One in 2,000 children develops leukaemia. Despite improved survival rates over the past 50 years, treatment is painful and stressful. Sadly, even with the latest improved therapies, it is not always successful. For the child, family and everyone concerned, there are many urgent questions: "Why did it happen?"; "Why can't the treatment be less toxic?". Accessible sources of information, help and insight are rare, which is why this book is invaluable.
Juxtaposition gives this book, in the midst of its serious subject matter, its remarkable quality. Nicola Horlick's astonishingly vivid account of the life and death of her daughter Georgie sits next to the account of Janine, a childhood survivor. The paediatrician's chapter, reporting progress, is next to that of the scientist, Mel Greaves, who is searching for better footholds to understand and treat leukaemia.
Indeed, one of the great strengths of this book is Horlick's inspirational contribution: it is a fiercely honest, powerful, illuminating, intensely moving narrative of Georgie's courageous but unsuccessful battle against malignant and unrelenting white blood cells.
Parents facing death's proximity struggle to sustain hope and wonder whether to abandon treatments, because surviving childhood leukaemia depends on withstanding near-lethal treatments that result in thin, fragile bodies, bald heads and wiped-out immune systems.
Horlick's account sets the chapter by the paediatrician in context; he describes the steps by which survival has increased from 21 per cent in 1962 to more than 90 per cent today. Ultimately, it is the courage of children such as Georgie that have contributed to this improvement, aiding the survival of others.
Many chapters inject hope and help into what most people view as a subject of unrelenting starkness. The accounts of leukaemia survivor Janine and her mother Delena are remarkable.
Janine provides reassurance that there are survivors and that treatment can be successful, and she serves as a reminder that the determination, grit, strength, maturity and wisdom of children undergoing leukaemia treatment is astonishing. Sections by Janine such as "Hair loss and havoc" and "Looking forward" would be of inestimable value for children and families undergoing and recovering from treatment. Among the most moving parts of this book is a picture of Janine in a dazzlingly bright blue wig - "I felt like a film star!" - that helps to demonstrate that fun, resourcefulness and positive attitudes are immeasurably important.
Equally, there are sections that illuminate, with great sensitivity and compassion, the difficulties involved. The first is from a child psychologist who describes children's fears, explaining that often these are not expressed to parents. "They draw way too much blood out of me, way too much; soon I won't live any more," says one child. Another confesses: "I held it (negative feelings) to myself, because if I let it out, you know, I thought my parents would get mad at me." It is humbling that these children can teach us so much about life; how to cope, tackle and overcome misfortune.
Parents, too, express anguish: "You are helpless and then you have to reassure yourself: yes that is good for my child, that is best for my child; but I die inside, every time he is being hurt I simply die."
Artist Susan Macfarlane has provided a series of evocative pictures that poignantly convey an extraordinarily profound and sympathetic view of undergoing leukaemia treatment. My personal favourite, "Sleeping it off", is used for the cover.
I would recommend this book, because it provides information relevant to all those seeking to help children with leukaemia, and reminds us of our progress from a time when leukaemia was almost invariably fatal to today's spectacularly improved survival rates.
White Blood: Personal Journeys with Childhood Leukaemia
Edited by Mel Greaves
World Scientific Publishing
£35.00 and £19.00
ISBN 97898190392 and 90408
Published 1 October 2008