‘With DIPG, even in the very early stages, it remains impossible to treat. Please don’t blame yourself; most of my patients are much further along before their parents bring them to me. Even if we found it at the very earliest stage, I would still be giving you the same outcome today. It’s a very fast-growing cancer.’
‘But you have to do something for her!’ JP was angry now. He was pointing his index finger at the team of consultants. ‘You’re doctors! You can’t just leave her to die! We have to fight it!’ He stood up and towered over the doctor who had delivered the news and I briefly wondered if he was going to lash out at the man who was shattering our lives with his words.
‘The site of the tumour in DIPG patients makes it difficult to treat. We can offer radiation treatment to help prolong Robyn’s life, but it is palliative care not a cure. You have to be aware that the tumour always comes back. You might buy yourselves a few months, but you need to decide whether you want to put Robyn through that for the short time she has left.’ He explained it calmly, in a matter-of-fact way that told me he was used to delivering bad news. He had probably even been trained to do this in medical school.
‘How long have we got?’ I asked in a voice that didn’t sound like my own.
‘In my experience of DIPG, patients survive on average nine to twelve months post-diagnosis.’
The words were like a sucker punch in the gut. A few minutes ago, chemotherapy had seemed like the very worst option available to me, but now I would gladly take that option, I would have done anything at all to give my daughter a fighting chance.
‘So, you’re saying that no matter what we do, Robyn is going to die?’ JP was shaking his head.
‘I’m so sorry,’ the doctor said. ‘We’ll give you some time on your own. We’ll be outside if you need us.’
Then the team began to file out of the room. And that was the moment a part of me died.
13
The air was sucked from my lungs and I couldn’t breathe. My brain had seized. It was too full of horror as JP and I walked wordlessly out to the car park. Neither of us could bear to speak to the other. What could we say? What words could we offer one another in the face of what we had just been told? I felt as though I was walking through a tunnel of mud. My legs were heavy and weak, one foot went in front of the other, but it was like I had no control over my body. I knew I couldn’t see Robyn’s sweet face just then, I thought I would break if I looked at her. I wouldn’t be able to hold it together. I would dissolve like sugar in hot water and an avalanche of tears would burst forth from me.
The black words had poured into my eyes, my ears, my mouth, until I couldn’t see, hear or speak. Everything was dark and blurry.
I was aware of people around us: trollies being pushed down corridors, patients sitting scrolling on their phones as they sat on the plastic waiting-room chairs, the nurses busy on their feet, the receptionist joking with her colleague about her holiday diet being gone out the window, but now they all took on an other-worldliness. There was a surreal quality to their interactions, like I was watching them on a black-and-white TV set, with the sound muted. My world had ended since walking into the hospital, and yet everything still went on as normal.
We continued out of the hospital until we reached a bicycle shelter and we both stopped walking. The full meaning of the doctor’s words hit me with brutal force. It felt as though I was being repeatedly punched every time I tried to process what he had told us. He had said my daughter was going to die. Bang. She wouldn’t survive this. Bang. The wind left my chest as the realisation hit me and I began to slide down against the plexiglass of the shelter until I was sitting on the damp concrete littered with discarded cigarette butts. I heard myself cry, a piercing wail, and it startled me. It didn’t sound like me.
Things like this happened to other people. You watched their stories on a TV chat show, you cried with them at the pain of their loss and you squeezed your babies extra tightly that night, but this wasn’t meant to happen to me.
I turned to JP. ‘Tell me this isn’t really happening?’ I begged.
JP began to sob too and crouched down beside me on the ground. Then I knew it was real. That our reality was a nightmare.
I felt suffocated by the shock and grief. Suddenly I began retching, my whole stomach heaved as I was sick onto the ground beside me. Vomit spilled violently out of me until my stomach was empty.
‘I’m sorry,’ I whispered, feeling embarrassed as I began wiping my mouth with my hand. I rooted in my handbag for the packet of baby wipes that I always carried around with me.
‘Hey, it’s okay,’ he said, putting his arm around me, and for a moment the familiarity of his touch was a balm; all the old hurts were temporarily suspended as I allowed myself just to be in his embrace.
‘I never thought we would be facing something like this,’ I whispered.
‘They might have got it wrong, Sarah; scans always have shadows. By their very nature, they are full of light and shade. How many times have you read a story in the newspaper about people having their scans misread or two doctors giving different opinions on the same scan? They’re notoriously hard to interpret.’
‘They sounded pretty certain… you saw the size of the bloody thing.’
‘Look, either way, we’re not just going to take his word for it, we can get a second opinion. I’m going to research it – I’ll find the best person in the field. There has to be treatment somewhere, even a clinical trial. Ireland isn’t at the forefront of these things; I bet you they’ll have something for her in the States. You’ll see.’
How I longed for his blue-sky optimism; all I could see were black clouds shrouding my world from any light. I was sinking so far underneath the weight of my pessimism, I needed him to pull me along with him, no matter how futile it seemed in the face of the doctor’s words.
I noticed that the leaves were starting to flourish on the trees around us, gone were the stark, bare branches, now replaced with green buds bursting with curled baby leaves. A lone gull caterwauled through the sky. Daffodils made a golden carpet in the flower beds around the hospital. I usually loved this time of year when the world began to emerge after a long winter. Bright spring sunlight hitting my cheeks with a tinge of warmth in its rays. It always spoke of the hope of better days to come, but today it felt mocking. How did everything keep going when my world had ended?
‘What are we going to tell her?’ I asked, looking fearfully in the direction of the hospital where, behind its walls, our daughter was being minded by a nurse and had no idea that her world was so perilous. I was her mother – I was the one who told her that everything would be okay. We were her protectors, JP and I – we were the ones who were meant to keep her safe.
‘Nothing! Say nothing to her yet, please, Sarah. They might have made a mistake. I just need to get a plan together.’ JP got up from the ground and leant forward onto one of the steel bike stands, gripping it with such ferocity that his knuckles turned white. ‘I’m going to fix this. I promise you I’ll do whatever it takes to protect her.’
I was grateful for his fight; I needed to cling to his strength. Whatever hurts had gone between us melted away because, like me, I knew that he would do everything that he possibly could to keep our precious daughter with us.
14
The street lights beyond the window cast a shadowy glow around the bedroom. I saw every hour on the clock on my bedside table as 2 a.m. became 3, and 3 became 4. The words from the day before kept tumbling around inside my head: ‘tumour’, ‘inoperable’, ‘terminal’. My one overarching thought was: why us? Why had it landed on our doorstep? Why our Robyn? I didn’t wish this diagnosis on any family, but why did it have to be our baby girl? Why couldn’t it be some family in some faraway country that I would never hear about? Then I would feel gut-wrenching guilt for wishing this upon someone else.
We were told we could bring Robyn home with us and take time to let the diagnosis sink in. We had an appointment with
her medical team in a few days to discuss palliative care options.
JP had followed Robyn and I back to the house in his car. Fiona had taken one look at me as I came through the door and knew something was wrong. Between everything that had happened, I had forgotten to call her from the hospital like I had promised. I had taken her upstairs to my bedroom, while JP stayed downstairs with the children, and told her the same devastating news we had just been told. I was still in a weird mixed state of disbelief, but I also knew deep within that this was now our truth.
‘Oh, Sarah, no! Are you sure?’ she had asked, shaking her head as I broke the news to her. She seemed certain that this must be an error. I knew how she felt because I had felt the same way in that claustrophobic little room as the medical team had told us.
I had looked up at the ceiling in a bid to stop myself from crying, but the tears still trickled down along my face.
‘I’m sorry’ was all I could manage. I don’t know why, but I had felt the need to apologise. It was a strange thing, breaking bad news to people, because although this was my agony to bear, as Robyn’s mother, I felt responsible for causing her this pain. And how were we supposed to prepare Harry for this? He adored his little sister. His world had already been shattered by JP’s departure; how could he deal with this too? It was too much for a nine-year-old to process. I knew that over the next few days and weeks I would be shattering the lives of so many people who loved Robyn with this same news. I would be replaying this conversation with relations, friends, teachers, and guilt sat on top of my own heartbreak like oil atop a murky puddle.
I’d reached out and put my arms around Fiona and felt her trembling in my arms.
‘I’m sorry, Sarah, I just don’t know what to say to you…’ she’d said in disbelief. She’d wiped her dripping nose with the back of her hand. ‘I just don’t believe it – beautiful Robyn. Are you sure?’ she had asked once again.
I had swallowed back an impossibly large lump in my throat, then explained it to her carefully like the doctor had done for us, giving the bare facts without putting any meat on the skeleton, leaving no cause to be hopeful. I had needed her to get this because I knew I couldn’t deal with it if she tried to tell me I was wrong or to give me false hope. I had watched as she digested all the information, exactly like I had done. The stages of denial, shock, anger all flitting through her eyes. And my heart broke, again and again and again. For Fiona, for JP, for myself, but mostly for my darling Robyn.
Eventually, at 6 a.m. I pulled back the duvet and climbed out of bed. I crept along the landing, taking care not to wake the kids. I tiptoed until I reached Robyn’s door, then I gently pushed it open and went inside. The room was painted sunshine yellow, she had chosen the colour herself the summer before. Her night light scattered stars across the ceiling. Under the soft canopy that was draped above her bed, sleep caressed her small body. I moved closer until I was stroking her smooth skin and brushing her blonde curls back off her face. Her shallow breaths barely registered underneath the bed linen, so I placed my hand on her chest just to feel the reassuring rise and fall as she breathed. How could that menacing tumour hide behind such a beautiful façade? How could it so cruelly destroy the part of her that thought and loved, hoped and dreamed? The part of her that made her who she was – my Robyn.
I looked down at my daughter, she was so peaceful, so blissfully unaware of what lay ahead for her. I lifted her duvet and climbed in beside her, curling up into her warmth, and it felt as though my heart was being fractured into millions of tiny pieces.
JP and I walked around in a haze over the next few days and, after we got over the initial devastating shock that our daughter was terminally ill, we gathered again with the medical team led by Dr Sharma to talk through the prognosis and the palliative treatments available to us, should we wish to go down that road.
I was so grateful for JP; he was able to talk to the doctors and ask all the questions that needed to be asked, while I was still in disbelief that this was happening. He asked them about clinical trials, but we were told that Robyn wasn’t an eligible candidate as her particular type of tumour was very aggressive. They assured us that they would inform us should anything suitable arise in the future. I couldn’t help thinking it was more of a platitude than a real cause to be hopeful. Dr Sharma was adamant that nobody survived a DIPG. Even a 1 per cent survival rate would have given me a lifebuoy to cling to, but we were being given nothing. He said most DIPG patients lived between nine and twelve months after diagnosis, but some died sooner. The figures were bleak; 90 per cent would die within the year and the remaining 10 per cent usually passed away within the second year post-diagnosis. He calmly explained to us in that time her quality of life would deteriorate rapidly. Firstly, she would lose her balance, then she wouldn’t be able to walk. Her eyesight would go, her speech, her swallowing. Day by day, we would lose another bit of our precious daughter. Essentially, she would be locked in. Not only would we lose our daughter, but we would have to endure seeing her fade away before our eyes. Our darling girl was being robbed of her very essence. The thought of it was cruelly overwhelming. JP argued that at some point in time there would have to be a first survivor of DIPG and why couldn’t it be Robyn? She had been our miracle baby once before, why not again? But the team quashed his bravado with serious yet sympathetic faces that said they had had this same conversation before with other parents, as they told us they weren’t hopeful of finding a cure any time soon.
Radiotherapy was our only option, but that was merely buying us time – borrowing from the bank of mortality. The medical team were at pains to point out that this was palliative care and not a cure. It seemed every flicker of hope was quenched before the flame ever lit. And so, with nothing more that could be done, until we decided whether we wanted to start radiotherapy, we went home.
Every time I thought about the road ahead, my heart felt as though it was breaking all over again. I remembered when Robyn was a baby sleeping in her crib when sometimes she would be so still that I would have to put my hand on her chest for reassurance that she was alive. There was always that split-second worry, followed by a flood of relief whenever I felt her ribcage pull away from my hand as she drew breath into her tiny lungs, but there was a time looming ahead when her lungs would stop doing their job and those very worst fears would be realised. What would I do when my arms yearned for the weight of her? When my nose craved her smell and my fingertips needed to feel her warm skin underneath my own? How were we supposed to say goodbye to her? How could we ever let her go?
15
The following Saturday, we rose, and I made pancakes for breakfast. As the children ate, I sat at the table in a daze watching them. Harry and Robyn couldn’t believe their luck as I let them spread layer after layer of Nutella on their pancakes and then heap on the marshmallows without any of my usual warnings about going easy on the sugar. I could see them looking at one another with raised eyebrows, wondering why I wasn’t stopping them as they loaded spoons of Nutella straight from the jar into their mouths. I took a moment to look at Robyn, chocolate smeared all over her giddy face as she ate her pancakes. Except for her drooping eye, you would never know there was a thing wrong with her.
After a while, I heard the doorbell go and the kids ran into the hall. They knew their dad was calling over. Although JP still had a key, he obviously thought better of using it. He was coming over to see how Robyn was doing and we both knew that we also had to discuss the radiotherapy. We needed to make the decision sooner rather than later as we had been warned that the tumour could progress rapidly while we dithered, making our minds up.
‘Daddy!’ they cried when they opened the door.
‘Hey, there,’ he said.
‘Come in,’ I invited.
He stepped inside and took them up, one in each arm, and tickled them until they wriggled out of his grip.
I stood leaning against the frame of the kitchen door watching the sheer joy written all over their fac
es as JP played with them. I knew they were enjoying the recent thaw in what had been a tense few months between us, although they didn’t know the reason why. Whenever he had come to see the children, they had always been exchanged on the driveway. I guessed that, to them, by having their dad back in the house there was some sense of having normality restored.
‘How did you sleep?’ JP asked as he followed me into the kitchen while the kids went into the sitting room to watch TV.
‘I didn’t,’ I replied. My head was fuzzy and my eyes stinging from both the lack of sleep and the endless salty tears I had cried since the fateful day we got the news.
‘Me neither,’ he sighed. ‘Will I make us a cuppa?’
‘That would be great.’ I flopped wearily down into a chair.
I watched as JP began filling the kettle and opening cupboard doors as if he had never left. He knew the teabags were kept in the tin to the right of the kettle and the mugs were in the press overhead. Everything had changed and yet some things just stayed the same.
‘Here you go,’ he said, placing the mug down on the table in front of me when it was ready and adding just a dash of milk, exactly how I liked it.
The Last Days of Us Page 8