‘Thanks,’ I said, savouring its warmth.
He pulled out a chair and sat down at the table opposite me. ‘How’s she doing?’ he asked, nodding in the direction of the sitting room.
‘That’s the thing, JP,’ I said, shaking my head. ‘She is perfect. She ate four pancakes smothered in Nutella for breakfast! You’d never know that she had that monster lurking in her brain. I keep thinking that maybe they’ve got this wrong…’
He nodded. ‘I keep doing that too…’ he admitted. ‘I finally told my parents…’
Aside from Fiona, we still hadn’t told anybody else. It was as if we were too afraid to say it out loud because then it would become real. It was hard enough to absorb it ourselves without dealing with other people’s reactions, but we both knew we couldn’t hold back the tide forever.
‘How did it go?’ I asked. Once again, the strange sense of guilt that had snaked through me when I had told Fiona about Robyn’s diagnosis prickled along my skin. I felt personally responsible for causing everybody this pain.
‘As awful as you’d expect. I thought Dad was going to collapse. Mum seems to think that by getting Father Moran to say a mass for her that it’s going to cure her,’ he said sardonically.
‘It’s just her way of coping, JP,’ I said softly. ‘It’s so hard to accept that there’s nothing anybody can do. People need something to cling to.’
He paused. ‘I googled it, y’know…’ There was an unmistakable tremble in his voice.
I had deliberately stayed away from the internet; I was too afraid of what I might find there. I didn’t have the strength to trawl through medical literature and face the full horror of what we were dealing with.
‘And?’ My eyes searched his face for hope. The only thing keeping me going was JP’s insistence that he would find something; I was clinging to him doing something to fix this situation.
He shook his head and pinched the bridge of his nose, trying to fight back tears. ‘It’s not good news, Sarah…’
‘Go on.’
‘Dr Sharma was right, it’s always fatal – no one has ever survived it.’
JP told me how he had gone back to the flat, poured himself a generous whiskey, then he had taken out his laptop and typed the letters DIPG into Google. He had clicked on to the first result, which had confirmed what Doctor Sharma had told him. He had clicked on to ‘survival rates’, his heart sinking as he had read through it. He had closed down that web page and went onto another one and it was equally grim reading. Eventually, he had closed down the laptop, and sank back against the sofa as hot tears streamed down his face.
My heart broke afresh; as much as Dr Sharma’s pessimism had scared me, some small part of me had hoped he had been exaggerating. I had been counting on JP to find a small nugget of hope, a raft for us both to cling to.
‘Nowhere? You’re telling me that not one child anywhere in the whole world has ever survived this?’ Tears pushed forward in my eyes. Just when I thought I couldn’t possibly cry any more, there were always more tears to come.
JP shook his head. ‘I’m sorry – Neil Armstrong’s daughter died from a DIPG way back in 1962 and nothing has advanced since then,’ he continued. ‘Imagine, it’s almost sixty years on and we’re still no closer to finding a cure!’
‘But why?’ I shook my head angrily. ‘I don’t understand – why isn’t anyone finding a cure? Why is nobody doing anything about this?’
‘It seems that there aren’t many research teams working on DIPG because it is such a rare type of cancer and the pharma companies tend to focus their efforts on the leukaemias and blastomas – more money to be made there,’ he said with a tone as bitter as lemon. It wasn’t like him to be cynical, but I didn’t blame him, I was feeling the same way myself.
We both fell quiet, each suffering our own loss and acceptance of this cruellest disease.
‘We need to talk about the radiotherapy,’ JP broached. ‘We can buy some more time and, who knows, maybe a miracle cure will be found in the meantime?’
‘That’s not going to happen, even if scientists found a cure right now, these things take years to come to fruition. It’ll be too late for Robyn,’ I said, wiping tears away.
‘Well, I think we should try the radiation anyway,’ JP continued.
‘But shouldn’t we think about the effects on her? She’s only four – she’s practically a baby. Is it worth putting her through it if the tumour always comes back?’
His face fell. ‘Sarah, anything that gives us time is a no-brainer. We can get a few more months with her and by then there might be something else we can try, surely that’s worth it?’
‘That’s not going to happen, JP. You heard what the doctor said, it just buys a few months, usually only around three. What about all the side effects? We’ll basically be frying her brain. Not to mention the fact that she made me promise not to take her back to the hospital. Don’t you think she’s going to be going through enough? We have to think about what is best for her!’
He was aghast. ‘Well, we’re doing it,’ he said, looking up at me.
‘JP, you can’t just make the decision for both of us! We need to think about her quality of life for the time she has left. Do we really want her last days to be spent going from hospital appointment to hospital appointment? Or do we want to try to make the time we have left with her as special as we can?’
‘I can’t believe we’re even having this conversation!’ He stood up from the table. His brow furrowed; his nostrils flared.
‘You heard the side effects – nausea, exhaustion, pain, to name but a few! All the poking and prodding, injections and medicines. She hates needles! Not to mention the general anaesthetic that she would have to get every day while they were doing the treatment because she’s too young to lie still – it’s too much.’
‘So, you’re not going to give her a chance? You’re just going to let her die?’
His words crushed me. Although I knew her illness was terminal, it still hadn’t sunk in that Robyn was actually going to die. ‘I just want what’s best for Robyn.’
‘And so do I!’ he blazed.
‘Sit back down, JP,’ I said wearily. I was too exhausted to fight any more. ‘Look, I’m not against it, anything that makes this easier on Robyn is a win in my book—’
‘You heard what Dr Sharma said, in most cases the tumour disappears and allows the patient to have a normal quality of life for a few months. We can use that time to make memories before it comes back again.’
I crumpled as tears fell down my face. ‘There’s so much we’ll never get to do with her,’ I sobbed. ‘She’ll never have her first crush or know what it’s like to kiss in the rain. She won’t ever score the winning goal in a hockey match or stay up all night at a college party and then struggle into a lecture first thing the next morning. We won’t get to cheer her on at her graduation or watch her become a mother.’
‘I won’t get to vet her new boyfriend or walk her down the aisle on her wedding day,’ JP said sadly.
‘She’s being robbed of so many things,’ I wept. Just four years old; a breathtakingly short time. If life could be divided into seasons, she hadn’t even got out of spring.
‘How are we meant to look her in the eye as her body fails her and we can’t do anything to help?’ JP asked.
‘I don’t know the answer to that.’ I shook my head, battling tears. I had spent so many hours lying awake tormented by the same thought. The image of her beautiful, innocent face searching mine for reassurance that I couldn’t give was terrifying. A stray tear fell down my cheek and I wiped it away quickly.
‘And Harry,’ JP continued, ‘he’s a smart kid, he’s going to realise soon that something is up, that is if he hasn’t already. What are we going to tell him?’
‘I’m not sure,’ I replied. I knew we needed to be honest with him, but right then I didn’t have the energy to face it.
JP reached forward and put his arms around me. Although we had been through a lot o
ver the last few months, we had years of togetherness that you couldn’t erase that quickly.
‘I promise you, Sarah, we’ll make as many memories as we can for as long as she’s able. From now on, we need to make every day count.’ He gripped my hand in his and his touch spoke right down into my heart and soothed my broken soul.
Suddenly, the door from the living room opened and Robyn came in clutching Mr Bunny. Besides the slight drooping on one side of her face, she looked perfectly normal and healthy. You’d never know that she only had just months to live.
I straightened up, remembering where I was and all that we had been through.
‘Mammy, is Daddy going to come back home to live with us now?’ Robyn asked, looking from JP to me and back again. She had a big grin on her face, and I made a mental note to try to remember this one. I kept doing that now, trying to commit all her little details to memory, because my biggest fear was not being able to remember her.
‘Eh, no, sweetie,’ I said. ‘Daddy still has to go back to his flat.’
‘Come up here, pet,’ JP said, reaching out for her.
She climbed up onto his knee, stuck her thumb in her mouth and buried her head into his neck. I watched them both, feeling a swell in my chest at their closeness. Every cuddle was now precious as we knew there was a finite number of them left. Since the diagnosis, every day felt like a countdown until we would reach the last one and I hated that. I hated that we were watching a clock. I wasn’t ready yet to say goodbye. I didn’t think I’d ever be ready.
Harry
Everything is going wrong. I thought it was bad when Dad left, but it’s even badder now. Mam had stopped crying for a few weeks, but now she keeps crying again and it’s even worse than the last time. Her eyes are always red, and she is acting really weird, sometimes she keeps staring at me and Robyn and then she starts hugging us too tight and it’s really squishy.
I was watching WWE and John Cena was slamming down Brock Lesnar and Mam came in and I thought she was going to get cross with me and make me turn it off because she doesn’t let me watch things with fighting and guns and things like that, but she just said nothing, and I know this is strange, but I wanted her to tell me to turn it off. Then I was eating spoons of Nutella from the jar this morning and she never even said anything, so then when I put it on my pancake, I took out the marshmallows and started eating them straight out of the bag, even though we’re not allowed to do that because the sugar is really bad for us, but she didn’t even care. And I don’t think it’s Dad’s fault now because Mam and Dad are friends again and he keeps coming over every day, so I think my plan to bring Dad home is starting to work, but Mam says he still has to live with crazy Megan so I have some more work to do.
I think it might be Robyn’s fault that everyone is sad, she’s being really weird too. I wanted to play chasing with her the other day, but she kept tripping over, even though there was nothing in the way, so I told Mam she kept falling over and then Mam started crying AGAIN!!! So then I felt bad for making her cry, so I stopped telling her and said to Robyn, ‘Let’s just watch TV.’ I just want everyone to stop being weird so everything can go back to normal.
16
A few days later, I woke to hear the sound of Robyn retching in her bedroom once more. My heart sank as I ran into her room.
‘It’s okay, sweetheart,’ I soothed, helping her out of the bed and taking off her soiled pyjamas. It was then that I noticed her eyes were crossing over. Even though Dr Sharma had warned us that this would happen, I didn’t think it would be this soon. We had had a blissful few days since coming home from the hospital when, except for her drooping face, you wouldn’t have known she was sick. In my more optimistic moments, I had wondered if they had made a mistake, but now here it was, a reminder that the tumour was still there, lying in wait like the menace that it was. I was frightened by how rapidly it was taking her from us. I wasn’t ready yet, I needed more time.
‘Stay there for a second while I get you clean clothes,’ I said.
I went out onto the landing and dialled JP’s number. Before he could say anything, I blurted out what had happened, and he said he’d be straight over. I heard another voice on the speaker then and I realised he was in the car. I guessed he was on his way to work. It was Megan saying something to him about being late. He snapped back at her before quickly apologising to me and saying he would be with me soon.
‘Where is she?’ JP asked as soon as he arrived at the front door.
‘She’s upstairs,’ I said. ‘Harry is in the living room. I didn’t bring him to school yet.’ Harry was still going to school every day, but I had decided to keep Robyn at home with me. I wanted her with me all the time now. Her playschool teachers had been stunned when I had told them about her diagnosis. ‘I don’t want Harry to see her like this because what am I meant to say to him?’ I shook my head. ‘It’s all happening too fast. I’m not ready to lose her yet, JP,’ I whispered as tears choked my throat.
‘Then we have to try radiotherapy, Sarah,’ he begged.
I dug my thumbs into the familiar, ragged holes of my cardigan and pulled it tightly around my body. Sometimes I wondered if I wore this cardigan more as a comfort blanket than for warmth. Slipping my arms into its woollen sleeves was like a hug. This was happening, no matter how much I wished it wasn’t, and it was stealing my precious daughter day by day unless we did something to call a temporary halt to it. I needed to keep Robyn with us for as long as I could; I needed to stop the clock, and if radiotherapy would do that, then what other choice did I have?
‘Let’s do it,’ I agreed, hoping I was making the right decision by Robyn and not just for our own selfish reasons.
And so, just a week later, we found ourselves walking into the hospital for the first day of radiotherapy. People always say they hate the smell of hospitals, but I actually like it. I don’t mind the clean odour of antiseptic; it’s the sick people I hate seeing. People who are worse off than you, recovering from illnesses or surgeries or sometimes not recovering at all. Hospitals always feel like a warning to me of how fragile life can be. Usually, I would thank my lucky stars that my family was healthy, but now we were one of them – we were the people I once had pitied.
Busy people flew past us, nurses, doctors and other healthcare workers, running to and fro doing their jobs. Then there were others like us, walking at a slower pace, unsure of themselves and where they were going. As we walked through the corridors, stopping periodically to read the signs pointing the way to the radiology department, I was glad to have JP by my side.
The team had warned us that the Monday to Friday sessions for the next few weeks would be intense, not just on Robyn but on the whole family too. We were told to expect Robyn to feel tired and nauseous after her sessions, but there could be more serious side effects such as radiation necrosis, where the radiation could cause some of her brain cells to die, causing worsening neurological symptoms, like headaches and vomiting. Although Robyn would have her treatment and then return home each day afterwards, our life would revolve around this hospital ward.
We had worked out a routine where JP would come over to get Harry ready for school in the mornings while I brought Robyn into the hospital. After he had dropped Harry off at school, he would head on to work. We both knew that he wouldn’t be able to come with us every day; he still needed to keep up appearances in the office, but as he worked close by the hospital, he would be able to drop in on his lunch break. It remained unspoken between us that JP would need time off further down the line, so for now this seemed to be the best option to keep all the balls in the air. I had organised a schedule between Fiona and JP’s mother Joan to collect Harry from school every day and to stay with him until I got home from the hospital.
Joan and Richard were devastated by the diagnosis and were doing their best to be supportive despite everything that had happened between JP and me. Joan had even blessed Robyn with a relic of Padre Pio when she had come to see her the last time
; she was convinced prayer was going to cure her.
I had also told my friends Linda and Mel and they had both been stunned and at a loss for words. And once again I had found myself apologising. They were parents too and I knew it was difficult to listen to me describing their worst nightmare. They were always calling and sending messages of support and I knew they were there for me if I needed them.
We had explained to Robyn that she needed to have special medicine to help make her feel better. She seemed happy enough, but I knew she was thinking of sweet-tasting medicines like Calpol and not big, scary radiotherapy machines. She didn’t really understand it. We had already been in to have the radiation mask made and the simulation had been done. The mask would keep her perfectly still on the bench by fastening her to the bed so that only the tumour would get attacked during the radiation and the healthy parts of her brain would be protected.
Although the moulding technician had pretended that he was a magician to make the process a little less frightening for Robyn, I couldn’t help but gasp when he had first held up the finished mask for us to look at. It reminded me of a cage being placed over her beautiful face. As an adult, I found the idea of it claustrophobic, so I could only imagine how Robyn felt about it all. A play therapist had gently explained to Robyn that it was a superhero mask to help with her special medicine, but her four-year-old eyes were full of scepticism, and I knew she wasn’t buying it.
Because of her age, she would need a general anaesthetic every day to help her lie still for the radiation and I was dreading it. Dr Sharma had assured me that most children tolerated them well and that the effects would wear off fast each day, but even so, I was nervous. General anaesthetics were serious for an adult, let alone a child, but to have to put your child through one every day for several weeks in a row was horrifying. It was a reminder of how much our landscape had altered in such a short space of time.
‘No, Mameeee, I don’t want them to do this,’ Robyn screamed as the anaesthetist bent over her, trying to find a vein to insert the IV cannula. She remembered how it had hurt from the last time. Her free hand was clinging to my jumper, she was pulling so tightly that it was almost choking me.
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