‘Please, Robyn, we have to do it to help make you feel better,’ I coaxed. ‘Remember all those headaches and the way you’ve been getting sick in the mornings? Well, this is going to help stop all of that.’
‘I’m sorry, sweetheart,’ the anaesthetist apologised, screwing her face up in concentration as she studied Robyn’s small hand. ‘I’m having a hard time finding one. I need to try again.’
‘Make them stop!’ Robyn’s whole face was red, snot ran down onto her top lip. She kept trying to swipe her arm away from their grip, but the nurse who was assisting had her pinned down tightly.
‘We’re just trying to help, sweetie, I promise,’ the nurse tried to cajole. ‘It’ll be all over in a minute.’
My stomach churned.
Robyn turned her head to JP then. ‘No, Daddy, make them stop! Tell them to stop!’ She wrestled and lifted her tiny body off the bed as JP tried to hold her down. ‘Mammy and Daddy, please… Tell them to stop it. I said please, Mammy!’ She was looking at me, her small face full of hope that by using her best manners we might stop all of this, and I thought I might be sick. I felt as though I was betraying her. I was her mother. I was supposed to protect her, but I had signed the consent forms to allow this to happen. JP was so hell-bent on trying the radiotherapy, but I still wasn’t convinced we were doing the right thing for our daughter and I wasn’t sure I ever would be. Were we being selfish putting her through all of this just so we could have more time with her?
JP reached over and squeezed my hand tightly and I knew that he was struggling too.
Eventually, the anaesthetist cried, ‘I’ve got it!’ and soon the sedation began to work as the fight left her small body and she lay back onto the pillows as the anaesthetic took effect. I saw white prints mirroring her fingertips had been left behind on my skin. I automatically blessed myself as Robyn was wheeled in to start her radiotherapy.
‘Why are you wasting time praying?’ JP asked. ‘Surely now, after everything that has happened, you can’t believe in all that crap? I mean, what kind of a God would do this to the people he supposedly loves?’ He paced around the floor.
I self-consciously lowered my hand again and wrapped my arms around myself. ‘It gives me strength, okay? It gives me something to cling to when my whole world seems to be slipping away from me.’
He lowered his eyes to the floor. ‘I’m sorry,’ he apologised, shaking his head. ‘I shouldn’t have said that.’
We walked back silently together to the ward. I sat down on her empty bed, clutching Mr Bunny tightly to my chest, breathing in her smell. Rays of sunlight streamed in through the window; it was a beautiful spring day out there. On the way to the hospital, we had driven along the Strand Road, with the red-and-white-striped Poolbeg chimney stacks standing like candy canes in the distance, while the safe haven of Dún Laoghaire Harbour sheltered the far end of Dublin Bay. We had passed Sandymount Strand, where the tide was so far out that the endless honey-coloured sand seemed to stretch to infinity. We should have been out there letting Robyn run wild and free along the beach while she still could, I thought. We should have been treating her to ice cream sundaes while she was still able to eat. Instead, she was going to be trapped in a hospital day after day, looking at mint-green walls, being prodded and poked and dealing with the effects of a general anaesthetic. I kept asking myself whether we were doing the right thing? Was it fair to do this for the short time we had left with her? It would take its toll on an adult, let alone a four-year-old child.
‘Are you okay?’ JP asked.
‘I don’t think I can do this,’ I whispered.
‘Yes, you can, Sarah. The first day was always going to be tough. She’ll be back with us again in no time.’
‘I hate this though – it’s not fair, JP. It’s awful knowing what that tumour is doing to her tiny body, but then we’re subjecting her to all of this too. The general anaesthetic, the radiation – it’s too much for a four-year-old.’ Although JP was doing his best to be a support, he didn’t live with us any more, he wasn’t going to be there when the radiation was too much for her small body to take and made her sick. He wasn’t going to see the fear in her eyes as I drove her to the hospital every morning. He wasn’t going see the full brutal impact of it all. But I would.
‘I know it’s hard, but we’re doing the right thing; we can’t give up on her.’ He put his arm around me, and I sobbed and sobbed against his chest.
As soon as I saw the nurse wheeling Robyn back from radiotherapy, my heart soared. It was the same feeling as when she had been placed in my arms for the first time after she was born. That day, as the midwife had handed my precious daughter to me, wrapped up like a present in a white towelling blanket, I had felt like I had just been given the greatest gift.
‘Mammy and Daddy,’ Robyn croaked a short time later.
I sat up straight away and placed Mr Bunny beside her. ‘Sweetheart, you’re awake.’
‘I’m sorry I made you sad, Mama.’
I quickly wiped my eyes as I felt guilt fill me up. ‘No, sweetheart, you didn’t – it’s not your fault. Come here, I need a hug.’
I needed to keep my feelings in check, Robyn had enough going on without me upsetting her too. I needed to be strong for her no matter how awful it was at times. And it was awful, we were going through the darkest days of our life and the hardest part was knowing that there was worse to come. There was no light at the end of her tunnel.
JP filled the cup beside her bed with water and guided a straw towards her mouth. She took a sip and lay back down again.
‘You did it, baby girl, I’m so proud of you.’ I leant forward and kissed her forehead, her skin like silk against my lips.
She fell back asleep once more while her body tried to adjust. The nurse had said she might drift in and out for a little while.
‘How are you feeling?’ JP asked when she opened her eyes again a few minutes later.
‘I don’t like it here, Daddy.’ She looked down and caught sight of the cannula in her hand. ‘Ow, take it out!’
‘It’s okay, love,’ JP reassured her.
‘No, Mammy,’ she screamed and started to claw at her hand. ‘I don’t like this place.’
‘Shush, baby,’ I soothed.
‘I’m scared,’ she sobbed, ‘I want to go home to Harry.’
Each word she said broke my heart a little more. ‘We’ll be allowed home soon, pet, just once the nurses are happy,’ I explained.
‘Look, they gave you a sticker,’ JP said to distract her. He took out the reward chart that was going to document her daily radiotherapy sessions where she would get a sticker for each one.
‘Oh, it’s a pink one.’ Her face fell. ‘Pink isn’t my favourite colour. I want the lello one!’
‘Well, maybe tomorrow you’ll get a yellow one,’ JP cajoled her.
‘I’m not coming back here ever again!’ she wailed.
I felt a stone sit in the pit of my stomach. ‘Of course not, pet,’ I promised in that vague way that parents do sometimes when you hope your child will forget. How was I going to explain to her that we had to come back again tomorrow and the next day and the day after that again? This place was going to become like a second home to us. Whenever my kids had something worrying them or scaring them, I was almost always able to fix it and if I couldn’t, I could usually find the right words to soothe them, but this time I couldn’t. There was nothing I could do to help her.
17
In the rear-view mirror, I watched as Robyn’s eyes closed down, before jerking back open again, then they dropped down once more, until finally they were just too heavy for her to stay awake any longer as she fell asleep. She was clutching tightly to Mr Bunny in one hand and her reward chart from the hospital in her other. She wanted to show JP the glittery star the nurse had given her to mark the end of her first week of radiotherapy.
She was exhausted. It wasn’t just the tumour that was being blasted, day after day a little more of her was wi
ped out too. She wasn’t my usual sparkly daughter. I wasn’t sure if it was the tumour or the treatment, perhaps it was a combination of both. I guessed having a daily general anaesthetic didn’t help either. Even though she had dropped her daytime nap when she was two years old, now every day when we came home, she would fall into a deep sleep.
I was tired too. It had been a stressful week taking Robyn to the hospital every morning.
‘Why are we here again?’ she had asked as I drove into the hospital car park for our second session. ‘I want to go to playschool and see Lily!’
‘We need to get more of your special medicine,’ I had explained, helping her out of the car.
She had stopped dead, planting her feet on the ground. ‘But I already did-ded it yesterday, Mammy! I was a good girl yesterday, why do we have to come back here again?’ she’d protested. How I had longed to lift her up into my arms and run away from this hospital and the awfulness that lay ahead of her.
‘We need to get the special medicine every day, sweetheart, I’m sorry.’
‘No, Mammy, I’m not going.’ She shook her head and folded her arms across her chest stubbornly.
I had tugged her arm gently, but she rooted her two feet firmly to the tarmac and refused to budge.
‘I feel better now, I don’t need any more medicine.’
‘Please, Robyn, we can go to the toyshop afterwards,’ I had bribed.
‘NO!’ she’d screamed. ‘I’M NOT GOING BACK IN THERE!’ Then she’d lain down on the ground and thrown a tantrum like I had never seen her do before. Her legs and arms flailed everywhere. I had always felt lucky that I had skipped the terrible twos, Robyn had been an easy toddler. Fiona had always joked that she’d make up for it as a teenager. I’d felt a stabbing through my heart as I thought of yet another thing we would never get to experience with her. I could see people were walking past and staring at us. I had felt like screaming at them to get lost, they didn’t have a clue what was going on in her world.
I had taken a deep breath and bent down onto my hunkers to her. ‘What is it, pet? Are you scared?’
‘I TOLDED YOU THAT I’M NOT GOING IN THERE,’ she’d screamed loudly into my face.
An older woman had walked past and tutted loudly at us.
‘What?’ I’d shouted after her. ‘What’s your problem?’ I hadn’t been able to help it. The words were out before I knew it.
‘We wouldn’t get away with that in my day.’ She’d pursed her lips together in disapproval. ‘She needs a good clip around the ear!’
Robyn had stopped her tantrum and looked up at me, suddenly fearful. She wasn’t used to seeing me getting into confrontations with strangers.
‘It’s okay, I’ll get up now, Mammy,’ she had said obediently, already climbing up from the ground. She had taken my hand and we proceeded through the car park and into the hospital without another word. She had walked quietly into the hospital with me every morning since, and I hated the way she had so quickly become resigned to the fact that this was to be our new daily routine.
Even though it had only been a week, in a perverse sort of way, I had already got used to our daily hospital visits and had my own routine of sorts. After Robyn was wheeled down for her treatment, I would grab a takeaway coffee from the hospital coffee shop. I would have a chat with the girl working there while she frothed milk for my cappuccino and then I would carry it back to the ward to wait. I knew my way around now without having to stop and read the signs. I also knew that if I had to make a phone call, the reception on the ward was awful, but if you stood under the atrium in the hallway, the signal worked perfectly. I could imagine how we would feel institutionalised by the time we reached the end of the course of radiotherapy.
I was really looking forward to the weekend and having two days to ourselves without any hospital visits before we would start into the second week of her course. It was also St Patrick’s Day that weekend and, although Robyn wouldn’t be up to going into Dublin city centre to stand on O’Connell Street and watch the parade, I had bought green face paint and some silly shamrock-shaped hats, and I was going to throw a small party for the children at home.
I turned the nose of the car into the driveway, silenced the engine and, even though it felt cruel and went against all my motherly instincts, I woke Robyn up. I wanted her to eat something, it seemed as though she was surviving on sips of juice and thin air at the moment and I was worried about her. It was more important now than ever that she keep her nutrition and energy levels up. I was terrified she might catch a cold or a stomach bug because I knew her immune system would really struggle to fight off an infection. Each day when we came home from the hospital, I would make her favourite pancakes in the hope that I could coax her to eat a few bites. She needed all the strength she could get right now, her body needed nourishment.
‘Are you hungry?’ I asked.
She shook her head listlessly, too tired even to speak.
I carried her into the house and placed her down on one of the kitchen chairs. I set to work cracking the egg into a well in the flour and then poured in the milk, all the time whisking the mixture together. I poured the batter onto the hot pan, but when I turned around again, Robyn had fallen asleep with her cheek flattened against the table. I sighed, knowing she would sleep for the whole night now.
I scooped her up into my arms and carried her up the stairs. I placed her down on the bed and covered her with the duvet. I sat down on the edge and stroked her wan face.
‘How’s she doing?’ a voice from behind me asked, causing me to jump.
I turned around and saw it was JP bringing Harry home. I hadn’t heard them come in.
‘Sorry, I hope I didn’t frighten you – Harry let me in,’ he added. ‘I just wanted to see how she is today.’
‘Hi there,’ I said, straightening up. ‘She’s exhausted. She hasn’t eaten a thing. I tried to make pancakes for her, but she was asleep before I had even finished making the first one.’
‘The poor kid,’ he mumbled. He rubbed his hands down over his face and I knew this was just as upsetting for him too. I guessed JP felt like he never really got to see her awake any more. Even when he dropped into the hospital on his lunch break, Robyn was usually still snoozing off the after-effects of the anaesthetic. ‘Well, hopefully we’ll find out soon that it has shrunk the bloody thing completely and it’ll be worth it.’
Although it was still bright outside, I left her night light on because she hated the dark and then we both crept out of the room. I stopped on the landing and turned to JP.
‘Do you think we’re doing the right thing?’ I asked, as I questioned our decision again for what felt like the millionth time. Right now, the side effects of the treatment, coupled with the cocktail of drugs that she was on, seemed far worse than any of the symptoms the tumour had caused. Were we being selfish and putting our needs to have more time with her ahead of her need to live the best life she could for the short time she had left? What kind of quality of life was this for Robyn when the poor child spent most of her time asleep? And so the questions kept looping around my head. I wished there was an answer to them because nobody ever seemed able to tell me the ‘right’ thing to do. I felt I was locked in a washing machine stuck on a cycle of guilt. It was eating me alive. Was it worth it? The question had been on my mind a lot lately, especially over the last few days as the cumulative effects of the radiotherapy, trips back and forth to the hospital, and the time spent waiting around on the ward, were all taking their toll on her.
‘Don’t you want as much time as possible with her?’ JP raised his eyebrows at me incredulously.
‘Of course I do, why are you even asking me that?’ I snapped. I was tired and worried. I knew my patience was in limited supply. ‘But we have to do right by her. She’s completely wiped out; her little body and immune system must be under so much pressure.’
‘She’s just had a week of radiotherapy! Of course she’s feeling out of sorts, Sarah. What do you
expect?’
‘But it’s gruelling – if it is going to ruin her last few months, then we need to ask ourselves if it’s worth it. We can’t be selfish in this – I just need to make sure we are putting her first.’
JP shook his head at me. ‘I can’t believe you’re even saying this, Sarah. What has got into you? We decided on this together!’
‘I don’t want to make this any harder on Robyn than it already is. Isn’t it enough that this horrible thing is growing inside her brain? A general anaesthetic every day for five days in a row? That would take its toll on anyone, let alone a child already battling a brain tumour! She hates all of this. She’s scared, JP, our little girl is so frightened, and I hate myself for not being able to fix it and take away her fears. I hate the fact that we are the ones putting her through this trauma.’ Needles, cannulas and medicines had become daily parts of her life. But what was even worse was that now she wasn’t even putting up a fight, it was like she just accepted it, resigned to the fact that nobody was going to listen to what she wanted or be her advocate and that broke my heart. I hated all the decisions that the DIPG diagnosis had thrown at us. Really hard, life-altering decisions and the worst part was there was no right or wrong answer.
‘And you think I don’t?’ he blazed. ‘Do you think I like watching my daughter going through all of this? Do you think I can’t see the fear in her eyes as doctors and nurses loom over her? Don’t you think I wish with every cell in my body that I could put myself in her shoes and take away all of the pain and the fear? But she is fighting a bloody brain tumour, Sarah! For some shitty reason, this awful thing has landed on our doorstep and we can either sit back, do nothing and watch her die or do all we can to fight back. I know what my decision is.’
The Last Days of Us Page 10