James (left) with Max (right) and their sister Jess (middle)
For Childhood Cancer Awareness Month, we spoke to four siblings to get their perspective of how childhood cancer affects families
In part 2 of a 3-part series, James shares the story of his younger brother Max, who was diagnosed with chronic myeloid leukaemia – a type of blood cancer – in May 2003.
It was just after Christmas that James and his family began to realise something wasn’t quite right with Max.
“We’d been away over the new year and Max had lost a lot of weight,” says James. “He hadn’t been eating and my parents thought something wasn’t right with him.”
James was 13 and at boarding school, and by his own admission “wouldn’t have noticed anything any different”.
“Mum and Dad spotted the changes immediately,” he remembers, and took Max to the doctors. But it was the Easter holidays before Max’s diagnosis came through.
“We were going away to Portugal the next day, so my Dad came to school to pick me up,” he says. “I waved at him because I could see him from my bedroom window, and I was excited to be going away with my family.”
“I came downstairs and jumped in the car and was like ‘Where’s Max? Where’s Mum?’ because he hadn’t been in school with me. Dad told me Max was in hospital and I started crying immediately. I was like, ‘Has he broken a bone? What’s wrong with him? Is he okay?’ And that’s when Dad said he’s got cancer.
‘I didn’t really know what it meant, other than we were going straight to hospital’
James’s initial reaction was one of confusion. He didn’t really know what a cancer diagnosis meant.
“It was just more of a scary word I guess at that time,” James explains. “I didn’t really know what it meant, other than the fact that we were going straight to the hospital to go and see him. Obviously, my dad was upset, and I was upset, but we didn’t really know what was going on.”
“When we got there, we saw Max and I saw my sister and it was all a bit of a shock,” he says.
James kept their youngest sister Jess, who was only 3 at the time, entertained in the hospital while they were waiting for Max and their parents.
“She was really young and had no idea what was going on, so I looked after her, just playing some games outside, but I didn’t know what to expect.”
The rest of the day was a complete blur for James. And it wasn’t until he went back to school that his new way of life really started to register.
Life at school when your younger brother has cancer
For James, being back at boarding school meant feeling a bit helpless, as he was away from home while Max was in hospital.
“I’d speak to my parents when I could, but I didn’t feel a part of it completely,” explains James. “Mum and Dad wanted me to carry on with life and not get too worried about something we didn’t know much about at the time.”
But James says that’s not so easy.
“I remember being upset, and my teachers saying everything will be okay, but I wasn’t really happy with things.” This quickly started to show in James’s behaviour at school.
“I was kind of rebelling a bit. I lost my temper quite easily and couldn’t really concentrate,” he says. “I almost used it as an excuse. Not intentionally, but it was on my mind.
“I broke down in class a couple of times and couldn’t go to some lessons, just because I didn’t physically feel like I could sit down for that period of time. I went on a bit of a mad streak I guess to be honest.”
And when you’re a young teenager, your friends don’t necessarily know what it’s like to deal with something like that, so James had to find other ways of coping.
“I was just trying to keep myself busy. I was quite sporty so being on a sports team I’d have fixtures after school and at the weekend and training after school.”
James felt the routine of meals, sport and homework helped to keep him distracted, but he was also able to look to other people for support.
“My boarding house master, Mr Jones, was hugely helpful for the whole family as well as for me,” says James. “He was my rock during that whole period, and like an older brother to me.”
Mr Jones even went beyond the call of duty as a teacher and took James and some of Max’s friends out to the hospital to see Max while he was being treated.
The road to recovery
Max’s treatment involved a two-year clinical trial testing the drug imatinib (Glivec). James says this was a particularly tough time, with Max losing his hair and being kept in a box that visitors weren’t allowed inside in case of infection.
But hope came in the form of a bone marrow transplant. “Obviously Jess and I were both checked to see if we were matches, but unfortunately we weren’t,” James recalls. “It made me feel like a bit of a let-down to my family, because I wanted to help.”
But fortunately, a few months later, they found a match for Max, and he was able to undergo the transplant.
“It was still touch and go,” adds James. “It was like, ‘When are we going to find out?’ We knew five years would be remission, but we weren’t able to act like normal.”
It wasn’t until Max started to get his strength back that the family were able to return to their everyday lives. But James does remember looking out for Max more than normal during this time. “If he got injured or hurt playing football, I’d be overly protective of him, or if he got lost in the park and wasn’t with me, I’d be worried.”
Experiencing cancer together means it continues to affect all their lives. Max will experience side effects for the rest of his life, says James. But he feels their approach to this has been positive. “If your heart’s beating and you’re alive and happy, then you’re in a good place and that’s what matters most.”
With hindsight, James can be much more positive about what happened. “Cancer back then was very much a scary word I associated with dying,” he says.
“But for me, the word cancer doesn’t mean the word death anymore, and there can be a positive outcome. There are a lot more success stories now.
“Research is coming along, and new technologies and new science are being developed all the time to prevent people from dying.”
And James is a firm believer in the work that charities like Cancer Research UK do, having run fundraisers and events when he was back at school and continuing to be a supporter. But mostly, it’s Max who still inspires him.
“I would say mine and Max’s relationship has come on leaps and bounds over the years, and I feel we’re all closer for it. I’m so proud of what he’s done and how far he’s come, and I hope he continues to be successful in everything he does.”
We would like to thank James for sharing his story and helping raise awareness of cancers that affect children and young adults. If you’ve been affected and need to talk to someone, you can call our nurses on freephone 0808 800 4040 or contact them via this online form.