Unfortunately I know more about brain tumours that I would like, after our family friend Finlay died of a glioblastoma when he was 11 years old, and sadly I know of a few adults who have died from the same cancer. Brain tumours kill more children and adults under the age of 40 than any other cancer. What a sh*t club to be in.
Rob Delaney and his family know even more close hand what b*stards brain tumours are after their third son, Henry, was diagnosed with a brain tumour when just a year old. Here is the blurb about the book Rob has written about their experience:
“In this memoir of loss, acclaimed writer and comedian Rob Delaney grapples with the fragile miracle of life, the mysteries of death, and the question of purpose for those left behind.
When you’re a parent and your child gets hurt or sick, you not only try to help them get better but you also labour under the general belief that you can help them get better. That’s not always the case though. Sometimes the nurses and the doctors can’t fix what’s wrong. Sometimes children die.
Rob Delaney’s beautiful, bright, gloriously alive son Henry died. He was one when he was diagnosed with a brain tumour. An experience beyond comprehension, but an experience Rob must share. Why does he feel compelled to talk about it, to write about it, to make people feel something like what he feels when he knows it will hurt them? Because, despite Henry’s death, Rob still loves people. For that reason, he wants them to understand.
A Heart That Works is an intimate, unflinching and fiercely funny exploration of loss – from the harrowing illness to the vivid, bodily impact of grief and the blind, furious rage that follows, through to the forceful, unstoppable love that remains.
This is the story of what happens when you lose a child, and everything you discover about life in the process.“
The book is not an exact chronology of what happened to Henry – and you know from the start that the outcome was his death – but it is incredibly moving throughout. It’s also, at times, funny and written with the dark humour (and swearing!) you’d expect from Rob Delaney. Who knew that the pronunciation of the word ‘giraffe’ would be a stumbling block for Henry’s parents during his treatment?
The knock on effect on the whole family, Henry’s brothers, the extended family – and their friends and Henry’s carers is also discussed. Rob’s family were going through so much other sh*t at the same time on the other side of the Atlantic – it was just awful – but they supported each other throughout.
Whilst there were many similarities with Fin’s story – this is very much Henry’s story. Henry’s family were keen to support charities helping families going through similar situations with immediate help to care for the sick child and their siblings – whereas Fin’s family have raised thousands to support both Birmingham Children’s Hospital where Fin was treated – and also Brain Tumour Research, because historically brain tumours have received less than 1% of the total cancer spend. All of these charities are equally valid and equally needed.
As a parent – this was a hard read – but I think it would be a very useful, if emotional, read for parents going through something similar. It also reemphasised to me the need to be careful around language when people have cancer. It’s not a ‘battle’ – because that implies the sufferer needs to fight hard to try and ‘beat’ the cancer – when sometimes it doesn’t matter how hard the person fights, it’s never going to be enough – because cancer is f*cking sh*t. There’s lots of other thought provoking things too – I really would recommend this book to everyone.
Thank you to NetGalley and the publisher for my review copy in exchange for an honest review. But mostly, thank you to Rob and his family for sharing Henry’s story with the world.