Silas is ten years old when the headaches start. When the diagnosis arrives, his parents are told they have until Christmas… maybe. And so begins Sarah Pullen’s battle to save her son, against doubting doctors and insurmountable odds. This story about love and loss traces her family’s journey from that first day at the hospital, battling a tumor they named ‘Bob’, through Silas’s death and beyond.
This profoundly moving and honest account shows that it is possible to find the strength for a journey that no mother should ever go on; that it is possible to find a new way to live, even when death is knocking on the door. It is about confronting grief – raw, ugly, incomprehensible grief. It is a book about wrapping a small boy in love, but still letting him get grubby knees. It is about learning to savor every moment of the here and now, yet also learning to let go.
At its heart, A Mighty Boy is a story of the love between a mother and a son. It is a book about seizing the moment and somehow managing to survive the death of a child. But most of all it is a book about a small, mighty, smiling boy.
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|Publisher:||Random House UK|
|Product dimensions:||6.50(w) x 9.50(h) x 1.10(d)|
About the Author
Read an Excerpt
There is a moment I wish my son dead. I wish for him to be killed instantly in a car crash. I even speak the words out loud. What sort of mother must I be? Can you imagine wishing your child dead? It's not something I would ever have thought possible, not until a stranger in a crisp Italian suit and polished leather shoes tells me that my 10-year-old son is going to die in a matter of months. That it's inevitable. That he'll die a tortuous and undignified death that will rob him of his personality and the essence of his being long before his heart finally stops beating. Wouldn't you too find yourself wishing for a quick death for the child you love beyond reason, a child that has never been ill a day in his life? We stand in a small hospital playroom, my husband and I. The wreckage of cheap plastic toys lies strewn across the floor, the room pulsates with garish colour and the surfaces are tacky with the residue of hundreds of sticky little fingers. We are awash with emotions and the floor rocks with invisible waves. I reach out a hand to steady myself on the wall. Across the room from us perches a consultant with an unpronounceable name. He reminds me of a hawk – talons gripping, eyes watchful, all-seeing and powerful – and I realise, with a start, that we are his prey.
The consultant has introduced himself and we have shaken hands. His grip is cool and his palms dry, these small things I register, but neither of us ask him to repeat his name. We are both too focused on the news we know he has come to impart. He has ushered us from our son's hospital room and swept us across the corridor into this playroom.
Over the next few months we learn that this bedside exodus happens everywhere. Good news of any nature will always be delivered by our son's bedside, the consultant's relief palpable in the smile creasing his face, whereas bad news always takes us into dark corridors or starkly lit empty rooms. We come to dread those words and the unspoken meaning behind them – 'Shall we find somewhere quiet to talk?' So much information and heartache imparted with a few harmless words.
On this day, though, we are novices to the game and still have optimism and hope crammed in our back pocket. I notice that the consultant refuses to hold my gaze. His dark eyes dart between us, avoiding making contact for more than a few seconds. My palms grow clammy and my heart starts beating loudly in my ears. The man keeps calling my husband by the wrong name, Sam not Ben, but we don't correct him.
He looks at us with clinical detachment and draws his lips together. A frown furrows his forehead. I catch a glimpse of pity flit across his face, then his professional demeanour takes over and the shutters come down.
He points to a couple of chairs and gestures for us to sit. We squeeze into the tiny, brightly coloured children's chairs. A crayon mark slithers across the lino tiles by my feet and my eyes follow its convoluted course to its abrupt end. I keep my eyes on the floor.
The consultant waits until we are lined up in front of him and then asks, 'Do either of you have a heart condition?'
I look up and catch Ben's eye. We shake our heads. The same thought pushes through the fog in our brains. We are here to talk about our son's health not our own.
'That's good,' says the consultant, ignoring our confusion. He takes a deep breath and gazes out the window for a second at the grey London skyline. Sounds of a busy hospital drift under the closed door: the squeak of a trolley wheel on linoleum, a tap running in the sluice room, the squeal of a child running up the corridor. Ben shifts on his chair and the leg scrapes on the floor. Prompted by the noise, the consultant begins to speak. A stream of words flows from his mouth, each one tumbling over the last, as though a dam has burst.
'We've had the pathology results back. Your son has a high grade glioma in his left parietal lobe. It's suggestive of a glioblastoma multiforme. It has been partially resected but we couldn't fully remove it because of the risk of right side hemiparesis.' He pauses. I try and decipher his words but they slip and slide away from me.
The bile rises in my throat and my fingers tingle as the blood drains from my limbs. I feel what is coming. I know it in my bones as only a mother can.
His voice comes from a distance; it's silky smooth but every word grates in my mind. I want to scream at him to stop. Whatever he has come to say will not be real until it is spoken out loud. I want to stick my fingers in my ears and chant nonsense to prevent the words from getting through, but I can't move. My muscles are deaf to the clamour of my brain.
'He has an aggressive brain tumour. One of the worst. We couldn't take it all out as we didn't want to risk paralysing him on one side of his body.' He pauses and takes a deep breath. 'There's nothing we can do. There's no successful treatment for this type of tumour.' He looks hard at us and his lips start moving long before my brain actually registers his words. 'I'm sorry but your son is going die. He has 12–18 months with treatment and only a few without.' He drops his eyes. Black spots crowd my vision and I dig my nails into the palm of my hand to stop the scream that is working its way up my throat. He continues, each word thudding into my chest. 'Some families choose not to undertake any treatment. We'll support you whatever you choose. There is no cure.'
'There has to be something,' says Ben, his voice cracking. 'Go back in.
Take the rest of it out. Can't you do that? Surely it's worth the risk!' The consultant shakes his head. 'It's not that simple. This type of tumour doesn't have clear edges. It infiltrates healthy brain tissue. No matter what we do we won't be able to get it all out. At this stage it's simply about quality of life, I'm afraid – we don't want to leave him paralysed for the little time he has left.'
Ben blanches. 'Doesn't anyone survive?' he whispers.
The doctor laces his fingers together and sighs as though he has heard the question many times before. 'I'll be honest,' he says. 'It can happen.' I look up, grasping at the slim lifeline he has thrown.
'So ... so there's a chance,' I stutter. My voice is hoarse and the words sound alien and robotic. Not mine.
He catches my gaze and I see it written there in his eyes. He shakes his head. The vomit rises in my throat.
'Very few ever survive,' he says. 'I don't want to give you false hope but the truth is less than 10 per cent of these children survive for two years.'
The colour bleeds out of the room. The walls close in, pulsating rhythmically, and the only thing that I can hear is the frantic pounding of my heart.
Ben's brain veers off at a tangent trying to buy him breathing space. 'Can I ask why you wanted to know if either of us had a heart problem?' The consultant nods. 'It's just a precaution,' he says. I can see his mind assessing how much information to give us. He straightens his back. 'I've had parents keel over with a heart attack when I've had to give them this news. I like to be prepared.' He gives us a look full of pity. 'I'm sorry. I really am. I have children of my own.'
That's it. Sentence has been pronounced.
Our bright, beautiful boy's future has been stolen from him with a few brief words, and with it our hopes and our future, the one we had mapped out. It's taken only a few heartbeats, mere moments, to destroy a world and unpick the universe, at least as we know it. All those parental expectations and longings are crushed under a moulded leather heel, as easily as one would crush an ant. I look at Ben and together we shatter into thousands of pieces. Pieces that skitter across the stark linoleum floor and get lost amongst the piles of toys, never to be recovered. I can't breathe. It feels as though my mouth and nostrils are clogged with dirt. I claw at my face and haul the air into my lungs, wheezing and retching. I grab hold of Ben. Thoughts flail and whip through my head; the past, the future, fast-forwarding then rewinding. Time stretches and I peer at the tattered remnants of my life and the horror that is to come. How will we go about our lives now? How can the world still be turning? Why doesn't everything just stop as my heart explodes?
I picture the small boy in the nearby room, building his Lego model and laughing at YouTube videos, oblivious to the death sentence that has just been pronounced by an invisible judge and jury. The diagnosis is worse than we could have possibly imagined. We dared to hope and now all hope has been ripped away. We are falling, tumbling into an abyss. We've been left with nothing to hold on to – just a small boy lying alone in the next-door room, dreaming of his bright future.
It's August 2012. The sun is shining and the UK is in the grip of Olympic fever. Silas is slightly under the weather and over a couple of days has a few headaches.
The first moment we start to feel something is really amiss is Sunday lunchtime. The women's pentathlon is on the TV in the background and we are all looking forward to watching the closing ceremony. We have guests. The house is full of children and noise but Silas sits on the stairs in our hall with his head buried in his hands.
'You don't understand,' he says, as one of his brothers accuses him of making a fuss. 'My headache's so bad.' He looks at us, his eyes big. 'I need to go to hospital. Please take me to hospital. Please, Please,' he begs. 'I feel like I'm dying.'
My eyes meet Ben's over the top of Silas's head and I see my concern mirrored in his. Here's a 10-year-old boy telling us he's dying. We need to take him seriously. I am, though, a mother of four boys and I don't want to panic and spend several needless hours in our local A&E department on a Sunday afternoon.
We agree to give him some paracetamol and lie him down on the sofa to see if things improve. Outside the room, out of his hearing, we also agree that if things don't get better then we will take him straight to hospital. Thoughts of meningitis fill my head. Like most parents, I have pressed a glass against an unknown rash on a wailing baby. I know the symptoms. They are stapled to the wall in every doctor's waiting room.
I make Silas bend his neck to his chest. I make him turn towards the sunlight streaming through the window and I relax when the light doesn't appear to hurt his eyes.
Within half an hour of the paracetamol, Silas feels better. He joins us for a big lunch full of ripe summer berries and sticky meringues. He chats, he fools around and he bickers with his brothers. He makes us and our guests laugh at his silly antics. We brush off the earlier episode, happy that we've not wasted the afternoon in A&E and reassured that there is nothing seriously wrong with him. We play a big game of family cricket in the garden and Silas hurls the ball down the makeshift crease with deadly accuracy. The delicate song of a thrush is punctuated by the rowdy thwack of leather on willow. The air is filled with calls of 'Howzat!' and the cries of small boys arguing against unfair dismissals.
The shadows lengthen in the garden and we come inside. Ben leaves to take my brother to the station.
Silas walks into the kitchen.
'What do you want for supper, darling?' I ask.
I get no reply. Nothing too out of the ordinary here, Silas often has to be asked things several times.
'Silas, what would you like?' I repeat.
He looks at me blankly.
'Well?' I say, raising my hands in exasperation. 'What do you want to eat?' I turn away to empty the dishwasher and Silas mumbles a few unintelligible words.
'What did you say?' I ask, my head buried deep in the clean cutlery.
'I ... I ... I ... I ... I ... I ... I ...'
I look up, narrowing my eyes.
'Are you OK?' I ask, coming round the side of the kitchen table. My eyes search his face. He is frowning.
'I ... I ... I can't think,' he says. 'I ... I ... can't think.' He sounds as though he's been at the whisky bottle.
I hold his shoulders and lower myself to his level.
'Do you feel all right?'
He nods his head.
'What's the matter then?'
'I ... I ... I ... I ...' he stutters.
I squeeze my fingers into his shoulders and icy claws of fear curl around my guts.
'Don't joke, Silas,' I say. 'It's not funny! Promise me you aren't joking!' He shakes his head and the cold spreads deep within me.
'What day is it?' I ask.
'Sun ... Sun ... Sunday.'
'What's your name?'
'Si ... Si ... Si ... Si.' His eyes widen in surprise and confusion.
'It's OK,' I whisper, although I know that it's far from OK. 'Let's go upstairs and lie down on Mummy's bed.' I want to get him somewhere quiet and away from the prying eyes of his brothers.
Silas collapses on my bed and holds his hand to his head. 'When's your birthday?' I ask him.
He struggles to answer and lies there touching his head. I make him bend his neck, touching his chin to his chest. 'Does your neck hurt?' He shakes his head.
'I need ... I need some furonen,' he says.
'You need what, darling?' I ask, trying to stop my hands from trembling. My mind is racing. Where's Ben? How long will it take him to get back from the station? What should I do? Something is wrong, very wrong. Fear writhes in my stomach. I try to stamp on it but it keeps growing. A bumblebee bashes against the open window and I register its angry buzz.
'I need some ... some ... some furonen,' Silas repeats. He waves his hand wildly in the air.
'I don't understand, my darling. You need what?' 'Furonen,' he says. 'My head. My head. I ... I need furonen.' He moans and holds his head.
It clicks. 'You want some Nurofen?'
Relief lights his eyes. 'Yes, yes, that's it. I want some Nurofen.'
'All right, my darling,' I say and leave the room to get the Nurofen. I pick up the phone and dial 999. The operator answers. I hang up. How can it be that serious? How can I need an ambulance? He was playing cricket not so long ago. I stand in the doorway and watch my son for a moment. He is lying on the bed with his hand covering his eyes. I take a deep breath and dial the numbers again.
'I need an ambulance,' I say into the phone, my voice strong.
The ambulance arrives fast, although it feels like the longest 10 minutes of my life. I have to stay on the phone to the operator but the reception isn't good in the bedroom so I stand at the top of the stairs. They won't let me hand the phone over to one of our guests so that I can be at Silas's side. This frustrates me and I grow increasingly agitated. The operator keeps asking me to calm down and I try to keep my voice steady and block out Silas's frantic cries.
Ben arrives back and bounds up the stairs. He looks at me in disbelief. He had left his son running around and less than 30 minutes later he has arrived home to be told the ambulance is on its way.
'Are you sure we need the ambulance?' he asks.
I nod my head. He grabs my hand and squeezes it. Fear dances across his face. He takes a deep breath and composes himself, then plasters a smile on his face and walks into the bedroom.
The noise of a siren drifts through the open windows.
'They're here,' I say to the operator, hanging up the phone with relief. Two green-suited paramedics puff up the stairs carrying their equipment. It seems to take them an age and I stifle the desire to push them faster.
The two girls assess the situation and quickly rule out meningitis. The only symptoms Silas displays are a headache and some confusion and slurred speech. They let us give him some Nurofen.
'Has he been outside in the sun?' one of them asks.
'Yes,' I say. 'We've been playing cricket but it hasn't been that hot today.'
'Has he been drinking plenty of fluids?'
I think back through the day. 'Yes, lots.'
'It looks like sunstroke or heat exhaustion.'
'But what about the headaches he's been having the last couple of days?'
They shrug. 'We see this type of reaction in kids sometimes.' 'It's not sunstroke,' I say, my voice sharp.
One girl looks at me quizzically and raises an eyebrow. The other keeps her head bent and stays focused on the task of taking Silas's blood pressure.
'Don't worry, Mum, we'll take good care of him. He's in good hands.' I want to scream at them that I'm not overreacting or wasting their time. I want to make them realise what I feel in my gut, but I don't know how to communicate my terror.
I take a deep breath. 'It's not sunstroke,' I repeat slowly.
The other girl turns around and puts her hand on my arm, patting me into submission. 'His SATs are fine and he doesn't have a temperature,' she says. 'We'll take him into the hospital but it's just precautionary because of his confusion – nothing to worry about.'
Excerpted from "A Mighty Boy"
Copyright © 2017 Sarah Pullen.
Excerpted by permission of Unbound.
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