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- Herausgeber: Splendid Publications Limited
- Kategorie: Lebensstil
- Sprache: Englisch
- Veröffentlichungsjahr: 2015
Daniel Thomas was 17 when he was diagnosed with rare bone cancer. His chances of survival were slim. But his father David refused to give up hope and did everything in his power to find his son a cure. Sadly, Daniel didn't survive but this account of the journey is testament to a parent's unconditional love and mankind's desperate need for hope.
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Contents
To Daniel, Thank you
Foreword by Debbie Binner
“A constant source of comfort to me, and sometimes a partner in crime, as we battled the incessant obstacles that blocked our dying children from getting the best possible treatment at the worst possible time.”
Words I wrote in my journal in January 2013 about my friend, a fellow ‘cancer parent’ and the author of this wonderful book: David Thomas.
Drenched in the bitterest of grief after the death of his only child Daniel, David found the compassion and grace to support me as my eighteen year-old daughter Chloë lay dying of exactly the same primary bone cancer: Ewing’s sarcoma.
Chloë died on February 28th 2013 - and our family’s heart and soul was crushed. Forever.
A lesser person would have run a mile from such similar unfolding misery. But David stayed – just as I knew he would. I’d already witnessed the character of the man. His courage and steadfast spirit as he battled to save, or at the very least prolong, his beloved son’s life. He waged a magnificent battle against dismal odds. He left no stone unturned. Not one!
I knew Daniel only through David. I saw him just once, at the hospital. I spotted him instantly as he looked so like David. Those pale blue eyes. Such kind eyes. There he was surrounded by the horrors of the illness: drips, monitors and a wheelchair. So at odds with his youth and beauty. So wrong on many levels.
I prefer my own mental image. Burnished by an Oxford sun, he is sauntering around his University lawns. Surrounded by the “oxygen” of knowledge/education, he is bursting with youthful energy and ambition as he ponders a career in law, government, development….. such endless possibilities for this kind of young man. The thwarted possibilities. So utterly heart-breaking.
David was so proud of Daniel and rightly so. But I suspect that Daniel was equally proud of his Dad. With painstaking precision, born of a lawyer’s mind, he dissected every piece of research and evidence for that elusive clue. With his quiet charm and a deeply compassionate soul, he searched the world for somebody to save Daniel.
Many tried but they were destined to fail. While some childhood cancers, such as leukaemia, have seen spectacular breakthroughs in survival (up from 5% to 95% in the past forty years), the picture is way more bleak for many other types. In Ewing’s, the drugs used are forty-plus years old and the protocols little changed in twenty years. Doctors sit back helplessly, use “rusty old tools” and watch as the “failed experiment” is repeated time and again. No wonder that survival from Ewing’s has hardy shifted in the last few decades.
“Give us hope. Give us new drugs!” we desperate parents scream and nobody listens.
The problem is multi-faceted and, to be fair, complicated to solve. Many try, but the pace is arduous as change agents try to drive new ideas through a deeply resistant conservative culture. A root problem is that the pharmaceutical industry doesn’t want to invest in children and young people as they don’t represent ROI (return on investment). European regulation stifles innovation further through excessive bureaucracy and the medical world seems unable to organise an effective challenge.
In the meantime our children carry on dying and we parents are tortured by the fact that more could have been – should have been – done.
I roar in anger as I think of Daniel. As I think of Chloë. As I think of all those other young lives lost.
This book is a beautiful legacy to an amazing young man who should have been given a better chance to live. It is also a critical piece of work in raising the profile of childhood and teen cancer and the urgent need for a better system.
Debbie Binner Teenage Cancer policy advocatewww.facebook.com/createforchloewww.blogspot.achildofmine
Preface
This is the book I thought I would never write. It’s about my son’s cancer journey. His journey was inevitably my journey too because I traversed it every step of the way along with Petra, Daniel’s mother.
I thought about writing a book early on in the journey. I was learning so much, in so many different ways and wanted to share the lessons. I’m a firm believer that one should learn from life’s harsh lessons and, where possible, apply them to make the world just a little bit better. But I didn’t think I’d be able to write the book unless Daniel survived and so bad was his cancer that it was extremely unlikely that he would. In any event, when would one know that he had beaten the cancer? His cancer, a rare bone cancer called Ewing’s sarcoma, has been known to come back seventeen years after first appearing.
Although I didn’t discuss this with Daniel, my idea was to do a joint book, each of us writing chapters about the stages of the journey. I suspect our perspectives would in some ways have been quite different: the same events seen through different eyes. I’m not, in fact, sure that Daniel would have wanted to take part in such an enterprise. His coping strategy was to think about cancer as little as possible. That’s not uncommon. One teenager with Ewing’s in the US didn’t want people to ask how he was feeling, because that would require him to think about his illness.
Sadly, the question of a joint book became academic because Daniel didn’t survive. But when he died, I realised quickly that I should still write a book. I’ve thought long and hard about why. It was never going to be easy to write, so the reasons needed to be powerful. It has helped me to write it, certainly. Not so much because of catharsis of painful emotion but because it has enabled me to retain Daniel close to my heart, through revisiting so much that we visited together. Doron Weber, an American writer, felt compelled to tell the story of his son Damon, who died following a heart transplant at the age of sixteen. In Immortal Bird, Doron wrote: ‘It was the only place I had to go for myself. I could not abide living in a Damon-less world.’ In the same way, I cannot abide to live in a Daniel-less world. Edward Hirsch, the American poet, who recently published a seventy-page elegiac to his son Gabriel (who died just before Daniel and at the same age), wanted the reader to get to know his son ‘through the burden of my poem.’ I want someone to pick up this book in a hundred years and say, of Daniel: ‘Wow, he sounds like someone worth knowing.’ Unusually for someone of his generation, Daniel wasn’t on Facebook, so there’s no digital memory.
Parental bias acknowledged, Daniel was an amazing individual and inspired many people during his illness. I only really realised this after he died and I doubt he ever realised it. Daniel wasn’t inspirational in a demonstrative way, but by example. He just got on with his life, in the face of terrible physical and psychological adversity and achieved some impressive things. More importantly, he kept the purity of his wonderful character. Cancer destroyed his body; it failed miserably to make even a dent on his personality.
I didn’t know until he died that Rafael, the Nicaraguan nephew of my friend Maria, had vowed to turn his life around from drugs and teenage delinquency and had gained a place at university, because of Daniel’s example. My friend Caterina periodically re-reads my eulogy at Daniel’s funeral for inspiration. A woman in the US, a victim of sex trafficking, told me that Daniel’s story brought her from the brink of suicide and has inspired many students she knows going through a difficult time. One of Daniel’s university tutors, whenever he feels down or demotivated, thinks of all that Daniel went through, uncomplainingly, and is revived. Kieran, then a primary teacher in the deprived East End and a sometime tennis partner, was inspired by Daniel’s funeral to inspire his students.
Toru Kaneko, one of the countless doctors around the world who helped me during the journey, wrote: ‘The eulogy has to be drummed into the global consciousness forever.’ The comment was extravagant and perhaps something got lost in translation, but a number of other doctors have said that Daniel’s story has inspired them too. I want his story to inspire others going through a difficult time, to encourage them when the outlook is at its darkest and the suffering at its most unbearable. Because of his story, Daniel was chosen to carry the Olympic Torch, though sadly did not get the chance to do so.
And yes, I want to share the lessons I learnt. Many people have faiths of various types and of varying strength, but none of us knows for certain why we’re here or where we’re going, just to the grave or somewhere beyond. The phrase ‘We are all in this together’ has attained a certain flippancy as a catchphrase about austerity measures by the UK Coalition Government. But life: we are all indisputably in it together and it can be a frightening and lonely place. As well as helping and supporting each other, we should be prepared to level constructive criticism where merited. That’s how things improve. Criticism includes self-criticism: plenty of that was deserved during this journey. It would have been easy to write a book presenting myself as a father heroically fighting for his son, taking on the medical establishment, handling every situation brilliantly, articulate and reasoned in every discussion, making correct decisions every time. But if I had succumbed to such self-delusion, I wouldn’t have learnt any lessons for self-improvement and no one would have been convinced anyway. Memoirists, biographers generally, have a special responsibility to write history as objectively as possible and not as an exercise in self-justification.
Criticism of others, however deserved I may think it, has to be handled sensitively. I have a platform through this book; those criticised don’t have the same platform. We only ever see a snapshot of another person, even someone we are close to. We may not get to read their back story. We may not know what else is happening in their lives. We’re not privy to most of their thoughts. We cannot fully understand what pressures they might be under. We only get a glimpse into their personalities, their emotional make-up. We rarely get to know about their dreams. Even with the thing which causes two lives to cross, we will not be working to the identical evidential framework and may have objectives which do not wholly coincide if they coincide at all.
Human beings inevitably make judgements about others all the time, even if we try not to be judgemental. That is part of the human condition. But, however clear something may appear to us, we should always remind ourselves that we don’t have the full picture and that, if we did, our criticism, or praise, might be tempered. That doesn’t mean that our judgements are inevitably wrong. With the intuition which experience and reflection brings, we might, with luck, be pretty close to the mark more often than not. The trick is to try to put ourselves in the other person’s shoes, while realising that they may not be our size.
So the criticisms which I level in the book may not be fair, or only partly fair. Those criticised may have a different take on things and may be surprised at the criticisms. I have tried to be scrupulously fair but even notions of fairness can be as much subjective as objective.
Even with these caveats, I have changed the names of certain individuals to protect their feelings and their reputations. That includes Daniel’s principal doctor. I have changed his name with regret, because it means that he does not get the benefit of the considerable praise I give. I have also agreed to requests for name changes by certain key individuals for reasons of privacy, with no photographs.
Privacy
I have also struggled with issues around Daniel’s privacy. Daniel was quite a private person, especially during the cancer years. To be of any interest or value, this book has to talk about personal matters. Not everything: I have self-censored at times. But to convey the range and depth of emotion, one has to discuss the things which caused the emotion, and to illustrate by example. Would Daniel have wanted me to delve so deep?
I fully acknowledge that this may be self-pleading, but this is how I have resolved the dilemma in favour of telling the story. There are two possibilities: either death is death and Daniel is no more or there is life after death and Daniel, hopefully, is partaking in it. In the first scenario, I am not sure that it makes much sense to talk about privacy. Some philosophers argue that we owe duties to the dead, even if the person isn’t aware of harm caused, and not simply to those they leave behind, but I’m not convinced.
But what if Daniel does still exist, as I fervently hope? My assumption – and I accept it’s a sizeable leap of faith – is that worldly concepts of privacy do not have much resonance where Daniel is now.
There is, perhaps, a distinction between privacy going to the heart of personal identity and relationships, on the one hand, and the things a person prefers not to share at the time, for whatever reason, but which are pretty innocuous, on the other. As an example of the former, had Daniel said to me ‘Dad, I’m gay but I don’t want people to know’, I would have respected his wish, in death as in life. I hope that now that the story has, sadly, taken a fundamental twist, Daniel is more relaxed about sharing innocuous details, especially if it helps others. I remain uneasy and can identify with the author James Lasdun, who in his recent memoir Give Me Everything You Have was troubled about revealing information about his deceased father, a famous architect: ‘Sometimes the urge to write these very private things is stronger than the doubts about whether they are worth writing.’ All I can do is ask earnestly for Daniel’s forgiveness if I have wrongly given in to the urge to tell the world about him.
It’s not only Daniel’s privacy which is at stake. I share Daniel’s instinct for privacy but in writing the book I have to reveal more about myself than I normally would. That doesn’t sit comfortably with me, though in truth when one has lost a child such concerns can feel trivial. As importantly, it may not feel comfortable for people who know me. Their view of me may change, perhaps for the better, perhaps for the worse, but it will change as they learn more. However, it’s my choice to go public about private emotions and so the situation is not comparable to Daniel’s privacy.
There is one final aspect of privacy. Daniel had more than his fair share of talents. Like the rest of us, he loved praise. But he was also exceptionally modest and didn’t like us mentioning his achievements to outsiders. The 18th Century theologian William Law wrote: ‘You can have no greater sign of confirmed pride than when you think you are humble enough.’ Daniel never fell into that trap; his modesty was genuine. As he grew up, I would suggest that it was better to let other people do one’s boasting, advice with its provenance in the Book of Proverbs. Daniel took the advice to heart. Not surprisingly, this book contains much praise of him. If I got this wrong as well, all I can do is apologise to him again.
I have on occasion breached my own injunction about modesty, for this reason. I found Daniel’s cancer journey incredibly difficult, and the difficulty continues. I frequently languished in the pit of despair. People would often say positive things about how I was dealing with the situation, about the knowledge I picked up, about my relationship with Daniel. The praise came from family and friends and from medical professionals. In one sense, it was just people being nice but it really mattered, especially during the many times when I was struggling. So I have included some examples; it would have created an incomplete picture to have excluded them under a self-promulgated modesty diktat.
Sometimes the unease is not because of what is in the book but because of what I have excluded. If a story is not to be interminable and dreary, inevitably one has to leave out things. Brahms once said: ‘It’s not hard to compose, but what is fabulously hard is leaving the superfluous notes under the table.’ In a strange way, it feels disloyal to Daniel to leave under the table episodes of his suffering, as though they do not matter. But I’m sure he understands.
Truth
Truth is many-pointed, noted Mahavira, Jain contemporary of the Buddha.
This is the story of Daniel’s cancer journey as I saw it. It’s my truth; it’s not the truth. Nevertheless, I have tried to differentiate between facts and gloss. Accuracy matters and the context in which facts are presented matters so that people are not misled. I remember as a law student, a barrister proudly relating that, although what he had told a judge was literally true, he intended the judge to gain a wrong impression, favourable to his client, from the way he presented the facts. I thought then and think now, that that was as bad as lying; I’m sure the Bar Council would agree.
It’s sometimes argued that literal truth is not mandatory; what matters is that the writer conveys the ‘essence’ of a situation. Ryszard Kapuscinski, the Polish journalist who wrote The Other, an eloquent plea for understanding and empathy across different societies, was caught out being economical with the truth, even inventing encounters in Africa. He retorted: ‘You don’t understand a thing. I’m not writing so the details add up – the point is the essence of the matter.’ Autobiography of a Face is the story of Lucy Grealy’s experience of Ewing’s sarcoma, the cancer Daniel had, and the terrible facial disfigurement it caused. At a reading of her book, she was asked whether she was troubled about misremembering details from long ago. Her reply: ‘I didn’t remember it. I wrote it. I’m a writer.’
Well, I don’t agree. History consists of facts (‘one damn thing after another’, as Henry Ford is said to have remarked). Interpretation of those facts, expressions of opinion, philosophical musing about what the facts mean, all have an important place but should be clearly differentiated from the facts themselves where a book is written as history. So I have tried to present the facts of this story as accurately as possible, and to differentiate between fact and opinion. My expressions of opinion are, I hope, rooted in fact.
Even so, I cannot claim that my account is the only account. In selecting what to include and what to exclude, I inevitably make judgements about significance. In that sense, I am susceptible to what psychologists call confirmation bias – the choosing of facts which support the case one wishes to make. Politicians do this all the time, which is why two protagonists in a debate may seem to be arguing about different issues: they choose different facts to emphasise. I have long thought that politics is the rationalisation of instinct: one reacts instinctively to a given issue and then hones in on the facts which support the instinct.
In any event, the memory plays tricks, or we may simply get things wrong. We mishear, misconstrue, misinterpret all the time; several studies have shown, with the aid of video evidence, that witnesses to a crime or an accident who are adamant about what happened are often simply wrong. Although I documented just about everything, because of the mass of technical information, I may on occasion have misunderstood something.
There is one aspect of recounting accurately which has particularly troubled me. That is the use of dialogue. All memoirists and autobiographers use dialogue. And yet it’s almost always a deception. Few of us could recall verbatim a conversation which took place two minutes ago, let alone months or years. I understand why the technique is used: it brings a story to life. And yet the writer knows that a conversation didn’t proceed in exactly the way claimed; perhaps it’s just the loosest of approximations. And there is a real temptation for the writer to present his contribution as articulate and reasonable and an antagonist’s as fumbling and unreasonable, and to substitute the thing he wished he had said for what he actually said. As Wordsworth wrote in The Prelude:
‘I cannot say what portion is in truth
The naked recollection of that time
And what may rather have been called to life
By after-mediation’
David Copperfield apologised to his readers in case he had misremembered dialogue – and he was only a fictional character, albeit in part Dickens’ alter ego. Joachim Fest, writing about his upbringing in Nazi Germany, drew a distinction in this regard between historian and memoirist – he was both – but I am not sure that washes.
Yet for all my misgivings, I have sometimes succumbed to the temptation. On occasion, I have been able to remember the precise words used - although not, of course, whole conversations - because they stuck for some reason. That includes amusing things that Daniel, like every child given the chance to flourish, came out with as a young child. I am glad I kept a note of them (the plan was to embarrass him at his wedding). Otherwise, I have used direct quotes only where the exact words or the precise drift of a conversation are not important.
I am writing this book in the three years since Daniel died. Were I to wait until, say, five or ten years – as some memoirists of loss do – the facts would be the same but my perspective might be different. Nothing remains constant in life. The Greek philosopher Heraclitus famously asserted that one cannot step into the same river twice: the river is forever changing. Maybe it would have been wiser to let the river flow some more. But then I would have lost the immediacy of the story and some of the rawness of the emotion. So, for good or ill, this is my perspective at this stage of my journey with grief.
There is one final aspect of accuracy which I should mention. The story contains scientific facts and hypotheses. I have checked everything as carefully as I can. However, I am not a scientist and I may have got things wrong. In a sense, that would not matter, because it would reflect the fact that I inevitably got things wrong during Daniel’s illness, as I tried to grapple with incredibly complicated science which no doctor understands completely. So my apology for mistakes is a qualified one. I should note, in addition, that research has inevitably moved on since Daniel died; I have not kept pace with it.
Perhaps with all my introspection and angst about the justification for the book, and about presenting fairly and accurately, it’s best to turn to an outsider. In an article in the New York Times in June 2010, Dr Abigail Zuger wrote:
‘After years spent in the company of the sick, I know one thing for sure: there is no story out there that is not a great story. Every single one contains enough pathos, courage, comedy and surprise to power it right to the top of the charts.’
This sums up what I feel beautifully. Narrative medicine, to which Dr Zuger refers, teaches doctors to listen intently to their patients’ stories, to get a glimpse into the real person (I became in the course of Daniel’s cancer journey a confirmed and passionate believer in the importance of the human side of medicine).
Daniel’s is a story that needs to be told, like all the other stories.
Daniel and I did once write a short story together, when he was seven. He was the hero, inevitably, winning a downhill skiing world championship into which he had stumbled. I used to joke with him in later years that a sentence we came up with – ‘He swayed and swerved, swooshed and swaggered’ – was the greatest alliteration in literature, involving not just the first but also the second letter of each word (is there a term for that?) and with nouns masquerading as verbs and a dash of onomatopoeia thrown in for good measure.
Until his cancer, life must have seemed a bit like a downhill run for Daniel. The last few years of his life, in stark contrast, were more a trudge up the mountain, until the journey became impossibly vertical and the air increasingly rarefied, before it finally vanished. But the metaphor, like many metaphors, only captures part of the story. The downhill section contained its own major obstacles and the upward climb many extraordinary moments of beauty and accomplishment, with the vista broadened and deepened by new perspective.
This is the account of the uphill segment. There is no onomatopoeic alliteration, but I hope that Daniel’s story is rich enough not to require extravagant literary imagery.
Diagnosis
Mum:I’m going to count to ten and then I want you to go in the bath. One, two, three …
Daniel (aged two):I’m not going in, Mummy. Watch my lips
Some dates are etched in the memory for evermore - 12th April 2006 is such a date. It marked the beginning of the cancer journey with my son Daniel. Another such date is 3rd October 2011. It marked the end of that journey, not in the way we wanted or prayed or at times dared to hope. That was the day when Daniel died, of cancer, three days short of his twenty-third birthday. My life is now divided into three distinct periods: the innocent years before April 2006, the years spanning the cancer journey and the period since Daniel died.
The 3rd October will now always be a horrible day for us, as for others. Among those who died on that date are St Francis of Assisi and Ronnie Barker (Daniel was a big fan of Ronnie Barker; his views about St Francis are unknown). For some, 3rd October will be a happy day, marking the birth of a child or a wedding anniversary or the all-clear on their own cancer journey. Every year the diarist Samuel Pepys celebrated 26th March, the anniversary of the removal of his kidney stones, a dangerous operation in his day. By contrast, for the parents of Bradley, a young man in the US with the same cancer as Daniel, 3rd September will be especially difficult: it was the day, in 2010, when Bradley died, just a few hours into his eighteenth birthday.
Such are the vagaries of fate. It’s slightly unnerving to think that I had lived all these years without appreciating what a black day 3rd October would become for the many people who love Daniel. I did sometimes wonder which date, so innocent at the time, would probably come to hold such significance. Tess of the d’Urbervilles, Hardy’s eponymous heroine, put it more eloquently when considering her mortality:
‘She suddenly thought one afternoon, when looking in the glass at her fairness, that there was yet another date, of greater importance to her than [birthdays and so forth]; that of her own death, when all these charms would have disappeared; a day which lay sly and unseen among all the other days of the year, giving no sign or sound when she annually passed over it; but not the less surely there. When was it?’
In truth, we probably make too much of dates. After all, a day is simply when the Earth is in particular juxtaposition to the sun. Because Daniel died early in the morning, it was actually 2nd October for much of the western hemisphere. But I suppose we need dates to give some structure, some security to our otherwise chaotic lives.
I kept a journal for most of Daniel’s illness. It’s poignant for me now to revisit the other 3rd Octobers in my journal.
There is no entry for 3rd October 2006 but I recorded elsewhere that I spoke to a leading complementary therapy doctor. On 3rd October 2007, Daniel went to school and his pelvic pain had reduced. We were considering additional radiotherapy following my trip to Germany for a second opinion. Petra, Daniel’s mum, had read some depressing article about bone metastases (cancer spread), which supported the argument for extra radiotherapy.
On 3rd October 2008, the journal records that Daniel played table-tennis with his sister Sasha. I was nervously awaiting some results from Barcelona following a diagnostic operation there and sought to reassure him about the delay (he told me he was not concerned and, typically, didn’t want to know the results). There was discussion at a conference in Berlin about how doctors should break bad news. Nikki, a teenager with Ewing’s sarcoma, Daniel’s cancer, was in terrible and worsening pain, as a result of radiotherapy.
On 3rd October 2009 - just two years to go now - there was, it seems, discussion with Petra about prognosis. She wondered what cure rate Daniel’s consultant achieved. Daniel was moving really well and wanted to try out for his college tennis team. I read about an eleven year-old boy patient who was fundraising for research after noticing that he was surrounded by pink ribbons for breast cancer but nothing for Ewing’s. I did a telephone session as a Samaritan, a long one. A teenager in the US with another type of bone cancer was going to Mexico to try Coley’s toxins, an alternative treatment I was particularly interested in.
The 3rd October 2010 had a long entry. This was two days after we were told that the chemotherapy Daniel had begun after a second serious relapse was not working. I met my sister Sian in Reading to choose presents for Daniel’s birthday three days hence and pulled out of a Samaritan session that evening because my emotions were in turmoil. There is a lot of information about symptoms, including head pain: Daniel was anxious the cancer might have spread to his brain. My internet search was not reassuring but I sought to reassure him nevertheless. Daniel’s cousin JJ, then a final year medical student, tried to reassure me in turn. Cancer spreading to his brain was always Daniel’s greatest fear.
Despite the symptoms, he wanted to play table-tennis before going to A&E at his hospital in London. He insisted I first made wheatgrass juice - part of his diet. On the way we listened to coverage of the Ryder Cup from Wales. Thorough neurological tests proved negative but Daniel was nevertheless admitted. A kind nurse called Natasha remembered us from eight months earlier, when I had slept on the floor next to Daniel – she even remembered the bed! This time I stayed with my friends Djuna and Chris, thankfully oblivious to the fact that we had now entered the last year of Daniel’s life.
So many memories, all from one date, and in many ways a microcosm of the whole journey. And then the 3rd October that really mattered. The entry for 3rd October 2011, my final entry, simply reads: ‘My precious Daniel died at 00.50, peacefully in his sleep, surrounded by the people he loves the most. Certified a couple of hours later by Dr Zarif of Thamesdoc.’
MRI
But October 2011 and what has followed can wait. So much happened in the previous five and a half years, so much that was good and positive and inspirational, as well, of course, as much that was difficult and sad and wearing on the soul. We wish, naturally, that the gap between diagnosis and death could have been longer, indeed that the natural order of parent dying before child would have been maintained, but if the oft-repeated cliché that a life should be measured by its richness not its length holds true – and it does – it’s right to celebrate and learn from those amazing years.
Petra, Daniel’s mother, and I had separated before he was two. He lived mainly with her but I had always played a big part in his upbringing and lived just a mile away. Daniel’s problems had started a few months earlier. We were playing tennis just before Christmas 2005: he was as competitive, and as much fun to play with, as ever. Suddenly he pulled up. There was a problem with his left leg, but he could not explain what. I jokingly said that I would move him around the court, to take advantage. We played on.
A few months earlier, he had suffered an injury in the same general area playing hockey. He had physiotherapy and the problem resolved, or so we thought.
Tennis was always Daniel’s first love.
Another hockey injury early in January and, on the advice of the physio, Petra took him to A&E at our local hospital, St Peter’s in Chertsey, Surrey. They took an x-ray, diagnosed a haematoma (blood clot) resulting from sporting trauma and said it would improve over time. It didn’t. A swelling developed on his left hip and got bigger and bigger. On successive visits to the hospital, the diagnosis of haematoma was confirmed. But the pain got worse and so did Daniel’s walking. He developed a highly pronounced limp, indeed he had to twist his whole body to get from A to B. It looked awful. In February 2006, Daniel, obviously popular as he was cheered on by his friends, struggled on crutches onto the stage at his old school to collect some prizes. At the same ceremony, the parents of a teenager who had died of cystic fibrosis a few years earlier gave out an annual prize. I wondered, barely comprehending, what it must be like for them losing a child, and marvelled at how they kept it together. But I didn’t make the connection.
Eventually, Petra took Daniel to his GP, Paul Carty, who strongly advised an MRI scan, privately if necessary. I took Daniel for the MRI, in the Runnymede Hospital, a private institution attached to St Peter’s, on Monday 10th April 2006. Petra had health insurance. I knew nothing then about MRIs, or any other scan, but it all seemed pretty routine. Two days later, Daniel and I were both lying on his bed in my house, reading. We were due to get the MRI result later that day. He was reading 1984 by George Orwell and, as always, was firing all sorts of questions at me. He had been really inquisitive since he could talk.
I was reading In True Blood by Truman Capote, a true story about the depravity and violence to which human beings can descend, in such contrast to this gentle soul who was sharing my reading time and who would literally not hurt a fly. I remember wondering whether I would look back on this reading session with nostalgia, as the calm before the storm. I was developing a foreboding that there might be something seriously wrong, though I still thought that the biggest decision we might have to take after the doctor’s appointment was whether Daniel would have to forego his AS levels in a couple of months because of the need to operate.
We met Petra at the hospital. The orthopaedic consultant, Mr Sinnerton, immediately told us that the MRI showed up something serious, probably cancer. Daniel was in the room. We were completely thrown. Mr Sinnerton, wisely I think, suggested that it might be better if Daniel waited a few minutes in the waiting-room, even though he was of age in medical capacity terms.
Mr Sinnerton made it clear to me and Petra that this was indeed serious. The MRI report, he said, referred to a huge swelling on Daniel’s left hip, or maybe he used the word ‘pelvis’. I knew instinctively that radiologists didn’t throw words like ‘huge’ around without good reason. Petra and I never had the chance of getting used to the fact that Daniel ‘just’ had cancer – from the outset we were always dealing with an extremely serious cancer. Life-decimating rather than mere life-threatening or even life-limiting.
I asked Mr Sinnerton why the St Peter’s doctors had not ordered an MRI in January. ‘I can’t explain it’, was his frank reply. He used to work in the department. As shoulders, not hips, were his thing, he suggested we urgently contact an orthopaedic surgeon with the appropriate expertise. He gave us three names. I don’t remember him using the term ‘Ewing’s sarcoma’ but he must have done, because I googled it later that evening.
I do remember breaking down and Mr Sinnerton saying to Petra and me, a little insensitively I thought, that one of us was going to have to be strong for Daniel. He seemed uncomfortable faced with a display of emotion. Some doctors are.
When we left the room, Daniel could see that we had been crying, but seemed ok. This was the first sign of his amazing capacity to cope with bad news. I suggested we went for a coffee. Although it was by now after 6pm, I tried to call the numbers which Mr Sinnerton had given us, to no avail. There was an unspoken, almost symbolic handing over of the main responsibility for dealing with doctors from Petra to me. She had always taken the lead with regard to Daniel’s health and done it well, but she seemed to recognise that we now needed to be more pushy and that I was better suited to that task.
Petra didn’t want to be alone that night – she had tragically lost Mike, her second husband, in a skiing accident in 1999 – and so decided she would travel to her family in Bridgend, south Wales, with her two daughters, Sasha and Florence. Daniel stayed with her until she was ready to leave. I wanted some space to start researching the internet and speak to family. I didn’t want to worry my mum, just a few weeks shy of her eightieth birthday, until we knew more. Mum was a widow of seventeen years and just about the most compassionate person I have known. Indeed, she is compassionate in a literal sense: the Latin root of the word means ‘suffering with’. Hence my desire to protect her.
Early research
I then rang my good friends Norbert and Michaele in Germany. Norbert is a knowledgeable scientist and I wanted to talk to someone with scientific insight. The phone was answered by their son Tobias, then only twenty but a mature twenty. I broke down once more. They had friends visiting but Norbert promised to google immediately they went. He sent an email in the early hours, as ever putting as positive a take on things as the evidence would allow.
So, my research had started, within two hours of diagnosis. There was to be a cruel symmetry to this.
I learnt quickly that sarcomas are cancers of connective tissues – bone, cartilage, muscle. They make up around 1 per cent of all cancers. Most cases of Ewing’s are in the bone, though some are in the soft tissue. The cancer is characterised by abnormal positioning (translocation) of particular chromosomes within cells. In that sense it’s congenital. It almost always strikes during the first two decades of life.
After my telephone calls I went back to Petra’s to collect Daniel. ‘I am absolutely determined to get Daniel through this’, I said. ‘I will sell the house to finance treatment if necessary’, she replied. We both knew there was bravado in what we said – how could we expect, like a couple of latter-day Canutes, to stem the tide of a serious cancer? In truth, it was a tsunami of malignancy we were facing. But it was always important to give each other hope, as much as giving it to Daniel. We had to find ways of coping too.
I had to be strong for Daniel, as Mr Sinnerton had said but inside I was churning. I slept only fitfully and was up early. I knew I was facing the likelihood of losing my precious son. He had such a wonderful personality: funny, self-deprecating. He was seventeen but in some ways so much younger. Daniel’s innocence, his trusting nature, had always been part of his charm. He still believed in Father Christmas when he was twelve. That sense of wonder had never left him: Petra noticed it when she took him to Times Square in New York well into his teens. He embraced all that life had to offer. He was ambitious, but would not, I think, trample over others to achieve his goals. As a young child, he had simply been delightful, so easy and such good company, a real character and laughing readily. Later he donned the mien of teenage grumpiness only rarely.
That Thursday morning in April 2006 I had to put comforting memories to one side. I had some telephone calls to make. We knew we had to get to see a specialist doctor quickly. This was complicated by the next day being Good Friday. Hospitals would shut down for out-patients for the long weekend.
Daniel, aged seven, ‘interviewed’ by Peter White at the BBC. My favourite photograph of him.
It took several calls but I eventually got through to Tim Briggs’ private secretary. Tim is an orthopaedic surgeon at the Royal National Orthopaedic Hospital in Stanmore, just outside London. I puzzled why Mr Sinnerton had given us the names of orthopaedic surgeons – surely, we needed an oncologist, a cancer specialist? It eventually made sense – Tim and the other doctors specialise in operating on bone cancers. Even so, it probably would have been better had we gone straight to an oncologist. Janet said we should come to see him the next day – Tim was operating on Good Friday.
I made the calls on my mobile from outside the house because I didn’t want Daniel to hear the urgency I knew I had to express. Incredibly, he was working, studying the Roman poet Horace for his Latin AS. This was the second early indication of his remarkable capacity to block out bad things and just get on with his life. Unfortunately for me, he wanted my help in studying Horace’s Odes. On this morning, there was nothing I felt less like doing. I felt physically and metaphorically sick to the stomach. But ever since he was a little boy, imploring me to allow him to do something ‘for the very last time, Daddy’, I was hopeless at resisting his pleas. I hated disappointing him and he could find my weak spot with unerring accuracy. So we did some Horace.
I had reason to escape as I needed to pick up the MRI results from Mr Sinnerton. His secretary gave me a letter for Daniel’s GP, Dr Carty. The envelope was open so I read the letter. I will never forget one sentence: ‘This is probably extremely bad news for this young man.’
I asked to see Dr Carty, still in a state of shock but looking for some reassurance. He was kind but candid about his own lack of expertise with sarcomas. Ewing’s sarcoma is one of around fifty subtypes of sarcoma. I later read that GPs might only see one sarcoma in their career. There are only some thirty new cases of Ewing’s in the UK every year. So Dr Carty was right to defer to the experts.
I had some emails to write, to friends and work contacts. I guess in part I wanted support. I also told various people at the RSPCA, where I was vice-chair. I knew that I would have to give up voluntary work and perhaps paid work for the foreseeable future. My emails were emotional - probably a surprise to some people, who I suspect regarded me as quite self-contained and perhaps psychologically strong. I saw myself as an emotional person who didn’t usually show his emotions; determined but not strong. But in relation to Daniel’s illness, I was open about my emotions. It was as if my love for him and my worry about him transcended the boundaries I normally set. Some may have found it difficult to make the same adjustment and I could understand that.
I had another telephone call to make. I had recently started a relationship with Gill, literally just a few weeks earlier. As luck would have it, she had just left to spend a year travelling. Gill had met Daniel and, as was usually the case, immediately took to him. He had a winning way about him and kind eyes. I think people liked his natural modesty and the fact that when he got to know you a bit, he took a real interest in everything you did.
I had taken Gill to Heathrow just a week earlier and she had given me an emergency number for her first destination, a conservation project in Madagascar. After checking with her mother that I should make the call, I rang the number but heard nothing.
That evening, my sister Sian came over. As she left, I said: ‘I cannot bear to think of life without Daniel.’ I realised from the outset that my fight to help Daniel was not just about him. Yes I would do absolutely anything for him and would have given my life for him at the drop of a hat. There is nothing heroic or unusual in that: one hears many cancer parents say the same thing. I would gladly have made a Faustian pact under which Daniel got better but I would not be allowed to see him again. If Daniel had decided to make his life in some remote Pacific island, without access to the internet or Skype, I could have handled that if I knew he was well and happy. But for all this apparent altruism I also acknowledged my desire to protect myself from the coruscating pain of losing Daniel. Avoiding that was motivation enough to dedicate my life to helping him.
Diagnosis confirmed
In April 2006 there were more immediate things to consider. The appointment with Tim Briggs was at 9am. I again slept badly but was encouraged by an email from Kristin, a friend in Oslo, relating the story of someone with cancer who had taken a mushroom supplement called Agaricus blazei, from the Amazonian rainforest, and had done well. This was my first encounter with alternative or complementary remedies for Daniel. I knew even then that one had to treat such stories with great care and view the evidence critically. I was not about to give Agaricus to Daniel just because it may have helped one patient with a different cancer. However, nor should one underestimate the importance of the injection of hope which positive stories give. I was grateful to Kristin for giving me a little hope at a time when I felt precious little.
Daniel and I were about to leave when Gill called on the satellite phone. It was around 7.30am. Again, I had to take the call outside so that Daniel wouldn’t hear. It was an emotional call but I was very glad to hear from her. It was difficult for Gill stuck in the jungle, and she soon came back for two weeks to be with me which was a remarkable act of love in a new relationship.
Daniel and I were now running late. A short way into our journey we noticed a huge plume of smoke rising into the sky. Daniel thought he saw a car on fire by Fairoak Airport, a private airport near my house. Important appointment or not, we had to turn back. A Land Rover was indeed ablaze. We could not get anywhere near it to see if there was someone inside but called the fire brigade before getting on our way once again. To compound things, I took some wrong turnings and we were late getting to the hospital (Petra got there before us from South Wales). Not a good start, although I should have realised that consultants work to only the most approximate schedules.
Stupidly, I had left a copy of the letter from Mr Sinnerton on the back seat. Daniel picked it up and I had to grab it from him - I didn’t want him to see the comment about ‘extremely bad news.’ We were already doing our best to protect him. Petra wanted me to see Tim Briggs first, to say that we would prefer to tell Daniel about the cancer ourselves, if that was indeed the diagnosis.
Tim was bright and breezy. He looked at the scan - Daniel did indeed have Ewing’s sarcoma. ‘Could Daniel get better?’ I asked hesitatingly, dreading the answer. Tim assured me that he could. He told me about another Ewing’s patient of his who had just got married. It’s always important, I came to appreciate, for doctors to tell patients with a serious illness about success stories if they are comparable. It gives such hope. Tim put Daniel at his ease. He explained he would need some more scans before starting treatment. These would determine the extent of the disease. Chemotherapy would then be given at University College Hospital in central London.
‘What should Daniel do about his AS levels in a few weeks’ time?’ we asked. ‘I would forget about them for this year’, Tim advised. Daniel had other ideas. Over coffee in the hospital canteen, he was planning what work to do that weekend. Although it was a terrible blow for him to be told that he did indeed have cancer, we assured him that the news was not as bad as we had been expecting. I genuinely felt more upbeat.
Petra was going back to her sister in Wales. I suggested that she take Daniel with her. I thought he needed to be with lots of people who were close to him.
That afternoon, I went to a Good Friday service in Woking. I’d always thought deeply about religion and was brought up as a three times a Sunday attender. These days, religion for me is more personal contemplation than public ritual and I wouldn’t normally go to church on Good Friday. I don’t respect people turning to the Church only in bad times, but here I was falling into the same trap. In my defence, answers to the eternal questions had suddenly become more pressing and I badly needed solace.
I also travelled down to Wales that day, breaking my journey at my sister Sian’s in Newbury. My general mood was one of qualified relief, that things might not be as bad as we feared. I remarked that the previous two days had been the worst in my life, as if the nightmare was over. It’s strange how things not being as bad as one expected can give almost as much of a morale boost as unalloyed good news, even though the overall picture remains dangerous. This was an emotion I was to experience many times over the following years.
I spoke to Daniel on the phone later and said: ‘Dan, I just want you to know that, whatever lies ahead, Mum and I will be with you every single step of the way.’ The response was pure Daniel: ‘Dad, I’m playing cards; I’ll speak to you later.’ Petra and I were the ones in need of reassurance.
Daniel came to my Mum’s in Cardiff that weekend. On Easter Saturday we went to see Jonah Lomu play for Cardiff rugby team. Normal things were hard to do but I sensed that normality would be important for Daniel. On the Monday, back home in Chobham, I tried to get tickets for a Chelsea match. This was a mistake (not only because Daniel was a big Manchester United fan) since this was not a normal thing for me to do and Daniel picked up on it. The last thing I wanted him to think was that we were packing in as many good experiences as possible because his time was short. That was probably the reality but Daniel didn’t need that message rammed down his throat.
Daniel was due a biopsy that week. This was to confirm the diagnosis. We told the anaesthetist, a kind woman with teenagers of her own, that Daniel had a bit of a cold, in case he should not have a general anaesthetic. Her response was that we needed to get on with the biopsy, which reaffirmed the message that we were dealing with something serious.
Daniel had a general anaesthetic when he was four but, not surprisingly, could not remember it. We explained that he would fall asleep just a few seconds after the injection. When we got to the operation anteroom, Daniel was first given a pre-med injection. After perhaps a minute, he whispered anxiously: ‘I’m not feeling tired at all.’ thinking he’d been given the anaesthetic! Petra and I were tearful in that anteroom.
That afternoon, Chris Henry, the CLIC Sargent nurse at the hospital, came to find us. CLIC Sargent is a wonderful charity which provides support for families of children with cancer. I had already spoken to Chris on the telephone. She’s knowledgeable and with a reassuring manner, but straightforward. That first meeting was the only occasion during those early weeks when, in retrospect, I felt that she gave a bit of gloss, no doubt out of kind motives. The MRI report had referred to an ‘aggressive neoplasm.’ ‘Neoplasm’, I learnt, was another word for cancer. I nervously asked what ‘aggressive’ signified. Chris said that all cancers were aggressive. I don’t think this is what the radiologist meant, but Chris’s explanation at least provided some transient relief.
The next day, Daniel had a chest CT and bone scans, at separate clinics in London. With the bone scan he was first given a radioactive dye – a contrast – to help them read the scan. Petra took Daniel on an open bus tour of London to take his mind off things while the contrast took effect. The scan itself lasted longer than anticipated. That immediately worried Petra and me – had they seen something untoward? We were to learn that scans taking longer than normal didn’t necessarily portend bad news. But as cancer novices we were naturally worried and Petra thought she picked up something in the demeanour of the radiographers. Radiographers, the technicians, aren’t allowed to discuss what they see with patients – that is the role of radiologists, who are doctors. Cancer parents and patients are forever looking for signals in what medical professionals say or don’t say, in how they react. It’s something of a mug’s game.
On that journey home Daniel suddenly became really sick – this was before chemo had started – and I had to weave across six lanes of the M25 at one of the Heathrow junctions to get him to the relative sanctuary of the hard shoulder. The nightmare was getting ever worse.
Scanxiety
I was due to speak to Tim Briggs on the Friday afternoon to get the results of the two scans. I was so nervous – I knew the importance of the cancer remaining localised. As I said to friends, I so wanted some hope when Daniel began chemotherapy which we knew would be tough. Already I was getting paranoid about symptoms Daniel was reporting. The GP of friends in Nottingham kindly tried to put my mind at rest about chest pain Daniel was experiencing.
I couldn’t stay in the house. I needed to be out in the open. I’d been expecting the call from Tim early in the afternoon but in the event it was after 5pm that he rang. The waiting game was something else we were going to get used to. Talk to any cancer parent or patient and they’ll tell you about the awfulness of waiting for scan results. Indeed, someone has coined the apt word ‘scanxiety.’
Tim told me: ‘There’s something abnormal showing on Daniel’s lungs.’ That was a big blow. However, seeking to be positive as usual, he added that whilst this would complicate treatment, it need not affect the outcome. I pressed him whether Daniel still had a reasonable chance and he assured me that he did. I later sought the same assurance from Chris Henry, the CLIC Sargent nurse. She was more careful in her choice of words. It must be extraordinarily difficult for doctors relaying bad news and so tempting for them to allay anxiety by massaging the message. The importance of doctors giving hope – realistic hope – is one of the themes of Daniel’s story. (I later read about a surgeon who explained to a young girl with Ewing’s that he’d deliberately placed a device where it wouldn’t show with the evening gown she wore to her school prom, many years in the future. What a message of hope that must have conveyed.)
So upset was I about the CT scan that I forgot to ask Tim about the bone scan. I was to learn shortly that whether the cancer was in Daniel’s bones (away from his primary site) was of even greater importance prognostically than whether it was in his lungs. I rang Tim back. ‘There are some spots, but people with no cancer in their bones also have spots.’ he said. I was less reassured this time. Even with the positive spin, things were clearly getting worse. We didn’t tell Daniel at this stage.
Tim in fact can’t have been in the least surprised that Daniel’s cancer had spread to his lungs and elsewhere in his skeleton given the enormous size of his primary tumour. We didn’t know at that stage just how big it was. I kept telling people that Daniel had cancer in his hip, not realising, so bad was my knowledge of anatomy, that the hip forms but a small part of the pelvis.
UCH
It was at that point that the main focus of Daniel’s care shifted to University College Hospital in central London. I’d driven past its gleaming new tower block on innumerable occasions, without really noticing it. Treatment would be on the NHS, which as a staunch supporter I was happy about.
Tim had suggested we see Colin McMaster. Our appointment, for Friday 28th April, was already more than two weeks since the MRI scan, which seemed an age to us. I googled Colin to find out what I could about him. I didn’t find out much but enough to confirm that he seemed to be an expert in Ewing’s sarcoma. UCH was a specialist centre for this and other teenage cancers. We knew we had to have the best that the UK could provide and would go abroad if need be.
I recall Chris Henry telling me that surgeons, such as Tim Briggs, were temperamentally more upbeat than oncologists, such as Colin McMaster. I interpreted this as a gentle warning to be prepared for a bleaker picture than Tim had conveyed. So we were braced for even worse news that Friday. I prepared Daniel gently in the car journey, in the same terms as Chris.
We were to have so many meetings with Colin, in clinic and elsewhere, that many merge into each other. However, this first meeting remains crystal clear in the memory. It was in the Rosenheim Building, just south of the main hospital. Great work was done in the Rosenheim but it’s fair to describe it as antediluvian by modern hospital standards. It’s a red-bricked Victorian building, unsuited to the needs of today’s cancer medicine. Facilities for chemotherapy outpatients were overcrowded and unsatisfactory.
Our appointment was around 10.30am. We were very nervous. The waiting-room was already full. Nobody talked much. On future visits I would look round and wonder who was going to get good news that day and who bad news. Cancer is like that. A patient may think he or she is doing well but then have a bad scan result, even without symptoms. Someone else may be expecting bad news because of some new pain but be pleasantly surprised. We became regular travellers on that rollercoaster.
It was to be over two hours before we got to see Colin. That was not to be untypical. All the sarcoma consultants ran late, but Colin was a particularly bad timekeeper. If it
