‘Remember that time in the hospital when you gave her her first bath?’ I couldn’t help but smile at the memory.
JP laughed then, the corners of his eyes crinkling like sunrays. ‘I had forgotten about that. She was so tiny and slippery. It was like trying to hold on to a bar of soap in a swimming pool.’
I felt tears push forward into my eyes as I remembered. These days, happy memories were always quickly obliterated by sorrow. Although I loved recalling better times with our family, reminiscing could also be a cruel taunt of all that we had lost and were still losing. We both looked down at our beautiful daughter, floating weightless in the warm water, grinning up at us with those perfect baby teeth on display. I knew that despite everything that had happened between us, we were just two people who loved our daughter very, very much.
33
JP and I were barely able to look at one another as we went into the hospital for our appointment with Dr Sharma later that week. JP had insisted on being there, claiming he had some questions that he needed to ask. I knew JP thought that I was using Dr Sharma for my own needs to build a case against him – he just couldn’t accept what we had been told. We had both been warned by our legal teams not to mention the proceedings in case we prejudiced our case. JP still had the money sitting there in the JustGiving account and he was just waiting for the green light to use it. We only had days until our next hearing with Judge Williams and, although JP and I never discussed it whenever we saw each other, I had noticed subtle changes in him. His demeanour didn’t seem to be as confident as it had been previously. Geraldine had mentioned that perhaps his team were having difficulty getting their medical evidence to stack up after all, but it still didn’t allay my fears.
We’d met one another in the car park and, rather than use the buggy, JP carried Robyn in his arms from the car into the hospital. As we neared the doors, I watched her body stiffen and her eyes widened with fear. Anxiety pressed down on top of me until it felt as though it was suffocating me. ‘It’s only a short visit today, sweetheart, I promise we’ll be back at home before you know it.’
After a while, Dr Sharma came around and did his assessment on Robyn. I tried to read him as he made notes, for any clues to what he was thinking.
‘Now, JP and Sarah, if you’d both like to follow me,’ he said when he was finished.
We left Robyn in the care of a nurse, while we followed him down the corridor to his office. When we reached the door, I let Dr Sharma go ahead for a moment while I held back to talk to JP.
‘Just promise me we won’t have any dramas,’ I warned before we went inside.
‘I’m entitled to ask questions, Sarah!’ he retorted.
We went inside and Dr Sharma gestured for us to sit down.
‘So how’s Robyn been doing?’ he asked.
‘She’s doing good,’ JP answered straight away.
I felt enraged, that was a blatant lie! I shot him a look, but he wouldn’t meet my eyes. I was sure Dr Sharma could feel the charge of tension in the room between us. The anger was so palpable you could chop through it. I cut across JP and filled Dr Sharma in on her decline since our last appointment as he listened carefully, taking notes here and there. Out of the corner of my eye, I could see JP’s face was clouded in anger as I spoke.
‘And how are her pain levels?’ Dr Sharma continued.
‘She seems to be doing okay,’ I said. ‘We’re managing so far with paracetamol and ibuprofen.’
He nodded.
‘I wanted to ask you about the treatment clinic in Arizona,’ JP began when I had finished. ‘The doctors there have had good outcomes with other DIPG patients…’
‘I’m aware of the clinic you’re talking about, yes…’
‘Well then, why aren’t we trying it for Robyn?’ JP demanded.
‘The clinic you are talking about appears to be using a protocol of intra-arterial chemotherapy and some other methods – I say appear to be because they have never published their data or submitted it for peer review, nor will they let other medical professionals examine their work. They have had similar success rates to children undergoing palliative radiotherapy – the tumour may regress temporarily, but it always comes back. And the answer to the million-dollar question is that none of the patients they have treated have survived.’ He shook his head. ‘I’m afraid I couldn’t recommend it as a treatment option.’
‘But some of the people got extra time with their children, so even if it doesn’t cure her, there’s a chance we could have more time with her, isn’t there?’ JP protested.
‘From my assessment today, Robyn is very weak, JP. Even if you decided to embark on this highly experimental treatment, you would need a medical professional to certify her as fit to fly and I can’t see anyone willing to sanction that at this stage. The other option would be an air ambulance but, cost aside, assuming you had the funds in place, in my honest opinion, to be quite frank about it, I don’t know if she would even survive the flight.’
‘But if it was your daughter, wouldn’t you want to try it?’ JP tried again, unwilling to accept what Dr Sharma was telling him.
‘In my medical opinion, going by the tumour progression in her last MRI, she doesn’t have much time left. As well as a medical professional, I’m a father too, JP, so I can imagine how awful this is for you to hear, but if Robyn was my daughter, I would take her home and spend our last days peacefully together.’
There it was, laid out in the starkest of terms. Beside me, I watched as the words assailed JP like bullets. His face fell as his last hope was snatched away. It came like a crushing blow. Whereas I had already started to accept that we would lose Robyn, he was only reaching that place now. I realised then just how deeply in denial he had been. His belief that he would be able to save her had been so strong and, despite everything that had happened between us in recent weeks, I couldn’t help but feel sorry for him.
‘How long are we talking?’ JP asked and I could hear a crack in his voice where despair threatened to rush through.
‘I would estimate you have just weeks left with Robyn.’
We both gasped as it felt like a sucker punch right into our stomachs.
Weeks. Weeks. Weeks. The word looped around inside my head. Weeks was what you used to count down to Christmas or towards your summer holiday, not your daughter’s life. It was so close. Although I had known this day would come, it still felt like a shock.
‘I know this is a tough question for parents to think about, but I have to ask it, have you thought about your preferences for end-of-life care?’
We both looked back at him dumbfounded. My stomach lurched. Oh God. I had been so busy worrying about losing her that I hadn’t allowed myself to think about her death. Where would it happen? What would it be like? I had held my mother’s hand as her chest rattled before she had taken her last breath and quite frankly it had been terrifying. Even though she had had seventy-six years of life experience behind her, she had still been scared, but Robyn was too young to understand what was happening to her. Suddenly, I was panicked at the thought of this happening to Robyn and the air seemed to have left my lungs. My hands grew clammy and the room seemed to be spinning around me. Just concentrate on breathing, I told myself. In. Out. In. Out.
‘It’s okay, Sarah,’ Dr Sharma said, obviously noticing my distress. ‘You won’t be on your own, you will have support through this. Have you thought about whether you would prefer Robyn to go into a hospice or if you would like her to be at home?’
‘At home.’ JP and I both looked at one another and answered in unison and I was glad that at least we were united on this.
‘Okay, well then, you will link in with St Theresa’s Hospice in your area and they will guide you through this. I’m so sorry, JP and Sarah, both as Robyn’s doctor and on a personal level. I’m very sorry medical science has let you both down, but hopefully a cure will be found in the not-too-distant future.’
I nodded, not trusting myself to speak. I he
ard JP swallow a lump in his throat as Dr Sharma shook both of our hands and then we left his room for the last time. As we walked out into the corridor towards the room where Robyn was waiting for us with a nurse, it hit me all over again; the injustice and frustration of the situation rained down upon me. We were on mile twenty-six of our marathon and I wasn’t sure I could keep going any more.
JP suddenly stopped dead in the middle of the floor and a man muttered impatiently as he had to swerve to the left to avoid him. I could see tears were streaming down his face. The bricks that had built his wall of anger had now been torn down and he was left crushed and broken amongst the debris.
‘I-I-I don’t want to give up on her.’ He turned to me sobbing with every word that left his mouth. ‘I ca-can’t believe this is happening, Sarah,’ he said, shaking his head in disbelief.
Tears fell down my own face as I saw his heartache mirror my own. Betrayals, legal battles and hurtful words were cast aside as I walked over and put my arms around him. We stood sobbing in the corridor as people continued to walk past us, each wrapped up in their own lives while ours had just ended. JP clung on to me and I held on to him just as tightly because I knew we were both afraid that if we let go, we would drown underneath the weight of all of this.
34
Rain ran down the windscreen as the wipers screeched to clear it again. JP was driving us home and I sat in the back seat with Robyn, who had fallen asleep before we had even pulled out of the hospital car park. It reminded me of the day we had brought her home from hospital as a newborn. I had had Harry in his toddler seat on one side of me and Robyn in her infant seat on the other and, as JP had driven along, being extra cautious when pulling out of junctions and taking care over the speed ramps, I had sat in between them both feeling so happy and full of gratitude that after all the years of yearning for a baby, here I was with the two most beautiful children in the world. JP had turned around at one point when we were stopped at traffic lights and smiled at the three of us together in the back seat and I don’t think I had ever felt a contentedness like it.
Beyond the drizzle-spattered window, I saw a family with a roof box and bikes stacked on a rack on the back of their car, obviously on their way to catch the ferry for a holiday on the continent, and my breath caught. Everywhere I looked, there were painful reminders of all we were losing. Although Robyn was the one who was ill, we too would be dying a slow, lingering death as we tried to live our lives without her. How could we possibly survive it? Would I look at Robyn’s classmates every year as they moved up through the school feeling angry and cheated because she should be there too? Would I be able to walk through the girls’ clothing section in a department store knowing my daughter would never get to grow into those sizes? How was I meant to look at her friends, watching them year after year, graduate, get married and even have children, knowing that we had been robbed of all that? What would I say whenever people asked me how many children I had? Would I say one or two? If I said, ‘I had two children, but one died’, then I was opening up a discussion that nobody wanted to have, whereas if I said ‘one’, it would be easier to close down the painful conversation. But I didn’t want to betray Robyn by pretending she never existed – I wanted her memory to live on forever. I wanted people to know that although she didn’t live for a long time that I was her mother and I loved her, and she would always be my child even when I didn’t get to hold her any more.
When we pulled up at the house, JP opened the back door of the car and gently lifted Robyn up in his arms. He carried her up the driveway and Harry came running out to meet us.
‘Hi, Robyn,’ Harry cried. ‘We got you this in the toyshop,’ he said, showing her an Elsa doll. ‘Fiona took me earlier. I picked it myself,’ he said proudly.
She opened her eyes briefly, but closed them again and I could see the confusion on his small face as he tried to understand why her reaction was so muted.
‘She’s just a bit tired,’ I assured him. The trip to the hospital had wiped her out. Every little thing took so much out of her now. I felt an overwhelming need to cry and bawl and scream at the unjustness of it all. It wasn’t just JP and I who were losing Robyn, but Harry too and Fiona. Joan and Richard, her little friend Lily. So many people loved her and would be broken by this.
‘Shall I carry her up to bed?’ JP asked.
I nodded. ‘She’s exhausted.’
I followed them up the stairs and JP automatically went to go into Robyn’s old room.
‘She sleeps in our room now,’ I said. ‘I mean, my room,’ I mumbled, feeling my face grow hot and wanting the ground to swallow me up at the mention of the bed we had once shared together.
I opened the door for him, and he lifted her into our ex-marital bed and tucked her up underneath the duvet. A piece of my heart broke as I watched her sink down onto the pillow, her eyes closing almost instantly. We were going to have to endure seeing more little pieces of our daughter vanish until one day she would be gone altogether, and it seemed to be the cruellest torture.
JP kissed her on the forehead, and we crept out of the room and stood on the landing. Neither of us were ready to go back down the stairs to face Harry yet and put on a mask to reassure him that everything was okay.
‘Oh God, Sarah, we’re really going to lose her…’ JP said as tears filled his eyes. ‘I’m not ready,’ he whispered. His whole body began to shake as sobs wracked him once more.
I put my arm around his shoulder and guided him into Robyn’s bedroom so nobody would hear us. I closed the door behind us and we both sat down on the side of her bed. Her soft toys and dolls all sat on her bed and her princess costumes hung on the coat stand in the corner of the room. ‘I know,’ I said. ‘I’m not ready either, I don’t think I ever will be. I feel so angry and cheated and robbed. It’s all so unfair. The whole bloody lot of it. I’m angry at God for giving us this child only to take her away four years later. Why would he do that?’
Tears now streamed freely down his face. ‘You can’t possibly still believe in God after this?’
‘I don’t know any more…’ I admitted.
‘Why us? Why is our Robyn being taken? I didn’t think this could happen to someone I loved – I thought my love was enough – like this couldn’t possibly happen to us. You know when you hear a family talking about something like this happening to them on the radio and you think how horrible it is and you think about them for a few minutes afterwards, but we’re not meant to be the family!’
‘Believe me, I’ve spent so many nights lying awake thinking the exact same things, but I’ve come to the conclusion that there’s no explanation, it is just crap.’
‘Mam? Dad?’ we heard Harry call from downstairs. ‘What are you doing up there?
‘We better go down to him,’ I said.
We both took a moment to gather ourselves, then inhaling deeply, we descended the stairs.
‘So,’ I said, pulling Harry into a bear of a hug when I went into the living room. ‘How’ve you been today? I’ve missed you.’
‘But you were only gone for a few hours,’ Harry said.
‘Yeah, but I’m still allowed to miss you,’ I said, ruffling his hair. ‘It’s a mother’s prerogative.’
‘I’m going to head off,’ Fiona said. She knew that we needed time together as a family. I had called her before we left the hospital and told her what Dr Sharma had told us.
‘Thank you, Fiona,’ I said, feeling my voice choke. ‘I don’t know what I’d do without you holding the fort and taking such good care of Harry.’ Even though she had her own life to live, she had been like a mother and father to him over the last few months while JP and I were taking care of Robyn.
‘You don’t need to thank me, you know I love those kids as if they were my own,’ she said with sadness filling her eyes as I walked her out to the door.
I nodded. ‘Well, still, thank you.’
She pulled me into a tight hug. ‘I love you, sis.’ Then she headed outside to h
er car.
I went back inside, where it was just myself, JP and Harry left in the kitchen. I knew we needed normality for Harry’s sake. ‘Who’s hungry?’ I asked. ‘Shall we get a takeout?’
‘Yes!’ Harry said, punching the air with excitement. ‘Can you stay, Dad? We can get Dominos?’
‘Of course I can stay.’ JP paused. ‘I mean, only if you’re sure you don’t mind…’ he added, turning to me.
‘Of course, we’d like that, wouldn’t we, Harry?’
Harry nodded eagerly and I knew he was enjoying having his parents acting normal together again after the months of tension.
When the food arrived, we put on a movie and the three of us sat on the sofa, one of us on either side of Harry while we ate triangles of pizza. JP and I took turns to check on Robyn, but she was in a deep sleep since we had come back from the hospital.
‘Who wants the last slice?’ I asked.
‘I’m too full,’ Harry said, rubbing his tummy. ‘We can keep it for Robyn when she wakes up.’
‘That’s a lovely idea.’ I didn’t tell him that Robyn couldn’t chew pizza any more.
‘Mammy?’ Harry continued.
‘Yes, love?’
‘When will Robyn get better?’ he asked.
I looked at JP and he looked back at me. I knew we were both thinking the same thing. What were we meant to tell him? What were the right words to say? I had googled it: ‘How do you tell your child their sister is dying?’ Like there was ever going to be any useful advice, but I just needed some help to navigate a path through this.
‘Bedtime,’ JP announced, standing up off the sofa.
‘Can Dad tuck me up, Mammy. Please?’ Harry asked.
I was relieved that JP’s distraction tactic had worked. I knew I couldn’t keep putting off telling Harry, but after the day we had had, I just couldn’t face it that night. I needed more time.
The Last Days of Us Page 19
