
Macsen was diagnosed with acute lymphoblastic leukaemia (ALL) - a cancer of the white blood cells which help the body to fight infection - in May 2016, making him one of the 75 children diagnosed with cancer in Wales every year.
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His treatment started with a period of intensive chemotherapy which required spending lots of time in hospital. "At that point we were focused on getting through the first 28 days, which the doctors told us was an important milestone on whether the treatment was working," Ian added.
"We were taking it day by day and tag-teaming between Macsen in the hospital and our older son Math, who was seven years old. He knew Macsen was ill, but we tried to keep his routine as much as possible. The staff at the hospital were amazing and my work were very accommodating too.
"So much of that first 28 days is a blur - but when we got past that first month we could look up and start thinking beyond that. All our thoughts about life plans were out of the window and it was about working through the two years of treatment that followed."
As his immune system was so low during treatment, Macsen would get constant viruses and his parents were worried by any infection, sniffle or sneeze. Ian said: "Whenever his temperature spiked, we had to be in hospital within an hour, so we had a bag packed by the front door ready to go at any time. There were times when I was away in London for a meeting when I would get a call and would have to walk out to come home. Those visits became more normal the more we did them, and we would have to try to keep going."
When they were in hospital, Ian said he would see other families at different stages of their cancer journeys. "You could see it in their faces when they were right at the start of it all, experiencing that same vortex that we did," he added. "Looking back, we actually feel that we were quite lucky about that lump on the ear - it was an unusual symptom and the doctors were surprised that it had presented in that way, but it meant that it was caught very early."
Macsen finished his chemotherapy in 2019 and is doing well now, but still goes for regular check-ups which will continue for the rest of his life. For the courage he showed throughout his treatment, he received a Cancer Research UK for Children & Young People Star Award.
He was one of 15 children from across the UK recognised during the virtual awards show. Hosted by children affected by the disease, it was filmed to highlight the impact cancer has on young lives.
Ian said: "We want to help raise awareness and share our experience to show that there can be a light at the end of the tunnel. We are very happy to support Cancer Research UK – without research there are no advances, and the scientists need all the support we can give to help them develop kinder treatments for all children facing cancer.
"It's so important to keep raising awareness about what children and young people go through. We've always known Macsen is a VIP, but it was extra special to see him shine on screen as part of the Star Awards show. It's given us all a real boost after a tough few years. We're so proud of him."
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