A Boy and His Soul

By John Graham-Pole

A Boy and his Soul is the second in John Graham-Pole’s trilogy of novels for and about children, teens, and their families, inspired by 40 years of caring for children with cancer. The story is a fantasy—but born of the real-life experiences of very ill and dying children. Eleven-year-old Jeremy, who has advanced leukemia, becomes aware of the presence of his ‘animated’ soul, Jewel inside him. Jewel guides Jeremy in helping his family and friends come to a peaceful acceptance of his coming death. These scenes are interwoven with Jeremy’s near-death experience. After an apparent journey to Heaven, he returns to Earth to say his final goodbyes to all his caregivers, friends, and family.

• Language: English
• Publisher: Harp People's Press
• Release date: Aug 15, 2020
• ISBN: 9781990137020

John Graham-Pole

John Graham-Pole is a retired professor of pediatrics (Professor Emeritus, University of Florida). He has been a clinician, teacher and pioneer researcher in the field of childhood cancer for forty years. Educated in the United Kingdom, he co-founded the Center for Arts in Medicine (www.arts.ufl.edu) at the University of Florida, now among the world’s leading arts-and-health organizations. He is co-publisher of HARP The People’s Press (www.harppublishing.ca), which is dedicated to producing print and online publications on art and health for a diverse readership. John’s personal website is www. Johngrahampole.com and he can be found on Facebook, Instagram and LinkedIn.

Book preview

Introduction

I wrote this book especially for children and their families, and those who care for them, when they are facing the possibility, or the probability, or the certainty, of a child’s death. Its end-of-life theme, though, lived through the heart and mind of a young boy, has, I believe, universal appeal.

This story is a fantasy—but it is born of the real-life experiences of very ill and dying children. A few generations ago it was okay to talk about the death of children because it was so much more common. But we rarely do so in our culture today because death from childhood illness has become mercifully rare.

Eleven-year-old Jeremy, the book’s hero, is dying of leukemia. He and his parents are saddened and scared by the growing certainty of his death. Then Jeremy becomes aware of the presence of someone, or something, talking to him from deep inside him. It turns out to be his ‘ animated’ soul, Jewe1, who helps him prepare for his final journey. Of course, Jewel was there all along, but Jeremy’s illness experience has brought him to a first direct awareness of Jewel.

Jewel guides Jeremy in helping his family and friends come to a peaceful acceptance of his death. These scenes are interwoven with Jeremy’s near-death experience. After an apparent journey to Heaven, he returns to Earth to say his final goodbyes to all his caregivers, friends, and family.

As a pediatrician who has cared for many children who have died, I hope this book will make it easier for children and grown-ups to talk about these hard, hard things. Early in my career, I thought it was not okay to talk with my patients and their families about dying. Even when I felt in my heart that everyone knew when death was closing in, the parents and the professional caregivers remained in denial-as though the emperor was still fully clothed. This was almost never the case for the children themselves: like the young boy in Hans Christian Anderson’s tale, they saw and knew the naked truth.

So it was that my young patients became my teachers. They taught me to have utterly honest conversations when the time came, however hard it was for everyone. They showed me how often bringing things out into the open brought-mixed in with all the sadness-much needed relief. Most important, the children showed me how vital it is to have these hard conversations if we are to say a proper goodbye to the people we love most on Earth.

Raig, the child life internist in this book, experienced her own journey with cancer, which you can read about in Blood Work, my first novel, published in 2019 (available from www.harppublishing.ca).

Chapter One

Solitary Confinement

Jeremy stirred, eased his left arm out from under the covers and squinted sleepily at his watch. Five-thirty, and still only half-light. He loved his watch’s luminous dials, though he was still trying to fix in his brain which button to press to wind the hands and which to make it light up. It was his mom and dad’s eleventh birthday present to him—the first watch he had ever owned. He’d had a fun birthday party last week, if any party spent in a hospital isolation room could ever be called fun. None of his friends from home could come, and of course none of the other patients from the ward either. But his two favourite nurses, Christine and Peter, had brought him a blueberry ice cream cheesecake with chocolate frosting. He could even enjoy the flavours, though his taste buds were all but shot. Jeremy knew it was one of the horrid side effects of all the chemotherapy drugs he’ d been slugged full of.

Jeez, I wish I could have a roommate to hang out with, he thought for the two-hundred-and-thirty-eighth time in twenty- three days. One my own age. Though I guess it’d be okay if they were a bit younger, so I could teach them a few things. Just so long as they were into videogames. It’s great having Mom and Dad here most of the time, and Dad’s getting good at a couple of games, now he’s finally figured out how to work my PlayStation. He almost beat me at Castle Crashers last time. But it’s nothing like having a friend my age. Even someone with the same problems as me—though no way that’s ever going to happen.

Twenty-three was the number of days and nights Jeremy had been cooped up in this solitary room on the children’s cancer ward- with the emphasis on solitary. But little did he dream that his wish for a buddy his own age to hang out with was very soon to be granted- in a way he could never have dreamed of. He was about to be introduced to some entirely different kind of company.

As he peered through the gloom, he could make out the shape of his bedspread that had slipped to the floor at the bottom of the bed. That bedspread was a treasured possession. It depicted one of the funniest scenes from Minions, where super- villain Scarlet Overkill and her husband Herb were hard at work at the villain convention recruiting the Minion trio to help them steal the Queen of England’s imperial state crown. Jeremy had taken an instant liking to those little one-celled creatures the first time he’d seen them, which was a good few movie showings ago. With a huge effort, he heaved himself up, crawled down most of the length of his bed, and hauled the bedspread up off the floor.

Just hope it didn’t get too much of last night’s supper on it, he muttered. No great loss, though, if it did get messed up- that movie’s been out for ages. Sean texted that he and Robbie saw it again last weekend. But once they spring me from this dungeon, I won’t even get to go to the mall, let alone any movie theatres. Not till I get through with all my treatments—and who knows how long that’s going to be.

He felt distinctly shivery as he snuggled back under the covers—always a bad sign. He was hardly even aware of the sweats and shakes coming on nowadays, though, what with the countless fevers he’d run over this past month. As he tugged again at his roaming bedclothes, he became aware of his dad’s comforting bulk stretched out on the other side of the bed. He hadn’t so much as stirred during all the recent kerfuffle. When Jeremy had first got ill two years ago now, right after his ninth birthday, he’d utterly rejected the thought of sharing his bed with Dad whenever he stayed over. But it turned out there was only space in his isolation room for a narrow pull-out chair bed, which Mom had taken over very early on. His parents had soon given up all attempts to share it, after a sleepless night twisting and twirling back and forth as they’d tried to imagine they were still home in their own bed.

You’d think a hospital that caters specially for children could have it set up so both parents could stay over, Jeremy’s dad had complained more than once. He was given to making his feelings known to anyone who would listen.

"Well, I don’t complain when you take up more than half my bed," had been Jeremy’s response. Nowadays, though, he really looked forward to the nights when both Mom and Dad stayed over. He’d come to depend on them a whole lot more since he first got sick. And if he couldn’t have anyone his own age around, they were mostly okay company. Correction, they were great company.

Chapter Two

Mystery Voice

And now you’ve got me, too, to keep you hoppin’ and boppin ‘.

Jeremy sat bolt upright. His dad was still sawing logs, totally out to the surrounding universe.

Who said that? Who’s out there? Jeremy somehow managed to keep his voice quiet enough not to wake his parents.

Silence. He peered around the room, but there wasn’t a thing stirring, if you didn’t count the signs of daylight creeping slowly towards his bed, telling him hospital day twenty-four was about to dawn.

I’m sure I just heard someone say something- and right close by. Well, I guess I must’ve still been dreaming.

He punched his pillow and settled back down for the third time, but his mind was now set at more than half-alert. He was quite sure he had heard something …Then he noticed another odd thing. He wasn’t building up any more sweat and he was no longer shivering.

In fact, I seem to be feeling