‘Somebody is going to have to beat this disease sometime, it could be Robyn! There has to be a first DIPG survivor! And even if it doesn’t cure her, if it just buys us a few more months, then surely that is better than nothing at all. Why can’t you see this?’
‘Because I’m her mother!’
‘Oh, please! That’s bullshit, just because you gave birth to her doesn’t put you on a higher parenting pedestal!’
‘When you’re a mother you learn to put other people’s needs before your own and that’s what I’m doing right now.’
21
The knots in my shoulders had grown impossibly tight. They ached and burned. I took a deep breath and rolled them backwards, trying to ease them out. JP’s words had really rattled me. How could he say those things? Even though I rarely drank at home, I walked over to the fridge and poured myself a generous glass of white wine. Then I sat down at the kitchen table and opened up my laptop. Although I had deliberately avoided searching the internet since the day we had got Robyn’s diagnosis, I needed to see for myself what he was talking about. I knew that if there was any hope at all of this treatment JP mentioned working, then I owed it to Robyn to research it further.
I took a large sip of wine and typed the words ‘DIPG’ and ‘Arizona’ into Google. Immediately I was met with hits for the same clinic that JP had spoken about. I clicked on to the first link and read down the page. The doctors claimed to have treated several children with DIPG and that some of them had shown evidence of being tumour-free on their subsequent scans. I fell down a rabbit hole as I clicked on to page after page. Many of the parents of the children had written blogs about their treatment journey and as I read their stories, where they shared their innermost hopes and fears, I couldn’t help but be drawn into their lives. They were ordinary people just like we were until the cruel monster had invaded their world. I read on with burning hope that they had defied the odds and had had a happy ending – not just for their sake but for my own selfish reasons too. There were photos of a family celebrating a scan showing their child being tumour-free, but then there was an update three months later showing that the tumour had in fact come back and their child was now ‘resting in the arms of the angels’. Tears streamed down my face as I clicked through page after page reading similar stories, hoping someone, somewhere, might have beaten the odds, but none of these kids had survived. It was exactly as Dr Sharma had warned, the tumour always came back. It always won.
The one thing JP hadn’t mentioned was that there was great scepticism towards the clinic in the wider medical community. Although some people praised the doctors as heroes, many more hailed them as modern-day snake oil salesmen. Each treatment cost hundreds of thousands of dollars and the doctors had never submitted their data for peer review or published their protocols in medical journals. There was also talk of their dubious ‘tumour-free’ scans, not to mention the significant distress it caused for the patients and their families. I felt crushed reading the stories of families who had sold their home or used their life savings to give their child a fighting chance. There were many who had even used the savings of their extended families too, in a bid to raise funds for the treatment, only to still lose their child anyway. My heart broke for these desperate people who would do anything to save their child, they didn’t deserve to be treated this way. Disregarding the cost, at best the doctors’ therapy was unaccredited and at worst they were charlatans taking advantage of vulnerable people. How could JP think this was the right option for Robyn?
I closed my laptop and tears streamed down my face at the hopelessness of it all.
Robyn was falling through the air, falling, falling, falling. An arc of water droplets cascaded off her small body. JP tossed her up again and her laughter bounced off the water and echoed under the low vaulted roof. Her whole face shone, and water glistened like jewels on her hair as JP caught her once more and wrapped her in close against his chest.
JP had called over earlier like he usually did, and we had taken the kids to the swimming pool, but things had changed between us after our argument the day before. The recent thaw in our relationship had cooled once more, and things were strained between us again. Although we were still speaking to one another, it was purely for the sake of Harry and Robyn. The tension between us was so thick, I felt as if I could cut through its sinewy girth with scissors.
I felt water rain down upon me and I realised Robyn had splashed me. I saw the mischievous spark in her eyes and my heart soared. I dragged my hands through the water and watched as it arced over her small body as I splashed her back.
‘This means war,’ Harry said, and suddenly water assailed me from every direction as we had a water fight.
I used to come to the pool with the children every week when Harry was doing his swimming lessons. While Harry was in his class, I would grab a coffee in the café outside and Robyn would have juice and a cookie. How I longed for our old life again. Those ordinary days where nothing remarkable ever happened seemed blissful now. Where once I would have thought they were mundane, now I realised they were the most beautiful of all. Joy was in the simple, everyday moments, like a shared smile or the warmth of a hug, but we were usually too unaware of the fragility of life at moments like that to appreciate just how lucky we were.
After we had towelled off and dressed, we grabbed a snack in the café, before driving home together again in my car. We pulled up at the house and JP carried Robyn inside. She couldn’t walk unaided now and although we hadn’t got a wheelchair for her yet, I knew those days weren’t too far ahead.
‘Are you staying for a while, Dad?’ Harry asked.
‘I can’t, son, I’ve to collect Megan from work.’
Harry’s face fell. I knew he was enjoying seeing more of his dad, nothing made him happier than when the four of us were together.
‘I’ll see you both tomorrow, okay?’ he added.
I walked out to the front door with JP. He stepped outside before turning back to me on the doorstep.
‘I’m sorry about yesterday… what I said… I was out of order.’
‘You were.’
He shook his head. ‘I’m desperate, Sarah – we need to do this or else she’s going to die! We need to try this treatment. It’s our only hope.’
‘I looked the clinic up, JP, and there’s no way I’m sending her off to Arizona to be treated by a bunch of quacks!’
‘But it’s all we’ve got! Her doctors here have failed her, we have to go further afield. Even if there’s a 1 per cent chance, we have to try it…’
‘No child has ever survived it, JP – not one.’
‘Those doctors, they’re on to something though – who knows, Robyn could be the first.’
‘And if I agreed to it, how would you even fund it?’
‘Well, we could sell the house…’ he said tentatively.
I shook my head in disbelief. ‘Besides it being the most ludicrous thing you’ve ever suggested, after we had paid off the mortgage, we still wouldn’t come near to covering the costs.’
‘Well, I was thinking… we could fundraise…’
‘And spend the short time we have left with Robyn busy and preoccupied with organising all of that?’
‘Well, I could do it.’
I shook my head and sighed heavily. ‘This is madness, JP. Complete and utter madness!’ I shivered. Although summer was around the corner, the evenings were still cool.
‘You’re the one who’s mad, I can’t believe you won’t try every avenue to help her. I can’t let my daughter die knowing there might have been something I could have done to save her. I could never live with myself and I don’t know how you will either!’
‘Believe me, if there was a viable cure, I’d be the first in line, but there isn’t—’
‘What kind of mother are you? You need to put her first and fight for her. We brought her into this world, we’re her parents, we need to do everything that we can to stop her leaving it. She’s too youn
g to decide for herself – we’re her voice – you can’t just give up on her!’
I felt rage rising up like a spectre inside me, coursing through my veins. I should have known his apology meant nothing. His words were so cruel, and I couldn’t believe he was saying them. I was her mother who loved her beyond words. Did he really think that by accepting she was dying that I was giving up on her? I would never, ever accept her death, but I couldn’t argue with the doctors and science. I imagined myself in ten years from now, twenty years, even fifty years, still feeling so cheated at the hand life dealt us. But I had to put Robyn first and make her last days with us as special as I could. Tears were coursing down my face.
‘At what cost, JP? Is it fair to put her through that ordeal when it’s not going to change the outcome? The end result is going to be the same – we’re still going to lose our baby girl!’
22
Streaks of red met circles of green and vivid smudges of blue. Robyn was using her fingers to paint a picture of a garden. She dipped her index finger into the yellow paint and circled it around the page to make a sun as bright as the May sunlight streaming in through the patio glass. Every piece of artwork she did was cherished; whereas before after a brief stint of being displayed on the fridge I might have chucked some of it in the recycling bin, now I treasured everything. She enjoyed doing arts and crafts, and although her left hand was losing power, I knew it was important to let her do those things while she still could.
My phone rang, I checked and saw it was Fiona. I dipped my fingers into the muddy water to wash off the paint and lifted the phone.
‘Hi, Fi,’ I answered.
‘Eh, Sarah, are you at home?’
‘Yeah, why?’
‘Put on Good Morning Ireland.’
‘Why?’ I said, going into the living room and searching for the remote.
‘Because JP is on it.’
‘What?’
I located the remote underneath a cushion and quickly flicked on the TV to hear the presenter saying, ‘Up next we have a dad who is desperate to save his terminally ill daughter, you won’t want to miss his heartbreaking story.’ Then an image of Robyn wearing a straw sun hat and a blue dress that had been taken on holiday last year flashed up on the screen. What the hell? I felt anger charge around my body. How dare he? How dare he do this to Robyn? This wasn’t his story to tell.
I watched as the glossy blonde presenter leaned forward in her chair towards JP, her brows creased in concern. ‘JP, tell us about your four-year-old daughter, Robyn.’
I listened as he described our daughter, full of fun and mischief, and then recalled the awful day of Robyn’s diagnosis and the prognosis given to us by the hospital. He explained that her only hope of survival was an experimental treatment offered in the US and how he was fundraising to pay for it. As I heard him tell Robyn’s story, I could feel my anger grow with every word that left his mouth. The way he was telling it made it sound as though this treatment was going to cure her, but he wasn’t telling the full story.
‘If she doesn’t get this treatment she will die,’ he said before an image of a JustGiving page flashed up on the screen, and I suddenly realised this was JP’s method of fundraising. A banner ran along the bottom showing messages being sent into the show from viewers watching at home. They were streaming in from all around the country, congratulating him on his courage and wishing him and Robyn well.
‘Thank you for coming and telling your story here today, JP,’ the presenter said as she wrapped up the interview. ‘I think I can speak for everyone when I say you have the whole country behind you, and we wish you and Robyn all the best with her treatment.’
‘Are you still there?’ Fiona asked.
I had forgotten I was still on the phone to her. ‘I can’t believe he did that!’
‘There’s more, Sarah. There are features on him in both the Irish Times and the Irish Independent today.’
‘What is he trying to do? Does he think if he raises the money that he’s going to get me to change my mind?’
‘You know this is just his way of dealing with it, Sarah, this is his way of trying to stay in control of his grief.’
‘But he’s making a hugely stressful time unbearable. We’re at loggerheads, which isn’t helping Robyn.’ I sighed heavily and squeezed my eyes shut. ‘It’s such a mess. I just want everything to be as peaceful as possible for her – not this craziness.’
‘I know you do,’ Fiona agreed.
I called JP straight after I had hung up from Fiona. He didn’t reply so I rang him again twenty minutes later, but there was still no reply. Eventually I saw his number on my screen as he called me back.
‘What the hell was that about?’ I blasted immediately before he even had time to speak. ‘I can’t believe you’ve gone on national TV and put our private life up there for the whole world to see! All the school mums – our neighbours – every Tom, Dick and Harry in north County Dublin will know what’s going on! You can’t just steamroll me into this, JP! You’re crazy even doing this!’
‘Well, judging by the reaction from the viewers and the donations that are flooding into the page, you’re the one who is crazy by not even wanting to try something that might save her—’
‘But that’s because you didn’t give the other side of the story, you didn’t tell them that the treatment won’t even work! You made it look as though money was the only obstacle stopping Robyn from getting better. You can throw all the money you want at it, but it won’t cure her, JP!’ I blazed.
‘She’s too young to decide for herself – we’re her voice, Sarah!’
Through the glass, I could see Robyn looking at me from the kitchen and her eyes were wide with concern. She wasn’t used to hearing me raise my voice. ‘I have to go,’ I said, hanging up the phone before he could say anything more.
‘It’s okay, Robyn,’ I soothed, going into the kitchen. ‘It was just someone trying to sell me cheaper electricity.’
She went back to painting her flower while I used my phone to google JP’s ‘Help Save Robyn’ JustGiving page. Even though it had only just gone live within the last twenty-four hours; I couldn’t believe he had already managed to raise €61,183. He was well on his way to his target of €300,000. What would happen if he reached it? What would we do then? I wasn’t going to change my mind, especially after everything I had read about the clinic, and I didn’t he think he would back down either.
I scrolled down through the donations, enthralled. Some people had left comments below their donation like ‘You’re in our thoughts and prayers’ or ‘Keep fighting the fight, little Robyn’. Strangers who had seen his appeal on the TV or read about it in the newspapers and had taken our story into their hearts. People we didn’t know and would probably never meet were lighting candles and praying for our little girl. I was gobsmacked to see one anonymous person had donated a whopping €5,000. Tears sprang into my eyes at people’s generosity, and it was all for a little girl they would never know.
So many people seemed to be supporting JP that it was hard not to doubt myself. Was he right? I was starting to ask myself some difficult questions. Shouldn’t I be exhausting every possible avenue to save my child, even if the odds weren’t that great, isn’t that what any loving parent would do? Maybe I was making the wrong call here. And I couldn’t get this wrong, the stakes were too high; our daughter’s life was hanging in the balance.
Harry
Today was the worst day ever. Nobody would let me share their colours in school. I forgot my pencil case and I asked everyone on my table, but nobody would let me use their Twistables, so I had to ask teacher for a loan of her colours, but they’re all really old and broken so my picture turned out the baddest in the whole class. Then nobody would play with me in the yard either and when we had a popcorn party after lunch because teacher said we were really good all week, nobody would let me put my hand in the box and I asked why and then Jamie said that his mam saw my dad on the TV, but I sai
d, ‘no she didn’t ’cos my dad wasn’t on the TV,’ and he said, ‘yes he was’ and that I have germs and I said, ‘no I don’t because I always wash my hands with soap after the toilet.’ And he said that I have the ‘cancer germs’. Granny had cancer and I know it’s when people get really sick, but I didn’t know what Jamie was talking about, so then I said nothing. He’s not my friend any more because he keeps saying mean things. Teacher asked me if I was okay, but I just said I didn’t like popcorn any more.
23
Robyn’s eyes drooped to a close as I stroked her golden hair back off her face. Her body needed more sleep now as it tried its hardest to fight back. I could see the tumour was stealing her energy and she had fallen into a routine of having a long nap every afternoon.
When she was asleep, I came downstairs and saw an envelope sitting on the mat in the hall. I opened it to see it was a card from one of our neighbours to say she was thinking of us. Recently, casseroles and lasagnes had magically started appearing on our doorstep, and I was receiving messages of support from friends I hadn’t heard from in years. Although I was touched by everyone’s kindness, I knew it was all because of JP’s television appearance. Everyone now knew about Robyn’s illness.
When JP called to the house to see her that day, I could barely look at him. Things were very strained between us after his publicity stunt on national television, so even though I was an hour early, I said I was going to collect Harry from school while he stayed behind to mind Robyn.
I went into the little café around the corner from Harry’s school to pass the time and ordered a cappuccino. Usually, I would have a mental battle with myself as I tried to summon the willpower not to order a slice of cake too, but as I looked at them displayed through the glass counter that day, none of them appealed to me. Just like Robyn, I too had lost my appetite lately from all the stress and worry. Nothing tasted good any more. I knew I had lost weight; clothes that were previously too tight now hung off my body.
The Last Days of Us Page 13
