At West Ham they tell a story about the days when Dylan Tombides was locked into that excruciating chain of treatments, operations and grievous setbacks that is probably a good place to start if we want to understand why there are so many people at Upton Park who talk about him with a sense of awe.

He had been diagnosed with testicular cancer in the summer of 2011. The lump appeared in April but West Ham were bottom of the league, about to be relegated, and it’s difficult sometimes when a club is engulfed in that kind of pressure. Dylan didn’t want to worry anyone, or create any more hassle, when the place was stressed enough. He went to his local GP instead and he was told it was a cyst and nothing to worry about. Then, in June, he played for Australia in the Under-17 World Cup in Mexico. Dylan was selected for a routine drug test and the results came back with the force of a sledgehammer: he had either taken a banned substance or there was a tumour in his body. He knew immediately which one it was.

His next three years are a reminder what a callous, indiscriminate disease this is, and the horrors its sufferers have to go through. It’s brutal, chemotherapy. It strips your muscles, it wipes you out, it tests your sanity. There is an old quote: “The goal is pretty much to kill everything in your body without killing you.” And every time those little drips of poison appeared to have beaten the cancer, every time Dylan and his family thought they could start to live properly again, it returned within six to eight weeks, stronger than before.

He was dying a slow death but, boy, he did everything he could to try to see the bastard off. Dylan is not the first professional footballer to contract cancer. He may be the first, though, to continue playing during the ordeal. He made his debut for West Ham with the disease in his body. He played in the Asian Under-22 Championships in Oman three weeks after intensive chemotherapy.

At West Ham, when others might have curled up into a ball, he carried on going into training, building up his muscles, taking on specially tailored fitness programmes.

And here’s the thing: West Ham monitor all their players with bleep tests and various fitness checks. Dylan’s results amazed the medical staff. One of the physios spoke to his mum, Tracy. “Dylan’s putting a lot of pressure on the other players,” he told her. “His stats are still faster and stronger than a lot of the others.”

We meet at her work. She’s dignified and trying to hold it together. Yet there are moments when talking about it is unbearable. Tracy is still grieving and probably always will be. On her way to work, she can’t listen to music any more because the lyrics – it doesn’t even matter what song sometimes – always seem to take her back to her son.

Next Sunday, 8 March, would have been his 21st birthday, and goodness knows what it is going to be like. But she also makes the point that every day hurts. Taylor, Dylan’s younger brother, has moved into his bedroom and kept all his stuff out. Christmas was hard but, again, every day is bloody hard. And the house feels so different. “It’s so quiet,” she says.

As it turned out, the Crystal Palace captain, Mile Jedinak, invited the family to spend Christmas with him. Jedinak had followed Dylan’s story as another Australian footballer in the Premier League. When he scored for Palace at Upton Park last season he didn’t celebrate, to show his respect for Dylan, and when it came to Christmas he just wanted to try to make it more bearable. It’s worth remembering sometimes, amid all the headlines this sport creates, there are some wonderful people in football, too.

Back at West Ham, they have given Dylan the ultimate compliment – the Bobby Moore treatment – by retiring his No38 shirt. Sam Allardyce remembers that in his first week at the club he asked Tony Carr, that prolific nurturer of young talent, who was the outstanding prospect in the youth team. Carr told him to look out for an Aussie kid: two-footed, with natural balance, and an eye for goal.

It’s also worth checking out the video on the website for Dylan’s new charity foundation – www.dt38.co.uk – where his mates from the youth team remember what he was like. They use words such as “legend” and “inspiration” and tell stories about how funny and popular he was. Dylan once described himself as the happiest kid with cancer. He had a handsome smile, even on the photographs when he was pulling up his shirt to reveal the 10in scar where his chest and abdomen had been opened up, and it doesn’t need long to realise how much his old team-mates looked up to him. George Moncur, now at Colchester, has Dylan’s name tattooed on his arm. Elliot Lee has just gone on loan to Luton and asked to wear Dylan’s shirt number. “Dylan was a delight to watch,” another player, Callum Driver, remembers. “We can’t forget that he was pushing for the first team while we were all scholars.”

The foundation was launched on Saturday and it wouldn’t surprise me if one day there was a film about the boy who played international football after three years of on-off chemo. As a kid, Dylan used to sleep with his football. Tracy remembers he would even take it into the bath. They were from Perth but when the family moved to Macau in 2007 the 13-year-old Dylan would play in men’s games on concrete pitches. Every weekend, he and Taylor would catch the boat to Hong Kong for more games and training. The more you know of his background, the more you realise why he refused to give up football when the cancer arrived.

In January 2012, Dylan had surgery to remove his lymph nodes and it’s heart‑rending now to read the interview he did the following May when he clearly thought he was getting better. The Daily Mail’s Neil Ashton recalls Dylan “bouncing around and putting wax in his hair for the photographs (and the girls)”. The cancer was still lurking. It returned the following month and it is almost implausible – a miracle of the body, West Ham’s doctor, Richard Weiler, will say – that Dylan was able to make his first-team debut in September, aged 18. By December, he was back on high-dose chemotherapy and needed a stem-cell transplant twice within eight weeks. Every time there was a breakthrough, another set of blood results kicked him in the gut. More surgery, more treatment. “The amount of times we saw him come back,” Allardyce recalls. “Then again and again, the cancer came back.”

It spread to Dylan’s liver after he had worked slavishly to be ready the Under-20 World Cup in March 2013. Dylan was out for three months and, in November, the cancer returned again. How he was able to finish another intensive course of chemo and fly to Oman for the Under-22 Championships defies medical logic. Dylan played in four games in eight days – two starts and two substitute appearances – but it was when he returned to England in late January that he was informed it had stopped working. He died on 18 April.

In case you’re wondering, the family never went after the doctor who misdiagnosed Dylan. The way they figured it, it wasn’t going to bring back Dylan. Yet they will always wonder what might have happened if the cancer had been caught earlier. “Dylan was robbed of the future he dreamed of as a young boy,” Tracy says. “It robbed Taylor of a brother and it robbed my husband and I of watching our beautiful son grow and fulfil his dreams.”

The foundation will try to heighten awareness of testicular cancer. But more than anything, it will campaign for a change to medical guidelines, whereby anyone who goes to see their doctor with a testicular lump is automatically sent for an ultrasound scan. That way, as Tracy says, it “takes the guessing out of it”. There is the potential here to save lives.

Taylor, 19, another graduate of West Ham’s youth academy, is going to be prominently involved. West Ham have been incredibly supportive and something tells me that if the foundation applies Dylan’s determination and spirit the family will make it work.

His dad, Jim, told a story at the funeral about something Dylan used to ask his team-mates: “Why say the sky is the limit when there are footprints on the moon?”

Fools will rush in where agents fear to trade

The Football Association’s punishments against three agents caught fiddling the paperwork surrounding the transfer of Dale Stephens from Charlton Athletic to Brighton & Hove Albion last year act as a reminder that there will be always be people who want to bend the rules when the sport is swilling with such money. But did you know there is the potential for it to get a whole lot worse?

Starting from 1 April, Fifa is scrapping the existing licensing rules for football agents and in effect allowing anyone to sign up players, initiate transfers and try to make their millions, as long as they fill in an application form from the FA’s website and don’t have the criminal convictions to fail what will be known as the “test of good character and reputation”. That’s about it, bar a small fee, and when there is so much money at stake it is no wonder there are people high up in the sport wondering about what kind of chancers and rogues are going to be attracted.

It’s happening already, judging by some of the stories I have heard from one club about would-be agents lining the pitch to watch under-13s’ games and then waiting outside the changing rooms with gifts for the parents.

Previously, there has been a rule in place that agents cannot sign anyone under the age of 16. That is being scrapped, as long as the agent has consent from a legal guardian, and another leading club confide that barely a day goes by without a parcel arriving for one of their 11-year-olds, usually containing some new boots and an introductory letter.

Don’t be taken in by the popular caricature: the leading football agents are mostly serious professionals, often qualified lawyers and accountants, with expertise when it comes to dealing with the complex rules surrounding transfers.

What we are going to get in the future, in the words of one senior football administrator, is football’s wild west and if the FA is dreading what is to come at least it knows who to thank. It was the FA’s former chairman, Geoff Thompson, who was in charge of the Fifa committee that came up with this.