David Thomas - Daniel, My Son: A Father’s Powerful Account Of His Son’s Cancer Journey

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 Chlo lay dying of exactly the same primary bone cancer: Ewings sarcoma.

Chlo died on February 28th 2013 - and our familys 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. Id 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 sons 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 lawyers 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 Ewings, 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 Ewings 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 doesnt want to invest in children and young people as they dont 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 Chlo. 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 advocate
www.facebook.com/createforchloe
www.blogspot.achildofmine

This is the book I thought I would never write. Its about my sons cancer journey. His journey was inevitably my journey too because I traversed it every step of the way along with Petra, Daniels 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. Im a firm believer that one should learn from lifes harsh lessons and, where possible, apply them to make the world just a little bit better. But I didnt think Id 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 Ewings sarcoma, has been known to come back seventeen years after first appearing.

Although I didnt 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. Im 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. Thats not uncommon. One teenager with Ewings in the US didnt 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 didnt survive. But when he died, I realised quickly that I should still write a book. Ive 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 wasnt on Facebook, so theres 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 wasnt 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 didnt 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 Daniels example. My friend Caterina periodically re-reads my eulogy at Daniels funeral for inspiration. A woman in the US, a victim of sex trafficking, told me that Daniels story brought her from the brink of suicide and has inspired many students she knows going through a difficult time. One of Daniels 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 Daniels funeral to inspire his students.