‘So, what are you saying?’ JP asked.
‘As we explained before embarking on the treatment, radiation works to shrink the tumour in roughly 80 per cent of DIPG cases, but you’re one of the unlucky ones. I’m so sorry, I can’t imagine how disappointed you both must feel here today.’
It felt as though I was sinking under water, a current was pulling me down to a place where everything was muffled and slow. When we had first been told our daughter would die, it was as if there was a buffer there, it was almost like my brain had refused to believe the news we were being delivered, but now there was nothing. Time was up. This was happening.
JP stood up off his chair and exhaled loudly. ‘You need to do something.’ He was panicked, his words came out thick and fast.
‘I’m so sorry, there’s nothing more we can offer you,’ Dr Sharma said. ‘I don’t think it would be fair to Robyn to carry out any more radiotherapy when I wouldn’t be hopeful that it would offer any more benefits. You mentioned that some of the symptoms have worsened in the last few days—’
‘But you can’t just sit back and watch her die!’ JP was aghast. ‘You can’t just give up on her – you’re her doctor!’ He stabbed his finger accusingly at Dr Sharma. ‘You took an oath to help save lives. You have an obligation. You have to do something!’
‘I’m so sorry,’ Dr Sharma replied.
The guilt assailed me like a smack in the face. I had put my daughter through all of that radiation, poisoning her body, and for what? I had watched her get distressed by needles, watched her cave to exhaustion, nausea, growing weaker by the day, but I had told myself it would be worth it because we would get a brief reprieve from the tumour. But it was all for nothing.
‘Can I ask you something?’ I asked.
‘Of course, Sarah.’
‘How long have we got?’ My voice sounded small and faraway as though I was at one end of the tunnel and Dr Sharma was at the other end.
‘It isn’t an exact science… but I have seen patients live for several more months with this type of tumour and I’ve seen patients deteriorate rapidly. Unfortunately, I can’t give you a definitive answer.’
‘But what should we do?’ JP blazed. ‘We can’t just do nothing! If this was your child, what would you do?’
Dr Sharma paused thoughtfully and steepled his hands together. ‘Taking everything into account, if it was my daughter, I think I'd take her home and cherish the time we had left together.’
We left Dr Sharma’s room and walked back out towards the car park. I thought it was strange that I didn’t cry. It was as though my body was too broken to make tears. Was it the shock or had I already accepted that Robyn was going to die? Then the guilt got me, what kind of a mother gives up on her own daughter?
‘Come on, I can’t let you drive yourself. I’ll take you home,’ JP said as we found ourselves lost and broken in the hospital car park once more.
‘But what about my car?’
‘We’ll sort it out later, don’t worry.’
I sat in JP’s BMW without argument. I didn’t care about the logistics of collecting my car at another time; I was just glad to have someone take control. I don’t think I could have driven myself or I would have been a danger on the roads. I noticed a long blonde hair clinging to the seat. It was obviously Megan’s. I plucked it up, rolled down the window and watched it sail out onto the air.
‘They can’t just give up on her.’ JP slammed his palm against the steering wheel. ‘There has to be something we can do.’
I knew he was in shock at the outcome of the MRI, but I think deep down I had known coming into the hospital that morning that it wasn’t going to be good news. I had seen my baby fading away, one tiny piece at a time. Maybe it was a mother’s instinct.
We both fell silent then, each lost inside our own heads. We hit traffic coming up to the East-Link Toll Bridge and we crawled along, moving just a few metres until we’d stop again. I watched frustrated drivers sigh and talk hands-free into their phones in the cars beside me. There was a time when heavy traffic would work me up too, but now getting annoyed by traffic seemed so trivial compared to my worries. How I wished that was the worst thing in my day.
JP’s phone rang as we crossed the wide mouth of the River Liffey and Megan’s voice filled the car speaker. She sounded young and airy and carefree. It was so at odds to the way my head felt right now.
‘What time will you be home?’ she asked.
‘I’ll call you back, I can’t really talk right now,’ JP said quickly.
‘It’s a simple question!’ she barked. ‘I’m going out tonight with the girls.’
‘Well, enjoy it.’
She sighed heavily. ‘That’s why I was wondering when you’ll be home, can you give me a lift to Claire’s house?’
‘I’ll call you back later, Megan, okay?’ he said and then he pressed the end-call button.
‘How’s it all going?’ I asked. I couldn’t help myself.
He shrugged. ‘Megan is…’ He paused. ‘Well, she’s younger, y’know?’ he said eventually. He looked across at me in the passenger seat. ‘My head’s all over the place lately,’ he added, as if that explained everything.
Eventually, JP pulled up outside our old home and silenced the engine. I stared at the house where we had welcomed both our children, the house that was full of memories at every turn. This was the place where we had returned home from honeymoon and JP had swooped me over the threshold and very nearly dropped me because we were laughing so much. This was the place where we had both shed so many tears when pregnancy test after pregnancy test was negative, but where we had squealed and danced around the room when we saw two pink lines on the test that was to be Harry and then Robyn too. This was the place where I had paced the floorboards feeling tired down to my bones as I soothed fractious newborn babies and it was the place where JP would come home from work and surprise us all with a takeaway on a Friday evening. This was the house I had put so much time and love into, to make it not just a house, but a home.
A few years back JP had arrived home with a glossy marketing brochure for a new development that was being constructed along the seafront in Malahide. We had gone along to the show house and, as we had walked around the property, which was far more spacious than our own, with its tasteful interiors and views across Dublin Bay, JP had wanted us to put down a deposit there and then, but I had been more reticent. In the end, I had told him that I couldn’t leave our home simply because it was our home. He had laughed and I knew he thought I was being ridiculous, but the truth was so much happiness and joy echoed between the walls of our house and I couldn’t bear to think of another family living there amongst our memories, no matter how silly that might have sounded.
We both stayed sitting in the car; we needed time to gather ourselves before seeing Robyn. I knew seeing her was going to kill me. That’s when it all would become real.
Eventually, I climbed out of the car and began walking up the path. JP followed after me. It felt as though I was pulling my legs through wet concrete with every step. I stood on the doorstep for a moment looking at my door with its sunny yellow paint and wondered how I was supposed to look Robyn in the eye now.
‘How’re things?’ I said to Fiona when we went inside. The heavenly smell of baking filled the air.
‘We had a great morning.’ Fiona nodded in the direction of the living room where, through the glass, I saw Robyn was watching Paw Patrol wrapped up in a blanket. ‘I think she’s tired, but she’s a trooper. So how did it go?’
I shook my head, unable to voice what we had just been told.
Fiona’s face collapsed and she bit down hard on her lip. ‘Oh, Sarah,’ she said, throwing her arms around me as I released the tears and sobbed into her shoulder.
Suddenly, a blonde head stuck around the door frame. I choked back tears when I saw her sweet, innocent face.
‘Hi, Mammy and Daddy,’ she said, smiling at us both. ‘I made-ded you a cupcake!�
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My heart sank to the floor, this was the cruellest thing. She was my world.
I looked at Fiona and JP and we all had tears in our eyes as we struggled to keep it together. I walked over and lifted her up into my arms and breathed her in. She smelled of icing sugar and marshmallows. I motioned for JP to come over and the three of us enveloped one another into a hug.
Harry
I hate Jamie O’Connor. He’s so mean. He came over to my house today and we were playing FIFA on the PlayStation and I was Liverpool because it’s my PlayStation and he had to be Chelsea and I was winning 4–0. Then he said he was going home because he didn’t win. And I said he was just a sore loser and then he said, ‘Well, anyway your sister is a weirdo.’ He said, ‘She looks really funny, like this,’ and he started pulling his eyes with his fingers and doing an impression of Robyn and it wasn’t very nice because I know she looks really weird and her face is all crooked and it looks like it’s falling down on one side and sometimes I don’t know where her eyes are looking, but Mam said you’re not allowed to say that out loud because it’s mean. So, I got really mad and the white dots came in my eyes, I couldn’t help it and I ran at him and tackled him on the sofa and then Mam came in and saw what was going on and she shouted at me to stop. Then she told me to say sorry to Jamie, but he started it, so I said, ‘I’m not saying sorry to him.’ Mam asked me what happened, but I couldn’t tell her because I knew it would make her sad, so then she told me to shake hands with him, but I wouldn’t do it, so she called Jamie’s mam to come collect him and then she sent me to my room even though it was all his fault because he started it.
20
Scientists say that time is an illusion, that in reality everything that has ever been or ever will be is happening simultaneously right now at this very moment, but when time is cruelly snatched away from you, you know that time is a very real, tangible thing.
In the days after we were told that the radiation therapy hadn’t worked, I found myself making daily pleas with God, bargaining with him, telling him things I would do if he could just give me more time. I knew there would never come a time when I would be ready to say goodbye to my darling daughter, but it certainly wasn’t now.
In the end, we just kept going. Because that’s what you do when you don’t know what else to do, you just keep going. I thought of the movie Finding Nemo that we had watched with the kids on TV a few months ago. At one stage, Dory had said to Marlin: ‘Just keep swimming.’ The kids had loved saying it over and over again for weeks afterwards. Well, that’s what we had to do right now, just keep swimming.
The last days of April would soon be pushed out by the long, heady days of May. Late-evening birdsong and the sound of children’s laughter playing on the green outside filtered in through the open windows. Then there was the plinky music of the ice cream van as it came around every evening or the upbeat songs on TV advertising family holidays – everywhere there seemed to be reminders of happier, carefree times and what we were losing. I would see a mother scolding a child in the supermarket because they wanted sweets and I longed to tell them that it didn’t matter, just buy them the sweets, because life was too fragile. I would give anything to go back to those days again.
JP was spending a lot of time at the house with us. His job had told him to take as much time off as he needed, but I wondered how his absence at home was going down with Megan. He never said much about her and I didn’t ask. Sometimes he would bring Joan and Richard over too and they would sit and help Robyn with a jigsaw or play with her Frozen dolls. We tried to do something small together as a family every day. We let her decide what she wanted to do, and it was usually a trip to Malahide Castle to see the butterflies in the Butterfly House or a walk along the beach with an ice cream on the way home. They were always simple, ordinary things, but as the warm sunlight hit her cheeks, a smile would spread across her face. One day, she had decided that she wanted to go to playschool to see Lily, so I had taken her in, and she had sat doing circle time with the other children while I stayed at the back of the classroom letting her have her independence with her friends. My heart had twisted looking at all the other children who had already grown up so much in the time that Robyn had been absent. They would all start school together in September, a day that Robyn should have had too. We should be buying her uniform and letting her choose her school bag, but those milestones were being snatched away from us.
Her legs had grown progressively weaker and now she wasn’t really able to walk any more. I had taken her old buggy out of the garage and JP would push her along. Her speech had become difficult to understand and it broke my heart when she was trying to tell me something and I wasn’t able to decipher what she was saying. I knew it frustrated her too because I could see a sheen of anger in her eyes which completely broke my heart. The worst part about all of this was that she understood everything, her mind was still perfectly fine.
I could see Harry was struggling to accept these changes in his little sister too.
‘Why can’t Robyn talk properly?’ he had asked me one day.
I still hadn’t been able to bring myself to tell him that Robyn was dying. I was worried that once we told him, things would change between them and I wanted him to have a normal relationship with his sister for as long as he could. His world was going to alter so much, he was going to learn the agony of losing a loved one at an age where no child should have to experience that pain. I couldn’t even begin to imagine how the loss of his younger sister would shape the man that Harry would grow into in the future. But I also knew we couldn’t put it off for much longer.
One evening, I had just tucked up Harry and Robyn in their beds and was finally sitting down after cleaning the kitchen when I heard the doorbell go. I saw it was JP in the security peephole. He still flitted between disbelief and anger, whereas, although I couldn’t say I was ready for what was coming down the tracks towards us, I guessed I had reached acceptance. He was still hell-bent on doing something. He spent his nights trawling the internet for anything to keep our daughter with us.
‘JP?’ I said in surprise as I opened the door. He had been over to see the children earlier in the day, so I hadn’t been expecting him.
‘I need to talk to you,’ he said, blustering inside.
‘What’s wrong?’ I asked.
‘I think I might have found something, Sarah…’
‘What do you mean?’
‘A cure for Robyn.’
Instead of feeling hopeful, my heart sank as if it had been poured with lead. I was used to hearing him tell me about different alternative therapies that he had found on the internet and usually he agreed with me that they were a bunch of quackery.
‘It’s a treatment being pioneered by doctors in Arizona in the US,’ he continued.
‘Arizona?’ I repeated, full of scepticism.
‘They have developed this protocol using a combination of intra-arterial chemotherapy and immunotherapy and it’s having good results.’
I looked at him blankly.
‘They basically inject chemotherapy agents through the artery in her leg and it leads directly into the brain,’ he explained.
This sounded different and he had my attention. ‘But why didn’t Dr Sharma tell us about this if it’s saving lives?’ I couldn’t believe our medical team would have overlooked any realistic options. They had always fought hard to give Robyn every chance without allowing us to raise our hopes.
‘Exactly! They just gave up on her. Took the easy option and left her to die.’
My head was spinning. ‘But has it worked? Has it saved people?’ I felt my heart rise, but I warned it to be cautious. It couldn’t survive being crushed any more.
‘Well, it’s an ongoing trial… there are kids from all over the world being treated there at the moment. I looked up the parents’ stories and although nobody has beaten it yet, they seem to be getting more time.’
My heart fell again down to the floor. ‘But if nobo
dy has survived it, JP, then why would you even consider it?’ I was angry at him for giving me false hope that I couldn’t deal with right now. ‘Radiotherapy didn’t do its job because her tumour is so aggressive, you don’t know that this will work either and I’m not using Robyn as a guinea pig.’
‘But it might, Sarah! Even if there’s only a tiny chance, we have to try it—’
‘JP, stop it! You’re looking for a miracle that doesn’t exist. Nobody is experimenting on my child. They could kill her even faster if they made a mistake or got the dosage or the drugs wrong. I want to do all I can to make sure her last days aren’t full of hospitals and needles, you saw how much she hated the radiotherapy. I want her with me all the time – I’m not putting her on a plane to America.’
‘You’re giving up on her,’ he shouted at me angrily.
I felt white-hot fury burning through my body. ‘No, I’m not! If it was you or I that was sick, we could choose to go down the path of experimental treatment, but she’s our daughter, we have a duty to protect her and make her last days as easy as possible for her.’
‘I just don’t get you at all, Sarah,’ he said, shaking his head in exasperation. ‘Why won’t you do something that gives her a fighting chance?’
‘Don’t you see? It’s because I love her that I’m doing this. It doesn’t give her a fighting chance – it just prolongs the agony for her, the misery for us. You heard what Doctor Sharma said – nobody has survived it! You need to accept it, JP, this is happening. We are going to lose her. Our baby is going to die.’
The Last Days of Us Page 12
