Goodbye my beautiful boy — a mother’s account of life after a diagnosis every family dreads
The Sunday Times, August 13 2017
One moment, Silas was out in the garden playing cricket with his brothers. The next, he was unconscious in hospital, battling to survive an untreatable brain tumour. This is his mother Sarah Pullen’s account of what happened next.
There is a moment I wish my son dead. I wish for him to be killed instantly in a car crash. 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 he’ll die a torturous and undignified death that will rob him of his personality 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 who has never had a day’s illness in his life?
We stand in a small hospital playroom, my husband and I. Across the room from us perches a consultant.
He has ushered us from our son’s hospital room and swept us across the corridor into this room. Over the next few months, we learn that good news is always delivered by our son’s bedside, the consultant’s relief palpable in the smile creasing his face, whereas bad news takes us into dark corridors or starkly lit rooms. We come to dread those words, “Shall we find somewhere quiet to talk?”
The consultant asks us: “Do either of you have a heart condition?”
We shake our heads. We are here to talk about our son’s health, not our own.
“That’s good,” he says, ignoring our confusion. He takes a deep breath and gazes out the window. A stream of words flows from his mouth.
“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 to decipher his words, but they 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.
I want to scream at him to stop. I want to stick my fingers in my ears, but I can’t move. “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. “There’s no successful treatment for this type of tumour. I’m sorry, but your son is going die. He has 12–18 months with treatment and only a few without.”
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. “Some families choose not to undertake any treatment. We’ll support you whatever you choose. There is no cure.”
“There has to be something,” Ben says, his voice cracking. “Go back in. Take the rest of it out.”
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.”
Ben blanches. “Doesn’t anyone survive?”
This boy is seriously ill. You can remain if you stay calm, otherwise I will have you removed
“Very few ever survive,” the consultant says. “Less than 10% of these children survive for two years.”
The colour bleeds out of the room. The walls close in, and the only thing I can hear is the frantic pounding of my heart. Ben veers off at a tangent to buy some breathing space. “Can I ask why you wanted to know if either of us had a heart problem?”
The consultant nods. “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.
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. The diagnosis is worse than we could have possibly imagined. 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 Britain is in the grip of Olympic fever. Silas is under the weather and over a couple of days has a few headaches. We start to feel something is really amiss at Sunday lunchtime. We have guests. The house is full of children and noise, but Silas sits on the stairs 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, please,” he begs. “I feel like I’m dying.”
My eyes meet Ben’s 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 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. Outside the room, out of his hearing, we also agree that if things don’t get better we will take him straight to hospital. Thoughts of meningitis fill my head. I make Silas bend his neck to his chest. I make him turn towards the sunlight 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 and bickers with his brothers. He makes us and our guests laugh. We brush off the earlier episode, reassured that there is nothing seriously wrong with him. We play cricket in the garden and Silas hurls the ball down the makeshift crease. The shadows lengthen and we come inside. Silas walks into the kitchen.
“What do you want for supper, darling?” I ask.
I get no reply, so I repeat the question.
He looks at me blankly. I turn away to empty the dishwasher and Silas mumbles a few unintelligible words — “I, I, I ...”
I look up. “Are you OK?” I ask. My eyes search his face. He is frowning.
“I ... I can’t think,” he says. 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 ...” he stutters.
“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’s your name?” I ask
“Si ... Si ... Si ... Si ...” His eyes widen in surprise and confusion.
Love oozes out of his every pore. At bedtimes, he constantly calls us back for kiss after kiss, just one more
“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.
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, my voice strong.
The noise of a siren drifts through the open windows. Two paramedics puff up the stairs carrying their equipment. 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.
“Has he been outside in the sun?” one of them asks.
“Yes. We’ve been playing cricket, but it hasn’t been that hot today.”
“Has he been drinking plenty of fluids?”
“It looks like sunstroke or heat exhaustion.”
“It’s not sunstroke,” I say, my voice sharp.
The other girl 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.”
I squeeze into the ambulance, while Ben follows in the car. Accident and emergency is quiet. There is no rush to treat Silas. I am left on my own with him. He becomes less responsive. He is drifting and absent; his eyes lose focus. I call over a junior doctor, but he appears nonplussed. Ben arrives just as Silas’s heart rate plummets to 40bpm. He’s clammy and barely conscious. We call the doctor back over and he inserts a cannula into a vein and takes some blood, then fits an oxygen mask to Silas’s face.
“Has he hit his head in the last couple of days?” he asks.
“No,” we say in unison.
The doctor looks at Silas and his lips tighten. He spins round and disappears again. Silas suddenly writhes on the bed and vomits into the oxygen mask.
“Help,” I call, pulling off the mask. “Help,” I scream as he is sick again over the bed. His eyes flutter, but they don’t open. The doctor comes back with a big syringe and injects it into the cannula. “We think your son has a swelling inside his head. This will help reduce pressure in his brain.”
“But he hasn’t hit his head,” I murmur.
“Until we know otherwise,” says the doctor, “we’re going to assume he has some sort of head injury.”
They wheel Silas off to have a Cat scan. Afterwards, he is brought back into the resuscitation room. He’s completely unresponsive. A grey-bearded man, with spectacles pushed high on the bridge of his nose, storms into the room. He turns to a monitor and switches on the screen. A few seconds later, the screen fills with an image of Silas’s brain. There, on the left-hand side, are two large, circular anomalous masses, one in front of the other. The back one is three times the size of the front one, and appears to be the size of a tennis ball.
The man turns. “Are you the parents of this boy?” he barks.
We nod. I don’t trust myself to speak. This is worse, much worse, than meningitis. The doctor flings his next words at us, each word like a punch to the solar plexus.
“This boy is seriously ill. He has a significant mass on his brain, most likely a tumour. This is a life-threatening situation. We may lose him at any moment. You can remain if you stay calm, otherwise I will have you removed. Stay out of my way and let me work and I will do my best for your son.” He dismisses us and gets to work.
I dare not look at Ben. I look at the monitor again. How can something that size be in my son’s head without us knowing? I learn later that the faster a brain tumour grows, the fewer symptoms there are. Slower-growing tumours tend to cause repeated visits to GPs before diagnosis. Silas’s tumour, though, is so aggressive that his brain has no time to react to the intrusion until it reaches crisis point and starts shutting down in shock.
I stumble out of the room, my mouth thick with saliva, and call my mother, who is with the other boys.
She struggles to comprehend what I’m telling her. I want to curl up in a ball and let her tell me everything is going to be all right, but I’m the mother now and I have to be strong. I can handle facts, but not emotion. Raw emotion will lead to panic and I cannot allow the panic in if I am to be of any help to my child. I push it deeper and cage it in my belly, where it festers and grumbles and makes a permanent home.
An ambulance moves Silas to King’s College Hospital in London in the middle of the night. There’s no room for Ben or me as they need to have a full medical team. We let Silas go with a bunch of strangers not knowing if we will ever see him alive again.
We arrive at King’s in the small hours and spend frantic minutes trying to find out where they have taken Silas.
A nurse tries to brush us off, but then she sees the terror behind our eyes and her demeanour softens. She makes a couple of phone calls and she sends us up to the paediatric high dependency unit. I want to hug her with relief: until that moment, we had no idea if we were going to be directed to a ward or the morgue.
Silas is in the far bed, lying so small and still, his face pale, his body connected to a battery of monitors. I lean down and kiss his smooth, warm cheek and bury my face in his neck to inhale his sweet scent.
In the morning, he wakes up and smiles at us. The massive dose of steroids they have administered has reduced the enormous swelling in his brain and his speech is nearly back to normal. He can recall very little about the night before, although he tells us that at one stage he knew he was in an ambulance — he could hear people talking and the sirens blaring.
After an assessment, the surgical team call us into a side room for a meeting.
“We need to operate immediately to remove as much tumour as possible,” says the surgical registrar.
Leaving our son in the operating theatre is one of the hardest things either of us has ever done. If he comes through the surgery all right we don’t know what deficits he might have, whether he’ll even be able to walk or talk. Ben and I walk to the nearest pub and have a stiff drink. We both have a cigarette, although neither of us has really smoked for years. We just need something to do with our shaking hands.
Hours later we get the call to head down to the recovery room.
“We did well. We managed to get about 70% of the mass out,” says the surgeon, a smile on his face. “The rest of it was too close to his motor nerves. It was too risky to touch, but we got the big part out.”
“But what happens to the rest of it?”
“That depends on the pathology. If it’s malignant you’ll have to go down the route of radiation and chemotherapy.” He puts a hand on my arm. “Don’t think about it now. We’ll know more in a few days.”
A few days later we are standing in the hospital playroom, being told that there is no hope and that with treatment our son has 12-18 months. After the consultant leaves, we plaster smiles on our faces and scoop Silas up out of the ward and take him home. He chats away in the back of the car, excited to be going home, oblivious to the tears that drip down my cheeks and make a damp patch on my shirt.
We get home and can’t talk to anyone about the diagnosis. Not even my mother, who’s been looking after the other boys. “It’s not good news,’ I say, watching Silas run into the house. “Don’t ask me any questions. I can’t talk about it.”
That first night, my mind is far away in a deep, dark place. Ben and I can barely communicate. We are like two pinballs crashing around in random directions. At one point, I say that I am glad I have him by my side, that I don’t have the strength for this journey without him. Ben’s reply cuts me deep, even though I know he doesn’t mean to hurt me; he just cannot contemplate the pain to come. “I wish we had never met,” he states simply, as if erasing our history together and mapping out a different life for both of us could remove his agony.
After Silas is diagnosed, I look at people with what I perceive are gilded, perfect lives and I can taste the bitterness. It is difficult not to feel hard done by when you are hit with odds of 250,000 to 1.
Those first few days after Silas’s diagnosis, Ben and I function on autopilot. We take the children to their cousins’ house in Wales, and while they run about on the beach kayaking, skimming stones and eating ice creams, we hold war councils. I need to know what I am dealing with before I meet with the oncology team. Information on the internet is sobering and terrifying. Glioblastoma multiforme, or GBM as it is more commonly known, is a frightening disease. It’s one of the most aggressive cancers in humans and the average survival is one year. Many of those diagnosed only live a few short months. Children and adults who have their tumours fully removed prior to radiotherapy have a greater chance of surviving longer. This is difficult for us to read as Silas has a large portion of tumour left inside his head.
We decide to take charge of his future and the first step is to name Silas’s tumour, to take away the fear it engenders in us. The children are watching TV with their cousins. “Hey, guys,” I say. “We need to think of a name for Silas’s tumour. Something silly. What shall we call it?”
At that moment, Rowan Atkinson walks on screen in a rerun of Blackadder II. His voice echoes out from the TV. “Well, Bob, welcome on board.” Almost instantly, Silas pipes up, “What about Bob?” It’s perfect. Harmless and silly, especially if you picture Rowan Atkinson saying it in that pursed-lip, tight-arsed sort of way. From that moment on we are in a battle with Bob.
We watch Silas from a distance. Every laugh, giggle and proclamation of love is a turn of the screw. We are overprotective and alert. We ply him with medicine. At the same time we don’t want to stop him living and we bite our tongues as he cycles down steep hills and climbs rocky headlands. He looks just like any other 10-year-old boy on the beach in swimming trunks, running through the surf, except for a striped beanie hat protecting his stitches and the enormous S-shaped scar that cuts a swathe through the hair above his left ear. His brothers show him no allowances and grapple with him on the sofa – their pent-up resentment at being stuck with Granny for a week while he enjoyed both of us in hospital coming to the fore.
What happened to the other children? They didn’t die, did they? I don’t want to die!
Silas is a child first and foremost, and for him thoughts of cancer are fleeting and ephemeral. Something he doesn’t want to think about and, bar the constant rounds of medication, could easily forget in that wonderful, innocent way that children possess. The way a scraped knee can be instantly erased by a sticky lollipop.
At the hospital we walk into a room lined with strange faces — paediatric oncologists, clinical oncologists, clinical fellows and neuro-oncology nurses. Silas is unfazed by all the attention and allows the doctors to prod and poke him.
The consultant is pleased with his progress and the plan is to proceed with radical radiotherapy in combination with a chemotherapy drug called temozolomide, which is well tolerated in children. There is talk of immunotherapy trials. We learn there is another surgeon willing to go back in and remove the rest of the tumour. We have to sign consent forms that you would baulk at for yourself, let alone your child. Forms that state we are putting him at risk of hearing loss, strokes, growth problems, hormone problems, cognitive problems and, believe it or not, future brain tumours. Radiation to the brain can wipe nearly 10 points off an individual’s IQ level, but we have no choice and put pen to paper. But, for the first time since Silas’s diagnosis, Ben and I feel buoyed with optimism. Maybe, just maybe, we can beat Bob. Silas goes back to school and life returns to some semblance of normality.
Less than a month later, the bubble of hope we have encased ourselves in pops with a bang. Two days before Silas’s radiation is due to start, he complains of a sudden headache on the way to school and vomits into a bag in the car. We sit in the hospital room in horror. The consultant says those dreaded words, “Let’s go somewhere more private to have a chat.”
The tumour has regrown. “He’ll have to go back on steroids and the radiotherapy will probably just be palliative now.” Tears fill my eyes. All of a sudden we are back at death’s door. The consultant puts his hand on my arm. “I’m sorry,’ he says. “I really am.” I shrug him off. I’m fed up with people saying they are sorry.
We tell very few people about the true diagnosis. Our priority is always Silas. We don’t want him to find out that he’s going to die. Not until he has to.
There’s only one time that Silas asks outright if he’s going to die. We are sitting in the waiting room at the Royal Marsden a few months into his chemotherapy treatment and I have picked up a book with lots of drawings in it by children with cancer. As we turn the pages, Silas becomes quieter. At the back of the book is an epilogue. It reads: “These pictures were all drawn by children receiving treatment for cancer. At the time of going to print 17 of these children were still alive.”
Silas draws in a sharp breath next to me. “What happened to the other children?” he asks. “They didn’t die, did they?”
“I guess they must have,” I say. His mouth drops open and his face pales. “That’s not going to happen to me, is it? I’m not going to die.” He shakes his head vigorously. “I don’t want to die!” I look at my 10-year-old son and see the panic building behind his eyes. I decide the time isn’t right. Nowhere near right. “That’s why we are doing all this treatment.”
The weeks stretch into months. Silas’s next scan is good. Bob has shrunk, against all the odds. We celebrate. We pack our bags and spend Silas’s 11th birthday by climbing a rocky promontory in Ibiza and carving our initials in a tree trunk. As we sing Happy Birthday and Silas blows out the candles on his chocolate cake, my heart clenches.
In September, just over a year after he had first been diagnosed, our bubble bursts for the final time. Silas’s scan is due on Friday 13th — not a good omen — and the day before he has his first headache for months. He sits in the bathroom as I give him some paracetamol. “I don’t think I’m going to have a good scan tomorrow,” he says, hanging his head. “Maybe not,” I agree, keeping my tone light. “But it won’t be the end of the world.” Just the end of our little world, I think to myself.
A few days later, the phone rings. Ben comes into the kitchen and I put the man on speakerphone. “We have the scan results ...” He pauses. “It’s not good news, I’m afraid. It looks as though there is a widespread increase in abnormality.”
“So that’s it, isn’t it?” I ask. “It’s 100% fatal on relapse, isn’t it?” There is silence on the other end of the phone. “Isn’t it?” I repeat. A beat. “I’m afraid so.”
The tumour is like an octopus that’s spread its tentacles into every corner of our son’s brain.
A new chemo regime requires Silas to have an operation to insert a port-a-cath under the skin of his chest to infuse the new chemo drug vincristine. It will be easier than constantly battling to insert cannulas into his arms — or so we hope.
“Maybe you should think about not putting the port in,’’ says the doctor. “We can continue the chemo without the vincristine. There is some evidence that it doesn’t add much to the treatment and he will tolerate the other two drugs better.”
Neither Ben nor I want to put Silas through an unnecessary operation, but we still want to fight tooth and nail for him. We know now that we are working with months, maybe even weeks, and we cannot stave off the inevitable, but suddenly every extra day seems vital.
“No, we want to continue with the plan. Let’s give him the best chance,” says Ben.
The outcome is a traumatic operation for both Silas and ourselves, which ends up with Silas screaming at us and telling us that he hates us and that we are torturers.
How does a parent choose when to stop trying to save their child from a monstrous death? How do you choose when is the right time to let go? When that child is laughing and joking with you and telling you how much he loves you? When his body is failing so gradually that even he is not aware? Where do you draw the line?
That day we chose the operation haunts me; the doctor tried to tell us it was time to stop, but I was unable to listen. All I can think about is not being able to hold my boy in my arms ever again; never dancing around the kitchen with him; never having him bound into my bedroom with a smile on his lips first thing in the morning; never getting to hear him say one more time, “I really, really love you, Mummy.” How can I live without those things? How can I even begin to? Am I just trying to keep him alive for my own selfish reasons?
One afternoon, Silas and I sit on the bench in our kitchen. He plays with my hair and somehow he gets onto the topic of dying. “Mummy, I would hate it if you died.”
“I’m not going to die, darling, not for a long time yet.”
“I know, but I couldn’t bear it if you did. I love you too much. I couldn’t be happy without you.”
“I’d be an old lady by then and you would have your own family.” I look away knowing this will never happen, and turn back with a smile plastered on my face. I find myself telling him in great detail that in my imagination dying is like going to Narnia — that time will flow differently in heaven for the person that dies, so that a few decades on earth will pass in the blink of an eye in heaven. I tell him the parting will be brief and magical. I tell him all this, hiding the silent scream that is tearing my heart in two. I wonder all the time whether this talk of death is a way of preparing himself. He must know at some level what is happening to him, even if it is only in his subconscious.
Silas’s balance deteriorates, a slight list to the left increasingly visible, like a ship gradually taking on water. He takes a few tumbles down the stairs. Both Ben and I want Silas to die at home. It may be impossible to keep him out of hospital, but the nursing team have assured us they will help us if they can.
Silas no longer has control over what comes out of his mouth. He says what he thinks, even if that thought is unkind or inappropriate. Silas showers us with kisses. Love oozes out of his every pore. At bedtimes, he constantly calls us back for kiss after kiss, just one more, then another one, then a last one. I whisper in his ear as he sleeps about how much his mummy and daddy love him. He rolls over without waking and says clearly: “Same — I love them so, so much.”
At the end of November, scans show that Bob is in a rush to finish his mission.
Silas no longer walks. He lurches, bouncing off the walls, bumping into doorways, tripping over his own feet. I find him standing in the downstairs loo, swaying gently from side to side, a look of confusion on his face.
“What is it, darling?” I ask. He wrinkles his brow. “I . . . I can’t remember what I was doing.” A few days into the Christmas holidays, we put the tree up and start to decorate it. Silas sits on the sofa. He doesn’t engage. He keeps looking towards the door of the room as though he can hear some distant noise that we cannot, as though there’s an exclusive party happening elsewhere that he’s keen to join. Standing on the top of a ladder putting the star on the tree, it hits me in the solar plexus. I double over in agony as the realisation explodes inside me. He’s leaving us. That’s exactly what is happening. His journey somewhere else has begun. My heart pounds. I’m not ready. I’m not ready.
The day after we put the Christmas tree up, I ring the oncologist and say we have decided to stop the chemo. He’s not surprised and agrees that it sounds like the right decision. I hang up the phone and am left wondering for how long exactly he’s felt this way. Why has it been left to us, Ben and me, who have no experience of the course this disease takes, to make the call?
“I love you, Splodge,” says Ben, kissing his cheeks. “I really love you, Daddy,” says Silas, his eyes wandering towards the window.
“What about Mummy?” says Ben. Silas pulls his gaze back and looks at him blankly. “Aren’t you going to tell Mummy how much you love her?” says Ben, nodding his head in my direction. Silas’s eyes focus on my face lying on the pillow next to his. “I really, really love you, Mummy.”
“Ditto,” I say, rubbing his nose with mine. I hold my thumb and forefinger a small distance apart. “But just a smidgen more.”
He smiles. Those are the last words he ever speaks to us. Simple and perfect.
A Mighty Boy: A Mother’s Journey Through Grief by Sarah Pullen is published on August 24 (Unbound £15). All Sarah’s proceeds will be donated to the Brain Tumour Charity. To donate, visit thebraintumourcharity.org