Mike Rutherford: My son's battle with leukaemia Next he began devoting himself to an even greater passion - music. He insists that he wasn't looking for it. Instead, the music found him. Buying his first cheap but much-loved guitar on Sunset Boulevard, Los Angeles; after-school music lessons; yet more evenings learning, playing and performing at the Mick Jagger Centre; attending his first big concert (Aerosmith live in Miami) - all this and more meant that Marcus was hopelessly hooked on acoustic or electric guitar-based music. By summer 2007, weeks after completing his A-levels, his mother and I drove him to Brighton, where we searched for a little place for him to live while he studied, inevitably, for a music degree in the city with a sea he loved to sail and swim in. Come October 2007, school over, uni beckoning and looking more handsome and physically fit than I've ever seen him, he was playing at a gig with his penniless little rock band when his life and ours changed in sudden and terrifying fashion. With no prior warning (apart from a nasty cough and a few aches and pains) Marcus started to feel terribly ill and almost collapsed onstage... with his beaten-up Fender Telecaster electric guitar still in hand. His fellow band members joked that he'd drunk too much - unlikely since he's always been a notoriously light drinker who enjoys the occasional glass of wine or cider, but nothing heavier. Illegal drugs were out of the question too. He didn't even smoke cigarettes. He was rushed to a nearby hospital - Medway Maritime - and the diagnosis was acute lymphoblastic leukaemia. My wife and I, who both happened to be working away, flew home immediately to his bedside with the aid of a high-speed police car for part of our journey. We found our son in an isolation room. A major problem with his blood, or to be more precise, his blood "factory" at the base of his spine, meant that his body was no longer making enough healthy red blood cells and platelets and his white cells were unable to protect his body from infection. He was covered from head to toe in heavy bruises and somehow looking and feeling much smaller and lighter than normal. His blood count had plummeted, his platelets were dangerously low - thus the rapid deterioration in his physical appearance and general wellbeing. When I asked how and why a fit and active 18 year-old could be so cruelly and suddenly struck down in this fashion we were told that leukaemia discriminates against no one. Yes, the early stages of the disease should have been detected by Marcus's GP when he visited him complaining of severe aches (including headaches) and that awful cough. But only if that GP had sent him for blood tests which might have - although not necessarily - detected that the disease had already started to attack his body. His life was saved that night by the rapid diagnosis of his illness, then by transfusions of the blood and expensive yellow platelets he so desperately needed. He was stabilised, made comfortable, monitored and worked on through the night. And thankfully, he survived it. Some do not. Especially when the disease isn't detected early. Within days he was transferred to University College London Hospital (UCLH) where he lived for the next few months, later opting to be a "shared care"" patient between the two hospitals, one in Kent, the other in the capital. The impact of this sort of unprovoked disease on a youngster who has done nothing to deserve it is unimaginably painful. If I've said "why him, why not me?" once I've said it a million times. How come our prayers went unanswered? Where is our God? How can this searing pain and anguish be inflicted on the person who I love, respect and treasure more than any other on this earth? When a parent is subjected to this level of trauma, about 90 per cent of his or her life becomes devoted to the child who finds her or himself in a scarily dark place. The other 10 per cent is left for far less important matters such as money, work, home, car, or other family members. We effectively abandoned our home because we felt a need to be with Marcus every day and night - either sleeping in the hospital room with him on floors or sofa beds, in neighbouring apartments or hotels, in motorhomes, or cars parked outside. Some nights there is no such thing as "bedtime" for patients and parents. One goes through the night wide awake, usually because of time-consuming blood transfusions, tests and other procedures. You might think that young adults revert to being little children in such difficult and frustrating circumstances. But not Marcus, who, in the nicest way, matured beyond his years and eventually felt to me more like a father (or at least a wise uncle) than a son. Everyone cried. Everyone except Marcus. After more than three relentless years of chemotherapy, blood transfusions and countless other treatments, procedures and clinical trials, he was formally told, in spring last year, that he was finally in remission and no further treatment was necessary. He was allowed to go on holiday abroad for the first time since his diagnosis, so he and his girlfriend, Emily, headed for the sights, smells and healthy diet of north-east Asia... with Bro, Ma and Pa joining him later for at least part of his epic, exotic trip. On his return to the UK in June we could see, and he confirmed, that he was experiencing aches and pains that felt all too familiar. I think he and we knew at this tragic point that the leukaemia had returned. Smart patients instinctively know these things. Then their heartbroken parents look them in the eyes and know too. Apparently clueless, non-specialist weekend doctors (important chunks of the NHS largely grind to a halt on Saturdays and Sundays) suggested that Marcus had picked up a nasty foreign bug. Malaria and various tropical diseases were mentioned. At least we weren't surprised or traumatised when the cancer team gently broke the news to us. Marcus's final hope was a long and expensive bone marrow/stem cell transplant procedure which he received at UCLH last October. Jake was desperate to be the donor, but he wasn't a match for his big brother and that crushed him. However, a young, generous, anonymous male donor from Germany who had registered with the international Anthony Nolan bone marrow register (anthonynolan.org) was a near perfect match. The grateful Rutherford clan consider him one of us and affectionately refer to him a Markus with a K! Marcus's loving and inspirational mum - my wife - had quit her job to be with him 24/7 as his full-time carer. I cut back massively on work commitments too, as did Emily, a recent graduate who has found work. The loving and brilliant CLIC Sargent charity helped out by providing us with home-from-home facilities that at least meant we could be with our brave boy, morning, noon and night. Ultimately, the transplant failed. On January 24 a transplant doctor - not one he or we knew well - walked into his room at UCLH for what should have been a routine, mid-morning meeting, just like the hundreds that had taken place before. In a matter of fact, hauntingly cold and horribly unsympathetic manner she told Marcus that the leukaemia had returned. It was not unlike a tough as nails American judge telling a guilty, murderous prisoner that he's sentenced to death. But the big difference was that Marcus was and still is entirely innocent, and could not look forward to a stay of execution. He was shocked, but remained as calm, dignified and tear-free as ever. His mother and I were utterly devastated. We sat beside our son, hugged him, and asked for the meeting to resume later in the day in a more caring atmosphere. A week later Marcus asked if he could go home to his own bed, his little recording studio, his guitars, his kitchen and his dining table. Normality he called it. After being resident for so many months and years in hospitals - where he sometimes needed drugs and/or injections every hour, 24 hours a day - normal was good. As was home cooking. No more hospital food - please. His loyal and loving professor at UCLH granted him his wish but gently warned that whether in a hospital bed or at home, he could only "dampen down" the leukaemia. His favourite consultant at Medway Maritime agreed that while he would do what he could do to help Marcus defend himself against the enemy, it could only be contained, not killed. Early last month Marcus asked each of his close friends to come to his home for a chat lasting 10-15 minutes. Many left in tears. The Dean of his University popped in and effectively staged Marcus's graduation ceremony in his front room. Important, that. A week later Marcus spoke to grandparents, a solicitor and other important folk he needed to talk to. Then there was the precious day and night in the glorious country hotel with Emily, followed by the Italian feast with me, Mum and brother. Just the four of us. Like the old days. On Saturday, February 18 he gave a party at his Rochester home for old pals, current and former girlfriends, band mates, friends from university, loved ones... On February 24, Marcus, my brave and beautiful son, passed away, aged 22, in his sleep. We - father, mother, girlfriend and brother - were with him. We will always be with him. He will always be with us. Marcus's legacy Even while he was fighting for his life, Marcus was determined to change things for others in a similar position to him. Modest, direct, red tape-free help for young patients is the way he wanted it. That's why he established the MarcusRutherfordFoundation.com and Young Adult Cancer Trust in the weeks before he passed away. As a result, a handful of NHS patients without access to televisions, DVDs, phones and internet are now enjoying such things. He spent some of his own money on doing that for them. We talked about writing a book together. And he loved the idea of seeing his byline in a newspaper for the first time. So here it is, son. By Marcus Rutherford I think it's important that I tell people what's going on with my illness as many people don't know, and I'd like for them to. A few weeks ago, while still living at University College London Hospital, I had a routine, post-bone marrow/stem cell transplant test and found out that I'd relapsed. My transplant failed. The doctors said I did everything right, and for a while things looked like they were going really well. Everything suggested that the transplant was going to work, but unexpectedly the new donor cells were unable to fight off the leukaemia. There are now no longer any curative treatment options for doctors to give me. The transplant was the strongest option for a cure, but the leukaemia is too strong. The success of the transplant was never a sure thing, so it hasn't come as a complete shock. But the news has still been devastating. My medical teams at UCLH and Medway Maritime will continue to treat me with a very light chemo to try and keep the leukaemia suppressed for as long as possible, but eventually it won't be controllable. Doctors aren't really able to give me a time frame as to when this will be, as it's extremely unpredictable. My professor at UCLH and one of his senior colleagues at the neighbouring Royal Free Hospital in Hampstead are looking into German medical trials which have had some successful results in prolonging time for terminal patients with my type of leukaemia. This particular trial will be coming to the UK at some point soon, and it's something I'm going to remain hopeful about. After living on the transplant floor (T13) for the summer and autumn of 2011 and most of this winter, UCLH has sent me home so I can be with family, girlfriend and friends. I'm going into my local hospital every day for blood top-ups and blood products, plus other drugs to keep me as healthy as can be. Thankfully, I've been feeling quite well and just enjoying being home after so long in hospital. If you're one of my friends or part of my family and you're reading the above and finding this out for the first time, I'd always like to talk. I wish I could have let people know in a different way, but at least I can reach as many people as possible this way. I'm really doing fine, and feel like I'm OK with everything... as long as I've got everyone I want close by. Mike and Marcus's fees for these articles will be donated to the Marcus Rutherford Foundation's Young Adult Cancer Trust The Marcus Rutherford Foundation and his Young Adult Cancer Trust were in the planning for months, and have been formally established in recent weeks. The trust and foundation have already helped a handful of patients leaving their late teens and entering their twenties when, sadly, some child and teenage charities effectively turn their back on them. To find out more, go to: marcusrutherford foundation.com