The Last Days of Us

by Caroline Finnerty

  I didn’t move, it was as though my feet were concreted to the floor. I could see the fear in Robyn’s eyes, and I didn’t want to leave her alone. ‘Go on,’ Louise encouraged. ‘I’ll be right here with her, Sarah.’

  Reluctantly I left her with Louise and went into the staffroom.

  I was beginning to think I was going round the twist. Her bloods had been okay – if something was wrong, they would have shown up something, wouldn’t they? With trembling hands, I immediately called the surgery. I didn’t care if Dr Peters thought I was mad, I just needed reassurance. The bleep in my brain had now grown into a screeching siren. I explained to the receptionist what had happened, and I was so grateful when she put me straight through to his office and I heard Dr Peters’ calm voice on the other end.

  ‘Is that you, Sarah? Is everything okay?’

  ‘Well, it’s Robyn, I’m very worried about her…’ I heard the crack in my voice as it threatened to give way to tears. I explained to him what had happened and about how one of her eyes was drooping, and I knew by his questions that he was concerned. He told me to take her to A & E to be checked out, but he reassured me that it was probably nothing to worry about. He reminded me once again that her bloods had all come back fine. I took a deep breath to slow my heart rate down and listened to this man full of wisdom, with a vast medical knowledge. He was right, I needed to calm down.

  I helped Robyn out to the car. Although she could now walk again, her gait was wrong, and it was like she was leaning to one side. Once she was belted up, I drove to the Dublin children’s hospital.

  She was unnaturally quiet on the journey there – normally she chatted non-stop in the car – and I knew she was scared by what was happening to her body. I thought about calling JP to let him know, but I didn’t want to worry him unnecessarily. Dr Peters had said it was probably nothing serious. I decided I would call him when we were on the way home afterwards.

  When we arrived at the hospital, we went inside and were seen straight away by a middle-aged, rotund triage nurse with a kindly smile who didn’t seem too perturbed as I listed Robyn’s symptoms. We took a seat in the waiting room, decorated with colourful cartoon characters like Peppa Pig and Fireman Sam. I was glad it wasn’t too busy; there was a baby with roaring red cheeks, clearly under the weather, and a boy around Harry’s age came in with a suspected broken arm after falling in the schoolyard. I smiled in solidarity at the other parents, each of us wrapped up in our own worries, wishing we were anywhere else but there.

  While we sat in the waiting room, Robyn was really subdued. She didn’t play with any of the toys in the play area and just sat quietly beside me instead. I took out my phone and began typing her symptoms into Google, but the search results that came back ranged from minor childhood ailments to illnesses that didn’t bear thinking about, so I put my phone back in my bag again. There was no point worrying myself silly. We would find out what was going on soon enough.

  After an hour waiting, we were seen by the paediatrician. He read through the notes on Robyn’s chart given to him by the triage nurse.

  ‘Just to be on the safe side given some of the symptoms you described, I think we should do a brain scan. I’m sure it’s nothing, but I would like to rule out anything sinister.’

  ‘Sinister?’ My head stuck on the word.

  ‘Let’s just get the scan done and then we can see,’ he said.

  ‘We had her bloods done recently and they were fine,’ I added. I was begging him to tell me this was all okay.

  He nodded. ‘I’m sure all is good, Mrs McIntyre, try not to worry, but I wouldn’t be doing my job properly if I sent you home without further thorough investigation. The scan will tell us more.’ He left us alone as he went on his way.

  Just hours ago we had been sitting around the table eating breakfast and now Robyn was going to have a scan on her brain! I couldn’t even begin to get my head around it.

  I left Robyn alone in the cubicle we were waiting in and stepped outside the door into the corridor. I took my phone out of my bag and, with trembling hands, tried to ring JP. It took me three attempts before I finally managed to press the right buttons.

  ‘Sarah?’ he said when he picked up. ‘Is everything okay?’

  ‘You need to come to the children’s hospital…’

  ‘Woah, there – slow down – what are you doing in the hospital? I’m just on my way into a meeting—’

  ‘Robyn collapsed at playschool, so I rang Dr Peters and he told me to come here.’ My voice sounded calm and in control as if it wasn’t coming from me at all. ‘The doctors want to do a brain scan.’

  ‘I don’t like the sound of that.’

  I felt the same but didn’t want to let him know that. If I showed JP my very worst fears, I was worried he would confirm them. That this could be serious. ‘Look, it’ll be fine,’ I said as breezily as I could.

  ‘Right, I’m on my way.’

  ‘Call me when you get here, and I’ll come and meet you.’

  I called Fiona next and told her what was going on and asked if she could collect Harry from school and take him home. She reassured me that Robyn would be fine and made me promise to call her as soon as we had any update.

  A short while later, JP came rushing through the hospital doors. Wordlessly, I led the way back to the cubicle where sunlight streamed in through a small window, making the room feel so hot. Robyn was busy colouring a picture, her face was screwed up in concentration as she worked hard to keep the crayon inside the lines. She looked fine, surely whatever it was that was wrong with her couldn’t be too serious?

  ‘Hey there, princess,’ JP greeted her.

  ‘Hi, Daddy.’ She smiled at him.

  He turned to me. ‘What do you think it is?’

  ‘Look, you know what doctors are like, they have to cover themselves – they have to err on the side of caution. Let’s not jump to conclusions and worry ourselves stupid when it’s probably nothing,’ I said. ‘Look at her, she’s fine.’ We needed to stay calm here. This was all going to be okay, because it had to be okay. The alternative was unthinkable.

  ‘You’re right,’ he agreed. But despite his best reassurances, I could see the fear inside me was mirrored in his eyes.

  A short while later, we were told they were ready for her MRI. Robyn screamed while they inserted the IV cannula required for the general anaesthetic that she needed to help her lie still due to her young age and I felt a maternal pull to take her in my arms, run out of the hospital and stop all of this. As they wheeled her trolley away and it was swallowed by the flap of a set of double doors, I found myself making the sign of the cross.

  ‘She’s going to be fine,’ JP said, noticing me. His arm reached out and we had an awkward moment as it looked as though he was about to hug me. We both watched his arm as it hovered mid-air and then he thought better of it and it fell back limply by his side.

  ‘Yeah,’ I said, trying to sound bright.

  Despite all that we had been through in recent months, I was glad he was by my side right then. It was comforting to have another person who knew Robyn just like I did; who loved her from the moment she came into this world.

  We sat back on the chairs beside Robyn’s empty bed and waited. My mind raced trying to think of something to say to JP. It made me sad to realise we had spent twenty-five years together and yet I couldn’t think of single thing to talk to him about. The one topic we had in common was our reason for being in the hospital, but we were both deliberately not going down that road. Suddenly, his phone rang, jolting me out of my thoughts.

  I listened to the one-sided conversation for a moment and quickly picked up that it was Megan.

  ‘I’m not sure,’ he said, standing up and starting to pace around the small room, which made it feel even more claustrophobic. ‘I don’t know how long these things take… Well, why don’t you get a taxi then?’

  He was becoming increasingly irate with every sentence he spoke.

  ‘It’s not
every day your daughter has an MRI on her brain!’ he said, hanging up abruptly. He tossed the phone down onto the bed. ‘Sorry about that,’ he mumbled.

  ‘Megan?’ I enquired.

  He nodded, clearly too incensed to talk.

  ‘If you have somewhere else you need to be, I’m going to be here anyway…’ I said.

  ‘No, this is the only place I need to be…’

  I nodded and we each fell silent.

  It was less than an hour later when Robyn was wheeled back in and I was relieved to see she was already coming out of the anaesthetic. I reached over and stroked her smooth, plump cheek. A small patch of drool pooled at the corners of her mouth. Her eyelids flickered open as she took in her surroundings.

  ‘How did it go?’ I asked the nurse straight away.

  ‘She was great,’ she said without answering my question.

  ‘But the MRI, how did it look?’ JP pressed.

  ‘The doctor will be around to see you shortly,’ she said with a face that gave nothing away. More waiting and worrying; there seemed to be so much waiting.

  ‘This isn’t my bed, Mammy,’ Robyn said, tugging on the taut linen.

  ‘No, darling, you’re in the hospital, remember?’

  ‘But I’m not sick!’ she protested.

  ‘We all know that,’ I said conspiratorially, ‘but the doctor just wants to be extra sure.’ I gave her hand a squeeze.

  ‘Silly doctor,’ she said, shaking her head. ‘Can we go home now?’

  ‘Soon, we just need to see the doctor for a minute before we go.’

  ‘I never want to come here again.’

  ‘I know, pet, it’s all over now.’ I rubbed her hand.

  An hour later, we were still waiting to speak with the doctor. It felt interminable. Minutes felt like an eternity when it was the life of your precious daughter that hung in the balance. I just wanted to get her home, where she belonged, far away from this place. Every time a doctor came near, my stomach flipped – although I wanted to get it over with, I was also petrified of what they might say. In a perverse way, I wished I could hold them back forever.

  ‘There’s nothing wrong with her,’ JP said once again as we both watched her do dance actions to some kids’ show she was watching on his phone.

  I really hoped he was right. I was swinging through waves of ‘of course this will be fine, she’s not sick’ to desperate thoughts of ‘what if…?’ That was a place where I couldn’t let my head go.

  Before I could answer him, I saw the nurse from earlier on approaching us through the glass window facing on to the corridor. My heart tightened and I inhaled sharply. Please let it be good news, I begged internally. I tried to read her face for any giveaway signs, but it remained impassive.

  ‘Mr and Mrs McIntyre, thank you for your patience.’ She had a half-smile on her face. Surely, if it was bad news, she wouldn’t smile, I thought.

  I felt a renewed sense of optimism and I let myself breathe out again. I rolled my shoulders back and took a deep breath. Robyn was fine. The blood tests had said so.

  ‘Why don’t you both come with me, the doctors would like to talk to you alone. I will sit with Robyn for a few minutes,’ she said, nodding towards the bed.

  ‘What is it?’ JP asked quickly.

  ‘If you could both follow me down the corridor—’

  ‘Can someone please just tell me what is going on?’ I begged. Why did they need to take us into a different room? I felt the hairs on my arm stand to attention and my heart started to thump faster.

  ‘Just come with me, Mrs McIntyre, and the doctor will explain everything.’

  We followed her into a small room, where there was a team of doctors in white coats waiting for us – not just one person, like we had been expecting. There was a tiny window at one end, too high up to see out of, and a worn leatherette sofa ran the length of the room. The wall was covered in posters advertising counselling services and health warnings. A chest of toys stood in the corner and my eyes landed on a box of tissues that was sitting on the coffee table. Tissues meant tears. They wouldn’t bring us here if it was good news, a voice said in my head. I took a deep breath, feeling it snag in my chest.

  ‘What’s wrong with Robyn?’ JP asked as soon as we had closed the door behind us.

  ‘I’m Dr Sharma,’ one of the men began, ‘and these are my colleagues, Dr French and Dr Stevens.’ He paused. ‘Mr and Mrs McIntyre, I think you should both sit down…’

  12

  A shiver flooded through me and my legs felt weak and jellylike. This wasn’t good. The air felt as though it was being sucked out of my lungs and I couldn’t replace it. I was spinning on a merry-go-round that I couldn’t get off.

  ‘We’ve carried out the scan on Robyn’s brain,’ Dr Sharma was saying now, and I felt my senses sharpen. ‘There is no easy way to tell you this, but unfortunately the diagnosis isn’t good. I’m sorry to tell you that your daughter has a diffuse intrinsic pontine glioma, or DIPG for short.’

  ‘I’m sorry?’ JP asked. His eyes were blinking rapidly, his forehead lines sitting down on his eyebrows.

  ‘It’s a very rare type of tumour that grows in the brainstem of young children. In Ireland, we only see on average three new cases every year. We’re not sure exactly what causes it, but recent research suggests genetic mutations may have a role in the tumour formation.’

  I just heard ‘tumour’ and tumour equalled cancer. Was he saying my daughter had cancer? It felt as though an air-raid siren was blaring in my head.

  ‘Robyn has cancer?’ I asked, the word getting stuck in my throat. How was I meant to use a terrifying word like that in the same sentence as my precious daughter?

  ‘I’m afraid so. I have brought some scans to show you.’

  He held up the MRI scans, black and white and grainy, and I wasn’t altogether sure what I was looking at or even if I wanted to see. It reminded me of when Robyn was a baby and we looked at her ultrasound pictures, trying to make out whether we were looking at a leg or an arm. The consultant lifted another scan and then I saw it. A large white area contrasting against the darker image. There was no mistaking it. It was the size of a tennis ball, looming and menacing. I cupped my hands over my mouth and sucked in sharply. It felt as though there was no more air left in the room for me.

  ‘This here is the tumour,’ he continued, using a biro to point it out to us as if we could miss it. I couldn’t believe that it had been cruelly growing inside my daughter like a silent invader doing damage. She’s going to fight this, a voice inside me said suddenly. Robyn is tough; she’s going to get through this. Cancer was not going to rob me of my beautiful daughter.

  ‘So, what happens now? When can you operate? Get it the hell out of my daughter’s brain,’ JP asked.

  I was grateful that at least one of us was capable of speaking and talking rationally to them because my head was spinning. I couldn’t even try to articulate words at this time.

  ‘Unfortunately, it is an inoperable tumour due to its location in the pons region of the brainstem. That’s the area that controls breathing, eating – all the body’s most basic functions. We can’t access it and, even if we did, the damage we would do to such an important part of the brain would mean she would have no quality of life.’

  ‘So, are you saying that we have to put her through chemo?’ JP asked, scanning the faces of the medical team for answers.

  I gulped. How could I subject my baby girl to that gruesome treatment? I had watched my own mother fight a battle with two rounds of chemotherapy, awful and raging, until she finally said the chemo was worse than the cancer and she didn’t want any more treatment. She died six months later. That had been awful, but she was seventy-six, how could I let my four-year-old daughter go through the same ordeal? This wasn’t what I wanted for my child, not by a long shot, but even in the minutes since this awful situation had been thrown upon us, I knew I would do everything in my power – even chemo – to help her beat it.

&nb
sp; The doctor paused and chose his words carefully. ‘Unfortunately, chemotherapy isn’t an option for this type of tumour due to its location. The anticancer agents cannot cross the blood/brain barrier.’

  I felt as though I was sinking, through the chair, through the floor, back down through the soil. I was far, far away from this tiny white room and this doctor with his hideous words.

  ‘Well, what do we do then if she can’t have surgery or chemo?’ I heard JP asking, panic lacing his voice. His fight had left him, I could hear how delicately his words danced upon a knife-edge of fear.

  ‘I’m sorry to have to tell you this, but DIPG is always fatal.’

  No, no, no, no, no. The blow rained down upon me. Fatal? Robyn? This was all wrong. My daughter was back on the ward doing the dance moves to some YouTube video; she wasn’t dying. I looked back at the scan on the table in front of us again. How had that been lurking inside my daughter’s head and I had been unaware? Why hadn’t I noticed it?

  ‘But cancer isn’t like when I was a kid, is it?’ I heard JP asking. ‘Survival rates are much higher nowadays.’

  The consultant nodded his head in agreement. ‘That’s true for many kinds of paediatric cancers, but in the case of a DIPG, it is a terminal illness.’

  ‘Surely in some other countries, they know more about it,’ JP demanded. ‘What about in America, they’re probably years ahead of where we are?’

  ‘Unfortunately, I wish I had better news for you, but there have been no survivors for this kind of tumour internationally. I’m sorry, I realise how devastating this must be for both of you.’ His voice was kind but measured. He was used to delivering this kind of news and although it was clear that this was hard for him, he would go home tonight, maybe tell his wife about the couple to whom he had had to deliver a terminal diagnosis, and maybe his wife would purse her lips and shake her head in sympathy at life’s cruelties, but then they would eat their dinner and it would be life as normal for them.

  Just breathe, I told myself. Deep breaths. In and out. In and out. Tears pushed through and rolled down my face. I felt as though I had let Robyn down. Maybe if I had reacted quicker, when she was first sick. Or if I had noticed something earlier, we could have treated it differently and we would be getting better news here today. I was her mother; I was supposed to protect her. If I had found it sooner, if I had acted faster, this could have been different. I had to ask the question. ‘Do you think if we had come to you earlier, things could have been different?’ My voice was trembling, afraid of what he was going to say to me. If this was my fault, I would never be able to live with myself.