Watching Petals Fall – Chapters 1-3

Chapter One

Precious snapshots

 

The small figure of Juliette kneels on the grass. She is deep in concentration. Over the fence in both directions, lawnmowers drone their song over traffic, pulsing out the hazy music of London in summer.

My little girl breathes heavily, eyes crossing as dimpled hands pluck a flower stalk, pulling it between her fingers so the head spills its petals onto the ground. She touches the petals, absorbed for a moment in their colour and texture, then reaches out for a new flower.

I move to pick her up, to rescue the beauty of our little garden, but something stops me. I watch Juliette on her carpet of petals and want to soak up the moment, this stained glass scene. I want to etch the green, the pinks, the purples and her joy forever on my memory.

I had rushed through life, leapt at shortcuts and rarely taken time just to sit and stare. This was the moment I stopped. In that instant, it struck me that life gives countless snapshots of transient joy; shards of colour like petals falling, moments of beauty and pleasure. Like petals, they fade and disappear but this memory of Juliette I took, bottled and made eternal.

 

Juliette was born at home, in our upside down, split-level flat in South London. Two years before, Elodie’s birth had been out of my control, but Juliette’s was my own. I had soft lights, low voices and a ton of water suspended in a fibreglass pool on the rickety floorboards above the bedroom of our Victorian home. I also had Florence, a midwife who guided each birth she attended with the gentle energy of someone for whom every baby born was a miracle.

I spent my pregnancy dreaming. I saw a fairy floating within me, a small androgynous, dark person, something like her sister with a tiny mouth and huge eyes. My first impression of Juliette as she flopped wetly into the midwife’s arms was of a fully developed three month old with plump cheeks, a sprinkling of blonde hair and the most perfect, full lips.

We do not have full lips in our family and yet here was my new baby looking like a Sistine Chapel angel. Juliette did not cry; she breathed and Florence pronounced her well, but birth seemed no shock for Juliette. Elodie had howled when it was her turn to be born; in fact, the two of us competed to see who could howl the loudest. Juliette slipped into life as if she had never been away.

She was born surrounded by her family. Elodie was in her cot downstairs and her father, Steph, enthusiastically witnessed each stage of Juliette’s arrival like a cheerleader minus his pompoms. Juliette’s grandmother was there, witnessing her first human birth. Her own three babies of which I was the first, were delivered by caesarean section, though as we made plans for her to be present during labour she uttered the immortal words,

‘Well honestly, I can’t believe that it’s so different to dogs and horses!’

Juliette arrived at one in the morning and my father, whose weekday flat was the other side of the river in West Kensington, got a call from his son-in-law to come and meet her.  He may not have made the trip had he realised that awaiting him was not only his third grandchild, but also a big problem.

As Steph watched me bask in my post-birth cleverness, Florence and my mother were contemplating the ton of warm water of questionable cleanliness still in the birthing pool. The hired equipment included a pump, but none of us had thought to consider how we would drain the pool when the time came. So at two in the morning, following the anarchic suggestion of Florence and dressed only in a teddy bear-printed nightshirt that was tucked into his jeans, my father fed the draining hose out of the window and then crept into the street to direct the grisly stream furtively into the municipal drain.

We were already besotted parents to Elodie, our Lolo, who at two was a delicate looking flower with huge blue eyes and a sweet nature. She was the cleverest, prettiest little girl and we deluded ourselves that all other parents must be envious. While I was pregnant with Juliette, all my focus was on how Elodie would be affected by a new baby and I thought of the unborn person as an interloper on her happiness. I could not conceive of loving another human being as much as I did my first child but when Juliette arrived, I was amazed to feel that intense love doubled.

Physically, Juliette could not have been less similar to Elodie. She was a calm baby when Elodie was fractious; round while Elodie was twig-like. Most of all, Juliette looked as though she knew the secrets of the universe, like a serene pensioner rather than a brand new human being. She held my gaze, reeling me into her world and she smiled only a few days after her birth. Juliette looked around and her eyes twinkled with benevolent wisdom.

When Elodie was born in hospital, a nurse lectured me about smothering the baby when I drifted off while holding her. On the March night Juliette was born, it was cold, and Florence worried our baby was not warm enough. ‘Tuck her in between you two,’ she told us. We were surprised but happy to have the excuse. Seven months later, Juliette was still in our bed. I thought about Elodie’s nighttime feeds where I sat bolt upright in a chair next to her cot along the corridor. With Juliette’s feeds, I barely had to open my eyes.

Until she was one, Juliette was a round-cheeked angel. She started moving long before her first word, observing the world placidly. At one, she began to assert herself showing glimmers of the Juliette she was to become. She practised funny sounds and gestures, and her face lit up when she made us laugh.

Elodie adored Juliette, who she called ‘Lulette’. Elodie had just started nursery school when Juliette was born. I worried this might make my big girl feel displaced but she came back from her nursery laden with pictures and presents she had made for her baby sister.

After a few months when Juliette rewarded Elodie with a response, they became an inseparable double act. Games often happened under our kitchen table, both girls filling the tiny space with their giggles.

Elodie and I loved to cook together. We made cookies and fairy cakes, although Elodie used to eat half the batter from the spoon. When I was cooking supper, Elodie dragged a chair over to the stove to help me stir. In the event that I had unwittingly produced a budding artistic genius, I set up an easel for her in our kitchen. It had a tray for pots of primary colour poster paint and Elodie pulled on a too-big apron to daub colours thoughtfully onto paper. I pinned each masterpiece to the kitchen wall.

When she was old enough, Juliette joined in with these activities. She was in a race to catch up with her sister and used speed as a substitute for skill. As long as no one stood in her way, Juliette was all smiles, a delicious sparkle in her smoky eyes.

I am not sure I believe in astrology but when Juliette arrived, a more credulous friend remarked on how clever I had been to have the two girls born in Libra and Aries. At opposing sides of the zodiac, she claimed this meant they complemented each other. Stars on their side or not it certainly seemed that way, and this symbiosis became more marked as they got older. In the girls’ relationship, Elodie was always the peacemaker, subtly keeping her sister’s scales balanced. Fire and air, yin to her yang.

Steph grew up in Paris so his childhood, other than holidays to ‘the country’, was urban. Mine was very different. With little spare money, my family nonetheless had the luxury of space, selling a home-counties house for a lot more than they needed to spend on a big house in Scotland surrounded by garden, woods and fields. I was a daydreamy child, and I spent much of my time having adventures in the woods with my two younger sisters or alone. We girls had a mother with a wonderful singing voice, which she brought out at the right times like in church and at her singing lessons but also at what we thought were the wrong times, such as the supermarket. My mother read to us every night, encouraging flights of imagination with the stories of Mary Poppins and Frances Hodgson Burnett. She channelled a missed vocation as an actress by ‘doing the voices’ for her transfixed daughters. My father read us verses from The Song of Hiawatha and passed on his reverence for books. Intellectual colossus and a great bear of a man, I sometimes found him at our kitchen table reading poetry, tears streaming down his face.

After university and through my twenties, I escaped my country childhood and became a born-again single Londoner. I found the buzz of the UK’s capital city exciting. With marriage and two children however, my road to Damascus moment came on an oppressively hot summer day walking along Battersea Rise with Elodie trotting beside me and Juliette slumped stickily in her pushchair. The heat rose visibly from the tarmac and I watched as it combined with the pollution to form a soupy veil up to child-head-height. Elodie was skipping excitedly and although I could see her mouth moving, the noise of the traffic stopped me hearing a single word she was saying.

While I was pregnant with Juliette, Elodie had developed asthma and at that moment, I had an image of her poor lungs breathing in the soup. I remembered the cool, green spaces of my own childhood and realised I did not want the city for our children any more.

By the time we moved out of London I was pregnant again, and both Steph and I had in mind to recreate some kind of idyll for our growing family. The village of Colne Engaine in deep rural Essex was a happy accident for us. We knew nobody, seeing only that it was pretty, the schools were good and the commute to London for Steph was manageable.

It was not until the day we moved in that I realised what Londoners we’d become.  Two of our neighbours crossed the lane to say hello. They knew Steph was French, the ages and sexes of our children and that I was pregnant. It was unnerving to have our perceived anonymity stripped away. We resented it, just until we realised how fortunate we were to be embraced into village life.

To get to her new nursery school I drove Elodie along a winding single-track road. The school was in a converted barn on an apple farm, which was something of a contrast to her old nursery behind Clapham Junction railway station. That summer we explored the delights of our new county. Elodie, approaching school age was becoming more curious, so as well as the zoo and village fairs, we visited Roman castles and Norman keeps. Juliette trailed serenely in her wake, throwing only the occasional tantrum when she thought herself misunderstood.

A week before Christmas and five months after our move, Pierre was born. After the blissful way that Juliette joined us, I was upset that being 42 weeks pregnant meant a hospital induction. Pierre was a skinny, colicky baby with a shrill cry. He did not sleep much. Tired, with a difficult newborn and two other children under four, the stress caught up with me.

The next few months were rough, and I could not understand it. I had everything I thought would make me happy; three beautiful children, a loving husband and the bearded collie puppy for which we now had the space. I felt ungrateful.

At the end of a year and a few sessions of counselling, I had recovered enough to consider having another baby. I had always wanted four children, although Steph being one of four himself, took a little more persuading. Not much, though. Steph adores babies and children, even when they belong to other people.

At eight weeks pregnant however, I miscarried. It was unexpected, and upsetting. Of course, it was early. We agreed that ‘there was probably something wrong with it,’ and that we could always have another child. We tried to be grateful for the ones we already had, but this baby was one we would never hold.

I did count our blessings. We had been incredibly lucky that I had fallen pregnant so easily when so many others have trouble, but I felt all the emotions of grief and loss and hoped that I could get pregnant again soon.

Our family GP said this to me on the subject. ‘I’m supposed to tell you to wait three months but my personal feeling is that if you’re able to get pregnant, then your body is ready.’

Within a few weeks, I was carrying our fourth child.

 

 

Chapter Two

Implosion

 

Juliette’s blonde head bobbed as she swung her heels against the bench in the doctor’s waiting room. She hummed and chatted so I gave up on the picture book I was trying to share with her.

‘Why do we have to wait, Mummy?’ she asked yet again.

I sighed. ‘Well, darling all these people are quite ill and want to see the doctor too, and he’s busy on Saturdays. And because you’re not really ill we have to wait till last.’

‘But I’m bored!’

‘Me too, sweetheart. Never mind, I’m sure Dr Logan won’t make us wait much longer. Then he can have another look at these funny lumps of yours.’

I sighed, annoyed with myself. We were supposed to be on the road to London by now for a weekend with old friends. I was probably over reacting. Steph was at home getting Elodie and Pierre ready so we could set off as soon as the doctor had checked Juliette over.

 

I was standing at the kitchen sink earlier in the week when Juliette appeared at my side.

‘Feel this, Mummy,’ she said, ‘I’ve got a lump on my cheek.’

I dried my hands and bent down to look. As she lifted her head towards me, I saw two bulges the size of hard-boiled eggs under her jawbone, but the place she pointed to was on her cheek. Gently, I felt the place. It was hard and shaped like a peanut.

It was mumps, obviously. A little wave of guilt mixed with triumph washed over me. None of our children had been given the MMR injection. My stand for choice and the gaining of natural immunity had worked

I studied her smiling face. Apart from the swollen glands and a bit of paleness she seemed well. I could not remember what was normal for mumps. I rang Juliette’s nursery school to tell them what I suspected.

Anna answered the phone. ‘Oh God, I hope it’s not mumps,’ she said. ‘We’ve only just got the children back after the outbreak of chicken pox. Let us know, will you? Can you take her to the GP and find out for sure?’

I made an appointment for that afternoon.

Dr Stamford felt gently around Juliette’s neck. He looked perplexed. ‘Well, I really don’t know,’ he said. ‘I don’t think it is mumps, but then I see so few cases this may be a presentation I’m not familiar with.’

I was reassured, but still curious. ‘What do you think it could be, then?’

‘Oh, the body can react this way to all sorts of viruses. I would like to keep an eye on it though. Bring her back in a week.’ He slapped his forehead. ‘Damn. I won’t be here. Could you make an appointment to see Dr Logan? In fact, it might be an idea if he had a look now so he knows what we’re dealing with.’

He pressed the intercom button on his desk. ‘Have you got a minute, Bill?’

Dr Logan, senior partner of the practice, appeared. I watched while he examined Juliette. ‘I don’t think it’s anything malignant,’ said Dr Stamford, but in that moment, the doctors exchanged a glance.

‘No,’ Dr Logan, said firmly. ‘Probably some virus, but it’s as well to keep an eye on it.’

The next day, Juliette woke up full of energy. ‘Am I going to Pippins, Mummy? It’s so boring at home and Pierre is such a noying.’ “Noying” was a noun, in Juliette’s world. I was struggling with the sickness of early pregnancy, and happy to spend a quieter day with only Pierre in the house. He was contentedly playing with his trains, and I thought I might be able to sneak in a rest while he was having his afternoon nap.

Juliette pushed past me into the bright space of her Montessori nursery. I saw Anna, the nursery manager, and she raised anxious eyebrows at me.

‘Not mumps,’ I smiled. ‘False alarm.’

‘Well thank goodness for that.’

The following morning we had Earlybirds, the weekly music group hosted by mothers with a box of instruments, their pre-schoolers, a few songs and varying levels of enthusiasm. I used to go for the biscuits, and for the adult conversation. Juliette was a little quieter than usual that day, but she and Pierre both loved Earlybirds and it was almost the last session before the Christmas holidays. After the clapping and knee patting of our opening song, a friend leaned over and asked me how Juliette was. I showed her the lumps in Juliette’s neck and face. They seemed bigger.

Over the next couple of days, the swelling increased. Perhaps the doctors had been wrong. Perhaps Juliette’s changed appearance would convince them that she did indeed have mumps. The friends we were visiting at the weekend had a new baby. I wanted to be sure, and this was why we were sitting in a busy Saturday morning surgery.

 

Eventually the red light against Dr Logan’s name lit up.

‘Juliette Lafosse?’ came the bright voice of the receptionist. Juliette slid off the bench and took my hand with a smile. She liked visiting the doctor.

‘Jump onto my couch, Juliette,’ said the doctor breezily, after he had felt around her throat. Juliette looked at me, her eyes asking whether the doctor was joking. She had never been on a doctor’s couch before.

‘Come on, I’ll help you up,’ I said.

Dr Logan rubbed his hands and said, ‘Ooh, I hope these hands aren’t too cold for your tummy!’ Juliette grinned, and lay back. I watched as the doctor pulled up Juliette’s top and gently felt her little potbelly, pressing inwards and around. ‘Does that hurt?’ he asked. Juliette shook her head. ‘Right, young lady. Hop down.’

Dr Logan sat back behind his desk and shook a jar of Dolly Mixtures in Juliette’s direction. He let her spend a while choosing before finally turning to me. ‘Well,’ he said, ‘I think I’m going to call Colchester hospital and ask them to carry out some tests today.’

‘Oh. Why?’

‘It’s almost certainly nothing, but let’s find out what’s causing these lumps and bumps, shall we?’

His manner gave me no reason to worry; I was just weary at the prospect of more waiting around. The doctor made a couple of phone calls and filled out some forms, while Juliette sat on my lap eating the sweets. As we got up to leave I thought about Elodie’s stays in hospital for asthma, and asked Dr Logan whether I should take overnight things.

‘Oh,’ he replied firmly, ‘I wouldn’t have thought that should be necessary.’ If I had needed any further reassurance, this was it.

Back at home, I found Pierre lying on his tummy in the entrance hall, rolling his precious Brio trains across the floor. Steph had dressed him in a light blue jumper. Although it was Pierre’s favourite, he had not grown into it yet. The sleeves were rolled up several times. He got up when he saw us. ‘Going in the car now, Mummy?’

‘Not yet, darling. I have to take Juliette to hospital.’

‘Hospital?!’ It was Elodie. She had been sitting watching cartoons with her coat on and her suitcase beside her. Juliette held my hand as her sister scrutinised her. Juliette looked pleased. She had never been to hospital before. ‘But what’s wrong with Juliette? Has she got asthma like me?’

‘No. We don’t know. Dr Logan wants her to have some tests. Lolo, where is Papa?’

I found Steph in the kitchen clearing up the last of the breakfast things.

‘I’m so annoyed,’ I said. ‘What a waste of time. I wish I hadn’t taken her to the surgery. Do you think she has to have these tests? There’s absolutely nothing wrong with her.’

‘Darling,’ said Steph, ‘The doctor thinks she needs them, and he knows better than we do.’

‘God, you’re so French sometimes. Nothing a suppository wouldn’t cure, I suppose?’

Steph laughed and picked Juliette up. She looked at me.

‘Anyway Mummy, I want to go to hospital!’

‘You see, she’s your daughter,’ I rolled my eyes at Steph.

‘I’ll take her,’ he said.

‘No, I want to. Juliette, why don’t you go and find some games and things to play with when we’re in hospital?’

Colchester General Hospital was a middling-sized local unit about ten miles along country roads from our house. Pierre was born there, but I had never been to the children’s ward before. A young nurse greeted us, and Juliette chose a bed next to the window on the day ward, which was an open section of the main corridor. Two of the other beds were unoccupied but in the last one, a little boy lay. His grim-faced mother sat beside him, reading a magazine.

After a short while, the nurse reappeared. She sat next to Juliette and held out a tube of cream.

‘Hello lovey. You see this cream? We call it our magic cream because it makes your hand all nice and numb so we can take a tiny bit of your blood out for the doctors to look at.’

I looked at Juliette to see how she felt about this. She nodded at the nurse, but she had stopped smiling.

‘It won’t hurt, I promise,’ the nurse went on, ‘but if it does, you can smack me. How about that?’ Juliette looked shocked, and then giggled. ‘Alright?’ Juliette nodded. ‘Now let’s see these little hands. Which one are we going to use?’ Juliette looked from one hand to the other solemnly, then held out her right hand. ‘That one? OK!’  The nurse squeezed the opaque gunk onto the back of Juliette’s hand and covered the area with a piece of clear, sticky film. ‘I’ll come back in a little while and you can tell me if it feels nice and numb.’

‘Now,’ said the nurse turning to me, ‘I’m afraid you might have a long wait for the results. We have to send the blood away to another lab because ours is shut at the weekends.’ My heart sank.

‘We’ll have to find something to do, won’t we, Looby Lu?’ Juliette grinned at her nickname.

‘Do you want to see our playroom, Juliette?’ said the nurse.

‘Yes, please.’

‘Mum, why don’t you go and make yourself a cup of tea in the parents’ room?’

‘Lovely idea.’ Sweet tea helped my morning sickness.

After my drink, I returned to find Juliette with a pile of books and jigsaw puzzles. She had an insatiable appetite for jigsaw puzzles. I loved puzzles too, and I particularly loved to watch my three-year-old’s mind in action as she put the pieces together.

The nurse returned. ‘How is that hand?’ she asked Juliette as she peeled the sticky plastic off. We all peered at it. The skin had wrinkled as though it had been in the bath too long.

‘It feels funny.’

‘It’s supposed to feel like that. It means the magic has worked.’ Another nurse brought a tray of instruments in cellophane packets. She drew the curtains around Juliette’s bed. Gently, the first nurse inserted a thick needle into Juliette’s hand and attached a little splint with white tape to hold it in place. Afterwards she drew a number of test tubes of blood, sealing and labelling each bottle. She smiled brightly. ‘Right, let’s see what the lab makes of these.’ And they left us alone.

Juliette and I returned to our puzzles and when they were finished, we opened the books. The books were sticky and dog-eared. Some had pages missing. We both lost interest quite quickly. A while later a different nurse brought Juliette some lunch. Juliette sat, regal on her bed leaning against a big pile of pillows. I swung the over-bed table towards her, the lunch tray laid out invitingly. ‘I love being in hospital, Mummy,’ she announced.

‘I can see that,’ I laughed. ‘Don’t get too used to it, we’re going home soon.’ When she had finished eating, Juliette put her shoes on and we walked down to the hospital shop so I could buy myself a sandwich, some sweets for Juliette and magazines for us both.

I decided to be brave and started a conversation with the mother whose son was in the bed opposite Juliette. She told me they were testing him for diabetes.  Poor things, I thought.

Juliette was bored and as the sugar from her sweets kicked in, she got up to bounce on the bed. Mid-bounce, and as I was telling her to stop, a female registrar came to speak to us. She had a strong Eastern European accent.

‘You know, one of the conditions we want to rule out with your daughter is leukaemia.’

‘Really?’ I replied, ‘I had no idea.’

‘Don’t worry,’ she smiled, ‘a child with leukaemia looks ill, and your daughter does not look ill!’ We both laughed.

I rang Steph from the payphone beside Juliette’s bed and told him what the doctor had said.

‘Bloody hell,’ was his response.

‘I know. Scary,’ I replied, not feeling remotely scared. Juliette wasn’t ill. ‘Look darling, I don’t think we’re going to manage London at this rate. Why don’t you ring them and see if they’re free next weekend?’

‘I suppose you’re right,’ he said. ‘Elodie’s going to be so disappointed.’

I remembered my earlier sight of Elodie sitting in her coat beside her suitcase. ‘Well, maybe we can go for the day, tomorrow. What do you think?’

‘You really think we have to abandon it for today?’

I sighed. ‘Yes. Apart from anything else, it’s not fair on Pierre. He’s so much better at sleeping if he’s settled into a place first. Let’s go tomorrow.’

‘Alright,’ he said finally. ‘I’ll ring them and see what they say.’

Juliette lost interest in bouncing on the bed. She was getting tired. I read my newspaper and then shut my eyes for a while as Juliette napped.

In the late afternoon, the registrar returned. She sat on Juliette’s bed and the look on her face was strange. Juliette was sleepy and did not respond to her clumsy jokes. The registrar turned towards me, smiled sadly and left without saying another word.

Soon afterwards, the silence of our room was broken by the noise of footsteps. A kindly looking Asian doctor appeared at the head of a group of staff. She was in her fifties and dressed in a beautiful sari.

‘Hello Mrs Lafosse, I am Dr Bhattacharyya,’ she said, smiling. ‘We have Juliette’s test results. Would you please step this way to the office?’ I caught the eye of the woman opposite. She looked away, quickly.

I picked up Juliette and followed the group of doctors and nurses. Why were there so many of them? In the little side office, my attention was drawn to the stains on the upholstered bench. I felt all eyes on Juliette, and on me.

‘Well, we have Juliette’s results,’ Dr Bhattacharyya  repeated, ‘and they do not appear to be normal.’ She paused, looking down at the paper in her hand. ‘The white cell count is very high. This tells us that Juliette probably has leukaemia.’

I opened my mouth. No words came. I tried again.

‘But it might be something else?’ I clung to her word, probably.

The doctor looked briefly at her paper again. ‘No. I’m sorry. We’re pretty sure that it is leukaemia.’

I felt blank, removed, like an actress dropped into a scene who didn’t know her words yet. Several pairs of eyes rested expectantly on me. I did not know what I was supposed to say.

This is ridiculous. Look at her. My daughter’s not ill. She can’t be ill.

I felt tears stinging the back of my eyes and wondered whether crying was the right response. I needed someone else to decide. Where was Steph?

Tears started to drop but they did not feel like mine. Juliette turned on my lap to look at me, so I hid my face in her warm curls. The kind young nurse from earlier, the one who said Juliette could smack her, leaned over and asked Juliette if she wanted to go to the playroom. Juliette was still sleepy, but she liked this person. She climbed off my lap and slipped her hand into the nurse’s.

Someone handed me a phone so I could call Steph. I stared at the numbers on the keypad but did not know which ones to press. Someone else fetched Juliette’s notes and read out our telephone number.

‘Don’t tell your husband the results,’ the doctor said quickly as the ringing tone began.

‘Why?’ I asked, but already I understood.

He had to drive safely to the hospital.

The phone rang and rang. I brought the face of my watch in front of me. The hands were past six o’clock, what did that mean? Oh. It was probably bath time.

Finally, Steph answered. I heard his lovely, familiar voice, so untroubled. The silence stretched between us. I knew that as soon as I spoke, everything would change.

‘Darling…’

‘What is it? Are you OK?’

‘You have to come to the hospital now.’

‘Why? What is it? Did you get the results?’

Silence.

‘It’s leukaemia isn’t it?’

Dr Bhattacharyya’s warning echoed in my head. ‘Please just come, darling.’

A new person told me they had moved our things into a single room.

Why this special treatment? Where had all the familiar faces gone?

Steph arrived. Still in his coat, he pulled me towards him. ‘She’s going to be alright. She’s going to be alright.’

‘Where are Elodie and Pierre?’

‘Emily came over.’ Emily was a lovely girl who helped us sometimes with the children. Steph’s accent was very strong. This only happened when he was upset, or drunk. I knew he wasn’t drunk. The reassurance of his smell and his touch tormented me, because everything was not alright.

Already Steph had let me go to pick up Juliette. He sat, holding her on his lap as the kindly Dr Bhattacharyya repeated to him what she had already told me. Steph’s shoulders shook with silent sobs. This was only the second time since we had known each other that I had ever seen him cry.

Dr Bhattacharyya was saying something about Juliette’s treatment, and the name of another hospital.

‘Addenbrookes. It’s in Cambridge. They are expecting you.’ I looked at Steph. Why could Juliette not stay here? This was all too frightening.

‘We’ll drive her there now,’ said Steph.

‘Don’t worry about that. We’ve ordered an ambulance.’ It should be here in…’ the doctor looked at her watch ‘…twenty minutes. Would you like something to eat while you’re waiting?’

An ambulance? For God’s sake, why? How can a girl who spent the day jumping on the bed need an ambulance? I wanted to take Juliette home, forget all about this for now. ‘Can’t we drive her there in the morning?’ I asked.

‘No, I’m afraid we need to get Juliette up to Addenbrookes tonight. Her treatment will probably start straight away. They’ve asked us to set up a drip, which is why she needs the ambulance.’

‘A drip?’

‘The drip will start putting fluids into Juliette’s body, so it’s ready for chemotherapy.’

I felt sick.

Dr Bhattacharyya left us. I looked at Juliette, enjoying a cuddle with her Papa. She looked no different.

‘Are you tired, darling?’ My voice sounded strange; stretched, thin. I tried again. ‘Did you hear that about the ambulance, Looby Lu? Isn’t that exciting?’

‘Just me? Not Elodie and Pierre?’

‘Just you.’

‘Are you coming with me?’

‘Of course we’re coming with you.’

At three years old, it sounded exciting. At three years old, she did not ask why.

A smiling nurse brought us a plate of cheese and crackers wrapped in plastic, with little pats of butter. Steph refused them. It was now after eight in the evening and I thought I was hungry, but my mouth had no saliva and I spat them out. Juliette had a chocolate biscuit.

Steph held Juliette while I paced. Nurses came in and out of the room and Juliette smiled at the bright language and singsong voices as they explained what they were doing with the drip. All we heard were the words. No cosy language could disguise for us the horror of what was happening.

Another dab of numbing cream on the back of Juliette’s hand. ‘We’re going to put in a little tube, Juliette,’ said the nurse. ‘This is for the doctors to give you medicine to make you better.’

‘Am I poorly?’

‘Yes, darling. Your blood’s not well and the doctors are going to make it better.’

Better than what?  She wasn’t ill. It sounded like nonsense because of course, it was nonsense. I looked at her childishly dimpled hand as the needle went in, and her blood shot up through the thin tube.

The nurses hooked a bag of clear fluid onto a stand, like the ones I saw in hospital dramas on television. The tube snaked down into the splint on Juliette’s hand. ‘You are so brave, Juliette,’ said the nurse. ‘I think you deserve a sticker. Which one would you like?’ Juliette smiled despite her tiredness, and pointed at the one she wanted. The nurse pressed it to a spot on her jumper and Juliette beamed at Steph and me as though all this was fantastic fun.

The bottle-green uniformed ambulance crew turned up soon after, bringing jokes and the cold air of outside. Only one of us could go with Juliette.

‘I’ll drive,’ said Steph. We both knew this was the safest option. A nurse had to come with us, and Carol was the one who volunteered. The ambulance men lifted Juliette onto the stretcher. ‘Cor! You’re heavy!’ they complained, ‘What have you been eating?!’ Juliette grinned as they covered her in big red blankets to keep out the cold. We followed the stretcher out to the hospital entrance and I squeezed Steph’s hand quickly before he set off for the car park.

Once in the back of the ambulance, Carol made a huge fuss of Juliette, settling her onto a big mound of pillows.

‘Oh look at you, Juliette,’ she said. ‘You look just like the Queen!’ Juliette giggled.

The ambulance set off. This was real. I looked over at my mop-headed daughter, small, serene and vulnerable, like a precious jewel in a cushioned box. I wondered what she was thinking. She did not seem curious and thankfully, she was not scared. Not yet. I looked at her swamped in medical equipment and smiled, trying to communicate a reassurance I did not feel; trying to erase the hour of her parents’ odd behaviour. I needed to get a grip, face this thing head on for Juliette’s sake. I thought my head was going to split open. I wanted to cry.

I kept smiling at my baby, willing her to sleep so I could let the mask drop. Finally, despite Carol’s chatter, Juliette’s eyes closed and I could let go. The kind nurse handed me tissues and tried to tell me it was going to be all right. The sleep of shock followed the tears and I woke only as the ambulance slowed. In the dark, I could make out row upon row of parked bicycles. We had arrived in the university town of Cambridge.

Juliette stirred only slightly as her stretcher was unloaded into the dark, cold night at the hospital entrance. I followed her sleeping form through the bright concourse and down corridors to a wide set of doors. As the ambulance driver spoke to the nurse in charge via the intercom, my eyes fell on a cheerful notice with a cartoon drawing of a child covered in big red spots. ‘Have you got spots?’ the caption asked. ‘If you do, you can’t come in!’

There was a buzz and the paramedic pushed against the now unlocked door into a wide corridor floored with shocking orange lino. My first sight was of a small boy on a bike.  He was bald and his face lit up in a huge smile as he shuffled aside to let us pass. Above him was a big notice board covered with photos and cards. Almost all the children in the pictures were bald too.

I could not believe any of this. Juliette didn’t belong here. They would do their tests and realise they had made a mistake, and we could take her home. This was all a bad dream that would soon be over.

A nurse showed us into a small room with a bed, and I tucked Juliette into it, in her clothes. I knew Steph would not have packed any night things for her anyway. Juliette did not wake up.

Steph arrived. His face was pale and his eyes unnaturally wide. A doctor appeared.  He tried to explain what was happening, and to reassure us. My ears strained with trying to hear and to understand, but all I heard was

CANCER.  CANCER OF THE BLOOD. 

It was after midnight. Next to where Juliette lay there was a narrow single bed that pulled down from the wall, which meant that one of us could stay. I could not have left Juliette but at the same time, I didn’t want Steph to go. Although it was against the rules, a kindly nurse brought an extra blanket so he could sleep in the armchair.

At some point Steph joined me in the narrow bed and I wept silently into his back. I woke to discover he had moved next to Juliette and was asleep, arms curled protectively around his daughter.

 

When I first met Steph years before in London, I did not even notice him. He is handsome but the friend he was with, even more so. I was blinded. It was only at our second meeting that I realised something more important to me; that Steph was kind. Too many times I’d had my heart broken. Steph was the first person I fell in love with who made me feel safe.

Steph does not remember much of his childhood, save for its veneer of privilege. His father had inherited a sugar trading company that survived the German occupation of France, and worked very hard to maintain it. Steph and his siblings had luxury holidays, the best schools Paris could offer, and staff. Physical love was ignited in me when I first saw him ski, but I think I truly fell in love with Steph the first time I met his mother.

This gentle and clever lady had suffered from a brain tumour. When Steph and I first knew each other, she had lost the ability to speak and was confined to a wheelchair. I had already met his father in London but six months into our relationship, Steph wanted me to meet his mother. We planned a trip to their house outside Paris. It was August, very hot and in an attempt to impress them, I took a whole stilton.

It did not travel well.

Steph is rarely insistent, but he was desperate for me to understand that I should try to talk to his mother, even though she could not reply. I was twenty-three, lacking in self-confidence and as this conversation with my new boyfriend’s mother was to happen in French, I was quite nervous.

At dinner that night, Steph very soon had his mother doubled over with laughter.  Tears rolled helplessly down her face as Steph lampooned his father and shared private jokes with his mum, and all this despite her lost ability to respond with words. The love he felt for her shone through in his dogged determination to make her laugh. She was at her most vulnerable and he refused to treat her like an invalid. His way with her was a reminder of life before she was ill and the joy this brought his mother was palpable even to me, a stranger.

She died a few months before we were married, two years later. Steph’s grief was heartbreakingly resigned and mute. I learned then that what he showed outwardly gave little sign of the enormity of what he felt inside.

 

I stared through the thin December light of the unfamiliar room at the sleeping forms of my husband and daughter. Steph was my angel, and I allowed myself a moment of comfort knowing the lengths he would go to protect his children and me. How could anything bad happen to Juliette while he was her Papa?

Nurses had come in through the night to check Juliette’s temperature, blood pressure and the machine flooding saline into her body. None of us slept very much. Juliette had been out of nappies at night for a while but with so much fluid in her system, she had wet the bed a couple of times. She was mortified. She had no nightclothes, so the nurses had found her some pyjamas belonging to another child.

A nurse came in, bright and fresh at the start of her shift with a new bag of saline. ‘Morning, Juliette. Morning Mum and Dad. How are you today?’ Juliette ignored her.

‘Can I have some breakfast, Mummy?’

The nurse looked at us, and sucked her teeth apologetically. ‘You can have something to eat later, Juliette. Did the doctor explain that you’re going to get “wigglies” today?’

I shook my head and looked at Steph. I could not remember what the doctor had said. Wait. He had talked about an operation this morning to put something called a Hickman line into Juliette’s body.

‘It’s a special tube,’ the nurse addressed Juliette. ‘You’ll get all your medicine straight into your tummy. Would you like to see what they look like?’

‘Yes.’

‘I’ll come back in a minute, and we can go along to the Treatment Room and I’ll show you, OK?’

Juliette nodded.

When the nurse had gone, Juliette looked forlorn. ‘Why can’t I have any breakfast, Mummy?’

I suppressed an angry sob and took a deep breath. ‘Because to put your special medicine tube in, the doctors need to make you go to sleep and if you’ve got breakfast in your tummy, you might be sick and then they won’t be able to do the operation.’

‘I’m so hungry. I promise I won’t be sick.’

‘I’m sorry, darling. You won’t have to wait very long, I’m sure. Come on. Do you want to put your shoes on and we can go and see what’s in the play room?’ Juliette nodded.

The playroom was beautifully fitted out, clean and bright, with new-looking toys, books and games, a stark contrast to the local hospital we had been in the day before. Why was this one so much better? Juliette went to explore the wooden model kitchen while Steph and I sat on the little plastic chairs. There were other parents there, looking as sleepy as we felt. A thin, dark-haired mother played with her son. He looked about eight years’ old, and had a nasal feeding tube. He was bald. The mother looked over at us. ‘I’m Jane,’ she said, ‘and this is Felix.’ We replied with our hellos and told her our names. ‘What’s your daughter got?’ she asked. Steph and I looked at each other.

‘They think it might be leukaemia.’

‘What kind?’

There were different kinds?

‘We don’t know. We only came in last night.’

‘You’re probably still in shock, then.’ We nodded. ‘Still, you’re lucky you’ve got each other. I’m on my own.’ I looked at Steph again. Lucky was not something we were feeling. Then I thought about being there alone with Juliette and was grateful.

‘How long has your little boy been ill?’ Steph asked the mother.

‘Six months, now. He has AML. Sorry, that’s Acute Myeloidic Leukaemia.’

‘Oh, right.’

‘He also has Down’s syndrome, but that’s another story.’

‘Gosh, I’m sorry,’ I said, feeling inadequate.

‘He’s doing really well, aren’t you Felix?’ The little boy squirmed in his mother’s arms. ‘We should be able to get home in a couple of days. I’m staying at Acorn House for now.’

‘Acorn House?’

‘They’ll probably tell you about it today.’

The playroom door opened and the nurse from earlier, appeared. ‘Are you ready to come and look at wigglies, Juliette?’

The mother rolled her eyes at us. ‘Good luck.’

Steph went to make us some tea, while I followed the nurse with Juliette. The Treatment Room had a stretcher, wall-to-wall cupboards, a profusion of medical equipment and fridges labelled “DANGER: CYTOTOXIC”. No scattering of jolly posters and child-themed friezes could disguise what happened here. I sat awkwardly while a ‘play specialist’ showed Juliette a teddy bear with tubes coming out of its chest. The bear had a brightly coloured cloth bag on a ribbon around its neck where the ‘wigglies’ were stored. ‘He puts them there while he doesn’t need medicine,’ she explained.

I tried to think of a sensible question. ‘Will it scar?’ I asked.

‘Yes.’

How stupid. Of course it would scar.

The play specialist opened a drawer and brought out different material bags to show Juliette. ‘Which one would you like, darling?’

After a moment of hesitation, Juliette pointed at the bag she wanted. ‘Please can I have this one?’ Ignoring the many pretty, floral prints she had chosen a bag with a dark blue coral reef theme, looped on a red ribbon. She studied the bright colours of the tropical fish, holding the bag as though she just had been given a present.

While we were in the treatment room Steph had been making phone calls. His boss was not expecting him back until after Christmas, he told me, and my parents were on their way. They lived about ninety minutes from the hospital, in Nottinghamshire.

After a short time, my parents arrived. Their presence was childishly reassuring to me. My mother bustled around Juliette being loud and normal, which made her granddaughter giggle. My father took us to the other side of the room. He wanted to hear everything we knew about Juliette’s situation, to arm himself with the knowledge that she would be OK.

My youngest sister, Dani, and her husband, Adam, arrived next. Dani hugged me and Steph, and gave her niece a kiss. While Juliette was occupied with the others, Dani spoke quietly to me.

‘You know, leukaemia is so curable these days. Nearly 90%.’

‘I know. She will be fine.’ I started to cry.

‘I’m so sorry.’ Dani put her arms round me. We went out into the corridor.

‘I just can’t believe this. It doesn’t feel real. How could this have happened to her? I keep thinking it’s just a bad dream. She doesn’t look ill. Maybe they’ve made a mistake?’

My sister started to cry too. ‘She’ll get through it. We won’t let anything happen to her.’

‘No we won’t. She’s got to beat this.’

Dani and Adam had been married for six months, and Juliette was one of their bridesmaids. Their wedding took place on the hottest June day ever recorded and during the ceremony at our parents’ house, Juliette fell asleep on the lawn beside their marriage arch. After many years coping with the stress of their different religions, Dani had converted to Judaism. I was so proud of the way she committed to her new life.

Adam and Steph passed us in the corridor on their way to collect our other car, which was racking up parking fines at Colchester hospital. Dani and I went back into Juliette’s room and as Juliette sat playing with her new toys, two nurses entered with an orderly. They were ready for her in theatre.

Juliette loved being wheeled along the corridor in her bed, grinning from ear to ear as the friendly orderly chatted to her. In Steph’s absence it was my father’s hand I gripped, as we followed her along corridors and up in the lift. I was frightened. I was also starting to crack under the colossal strain of pretending to Juliette everything was fine, as my confidence in this fact shattered.

The anaesthetist and his team greeted us outside the room where the operation was to take place. They were all in theatre scrubs, with masks hanging loosely at their throats. Again, I felt as though I had wandered into a TV medical drama.

‘Juliette, we’re going to give you some special medicine in your hand and you’ll start to feel sleepy. When you wake up, your Mummy will be here. Alright?’ Juliette nodded.

It all happened very fast, and Juliette was ‘asleep’. My father and I were dismissed as the scrub-clad crew turned their attention to Juliette. I hated leaving. It was a huge leap of faith. I had to put her into the arms of these strangers, when I wanted to keep safe her in my own.

We returned to Juliette’s room for an anxious wait of several hours. Finally, a nurse popped her head around the door to let us know we could go up to the theatre wing. Juliette was awake.

Again, my father accompanied me. As we walked towards the recovery room, I could hear my little girl wailing hoarsely, and angrily. Two masked nurses hunched over her, but I could make out Juliette’s legs buckled in misery, her feet writhing against each other under the hospital gown. As we got closer, I could see she was trying to pluck at the tube that now emerged from her chest. They were holding her down.

Juliette’s bereft sobbing continued as my eyes took in the strips of tape which held bloodied lacerations on her neck. My perfect baby.

The sounds that came from me then were like those of an animal. My father pulled my head against his chest, tears in his own eyes, but I did not want Juliette to see or hear me like this. I left the room, collapsing against the wall onto the floor as soon as I turned the corner.

I was probably only there for a minute or two. It hit me suddenly and with enormous force, that Juliette needed me to be strong. I had to fight for her. This was the first time her illness had made her suffer, and I had crumbled. I was angry. The primitive need to defend her filled every fibre of my being. I wished with all my heart that the wretched disease would take on a physical form, like a wolf, so that I could tear it apart with my hands and my teeth.  Standing outside that recovery room, I had superhuman strength. Nothing could hurt Juliette with me in its path.

But that was the trouble. There was no path and no wolf either. The enemy was already within, invisible, and making its home in my daughter’s innocent body; a malicious Trojan horse I could not even touch.

 

 

 

Chapter Three

Happy Christmas

I picked myself up from the floor and returned to the recovery room. Juliette was still crying, and struggling against the arms stopping her from pulling out the Hickman line. Making a conscious effort to compose my face, I went over to where she could see me. My hand found her cheek, and I slid my fingers into her soft hair. ‘Hello my little girl. It’s alright. I’m here now.’ One of the nurses patted my arm.

‘This is a good sign,’ she said, nodding at Juliette. ‘She’s angry with us, and that means she’s a fighter!’

If Juliette was fighting, she could count on my strength too. I had to make a battle plan. I was twelve weeks pregnant; not too late for a termination. Juliette needed all my reserves of energy and time, and a new baby would not allow that. No sooner had I formed this thought, than I knew an abortion was out of the question. I had terminated a pregnancy in my third year at university and for more than a year afterwards, I suffered from chronic guilt and depression. I could not do it again. Besides, what if we lost Juliette anyway? I could not let myself think about it.

Returning with Juliette to her room, we found Steph and Adam were back. Juliette was asleep again and did not stir as the orderly locked her bed into place. Steph saw the taped incisions on Juliette’s neck. Thankfully, the gown concealed the tubes which now emerged from her chest. ‘It’s fine, darling. It’s fine,’ he said. ‘She’s going to be OK.’ I wanted so much to believe him.

While Juliette slept, whether through fear or shock the rest of us began acting as though meeting like this was the most natural thing in the world. We swapped news, read the papers and ate sandwiches. We were clinging to former definitions of normal by our fingernails.

Dr Nicholson, who we had met the night before, appeared with ‘Good news!’ He sat on the edge of the bed in our crowded room. ‘There are four main types of leukaemia,’ he explained, ‘but two that generally affect children. We took some cells from Juliette’s spine to have a look, and it’s fantastic because those cells show that she has the best one. It’s called Acute Lymphoblastic Leukaemia. ALL for short.’

The ‘best’ leukaemia? We certainly felt good news starved, but we stared at him as blankly as hunger victims.

‘The prognosis is far better with ALL than with other types of leukaemia, like Acute Myeloidic Leukaemia.’ Oh, so that was slightly positive, but it was not exactly our idea of something to celebrate. The doctor’s efforts at a positive spin were heroic, but now there was no doubt.

Juliette had cancer.

She was awake now, and started being sick. There was nothing in her stomach, and the retching that seized her was heartbreaking to watch. In between times, she lay listless and unsmiling. Her face had already started to puff up with all the fluid they were putting into her. She looked ill. The previous morning my girl had seemed healthy and normal. Twenty-four hours later, these doctors had transformed her into a cancer patient.

Steph turned his mind to practical arrangements. Elodie and Pierre were still with Emily; it was Sunday, but Emily needed to go to work the next day. ‘I’m going to take the children over to Kate’s and feed the dog,’ he said. My good friend, Kate, stalwart ally in a crisis, had offered to have Elodie and Pierre to stay. What must they be thinking? Pierre was just a baby, a couple of weeks short of his second birthday and could not possibly understand why one of his sisters and both of his parents had suddenly disappeared. Steph was one step ahead of me. I felt like a terrible mother for allowing this crisis with Juliette to erase worries about Elodie and Pierre. I was grateful they had Steph.

While Steph was gone, Dr Nicholson put his head round the door again and asked if he could see Steph and me in his office. ‘We need to discuss Juliette’s treatment.’ My stomach turned over.

‘Steph won’t be back until later this evening,’ I said.

‘I’ll come instead,’ said my mother.

The doctor looked doubtful. ‘The thing is, we need both parents’ written permission for the treatment decisions we make.’ NHS procedures had begun to impose themselves over our drama.

In a little side office, Dr Nicholson spoke calmly about grades of leukaemia, and about how the first blood test Juliette had at Colchester hospital would decide her level of treatment. Juliette was graded B. This was not as good as A, but better than C. However, at 103,000 abnormal white blood cells Juliette had narrowly avoided being graded C. He explained that her treatment regime would involve an initial course of chemotherapy, strong enough to get her into remission within three weeks. Once she was in remission, they would allow her to leave hospital. After this, she would follow a two-year programme of intravenous and spinal chemotherapy as well as chemo tablets and steroids. For two years? ‘Boys have to have three,’ said Dr Nicholson. ‘We don’t know why, but they don’t do as well as girls.’ This statement gave me courage. I asked the question that I had not even dared to consider until then.

‘What are her chances of surviving this?’

An awful hush descended like a shroud on the room. I felt my mother stiffen beside me, our senses entirely on the response from the doctor.  At last, he looked at me.

‘About 60%.’

A wall like the blade of a guillotine, fell between me and the rest of the world. I think my mother started to cry. For the second time in twenty-four hours, I was devoid of emotion and of expression as Dr Nicholson explained that Juliette’s very high abnormal blood cell count suggested that her disease was particularly aggressive. That was why intravenous treatment had to begin immediately.

I remembered the statistic of 90%.

90% of children with leukaemia live. Over the previous few hours I had clung to that statistic like a talisman, and now it had been snatched away.

When we returned to her room, Juliette was lying with legs curled up, her back to the door. She made the tiniest hump in the bed, and looked so vulnerable. It was not right that she could die. She was too young, too little, too beautiful. It was wrong that it was her, and I could not make it me.

Steph came back and held me tight against him as I gave him the news. I was broken by the crisis, the normal rhythms of life had evaporated. Steph however, was in the grip of practicalities. This should have been reassuring, but I was alienated. Logically I knew how much I needed his strength, but I was not feeling logical. I was almost angry that he could worry about our other car or make plans for our dog to be fed. What I needed at that moment was to be sure he felt just as I did. At that moment I could not see how for the sake of his sanity Steph needed to be practical. He could not fall apart because I had already done so.

There was so much we were not saying to each other. We had to start making sense of what was happening to Juliette and to our family. My mother thought so as well. ‘You two go home,’ she said. ‘I’ll stay with Juliette tonight. The other children are fine. You need a break and some time together. Off you go and I’ll see you in the morning.’

Although I hated leaving Juliette, it made sense. We had to regroup so we could come back fighting. Juliette seemed a bit better, or at least she had not been sick for a while. ‘Darling, would you like Tatty to stay with you tonight?’ Tatty was the name her grandchildren used for my mother. Juliette nodded. My father kissed Juliette and said goodbye to us. He was going home to feed their animals. Dani and Adam were leaving too. Before Steph and I set off from the hospital, we waited for Juliette to have some supper. She managed to keep it down. ‘Papa and I will be back in the morning, and we’ll bring Elodie and Pierre to see you as well. Alright?’ Juliette nodded.

There was no food at home so we picked up some essentials on the way back from the hospital. Strange to think I had last been at the house only the previous morning, planning a weekend away. It seemed like a different lifetime. As Steph and I ate our meal, I was aware of the terrifying chasm of thoughts neither of us could express. Steph felt it too. We punctuated the silence with desperate stabs at being positive, more to convince ourselves than each other.

In the morning, we walked up to Elodie’s school. The head teacher, Jill, was already in class but the look on our faces was enough for another member of staff to go and fetch her. Jill was shocked and despite her best efforts, she started to cry. We asked her permission to take Elodie out of school for the remainder of the term. It seemed the best solution. Within days, my other sister, Dido, was due over from America with her family. We were supposed to be having a big Christmas gathering at our parents’ house. If Elodie and Pierre were already there, Steph and I could concentrate on Juliette. Jill agreed.

After packing some things for Elodie and Pierre, we drove to Kate’s. We got a huge smile and kisses from Pierre, but Elodie greeted us with a worried face.

‘What’s wrong with Juliette?’

‘Lolo, she’s got an illness called leukaemia,’ I said. ‘Her blood isn’t well. That’s why she needs to stay in hospital for a while so the doctors can give her medicine to make her better.’

‘The doctors put some special tubes in her yesterday,’ Steph went on. ‘You’ll see them today. Oh Lolo, don’t be scared. She’s going to be OK.’ Steph hugged Elodie while I thanked Kate and strapped Pierre into his car seat. Elodie’s reaction was another dimension to the pain of what was happening. She and Pierre needed protecting too.

For six, Elodie was a mature little girl. She had such an intuition for the feelings of others and though we tried to make light of what was happening, she clearly did not believe all our spin. Elodie hated to see people suffer, and she adored Juliette. I was always amazed at how patient Elodie could be with her more hot-tempered sister. The dynamic between the girls often reminded me of that between Steph and myself.

Elodie had a knack of persuading Juliette to play games that were against Juliette’s natural inclination. These often involved a performance, usually dancing. Elodie spent ages putting a dance routine together and then taught it to Juliette, but Juliette could not be serious about it for long. Either she became bored and refused to co-operate or she would rebel against her sister’s discipline and create an exaggerated dance of her own. Elodie tried to keep control at first but more often than not, the girls would dissolve into giggles. They were opposites on the scale in most ways but, although she had become the noisier one, Juliette hero-worshipped her calmer sister.

Now we had to tell Elodie some potentially terrifying facts, and she absorbed these with her customary calm and circumspection. As well as this, she had the sensitivity to try and head off our feelings of guilt that we had abandoned her and Pierre for the previous two nights.

‘We were fine, Mummy,’ she reassured us. ‘And I made sure Pierre didn’t lose his nightnight.’ Without his nightnight, a bit of quilt from his cot bumper, her little brother could not sleep.

On the way to Cambridge, we tried to prepare Elodie for what Juliette’s Hickman line looked like. ‘Will Juliette be able to come to Tatty and Grandpa’s for Christmas?’ she asked.

‘Darling, we don’t know that yet. I hope so,’ I replied.

‘Does Father Christmas visit children in hospital?’

‘Definitely. Don’t worry about that.’

Elodie and Pierre were excited to see Juliette, but the atmosphere was not happy when we arrived. My mother looked exhausted. Juliette had wet the bed again several times during the night and she was ashamed and angry with everyone. No amount of reassurance from the nurses that it was not her fault, made her feel any better. She did not greet Elodie and Pierre.

The first twenty-four hours since her diagnosis had taken a little girl and placed her in a completely alien environment. She had endured major surgery and was permanently connected to various machines from the tubes in her chest. She was only three, and the look she gave me when I walked into the room was one of reproach. I felt horrible for having left her.

Elodie tried her best. ‘Juliette, look at all the presents we’ve got for you!’ Lots of people had given us things for Juliette, but Juliette did not respond. She lay with her back to us. Pierre and Elodie did not know what to do with themselves.

‘Come on you two,’ said Steph. ‘Let’s go and see the playroom.’

Was this how it was going to be, from now on?  Had the bouncy, cheeky, laughing Juliette gone forever, leaving this ill child in her place? I was desperate. My mother and I tried everything to make her laugh, to get some kind of a response, but nothing worked.

A well-meaning nurse came in at one point. She took in our miserable faces and Juliette’s sullen hump in the bed. ‘It’s the anaesthetic,’ she explained. ‘Come on, Juliette,’ she went on, briskly. ‘There’s no need to behave like that.’ She had probably known hundreds of children in a similar state, but for us this was new. Juliette was suffering, and there was absolutely nothing we could do about it.

I had brought her advent calendar from home, and it sat propped up and ignored on the table beside her bed. Then I remembered she had a chocolate one too. I brought it out.

‘Juliette, look. You’ve got two days to open now.’ She wanted to resist me, I could tell. It was her right to stay angry with me after what I had allowed to happen to her but like her mother, she could not resist chocolate. She rolled over and pushed the squares out from behind the numbered doors, then she looked at me. ‘Can I eat tomorrow’s too?’

I laughed but I wanted to cry. ‘Of course you can!’ It was advent calendar anarchy over the next few minutes. Maybe that amounted to spoiling her, but how could I not? I was so grateful that a spark of the old Juliette had returned. The lectures about treating her as a normal child so as not to make her siblings jealous and turn her into a capricious monster, could wait.

With her mood partly restored, Elodie and Pierre came back from the playroom. Elodie was overjoyed. She sat next to Juliette on the bed and handed her sister presents to unwrap. Juliette was soon back to her clowning best as she looked at her new toys, colouring books and felt tips. She laughed and put on funny voices to delight us all.

Another doctor appeared in the doorway. She was smiley and brimming with energy. ‘I’m Denise,’ she said. ‘Sorry I couldn’t be here to meet you yesterday. I’m going to be Juliette’s consultant.’ She spoke fast. ‘Dr Nicholson has explained to you, hasn’t he, that Juliette will get her first dose of chemo today?’ We nodded. ‘We’ll get that set up shortly.’

‘What will it do to her?’ I had to ask the question, even if Steph would not.

‘She’s going to feel tired, and it might make her feel a bit sick but we can give her something for the nausea. Don’t worry.’

Can I have it, instead of her?

All too soon, the nurses arrived. They carried an ominous looking bag covered with printed warnings. Thick gloves and aprons protected these women from the poison they were about to pump straight into our little girl’s bloodstream. I looked at Juliette. She was pale but still so beautiful, and she had just become once more the girl I knew. How could I let this happen? They were asking us to walk off a cliff, blindfolded while saying ‘you can trust us’. I wanted to believe this evil liquid would make her better and that these people had Juliette’s best interests at heart but in the short term, the evidence was that they had made her ill.

I was not in control any more. My role as the main person who looked after Juliette and knew what was best for her had disappeared. I felt useless, redundant. Juliette sat quietly in bed with Elodie beside her. They were colouring. Pierre was in the playroom with Steph. All I could do was sit with my mother and watch as the chemotherapy dripped slowly through the tube into Juliette’s body. When the bag was empty there was a loud beep, and a nurse appeared. She unhooked the empty bag from the stand and replaced it with a new bag of saline.

My father arrived to take my mother, Elodie and Pierre back to their house. ‘How did it go today?’ he asked us.

‘Fine,’ I lied. ‘Didn’t it, Juliette?’

Steph and I took our last chance for some air before they went. I cried as soon as we left the ward. Steph put an arm round my shoulders. ‘She’s going to be OK, she’ll beat this. She’s our little fighter, remember?’ His eyes implored me to believe, so that he could believe too.

In a corridor of the main hospital, a woman approached us. She introduced herself as the manager of Acorn House. ‘We call it the “home from home”,’ she explained. We’ll give you a room so that one of you can always be with your daughter on the ward. Your other children can stay at the house too. It really helps parents and families who are here for a long time.’ Again, my brain protested, why do we get this special treatment?

Before my parents left, we collected some overnight things and then made the short walk through the hospital grounds to see Acorn House. It was a brand new building, clean and welcoming with a dozen bedrooms, a large kitchen, a sitting room and a playroom. The manager led us upstairs and unlocked one of the bedrooms. We decided that Steph was going to spend the first night at the house while I slept on the ward with Juliette. I wanted to be able to do something after abandoning her the previous night.

Elodie and Pierre could not help being excited at the thought of going to their grandparents and seeing their cousins. Elodie tried her best to be diplomatic, but Juliette did not want them to go. I said goodbye to my mother and the children more quickly than I wanted to so I could return my attention to Juliette. ‘We’re going to have fun, aren’t we Juliette?’

Fun. What was I saying?

The next morning Steph appeared, bright and fresh after a night not broken by saline bag changes and temperature checking. I needed the burst of energy he brought. Juliette had a day’s break from chemo, so all we needed to do was entertain her. Luckily, Christmas had arrived on Ward C2. Through her open door, Juliette had spotted some men putting up a Christmas tree. She was excited. We did not have one at home yet.

‘Can I go and see the Christmas tree?’

Untangling tubes from legs and arms, we helped Juliette off the bed and wheeled her drip stand gingerly along the corridor to the chair beside the tree. She climbed onto the seat and sat there in her long pink nightdress, with oversized mauve slippers dangling from her feet. For a moment she looked shy, but then her face broke into the biggest smile.

Time blurred over the next couple of weeks. Every other day Juliette had intravenous chemo but she had to bear other invasive procedures too, such as lumbar punctures, steroid tablets, IV antibiotics, anti-nausea syrup and daily blood tests. We started to learn the terminology for her treatment and condition. It made us feel more in control and yet still we felt guilty. Juliette looked ill. We felt guilty because we had let her have the treatment which made her look this way, and guilty because we were her healthy parents and could not take the disease for her.

Everything we were allowed to do for her, we did. It made us feel like her parents again. Juliette found getting off her bed every ten minutes for a wee, too arduous with her drip stand, so she started using a bedpan. A nurse showed us where to empty these. We became regular visitors to the sluice room, the stench of industrial disinfectant and human waste filling our nostrils. However it was one of the few things we were able to do for Juliette, so neither of us cared.

We tried to stay positive, but there was plenty to scare and depress us. In her first week at Addenbrookes, Juliette was having a rare moment of feeling well enough to enjoy the hospital playroom, when a nurse came in to say it was time to set up her chemo.

Reluctant to break Juliette’s positive mood, I asked if it could be done in the playroom. The nurse made a face. ‘We can’t really do that, for safety reasons,’ she said, apologetically.

‘Why?’ I asked flippantly, ‘Would it burn a hole in the lino if it were spilt?’

‘Yes. Pretty much,’ was the chilling reply.

Every day we shared intimate space with other parents and their children fighting their own battles. It is a little shaming, but I believe it’s human nature when you’re faced with horrible circumstances that you work out whether your situation is better or worse than others. Some of the children who were being treated alongside Juliette had inoperable tumours; they were sickly, bald and had parents who should have been without hope. We met some inspiring people during our time on C2 ward, who made us feel lucky. Of course, there was anger and bitterness from some, but there was also hope enough to make the tired spirit soar.

On our third day in hospital, we met parents whose four-month-old baby had a brain tumour. Doctors told them that even with surgery he had only a 10% chance of recovery. ‘I don’t believe that,’ said his feisty mother. ‘I think statistics are nonsense, and I’m going to keep caring for him like a normal baby.’

The strength of her normal baby’s chemotherapy treatment meant that she had to wear gloves when she changed his nappy, all of which went straight to the toxic waste area of the hospital.

After the month we spent at Addenbrookes, we did not see that family again. We never asked what happened to that little boy, because at the time we simply could not risk knowing the answer. It sounds callous, but the grip on hope for parents in our situation is tenuous and believing that Juliette would live was essential to every part of our daily lives. We could not bear to learn how that little baby had lost his fight.

The patients’ fridge at Addenbrookes had shelves that appeared to me like little rafts of hope. One mother swore by the anti-oxidant properties of blueberries, while another family had entirely switched to a macrobiotic diet; anything that would give their child the edge, to be on the right side of statistics.

Despite all the success stories, despite all the bright cheerfulness of the medical staff, the spectre of what Juliette’s illness could mean loomed over us. We were trapped in a nightmare no morning waking could dispel, forced to contain our fears so that we could stay positive for Juliette and for each other. To achieve this we focussed our attention on the minutiae, from where our eyes could not examine the horizon.

Cancer. More patients than ever were overcoming the disease, but it still sounded like death to me. Our daughter had cancer of the blood. We had this surreal, abstract concept to get used to and all the while, we were faced with the realities of Juliette’s discomfort, and the emotional cost of adapting to a life we did not want.

During Juliette’s third week of treatment, it was Pierre’s second birthday and he was a hundred miles away at my parents’ house. I felt guilty, but Steph reasoned that Juliette needed us more. I loved my little boy. Although they came to visit a few times with my parents, I missed him and Elodie desperately. I had a particular worry about Pierre however, because of the mother I had been to him during his first six months while I was depressed. I tried to convince myself he was better off with my parents, and that if I had to miss any of his birthdays then his second was the least worst one.

After his colicky start Pierre had become a happy little boy and was very easy to please. With two daughters and growing up without brothers, I found it extraordinary having a son. I marvelled at Pierre’s pre-speech, hyperventilating excitement when we passed a building site full of bulldozers, diggers and cranes and realised that I had not taught him that.

Pierre was a very affectionate little boy. He was going through the stage where all objects were mountains to climb. Despite having adventure in his heart he was not very coordinated, and my lisping little boy with cutely jutting ears regularly sported a black eye, cut forehead or grazed nose from his latest assault on the furniture.

As no one suggested we had a choice, Steph and I began our new lives as parents of a seriously ill child. So strange and frightening at first, it was not long before we got used to life at Addenbrookes. After a very short time, watching the electric colours of Juliette’s chemotherapy drip from bags through tubes into her body went from scary to almost commonplace.

The routine of living amongst children with various cancers imposed itself over what we had previously considered normal. Play specialists encouraged the children to cover sick bowls with sequins, and call them hats. They showed the children how to apply paint with the same mouthwash sponges they used for their ulcers. All children on chemotherapy had mouth ulcers. Using the accessories of their treatment for fun was no accident. It was to help take the fear away.

The play specialists visited children too ill for the playroom, bringing toys or just stopped by for a chat. In this most difficult of environments, the nurses were always good-natured. Doctors lingered with each patient, chatting about everything, not just to explain the horrible things that were happening to them. After a while, they felt like friends.

There were other visitors to the ward. One day the local football team, Cambridge United, dropped by, and local businesses sent mountains of sweets and presents to the children. This special attention was a shock, until we remembered. Our little girl was on a children’s cancer ward.

Daily chats with the doctors on their ward rounds, blood taking every morning at the hands of the tinsel-festooned phlebotomists, regular pulse monitoring and blood transfusions became our new normal. In reaching this point, we had the wonderful support of hospital staff who gave us as much medical information as we could handle but who also offered us a counsellor. Ruth, from the CLIC Sargent charity, was based at the hospital. Steph preferred not to talk, or to talk only to close friends and family. For myself, I found unloading fears to a knowledgeable stranger a huge relief.

My sister Dido arrived from the States with her children, Harry and Annie. They spent the whole day with us, nursing jetlag. Juliette loved seeing her aunt and cousins but was miserable when they left her to join the rest of the family at my parents’ house.

One day, Juliette’s best friend came to see her. Little Arabella seemed nervous at how her friend had changed, but Juliette was thrilled to introduce someone she loved from her old world, into her new world. For me, seeing the girls together was a painful reminder of the life Juliette used to have. I looked at Arabella’s pink, untroubled cheeks and was envious of what we had all lost.

We had other visitors, most of whom were a happy distraction. The ones who lifted our spirits the most were friends who brought laughter and gossip from the outside world. We did not cope well with the sadness of others. Of course, we were grateful they shared our fears, but their emotion put us in the bizarre position of needing to find words to comfort them. We knew the situation with Juliette was not great but we were living with it constantly and during those weeks what we needed most of all was a few minutes’ relief.

Visitors helped keep us sane, but our biggest source of strength was Juliette herself. Her hair and skin might have lost their vibrancy, but her sense of humour and fun shone from every pore. She entranced members of staff with her jokes, twinkling eyes and infectious giggle and loved the attention this brought her. As a newly diagnosed patient, she had the privilege of a single room only until a seriously ill child needed it, and after about ten days she was moved onto a busier four-bed ward. Although it was unsettling to change rooms, I found guilty comfort in knowing that she was considered healthier than another child was. Juliette loved the bustle of her new ward and adored the attention of so many nurses and other member of staff. Our hearts burst with pride at how well she was coping with her illness, and with pain that she had to cope with it at all.

A frequent visitor in those early weeks, my mother developed an irreverent game with her granddaughter. At the word of her Tatty, Juliette would climb onto the legs of her drip stand, hold the pole tightly and my mother would whoop, pushing her up and down the corridor at a run while Juliette hooted with laughter. Of course it was dangerous and irresponsible but it was so wonderful for Juliette’s morale and therefore for our own, that staff were kind enough to turn a blind eye.

Acorn House was our refuge from the pressure of the ward. It was close to Juliette yet was a deliberately medical-free environment, to which we could escape for moments of rest. I would go back to Acorn House and cry, shower the detergent smell from my skin and hair, sleep and talk with other parents in the communal areas. We shared our experiences, commiserated and supported, recharging our batteries, ready to face the stress of the ward again. Being able to cook and eat away from the hospital meant that when we had special visitors, there was a relaxed space to spend time with them, and unburden ourselves a little. Once or twice Elodie and Pierre stayed there too. They slept head to toe in the other single bed in the room. It was an adventure for them, and meant they could spend more time with their sister.

One treasured day a few days before Christmas when my mother was visiting with Elodie and Pierre, Juliette was given permission to leave the confines of the hospital for the first time so she could see Acorn House. She was excited, but nervous and fragile. After three weeks of chemo she could not walk the couple of hundred metres on her own, so we wheeled her over in Pierre’s pushchair.

Acorn House was sparkling with Christmas decorations but as Elodie and Pierre tumbled into the playroom, Juliette hung back. Before she was ill, she was the most boisterous of the three but now it seemed she understood her new frailness. Elodie took her hand. ‘Come on Juliette, let’s play in the Wendy house.’

Juliette was a cancer patient, that much was unavoidable but she was also just a child. When she started to play with her sister and brother in that ‘normal’ environment away from uniforms and beeping machines for the first time since her diagnosis, I wanted to cry with happiness.

As his sisters played house and Pierre quietly explored the bucket of cars, I remembered how I had watched Juliette out of the window that summer day in London. I wanted to burn this memory onto my retina as I had that one. How many more memories of Juliette could we count on?

To keep positive, we depended on a steady dose of good news. One morning Juliette’s consultant came to let us know that her latest blood test results showed Juliette was in remission. It was expected, but hearing it gave me a boost and the courage to ask Denise a question.

‘Do you think she will live?’

‘Yes,’ said Denise, without a moment’s hesitation. ‘I really think she will live.’

Without thinking I grabbed her hands, saying, ‘Thank you, thank you, thank you,’ over and over again. For her doctor to have such faith in Juliette’s recovery, to believe in her life was the greatest endorsement of all. We could keep fighting.

It was not only her consultant who came to see Juliette. She had visits from doctors of all grades, and students too. One doctor was doing a study on the effects of steroids on growth; others came just to peer at the new leukaemia patient. However, she was not the new patient for long. Children seemed to arrive on the ward every day, enough so that we felt like old hands after a couple of weeks.

As time went on, we were resigned to spending Christmas in hospital. Tentatively, we had started to relax, confident that Juliette’s treatment was working. Our faith in the Addenbrookes team could not have been stronger, but then we had this question from one of Juliette’s team of doctors.

‘Do you want the good news or the bad news?’

Oh God. What bad news could we possibly bear?

‘The bad news,’ I said, automatically.

‘The bad news is that we’re going to miss you when you go home for Christmas!’ It was the 23rd December.

They prepared us for taking Juliette away from the safety of the hospital, but even so, we were worried. What if her line site got infected?  What if we couldn’t remember which drugs she was supposed to take? What if she became ill when we were going to be so far away from Addenbrookes?  What if we failed in our basic duty of care?

We were not confident, but they reassured us. In any case, they had arranged appointments for Juliette every other day at my parents’ local hospital, and a return to Addenbrookes for chemo on Boxing Day. The treatment schedule did not respect public holidays.

That Juliette was allowed out of hospital for Christmas at all when it meant more work for the staff, was my first example of how our wonderful National Health Service makes efforts to minimize the trauma for families like ours. We were encouraged to make Juliette’s life as normal as possible, and they were on hand to help us achieve it. I tried to dismiss the darker side of this thinking, which was that no one knew better than her smiling doctors did just how fragile Juliette’s grasp on life was.

Steph and I packed up and dressed Juliette in lots of warm layers. As the cold air outside the hospital hit us, we exchanged a look. We were nervous and yet so thankful that we could take our daughter away from the place on which she had been completely dependent over the past month. As we strapped her into the car, we saw how tiny and vulnerable she was, her white face contrasting with the pink of her hat. She looked like a patient, the bulge of her Hickman line bag evident even under all the layers, yet she had the smallest of smiles on her lips. Juliette was excited, but like us she seemed a little afraid. I think we had all become institutionalised.

During the ninety-minute journey, I kept looking behind to check Juliette was all right. Eventually she went to sleep and I found myself leaning back to check her pulse. Steph and I talked quietly, and allowed ourselves to relax into the idea of an almost normal family Christmas. Juliette had earned her reprieve.

Steph has always loved Christmas with my family. My mother is the doyenne of large family events. When my sisters and I were children, tight finances had meant that for a few years our family played host to foreign language students. We had Vietnamese, South American and students of other nationalities staying in our lovely, big, but chilly Scottish house. It was hard work for my mother but as children, we loved the diverse and unusual company. The nicer students would give us biscuits, teach us songs from their native countries and play games with us. Every night there were huge meals to prepare, and it was a challenge to which my mother loved to rise.

She seemed to thrive in these noisy and chaotic gatherings, and has always been a superb cook. For our wedding, she prepared lunch and dinner for 150 people. All prepared in advance of course and served by waiting staff on the day, but it was spectacular. Christmas was like that too, though without the staff. Lots to eat and drink, and my mother at the centre of it all, captaining the family ship amid much laughter.

We arrived at my parents’ house and the family surrounded us with hugs and excited voices. It was surreal we were there, and that Juliette was with us. Her cousins, brother and sister took her hands and led her to the undecorated tree. At first, Juliette hung back, whether feeling fragile or just disoriented after a four-week stay in hospital but she was soon joining in, rummaging for Christmas decorations in the same box my sisters and I had used when we were small. It was a wonderful sight.

At five, Harry was a little younger than Elodie and a bit older than Juliette. Born in Edinburgh while his father completed another degree, he was now a blonde Californian boy. Although the children did not see each other often, they had a lovely rapport. Harry’s little sister, Annie, was just twelve days older than Pierre. In fact, we had been visiting Dido’s family in the States when we both discovered we were carrying them. Dido called our mother on the phone, saying, ‘Geves and I have some news. We’re pregnant.’ It is one of the few occasions we have known her to be entirely lost for words.

It was an exaggeratedly noisy Christmas. It seemed very important to be normal and the effort it took to be so, showed on all of us. We took many photos. In one of these pictures, the five children are all wearing hats stolen from their grandparents’ hat cupboard.  Strangely, they had all picked headwear that reflected their character in some way. Juliette’s was a soft and sumptuous fur creation, a relic of the seventies glamour my mother had perfected. She looked radiant, eyes shining out from underneath the fur and with colour in her skin for the first time in weeks. My beautiful daughter.

They had let us take Juliette away from Addenbrookes, but we were on a very short leash. She needed a blood test every other day and at the Queens Medical Centre, we experienced a different children’s cancer ward. There were more patients and it was an older building. While the paediatric oncology ward in Cambridge was on the ground floor, in Nottingham it was on one of the higher levels of a tower block.

The nurses were very welcoming to Juliette, and Juliette seemed almost glad to be back in a semi-familiar medical environment. I knew how she felt. For me it was reassuring that while the location was completely different, the language and terms were identical. We felt safe.

On Boxing Day, I was grateful for Dani’s company when she joined us for Juliette’s long session of chemotherapy at Addenbrookes. The three of us lay on beds in a semi-deserted ward, watching Christmas films. Juliette needed a blood transfusion too, which made it a very long day.

We headed back to Essex for the New Year, and there my cousin Jo and her family joined us. Like me, Jo had two sisters close in age and the six of us spent many childhood holidays together. We put on plays, laid treasure hunts and wrote quizzes for each other. Jo and I were both at St Andrews University and we both studied French. We were close, but Jo rolled her older cousinly eyes at my bad behaviour. Like me, she had married a Frenchman. She met Sébastien when they were both studying the wine trade in France and they had just overseen the renovation of a lovely chateau in the Dordogne.

My aunt, Jo’s mother, had died of cancer ten years earlier and Jo’s unconstrained rage and misery when I told her about Juliette’s diagnosis was a huge comfort. With the best of intentions, many kind people unconsciously brushed away legitimate fears with their talk of hope and fantastic treatments. Just occasionally, I longed to see the anger and disbelief I felt reflected in the words of another. Being afraid is very lonely.

That New Year’s Eve, Jo and Sébastien’s children played with ours as my cousin and I talked for hours about mothers, cancer and the unfairness of life.

The men shared not words, but Bordeaux.

Chapter One

Precious snapshots

 

The small figure of Juliette kneels on the grass. She is deep in concentration. Over the fence in both directions, lawnmowers drone their song over traffic, pulsing out the hazy music of London in summer.

My little girl breathes heavily, eyes crossing as dimpled hands pluck a flower stalk, pulling it between her fingers so the head spills its petals onto the ground. She touches the petals, absorbed for a moment in their colour and texture, then reaches out for a new flower.

I move to pick her up, to rescue the beauty of our little garden, but something stops me. I watch Juliette on her carpet of petals and want to soak up the moment, this stained glass scene. I want to etch the green, the pinks, the purples and her joy forever on my memory.

I had rushed through life, leapt at shortcuts and rarely taken time just to sit and stare. This was the moment I stopped. In that instant, it struck me that life gives countless snapshots of transient joy; shards of colour like petals falling, moments of beauty and pleasure. Like petals, they fade and disappear but this memory of Juliette I took, bottled and made eternal.

 

Juliette was born at home, in our upside down, split-level flat in South London. Two years before, Elodie’s birth had been out of my control, but Juliette’s was my own. I had soft lights, low voices and a ton of water suspended in a fibreglass pool on the rickety floorboards above the bedroom of our Victorian home. I also had Florence, a midwife who guided each birth she attended with the gentle energy of someone for whom every baby born was a miracle.

I spent my pregnancy dreaming. I saw a fairy floating within me, a small androgynous, dark person, something like her sister with a tiny mouth and huge eyes. My first impression of Juliette as she flopped wetly into the midwife’s arms was of a fully developed three month old with plump cheeks, a sprinkling of blonde hair and the most perfect, full lips.

We do not have full lips in our family and yet here was my new baby looking like a Sistine Chapel angel. Juliette did not cry; she breathed and Florence pronounced her well, but birth seemed no shock for Juliette. Elodie had howled when it was her turn to be born; in fact, the two of us competed to see who could howl the loudest. Juliette slipped into life as if she had never been away.

She was born surrounded by her family. Elodie was in her cot downstairs and her father, Steph, enthusiastically witnessed each stage of Juliette’s arrival like a cheerleader minus his pompoms. Juliette’s grandmother was there, witnessing her first human birth. Her own three babies of which I was the first, were delivered by caesarean section, though as we made plans for her to be present during labour she uttered the immortal words,

‘Well honestly, I can’t believe that it’s so different to dogs and horses!’

Juliette arrived at one in the morning and my father, whose weekday flat was the other side of the river in West Kensington, got a call from his son-in-law to come and meet her.  He may not have made the trip had he realised that awaiting him was not only his third grandchild, but also a big problem.

As Steph watched me bask in my post-birth cleverness, Florence and my mother were contemplating the ton of warm water of questionable cleanliness still in the birthing pool. The hired equipment included a pump, but none of us had thought to consider how we would drain the pool when the time came. So at two in the morning, following the anarchic suggestion of Florence and dressed only in a teddy bear-printed nightshirt that was tucked into his jeans, my father fed the draining hose out of the window and then crept into the street to direct the grisly stream furtively into the municipal drain.

We were already besotted parents to Elodie, our Lolo, who at two was a delicate looking flower with huge blue eyes and a sweet nature. She was the cleverest, prettiest little girl and we deluded ourselves that all other parents must be envious. While I was pregnant with Juliette, all my focus was on how Elodie would be affected by a new baby and I thought of the unborn person as an interloper on her happiness. I could not conceive of loving another human being as much as I did my first child but when Juliette arrived, I was amazed to feel that intense love doubled.

Physically, Juliette could not have been less similar to Elodie. She was a calm baby when Elodie was fractious; round while Elodie was twig-like. Most of all, Juliette looked as though she knew the secrets of the universe, like a serene pensioner rather than a brand new human being. She held my gaze, reeling me into her world and she smiled only a few days after her birth. Juliette looked around and her eyes twinkled with benevolent wisdom.

When Elodie was born in hospital, a nurse lectured me about smothering the baby when I drifted off while holding her. On the March night Juliette was born, it was cold, and Florence worried our baby was not warm enough. ‘Tuck her in between you two,’ she told us. We were surprised but happy to have the excuse. Seven months later, Juliette was still in our bed. I thought about Elodie’s nighttime feeds where I sat bolt upright in a chair next to her cot along the corridor. With Juliette’s feeds, I barely had to open my eyes.

Until she was one, Juliette was a round-cheeked angel. She started moving long before her first word, observing the world placidly. At one, she began to assert herself showing glimmers of the Juliette she was to become. She practised funny sounds and gestures, and her face lit up when she made us laugh.

Elodie adored Juliette, who she called ‘Lulette’. Elodie had just started nursery school when Juliette was born. I worried this might make my big girl feel displaced but she came back from her nursery laden with pictures and presents she had made for her baby sister.

After a few months when Juliette rewarded Elodie with a response, they became an inseparable double act. Games often happened under our kitchen table, both girls filling the tiny space with their giggles.

Elodie and I loved to cook together. We made cookies and fairy cakes, although Elodie used to eat half the batter from the spoon. When I was cooking supper, Elodie dragged a chair over to the stove to help me stir. In the event that I had unwittingly produced a budding artistic genius, I set up an easel for her in our kitchen. It had a tray for pots of primary colour poster paint and Elodie pulled on a too-big apron to daub colours thoughtfully onto paper. I pinned each masterpiece to the kitchen wall.

When she was old enough, Juliette joined in with these activities. She was in a race to catch up with her sister and used speed as a substitute for skill. As long as no one stood in her way, Juliette was all smiles, a delicious sparkle in her smoky eyes.

I am not sure I believe in astrology but when Juliette arrived, a more credulous friend remarked on how clever I had been to have the two girls born in Libra and Aries. At opposing sides of the zodiac, she claimed this meant they complemented each other. Stars on their side or not it certainly seemed that way, and this symbiosis became more marked as they got older. In the girls’ relationship, Elodie was always the peacemaker, subtly keeping her sister’s scales balanced. Fire and air, yin to her yang.

Steph grew up in Paris so his childhood, other than holidays to ‘the country’, was urban. Mine was very different. With little spare money, my family nonetheless had the luxury of space, selling a home-counties house for a lot more than they needed to spend on a big house in Scotland surrounded by garden, woods and fields. I was a daydreamy child, and I spent much of my time having adventures in the woods with my two younger sisters or alone. We girls had a mother with a wonderful singing voice, which she brought out at the right times like in church and at her singing lessons but also at what we thought were the wrong times, such as the supermarket. My mother read to us every night, encouraging flights of imagination with the stories of Mary Poppins and Frances Hodgson Burnett. She channelled a missed vocation as an actress by ‘doing the voices’ for her transfixed daughters. My father read us verses from The Song of Hiawatha and passed on his reverence for books. Intellectual colossus and a great bear of a man, I sometimes found him at our kitchen table reading poetry, tears streaming down his face.

After university and through my twenties, I escaped my country childhood and became a born-again single Londoner. I found the buzz of the UK’s capital city exciting. With marriage and two children however, my road to Damascus moment came on an oppressively hot summer day walking along Battersea Rise with Elodie trotting beside me and Juliette slumped stickily in her pushchair. The heat rose visibly from the tarmac and I watched as it combined with the pollution to form a soupy veil up to child-head-height. Elodie was skipping excitedly and although I could see her mouth moving, the noise of the traffic stopped me hearing a single word she was saying.

While I was pregnant with Juliette, Elodie had developed asthma and at that moment, I had an image of her poor lungs breathing in the soup. I remembered the cool, green spaces of my own childhood and realised I did not want the city for our children any more.

By the time we moved out of London I was pregnant again, and both Steph and I had in mind to recreate some kind of idyll for our growing family. The village of Colne Engaine in deep rural Essex was a happy accident for us. We knew nobody, seeing only that it was pretty, the schools were good and the commute to London for Steph was manageable.

It was not until the day we moved in that I realised what Londoners we’d become.  Two of our neighbours crossed the lane to say hello. They knew Steph was French, the ages and sexes of our children and that I was pregnant. It was unnerving to have our perceived anonymity stripped away. We resented it, just until we realised how fortunate we were to be embraced into village life.

To get to her new nursery school I drove Elodie along a winding single-track road. The school was in a converted barn on an apple farm, which was something of a contrast to her old nursery behind Clapham Junction railway station. That summer we explored the delights of our new county. Elodie, approaching school age was becoming more curious, so as well as the zoo and village fairs, we visited Roman castles and Norman keeps. Juliette trailed serenely in her wake, throwing only the occasional tantrum when she thought herself misunderstood.

A week before Christmas and five months after our move, Pierre was born. After the blissful way that Juliette joined us, I was upset that being 42 weeks pregnant meant a hospital induction. Pierre was a skinny, colicky baby with a shrill cry. He did not sleep much. Tired, with a difficult newborn and two other children under four, the stress caught up with me.

The next few months were rough, and I could not understand it. I had everything I thought would make me happy; three beautiful children, a loving husband and the bearded collie puppy for which we now had the space. I felt ungrateful.

At the end of a year and a few sessions of counselling, I had recovered enough to consider having another baby. I had always wanted four children, although Steph being one of four himself, took a little more persuading. Not much, though. Steph adores babies and children, even when they belong to other people.

At eight weeks pregnant however, I miscarried. It was unexpected, and upsetting. Of course, it was early. We agreed that ‘there was probably something wrong with it,’ and that we could always have another child. We tried to be grateful for the ones we already had, but this baby was one we would never hold.

I did count our blessings. We had been incredibly lucky that I had fallen pregnant so easily when so many others have trouble, but I felt all the emotions of grief and loss and hoped that I could get pregnant again soon.

Our family GP said this to me on the subject. ‘I’m supposed to tell you to wait three months but my personal feeling is that if you’re able to get pregnant, then your body is ready.’

Within a few weeks, I was carrying our fourth child.

 

 

Chapter Two

Implosion

 

Juliette’s blonde head bobbed as she swung her heels against the bench in the doctor’s waiting room. She hummed and chatted so I gave up on the picture book I was trying to share with her.

‘Why do we have to wait, Mummy?’ she asked yet again.

I sighed. ‘Well, darling all these people are quite ill and want to see the doctor too, and he’s busy on Saturdays. And because you’re not really ill we have to wait till last.’

‘But I’m bored!’

‘Me too, sweetheart. Never mind, I’m sure Dr Logan won’t make us wait much longer. Then he can have another look at these funny lumps of yours.’

I sighed, annoyed with myself. We were supposed to be on the road to London by now for a weekend with old friends. I was probably over reacting. Steph was at home getting Elodie and Pierre ready so we could set off as soon as the doctor had checked Juliette over.

 

I was standing at the kitchen sink earlier in the week when Juliette appeared at my side.

‘Feel this, Mummy,’ she said, ‘I’ve got a lump on my cheek.’

I dried my hands and bent down to look. As she lifted her head towards me, I saw two bulges the size of hard-boiled eggs under her jawbone, but the place she pointed to was on her cheek. Gently, I felt the place. It was hard and shaped like a peanut.

It was mumps, obviously. A little wave of guilt mixed with triumph washed over me. None of our children had been given the MMR injection. My stand for choice and the gaining of natural immunity had worked

I studied her smiling face. Apart from the swollen glands and a bit of paleness she seemed well. I could not remember what was normal for mumps. I rang Juliette’s nursery school to tell them what I suspected.

Anna answered the phone. ‘Oh God, I hope it’s not mumps,’ she said. ‘We’ve only just got the children back after the outbreak of chicken pox. Let us know, will you? Can you take her to the GP and find out for sure?’

I made an appointment for that afternoon.

Dr Stamford felt gently around Juliette’s neck. He looked perplexed. ‘Well, I really don’t know,’ he said. ‘I don’t think it is mumps, but then I see so few cases this may be a presentation I’m not familiar with.’

I was reassured, but still curious. ‘What do you think it could be, then?’

‘Oh, the body can react this way to all sorts of viruses. I would like to keep an eye on it though. Bring her back in a week.’ He slapped his forehead. ‘Damn. I won’t be here. Could you make an appointment to see Dr Logan? In fact, it might be an idea if he had a look now so he knows what we’re dealing with.’

He pressed the intercom button on his desk. ‘Have you got a minute, Bill?’

Dr Logan, senior partner of the practice, appeared. I watched while he examined Juliette. ‘I don’t think it’s anything malignant,’ said Dr Stamford, but in that moment, the doctors exchanged a glance.

‘No,’ Dr Logan, said firmly. ‘Probably some virus, but it’s as well to keep an eye on it.’

The next day, Juliette woke up full of energy. ‘Am I going to Pippins, Mummy? It’s so boring at home and Pierre is such a noying.’ “Noying” was a noun, in Juliette’s world. I was struggling with the sickness of early pregnancy, and happy to spend a quieter day with only Pierre in the house. He was contentedly playing with his trains, and I thought I might be able to sneak in a rest while he was having his afternoon nap.

Juliette pushed past me into the bright space of her Montessori nursery. I saw Anna, the nursery manager, and she raised anxious eyebrows at me.

‘Not mumps,’ I smiled. ‘False alarm.’

‘Well thank goodness for that.’

The following morning we had Earlybirds, the weekly music group hosted by mothers with a box of instruments, their pre-schoolers, a few songs and varying levels of enthusiasm. I used to go for the biscuits, and for the adult conversation. Juliette was a little quieter than usual that day, but she and Pierre both loved Earlybirds and it was almost the last session before the Christmas holidays. After the clapping and knee patting of our opening song, a friend leaned over and asked me how Juliette was. I showed her the lumps in Juliette’s neck and face. They seemed bigger.

Over the next couple of days, the swelling increased. Perhaps the doctors had been wrong. Perhaps Juliette’s changed appearance would convince them that she did indeed have mumps. The friends we were visiting at the weekend had a new baby. I wanted to be sure, and this was why we were sitting in a busy Saturday morning surgery.

 

Eventually the red light against Dr Logan’s name lit up.

‘Juliette Lafosse?’ came the bright voice of the receptionist. Juliette slid off the bench and took my hand with a smile. She liked visiting the doctor.

‘Jump onto my couch, Juliette,’ said the doctor breezily, after he had felt around her throat. Juliette looked at me, her eyes asking whether the doctor was joking. She had never been on a doctor’s couch before.

‘Come on, I’ll help you up,’ I said.

Dr Logan rubbed his hands and said, ‘Ooh, I hope these hands aren’t too cold for your tummy!’ Juliette grinned, and lay back. I watched as the doctor pulled up Juliette’s top and gently felt her little potbelly, pressing inwards and around. ‘Does that hurt?’ he asked. Juliette shook her head. ‘Right, young lady. Hop down.’

Dr Logan sat back behind his desk and shook a jar of Dolly Mixtures in Juliette’s direction. He let her spend a while choosing before finally turning to me. ‘Well,’ he said, ‘I think I’m going to call Colchester hospital and ask them to carry out some tests today.’

‘Oh. Why?’

‘It’s almost certainly nothing, but let’s find out what’s causing these lumps and bumps, shall we?’

His manner gave me no reason to worry; I was just weary at the prospect of more waiting around. The doctor made a couple of phone calls and filled out some forms, while Juliette sat on my lap eating the sweets. As we got up to leave I thought about Elodie’s stays in hospital for asthma, and asked Dr Logan whether I should take overnight things.

‘Oh,’ he replied firmly, ‘I wouldn’t have thought that should be necessary.’ If I had needed any further reassurance, this was it.

Back at home, I found Pierre lying on his tummy in the entrance hall, rolling his precious Brio trains across the floor. Steph had dressed him in a light blue jumper. Although it was Pierre’s favourite, he had not grown into it yet. The sleeves were rolled up several times. He got up when he saw us. ‘Going in the car now, Mummy?’

‘Not yet, darling. I have to take Juliette to hospital.’

‘Hospital?!’ It was Elodie. She had been sitting watching cartoons with her coat on and her suitcase beside her. Juliette held my hand as her sister scrutinised her. Juliette looked pleased. She had never been to hospital before. ‘But what’s wrong with Juliette? Has she got asthma like me?’

‘No. We don’t know. Dr Logan wants her to have some tests. Lolo, where is Papa?’

I found Steph in the kitchen clearing up the last of the breakfast things.

‘I’m so annoyed,’ I said. ‘What a waste of time. I wish I hadn’t taken her to the surgery. Do you think she has to have these tests? There’s absolutely nothing wrong with her.’

‘Darling,’ said Steph, ‘The doctor thinks she needs them, and he knows better than we do.’

‘God, you’re so French sometimes. Nothing a suppository wouldn’t cure, I suppose?’

Steph laughed and picked Juliette up. She looked at me.

‘Anyway Mummy, I want to go to hospital!’

‘You see, she’s your daughter,’ I rolled my eyes at Steph.

‘I’ll take her,’ he said.

‘No, I want to. Juliette, why don’t you go and find some games and things to play with when we’re in hospital?’

Colchester General Hospital was a middling-sized local unit about ten miles along country roads from our house. Pierre was born there, but I had never been to the children’s ward before. A young nurse greeted us, and Juliette chose a bed next to the window on the day ward, which was an open section of the main corridor. Two of the other beds were unoccupied but in the last one, a little boy lay. His grim-faced mother sat beside him, reading a magazine.

After a short while, the nurse reappeared. She sat next to Juliette and held out a tube of cream.

‘Hello lovey. You see this cream? We call it our magic cream because it makes your hand all nice and numb so we can take a tiny bit of your blood out for the doctors to look at.’

I looked at Juliette to see how she felt about this. She nodded at the nurse, but she had stopped smiling.

‘It won’t hurt, I promise,’ the nurse went on, ‘but if it does, you can smack me. How about that?’ Juliette looked shocked, and then giggled. ‘Alright?’ Juliette nodded. ‘Now let’s see these little hands. Which one are we going to use?’ Juliette looked from one hand to the other solemnly, then held out her right hand. ‘That one? OK!’  The nurse squeezed the opaque gunk onto the back of Juliette’s hand and covered the area with a piece of clear, sticky film. ‘I’ll come back in a little while and you can tell me if it feels nice and numb.’

‘Now,’ said the nurse turning to me, ‘I’m afraid you might have a long wait for the results. We have to send the blood away to another lab because ours is shut at the weekends.’ My heart sank.

‘We’ll have to find something to do, won’t we, Looby Lu?’ Juliette grinned at her nickname.

‘Do you want to see our playroom, Juliette?’ said the nurse.

‘Yes, please.’

‘Mum, why don’t you go and make yourself a cup of tea in the parents’ room?’

‘Lovely idea.’ Sweet tea helped my morning sickness.

After my drink, I returned to find Juliette with a pile of books and jigsaw puzzles. She had an insatiable appetite for jigsaw puzzles. I loved puzzles too, and I particularly loved to watch my three-year-old’s mind in action as she put the pieces together.

The nurse returned. ‘How is that hand?’ she asked Juliette as she peeled the sticky plastic off. We all peered at it. The skin had wrinkled as though it had been in the bath too long.

‘It feels funny.’

‘It’s supposed to feel like that. It means the magic has worked.’ Another nurse brought a tray of instruments in cellophane packets. She drew the curtains around Juliette’s bed. Gently, the first nurse inserted a thick needle into Juliette’s hand and attached a little splint with white tape to hold it in place. Afterwards she drew a number of test tubes of blood, sealing and labelling each bottle. She smiled brightly. ‘Right, let’s see what the lab makes of these.’ And they left us alone.

Juliette and I returned to our puzzles and when they were finished, we opened the books. The books were sticky and dog-eared. Some had pages missing. We both lost interest quite quickly. A while later a different nurse brought Juliette some lunch. Juliette sat, regal on her bed leaning against a big pile of pillows. I swung the over-bed table towards her, the lunch tray laid out invitingly. ‘I love being in hospital, Mummy,’ she announced.

‘I can see that,’ I laughed. ‘Don’t get too used to it, we’re going home soon.’ When she had finished eating, Juliette put her shoes on and we walked down to the hospital shop so I could buy myself a sandwich, some sweets for Juliette and magazines for us both.

I decided to be brave and started a conversation with the mother whose son was in the bed opposite Juliette. She told me they were testing him for diabetes.  Poor things, I thought.

Juliette was bored and as the sugar from her sweets kicked in, she got up to bounce on the bed. Mid-bounce, and as I was telling her to stop, a female registrar came to speak to us. She had a strong Eastern European accent.

‘You know, one of the conditions we want to rule out with your daughter is leukaemia.’

‘Really?’ I replied, ‘I had no idea.’

‘Don’t worry,’ she smiled, ‘a child with leukaemia looks ill, and your daughter does not look ill!’ We both laughed.

I rang Steph from the payphone beside Juliette’s bed and told him what the doctor had said.

‘Bloody hell,’ was his response.

‘I know. Scary,’ I replied, not feeling remotely scared. Juliette wasn’t ill. ‘Look darling, I don’t think we’re going to manage London at this rate. Why don’t you ring them and see if they’re free next weekend?’

‘I suppose you’re right,’ he said. ‘Elodie’s going to be so disappointed.’

I remembered my earlier sight of Elodie sitting in her coat beside her suitcase. ‘Well, maybe we can go for the day, tomorrow. What do you think?’

‘You really think we have to abandon it for today?’

I sighed. ‘Yes. Apart from anything else, it’s not fair on Pierre. He’s so much better at sleeping if he’s settled into a place first. Let’s go tomorrow.’

‘Alright,’ he said finally. ‘I’ll ring them and see what they say.’

Juliette lost interest in bouncing on the bed. She was getting tired. I read my newspaper and then shut my eyes for a while as Juliette napped.

In the late afternoon, the registrar returned. She sat on Juliette’s bed and the look on her face was strange. Juliette was sleepy and did not respond to her clumsy jokes. The registrar turned towards me, smiled sadly and left without saying another word.

Soon afterwards, the silence of our room was broken by the noise of footsteps. A kindly looking Asian doctor appeared at the head of a group of staff. She was in her fifties and dressed in a beautiful sari.

‘Hello Mrs Lafosse, I am Dr Bhattacharyya,’ she said, smiling. ‘We have Juliette’s test results. Would you please step this way to the office?’ I caught the eye of the woman opposite. She looked away, quickly.

I picked up Juliette and followed the group of doctors and nurses. Why were there so many of them? In the little side office, my attention was drawn to the stains on the upholstered bench. I felt all eyes on Juliette, and on me.

‘Well, we have Juliette’s results,’ Dr Bhattacharyya  repeated, ‘and they do not appear to be normal.’ She paused, looking down at the paper in her hand. ‘The white cell count is very high. This tells us that Juliette probably has leukaemia.’

I opened my mouth. No words came. I tried again.

‘But it might be something else?’ I clung to her word, probably.

The doctor looked briefly at her paper again. ‘No. I’m sorry. We’re pretty sure that it is leukaemia.’

I felt blank, removed, like an actress dropped into a scene who didn’t know her words yet. Several pairs of eyes rested expectantly on me. I did not know what I was supposed to say.

This is ridiculous. Look at her. My daughter’s not ill. She can’t be ill.

I felt tears stinging the back of my eyes and wondered whether crying was the right response. I needed someone else to decide. Where was Steph?

Tears started to drop but they did not feel like mine. Juliette turned on my lap to look at me, so I hid my face in her warm curls. The kind young nurse from earlier, the one who said Juliette could smack her, leaned over and asked Juliette if she wanted to go to the playroom. Juliette was still sleepy, but she liked this person. She climbed off my lap and slipped her hand into the nurse’s.

Someone handed me a phone so I could call Steph. I stared at the numbers on the keypad but did not know which ones to press. Someone else fetched Juliette’s notes and read out our telephone number.

‘Don’t tell your husband the results,’ the doctor said quickly as the ringing tone began.

‘Why?’ I asked, but already I understood.

He had to drive safely to the hospital.

The phone rang and rang. I brought the face of my watch in front of me. The hands were past six o’clock, what did that mean? Oh. It was probably bath time.

Finally, Steph answered. I heard his lovely, familiar voice, so untroubled. The silence stretched between us. I knew that as soon as I spoke, everything would change.

‘Darling…’

‘What is it? Are you OK?’

‘You have to come to the hospital now.’

‘Why? What is it? Did you get the results?’

Silence.

‘It’s leukaemia isn’t it?’

Dr Bhattacharyya’s warning echoed in my head. ‘Please just come, darling.’

A new person told me they had moved our things into a single room.

Why this special treatment? Where had all the familiar faces gone?

Steph arrived. Still in his coat, he pulled me towards him. ‘She’s going to be alright. She’s going to be alright.’

‘Where are Elodie and Pierre?’

‘Emily came over.’ Emily was a lovely girl who helped us sometimes with the children. Steph’s accent was very strong. This only happened when he was upset, or drunk. I knew he wasn’t drunk. The reassurance of his smell and his touch tormented me, because everything was not alright.

Already Steph had let me go to pick up Juliette. He sat, holding her on his lap as the kindly Dr Bhattacharyya repeated to him what she had already told me. Steph’s shoulders shook with silent sobs. This was only the second time since we had known each other that I had ever seen him cry.

Dr Bhattacharyya was saying something about Juliette’s treatment, and the name of another hospital.

‘Addenbrookes. It’s in Cambridge. They are expecting you.’ I looked at Steph. Why could Juliette not stay here? This was all too frightening.

‘We’ll drive her there now,’ said Steph.

‘Don’t worry about that. We’ve ordered an ambulance.’ It should be here in…’ the doctor looked at her watch ‘…twenty minutes. Would you like something to eat while you’re waiting?’

An ambulance? For God’s sake, why? How can a girl who spent the day jumping on the bed need an ambulance? I wanted to take Juliette home, forget all about this for now. ‘Can’t we drive her there in the morning?’ I asked.

‘No, I’m afraid we need to get Juliette up to Addenbrookes tonight. Her treatment will probably start straight away. They’ve asked us to set up a drip, which is why she needs the ambulance.’

‘A drip?’

‘The drip will start putting fluids into Juliette’s body, so it’s ready for chemotherapy.’

I felt sick.

Dr Bhattacharyya left us. I looked at Juliette, enjoying a cuddle with her Papa. She looked no different.

‘Are you tired, darling?’ My voice sounded strange; stretched, thin. I tried again. ‘Did you hear that about the ambulance, Looby Lu? Isn’t that exciting?’

‘Just me? Not Elodie and Pierre?’

‘Just you.’

‘Are you coming with me?’

‘Of course we’re coming with you.’

At three years old, it sounded exciting. At three years old, she did not ask why.

A smiling nurse brought us a plate of cheese and crackers wrapped in plastic, with little pats of butter. Steph refused them. It was now after eight in the evening and I thought I was hungry, but my mouth had no saliva and I spat them out. Juliette had a chocolate biscuit.

Steph held Juliette while I paced. Nurses came in and out of the room and Juliette smiled at the bright language and singsong voices as they explained what they were doing with the drip. All we heard were the words. No cosy language could disguise for us the horror of what was happening.

Another dab of numbing cream on the back of Juliette’s hand. ‘We’re going to put in a little tube, Juliette,’ said the nurse. ‘This is for the doctors to give you medicine to make you better.’

‘Am I poorly?’

‘Yes, darling. Your blood’s not well and the doctors are going to make it better.’

Better than what?  She wasn’t ill. It sounded like nonsense because of course, it was nonsense. I looked at her childishly dimpled hand as the needle went in, and her blood shot up through the thin tube.

The nurses hooked a bag of clear fluid onto a stand, like the ones I saw in hospital dramas on television. The tube snaked down into the splint on Juliette’s hand. ‘You are so brave, Juliette,’ said the nurse. ‘I think you deserve a sticker. Which one would you like?’ Juliette smiled despite her tiredness, and pointed at the one she wanted. The nurse pressed it to a spot on her jumper and Juliette beamed at Steph and me as though all this was fantastic fun.

The bottle-green uniformed ambulance crew turned up soon after, bringing jokes and the cold air of outside. Only one of us could go with Juliette.

‘I’ll drive,’ said Steph. We both knew this was the safest option. A nurse had to come with us, and Carol was the one who volunteered. The ambulance men lifted Juliette onto the stretcher. ‘Cor! You’re heavy!’ they complained, ‘What have you been eating?!’ Juliette grinned as they covered her in big red blankets to keep out the cold. We followed the stretcher out to the hospital entrance and I squeezed Steph’s hand quickly before he set off for the car park.

Once in the back of the ambulance, Carol made a huge fuss of Juliette, settling her onto a big mound of pillows.

‘Oh look at you, Juliette,’ she said. ‘You look just like the Queen!’ Juliette giggled.

The ambulance set off. This was real. I looked over at my mop-headed daughter, small, serene and vulnerable, like a precious jewel in a cushioned box. I wondered what she was thinking. She did not seem curious and thankfully, she was not scared. Not yet. I looked at her swamped in medical equipment and smiled, trying to communicate a reassurance I did not feel; trying to erase the hour of her parents’ odd behaviour. I needed to get a grip, face this thing head on for Juliette’s sake. I thought my head was going to split open. I wanted to cry.

I kept smiling at my baby, willing her to sleep so I could let the mask drop. Finally, despite Carol’s chatter, Juliette’s eyes closed and I could let go. The kind nurse handed me tissues and tried to tell me it was going to be all right. The sleep of shock followed the tears and I woke only as the ambulance slowed. In the dark, I could make out row upon row of parked bicycles. We had arrived in the university town of Cambridge.

Juliette stirred only slightly as her stretcher was unloaded into the dark, cold night at the hospital entrance. I followed her sleeping form through the bright concourse and down corridors to a wide set of doors. As the ambulance driver spoke to the nurse in charge via the intercom, my eyes fell on a cheerful notice with a cartoon drawing of a child covered in big red spots. ‘Have you got spots?’ the caption asked. ‘If you do, you can’t come in!’

There was a buzz and the paramedic pushed against the now unlocked door into a wide corridor floored with shocking orange lino. My first sight was of a small boy on a bike.  He was bald and his face lit up in a huge smile as he shuffled aside to let us pass. Above him was a big notice board covered with photos and cards. Almost all the children in the pictures were bald too.

I could not believe any of this. Juliette didn’t belong here. They would do their tests and realise they had made a mistake, and we could take her home. This was all a bad dream that would soon be over.

A nurse showed us into a small room with a bed, and I tucked Juliette into it, in her clothes. I knew Steph would not have packed any night things for her anyway. Juliette did not wake up.

Steph arrived. His face was pale and his eyes unnaturally wide. A doctor appeared.  He tried to explain what was happening, and to reassure us. My ears strained with trying to hear and to understand, but all I heard was

CANCER.  CANCER OF THE BLOOD. 

It was after midnight. Next to where Juliette lay there was a narrow single bed that pulled down from the wall, which meant that one of us could stay. I could not have left Juliette but at the same time, I didn’t want Steph to go. Although it was against the rules, a kindly nurse brought an extra blanket so he could sleep in the armchair.

At some point Steph joined me in the narrow bed and I wept silently into his back. I woke to discover he had moved next to Juliette and was asleep, arms curled protectively around his daughter.

 

When I first met Steph years before in London, I did not even notice him. He is handsome but the friend he was with, even more so. I was blinded. It was only at our second meeting that I realised something more important to me; that Steph was kind. Too many times I’d had my heart broken. Steph was the first person I fell in love with who made me feel safe.

Steph does not remember much of his childhood, save for its veneer of privilege. His father had inherited a sugar trading company that survived the German occupation of France, and worked very hard to maintain it. Steph and his siblings had luxury holidays, the best schools Paris could offer, and staff. Physical love was ignited in me when I first saw him ski, but I think I truly fell in love with Steph the first time I met his mother.

This gentle and clever lady had suffered from a brain tumour. When Steph and I first knew each other, she had lost the ability to speak and was confined to a wheelchair. I had already met his father in London but six months into our relationship, Steph wanted me to meet his mother. We planned a trip to their house outside Paris. It was August, very hot and in an attempt to impress them, I took a whole stilton.

It did not travel well.

Steph is rarely insistent, but he was desperate for me to understand that I should try to talk to his mother, even though she could not reply. I was twenty-three, lacking in self-confidence and as this conversation with my new boyfriend’s mother was to happen in French, I was quite nervous.

At dinner that night, Steph very soon had his mother doubled over with laughter.  Tears rolled helplessly down her face as Steph lampooned his father and shared private jokes with his mum, and all this despite her lost ability to respond with words. The love he felt for her shone through in his dogged determination to make her laugh. She was at her most vulnerable and he refused to treat her like an invalid. His way with her was a reminder of life before she was ill and the joy this brought his mother was palpable even to me, a stranger.

She died a few months before we were married, two years later. Steph’s grief was heartbreakingly resigned and mute. I learned then that what he showed outwardly gave little sign of the enormity of what he felt inside.

 

I stared through the thin December light of the unfamiliar room at the sleeping forms of my husband and daughter. Steph was my angel, and I allowed myself a moment of comfort knowing the lengths he would go to protect his children and me. How could anything bad happen to Juliette while he was her Papa?

Nurses had come in through the night to check Juliette’s temperature, blood pressure and the machine flooding saline into her body. None of us slept very much. Juliette had been out of nappies at night for a while but with so much fluid in her system, she had wet the bed a couple of times. She was mortified. She had no nightclothes, so the nurses had found her some pyjamas belonging to another child.

A nurse came in, bright and fresh at the start of her shift with a new bag of saline. ‘Morning, Juliette. Morning Mum and Dad. How are you today?’ Juliette ignored her.

‘Can I have some breakfast, Mummy?’

The nurse looked at us, and sucked her teeth apologetically. ‘You can have something to eat later, Juliette. Did the doctor explain that you’re going to get “wigglies” today?’

I shook my head and looked at Steph. I could not remember what the doctor had said. Wait. He had talked about an operation this morning to put something called a Hickman line into Juliette’s body.

‘It’s a special tube,’ the nurse addressed Juliette. ‘You’ll get all your medicine straight into your tummy. Would you like to see what they look like?’

‘Yes.’

‘I’ll come back in a minute, and we can go along to the Treatment Room and I’ll show you, OK?’

Juliette nodded.

When the nurse had gone, Juliette looked forlorn. ‘Why can’t I have any breakfast, Mummy?’

I suppressed an angry sob and took a deep breath. ‘Because to put your special medicine tube in, the doctors need to make you go to sleep and if you’ve got breakfast in your tummy, you might be sick and then they won’t be able to do the operation.’

‘I’m so hungry. I promise I won’t be sick.’

‘I’m sorry, darling. You won’t have to wait very long, I’m sure. Come on. Do you want to put your shoes on and we can go and see what’s in the play room?’ Juliette nodded.

The playroom was beautifully fitted out, clean and bright, with new-looking toys, books and games, a stark contrast to the local hospital we had been in the day before. Why was this one so much better? Juliette went to explore the wooden model kitchen while Steph and I sat on the little plastic chairs. There were other parents there, looking as sleepy as we felt. A thin, dark-haired mother played with her son. He looked about eight years’ old, and had a nasal feeding tube. He was bald. The mother looked over at us. ‘I’m Jane,’ she said, ‘and this is Felix.’ We replied with our hellos and told her our names. ‘What’s your daughter got?’ she asked. Steph and I looked at each other.

‘They think it might be leukaemia.’

‘What kind?’

There were different kinds?

‘We don’t know. We only came in last night.’

‘You’re probably still in shock, then.’ We nodded. ‘Still, you’re lucky you’ve got each other. I’m on my own.’ I looked at Steph again. Lucky was not something we were feeling. Then I thought about being there alone with Juliette and was grateful.

‘How long has your little boy been ill?’ Steph asked the mother.

‘Six months, now. He has AML. Sorry, that’s Acute Myeloidic Leukaemia.’

‘Oh, right.’

‘He also has Down’s syndrome, but that’s another story.’

‘Gosh, I’m sorry,’ I said, feeling inadequate.

‘He’s doing really well, aren’t you Felix?’ The little boy squirmed in his mother’s arms. ‘We should be able to get home in a couple of days. I’m staying at Acorn House for now.’

‘Acorn House?’

‘They’ll probably tell you about it today.’

The playroom door opened and the nurse from earlier, appeared. ‘Are you ready to come and look at wigglies, Juliette?’

The mother rolled her eyes at us. ‘Good luck.’

Steph went to make us some tea, while I followed the nurse with Juliette. The Treatment Room had a stretcher, wall-to-wall cupboards, a profusion of medical equipment and fridges labelled “DANGER: CYTOTOXIC”. No scattering of jolly posters and child-themed friezes could disguise what happened here. I sat awkwardly while a ‘play specialist’ showed Juliette a teddy bear with tubes coming out of its chest. The bear had a brightly coloured cloth bag on a ribbon around its neck where the ‘wigglies’ were stored. ‘He puts them there while he doesn’t need medicine,’ she explained.

I tried to think of a sensible question. ‘Will it scar?’ I asked.

‘Yes.’

How stupid. Of course it would scar.

The play specialist opened a drawer and brought out different material bags to show Juliette. ‘Which one would you like, darling?’

After a moment of hesitation, Juliette pointed at the bag she wanted. ‘Please can I have this one?’ Ignoring the many pretty, floral prints she had chosen a bag with a dark blue coral reef theme, looped on a red ribbon. She studied the bright colours of the tropical fish, holding the bag as though she just had been given a present.

While we were in the treatment room Steph had been making phone calls. His boss was not expecting him back until after Christmas, he told me, and my parents were on their way. They lived about ninety minutes from the hospital, in Nottinghamshire.

After a short time, my parents arrived. Their presence was childishly reassuring to me. My mother bustled around Juliette being loud and normal, which made her granddaughter giggle. My father took us to the other side of the room. He wanted to hear everything we knew about Juliette’s situation, to arm himself with the knowledge that she would be OK.

My youngest sister, Dani, and her husband, Adam, arrived next. Dani hugged me and Steph, and gave her niece a kiss. While Juliette was occupied with the others, Dani spoke quietly to me.

‘You know, leukaemia is so curable these days. Nearly 90%.’

‘I know. She will be fine.’ I started to cry.

‘I’m so sorry.’ Dani put her arms round me. We went out into the corridor.

‘I just can’t believe this. It doesn’t feel real. How could this have happened to her? I keep thinking it’s just a bad dream. She doesn’t look ill. Maybe they’ve made a mistake?’

My sister started to cry too. ‘She’ll get through it. We won’t let anything happen to her.’

‘No we won’t. She’s got to beat this.’

Dani and Adam had been married for six months, and Juliette was one of their bridesmaids. Their wedding took place on the hottest June day ever recorded and during the ceremony at our parents’ house, Juliette fell asleep on the lawn beside their marriage arch. After many years coping with the stress of their different religions, Dani had converted to Judaism. I was so proud of the way she committed to her new life.

Adam and Steph passed us in the corridor on their way to collect our other car, which was racking up parking fines at Colchester hospital. Dani and I went back into Juliette’s room and as Juliette sat playing with her new toys, two nurses entered with an orderly. They were ready for her in theatre.

Juliette loved being wheeled along the corridor in her bed, grinning from ear to ear as the friendly orderly chatted to her. In Steph’s absence it was my father’s hand I gripped, as we followed her along corridors and up in the lift. I was frightened. I was also starting to crack under the colossal strain of pretending to Juliette everything was fine, as my confidence in this fact shattered.

The anaesthetist and his team greeted us outside the room where the operation was to take place. They were all in theatre scrubs, with masks hanging loosely at their throats. Again, I felt as though I had wandered into a TV medical drama.

‘Juliette, we’re going to give you some special medicine in your hand and you’ll start to feel sleepy. When you wake up, your Mummy will be here. Alright?’ Juliette nodded.

It all happened very fast, and Juliette was ‘asleep’. My father and I were dismissed as the scrub-clad crew turned their attention to Juliette. I hated leaving. It was a huge leap of faith. I had to put her into the arms of these strangers, when I wanted to keep safe her in my own.

We returned to Juliette’s room for an anxious wait of several hours. Finally, a nurse popped her head around the door to let us know we could go up to the theatre wing. Juliette was awake.

Again, my father accompanied me. As we walked towards the recovery room, I could hear my little girl wailing hoarsely, and angrily. Two masked nurses hunched over her, but I could make out Juliette’s legs buckled in misery, her feet writhing against each other under the hospital gown. As we got closer, I could see she was trying to pluck at the tube that now emerged from her chest. They were holding her down.

Juliette’s bereft sobbing continued as my eyes took in the strips of tape which held bloodied lacerations on her neck. My perfect baby.

The sounds that came from me then were like those of an animal. My father pulled my head against his chest, tears in his own eyes, but I did not want Juliette to see or hear me like this. I left the room, collapsing against the wall onto the floor as soon as I turned the corner.

I was probably only there for a minute or two. It hit me suddenly and with enormous force, that Juliette needed me to be strong. I had to fight for her. This was the first time her illness had made her suffer, and I had crumbled. I was angry. The primitive need to defend her filled every fibre of my being. I wished with all my heart that the wretched disease would take on a physical form, like a wolf, so that I could tear it apart with my hands and my teeth.  Standing outside that recovery room, I had superhuman strength. Nothing could hurt Juliette with me in its path.

But that was the trouble. There was no path and no wolf either. The enemy was already within, invisible, and making its home in my daughter’s innocent body; a malicious Trojan horse I could not even touch.

 

 

 

Chapter Three

Happy Christmas

 

I picked myself up from the floor and returned to the recovery room. Juliette was still crying, and struggling against the arms stopping her from pulling out the Hickman line. Making a conscious effort to compose my face, I went over to where she could see me. My hand found her cheek, and I slid my fingers into her soft hair. ‘Hello my little girl. It’s alright. I’m here now.’ One of the nurses patted my arm.

‘This is a good sign,’ she said, nodding at Juliette. ‘She’s angry with us, and that means she’s a fighter!’

If Juliette was fighting, she could count on my strength too. I had to make a battle plan. I was twelve weeks pregnant; not too late for a termination. Juliette needed all my reserves of energy and time, and a new baby would not allow that. No sooner had I formed this thought, than I knew an abortion was out of the question. I had terminated a pregnancy in my third year at university and for more than a year afterwards, I suffered from chronic guilt and depression. I could not do it again. Besides, what if we lost Juliette anyway? I could not let myself think about it.

Returning with Juliette to her room, we found Steph and Adam were back. Juliette was asleep again and did not stir as the orderly locked her bed into place. Steph saw the taped incisions on Juliette’s neck. Thankfully, the gown concealed the tubes which now emerged from her chest. ‘It’s fine, darling. It’s fine,’ he said. ‘She’s going to be OK.’ I wanted so much to believe him.

While Juliette slept, whether through fear or shock the rest of us began acting as though meeting like this was the most natural thing in the world. We swapped news, read the papers and ate sandwiches. We were clinging to former definitions of normal by our fingernails.

Dr Nicholson, who we had met the night before, appeared with ‘Good news!’ He sat on the edge of the bed in our crowded room. ‘There are four main types of leukaemia,’ he explained, ‘but two that generally affect children. We took some cells from Juliette’s spine to have a look, and it’s fantastic because those cells show that she has the best one. It’s called Acute Lymphoblastic Leukaemia. ALL for short.’

The ‘best’ leukaemia? We certainly felt good news starved, but we stared at him as blankly as hunger victims.

‘The prognosis is far better with ALL than with other types of leukaemia, like Acute Myeloidic Leukaemia.’ Oh, so that was slightly positive, but it was not exactly our idea of something to celebrate. The doctor’s efforts at a positive spin were heroic, but now there was no doubt.

Juliette had cancer.

She was awake now, and started being sick. There was nothing in her stomach, and the retching that seized her was heartbreaking to watch. In between times, she lay listless and unsmiling. Her face had already started to puff up with all the fluid they were putting into her. She looked ill. The previous morning my girl had seemed healthy and normal. Twenty-four hours later, these doctors had transformed her into a cancer patient.

Steph turned his mind to practical arrangements. Elodie and Pierre were still with Emily; it was Sunday, but Emily needed to go to work the next day. ‘I’m going to take the children over to Kate’s and feed the dog,’ he said. My good friend, Kate, stalwart ally in a crisis, had offered to have Elodie and Pierre to stay. What must they be thinking? Pierre was just a baby, a couple of weeks short of his second birthday and could not possibly understand why one of his sisters and both of his parents had suddenly disappeared. Steph was one step ahead of me. I felt like a terrible mother for allowing this crisis with Juliette to erase worries about Elodie and Pierre. I was grateful they had Steph.

While Steph was gone, Dr Nicholson put his head round the door again and asked if he could see Steph and me in his office. ‘We need to discuss Juliette’s treatment.’ My stomach turned over.

‘Steph won’t be back until later this evening,’ I said.

‘I’ll come instead,’ said my mother.

The doctor looked doubtful. ‘The thing is, we need both parents’ written permission for the treatment decisions we make.’ NHS procedures had begun to impose themselves over our drama.

In a little side office, Dr Nicholson spoke calmly about grades of leukaemia, and about how the first blood test Juliette had at Colchester hospital would decide her level of treatment. Juliette was graded B. This was not as good as A, but better than C. However, at 103,000 abnormal white blood cells Juliette had narrowly avoided being graded C. He explained that her treatment regime would involve an initial course of chemotherapy, strong enough to get her into remission within three weeks. Once she was in remission, they would allow her to leave hospital. After this, she would follow a two-year programme of intravenous and spinal chemotherapy as well as chemo tablets and steroids. For two years? ‘Boys have to have three,’ said Dr Nicholson. ‘We don’t know why, but they don’t do as well as girls.’ This statement gave me courage. I asked the question that I had not even dared to consider until then.

‘What are her chances of surviving this?’

An awful hush descended like a shroud on the room. I felt my mother stiffen beside me, our senses entirely on the response from the doctor.  At last, he looked at me.

‘About 60%.’

A wall like the blade of a guillotine, fell between me and the rest of the world. I think my mother started to cry. For the second time in twenty-four hours, I was devoid of emotion and of expression as Dr Nicholson explained that Juliette’s very high abnormal blood cell count suggested that her disease was particularly aggressive. That was why intravenous treatment had to begin immediately.

I remembered the statistic of 90%.

90% of children with leukaemia live. Over the previous few hours I had clung to that statistic like a talisman, and now it had been snatched away.

When we returned to her room, Juliette was lying with legs curled up, her back to the door. She made the tiniest hump in the bed, and looked so vulnerable. It was not right that she could die. She was too young, too little, too beautiful. It was wrong that it was her, and I could not make it me.

Steph came back and held me tight against him as I gave him the news. I was broken by the crisis, the normal rhythms of life had evaporated. Steph however, was in the grip of practicalities. This should have been reassuring, but I was alienated. Logically I knew how much I needed his strength, but I was not feeling logical. I was almost angry that he could worry about our other car or make plans for our dog to be fed. What I needed at that moment was to be sure he felt just as I did. At that moment I could not see how for the sake of his sanity Steph needed to be practical. He could not fall apart because I had already done so.

There was so much we were not saying to each other. We had to start making sense of what was happening to Juliette and to our family. My mother thought so as well. ‘You two go home,’ she said. ‘I’ll stay with Juliette tonight. The other children are fine. You need a break and some time together. Off you go and I’ll see you in the morning.’

Although I hated leaving Juliette, it made sense. We had to regroup so we could come back fighting. Juliette seemed a bit better, or at least she had not been sick for a while. ‘Darling, would you like Tatty to stay with you tonight?’ Tatty was the name her grandchildren used for my mother. Juliette nodded. My father kissed Juliette and said goodbye to us. He was going home to feed their animals. Dani and Adam were leaving too. Before Steph and I set off from the hospital, we waited for Juliette to have some supper. She managed to keep it down. ‘Papa and I will be back in the morning, and we’ll bring Elodie and Pierre to see you as well. Alright?’ Juliette nodded.

There was no food at home so we picked up some essentials on the way back from the hospital. Strange to think I had last been at the house only the previous morning, planning a weekend away. It seemed like a different lifetime. As Steph and I ate our meal, I was aware of the terrifying chasm of thoughts neither of us could express. Steph felt it too. We punctuated the silence with desperate stabs at being positive, more to convince ourselves than each other.

In the morning, we walked up to Elodie’s school. The head teacher, Jill, was already in class but the look on our faces was enough for another member of staff to go and fetch her. Jill was shocked and despite her best efforts, she started to cry. We asked her permission to take Elodie out of school for the remainder of the term. It seemed the best solution. Within days, my other sister, Dido, was due over from America with her family. We were supposed to be having a big Christmas gathering at our parents’ house. If Elodie and Pierre were already there, Steph and I could concentrate on Juliette. Jill agreed.

After packing some things for Elodie and Pierre, we drove to Kate’s. We got a huge smile and kisses from Pierre, but Elodie greeted us with a worried face.

‘What’s wrong with Juliette?’

‘Lolo, she’s got an illness called leukaemia,’ I said. ‘Her blood isn’t well. That’s why she needs to stay in hospital for a while so the doctors can give her medicine to make her better.’

‘The doctors put some special tubes in her yesterday,’ Steph went on. ‘You’ll see them today. Oh Lolo, don’t be scared. She’s going to be OK.’ Steph hugged Elodie while I thanked Kate and strapped Pierre into his car seat. Elodie’s reaction was another dimension to the pain of what was happening. She and Pierre needed protecting too.

For six, Elodie was a mature little girl. She had such an intuition for the feelings of others and though we tried to make light of what was happening, she clearly did not believe all our spin. Elodie hated to see people suffer, and she adored Juliette. I was always amazed at how patient Elodie could be with her more hot-tempered sister. The dynamic between the girls often reminded me of that between Steph and myself.

Elodie had a knack of persuading Juliette to play games that were against Juliette’s natural inclination. These often involved a performance, usually dancing. Elodie spent ages putting a dance routine together and then taught it to Juliette, but Juliette could not be serious about it for long. Either she became bored and refused to co-operate or she would rebel against her sister’s discipline and create an exaggerated dance of her own. Elodie tried to keep control at first but more often than not, the girls would dissolve into giggles. They were opposites on the scale in most ways but, although she had become the noisier one, Juliette hero-worshipped her calmer sister.

Now we had to tell Elodie some potentially terrifying facts, and she absorbed these with her customary calm and circumspection. As well as this, she had the sensitivity to try and head off our feelings of guilt that we had abandoned her and Pierre for the previous two nights.

‘We were fine, Mummy,’ she reassured us. ‘And I made sure Pierre didn’t lose his nightnight.’ Without his nightnight, a bit of quilt from his cot bumper, her little brother could not sleep.

On the way to Cambridge, we tried to prepare Elodie for what Juliette’s Hickman line looked like. ‘Will Juliette be able to come to Tatty and Grandpa’s for Christmas?’ she asked.

‘Darling, we don’t know that yet. I hope so,’ I replied.

‘Does Father Christmas visit children in hospital?’

‘Definitely. Don’t worry about that.’

Elodie and Pierre were excited to see Juliette, but the atmosphere was not happy when we arrived. My mother looked exhausted. Juliette had wet the bed again several times during the night and she was ashamed and angry with everyone. No amount of reassurance from the nurses that it was not her fault, made her feel any better. She did not greet Elodie and Pierre.

The first twenty-four hours since her diagnosis had taken a little girl and placed her in a completely alien environment. She had endured major surgery and was permanently connected to various machines from the tubes in her chest. She was only three, and the look she gave me when I walked into the room was one of reproach. I felt horrible for having left her.

Elodie tried her best. ‘Juliette, look at all the presents we’ve got for you!’ Lots of people had given us things for Juliette, but Juliette did not respond. She lay with her back to us. Pierre and Elodie did not know what to do with themselves.

‘Come on you two,’ said Steph. ‘Let’s go and see the playroom.’

Was this how it was going to be, from now on?  Had the bouncy, cheeky, laughing Juliette gone forever, leaving this ill child in her place? I was desperate. My mother and I tried everything to make her laugh, to get some kind of a response, but nothing worked.

A well-meaning nurse came in at one point. She took in our miserable faces and Juliette’s sullen hump in the bed. ‘It’s the anaesthetic,’ she explained. ‘Come on, Juliette,’ she went on, briskly. ‘There’s no need to behave like that.’ She had probably known hundreds of children in a similar state, but for us this was new. Juliette was suffering, and there was absolutely nothing we could do about it.

I had brought her advent calendar from home, and it sat propped up and ignored on the table beside her bed. Then I remembered she had a chocolate one too. I brought it out.

‘Juliette, look. You’ve got two days to open now.’ She wanted to resist me, I could tell. It was her right to stay angry with me after what I had allowed to happen to her but like her mother, she could not resist chocolate. She rolled over and pushed the squares out from behind the numbered doors, then she looked at me. ‘Can I eat tomorrow’s too?’

I laughed but I wanted to cry. ‘Of course you can!’ It was advent calendar anarchy over the next few minutes. Maybe that amounted to spoiling her, but how could I not? I was so grateful that a spark of the old Juliette had returned. The lectures about treating her as a normal child so as not to make her siblings jealous and turn her into a capricious monster, could wait.

With her mood partly restored, Elodie and Pierre came back from the playroom. Elodie was overjoyed. She sat next to Juliette on the bed and handed her sister presents to unwrap. Juliette was soon back to her clowning best as she looked at her new toys, colouring books and felt tips. She laughed and put on funny voices to delight us all.

Another doctor appeared in the doorway. She was smiley and brimming with energy. ‘I’m Denise,’ she said. ‘Sorry I couldn’t be here to meet you yesterday. I’m going to be Juliette’s consultant.’ She spoke fast. ‘Dr Nicholson has explained to you, hasn’t he, that Juliette will get her first dose of chemo today?’ We nodded. ‘We’ll get that set up shortly.’

‘What will it do to her?’ I had to ask the question, even if Steph would not.

‘She’s going to feel tired, and it might make her feel a bit sick but we can give her something for the nausea. Don’t worry.’

Can I have it, instead of her?

All too soon, the nurses arrived. They carried an ominous looking bag covered with printed warnings. Thick gloves and aprons protected these women from the poison they were about to pump straight into our little girl’s bloodstream. I looked at Juliette. She was pale but still so beautiful, and she had just become once more the girl I knew. How could I let this happen? They were asking us to walk off a cliff, blindfolded while saying ‘you can trust us’. I wanted to believe this evil liquid would make her better and that these people had Juliette’s best interests at heart but in the short term, the evidence was that they had made her ill.

I was not in control any more. My role as the main person who looked after Juliette and knew what was best for her had disappeared. I felt useless, redundant. Juliette sat quietly in bed with Elodie beside her. They were colouring. Pierre was in the playroom with Steph. All I could do was sit with my mother and watch as the chemotherapy dripped slowly through the tube into Juliette’s body. When the bag was empty there was a loud beep, and a nurse appeared. She unhooked the empty bag from the stand and replaced it with a new bag of saline.

My father arrived to take my mother, Elodie and Pierre back to their house. ‘How did it go today?’ he asked us.

‘Fine,’ I lied. ‘Didn’t it, Juliette?’

Steph and I took our last chance for some air before they went. I cried as soon as we left the ward. Steph put an arm round my shoulders. ‘She’s going to be OK, she’ll beat this. She’s our little fighter, remember?’ His eyes implored me to believe, so that he could believe too.

In a corridor of the main hospital, a woman approached us. She introduced herself as the manager of Acorn House. ‘We call it the “home from home”,’ she explained. We’ll give you a room so that one of you can always be with your daughter on the ward. Your other children can stay at the house too. It really helps parents and families who are here for a long time.’ Again, my brain protested, why do we get this special treatment?

Before my parents left, we collected some overnight things and then made the short walk through the hospital grounds to see Acorn House. It was a brand new building, clean and welcoming with a dozen bedrooms, a large kitchen, a sitting room and a playroom. The manager led us upstairs and unlocked one of the bedrooms. We decided that Steph was going to spend the first night at the house while I slept on the ward with Juliette. I wanted to be able to do something after abandoning her the previous night.

Elodie and Pierre could not help being excited at the thought of going to their grandparents and seeing their cousins. Elodie tried her best to be diplomatic, but Juliette did not want them to go. I said goodbye to my mother and the children more quickly than I wanted to so I could return my attention to Juliette. ‘We’re going to have fun, aren’t we Juliette?’

Fun. What was I saying?

The next morning Steph appeared, bright and fresh after a night not broken by saline bag changes and temperature checking. I needed the burst of energy he brought. Juliette had a day’s break from chemo, so all we needed to do was entertain her. Luckily, Christmas had arrived on Ward C2. Through her open door, Juliette had spotted some men putting up a Christmas tree. She was excited. We did not have one at home yet.

‘Can I go and see the Christmas tree?’

Untangling tubes from legs and arms, we helped Juliette off the bed and wheeled her drip stand gingerly along the corridor to the chair beside the tree. She climbed onto the seat and sat there in her long pink nightdress, with oversized mauve slippers dangling from her feet. For a moment she looked shy, but then her face broke into the biggest smile.

Time blurred over the next couple of weeks. Every other day Juliette had intravenous chemo but she had to bear other invasive procedures too, such as lumbar punctures, steroid tablets, IV antibiotics, anti-nausea syrup and daily blood tests. We started to learn the terminology for her treatment and condition. It made us feel more in control and yet still we felt guilty. Juliette looked ill. We felt guilty because we had let her have the treatment which made her look this way, and guilty because we were her healthy parents and could not take the disease for her.

Everything we were allowed to do for her, we did. It made us feel like her parents again. Juliette found getting off her bed every ten minutes for a wee, too arduous with her drip stand, so she started using a bedpan. A nurse showed us where to empty these. We became regular visitors to the sluice room, the stench of industrial disinfectant and human waste filling our nostrils. However it was one of the few things we were able to do for Juliette, so neither of us cared.

We tried to stay positive, but there was plenty to scare and depress us. In her first week at Addenbrookes, Juliette was having a rare moment of feeling well enough to enjoy the hospital playroom, when a nurse came in to say it was time to set up her chemo.

Reluctant to break Juliette’s positive mood, I asked if it could be done in the playroom. The nurse made a face. ‘We can’t really do that, for safety reasons,’ she said, apologetically.

‘Why?’ I asked flippantly, ‘Would it burn a hole in the lino if it were spilt?’

‘Yes. Pretty much,’ was the chilling reply.

Every day we shared intimate space with other parents and their children fighting their own battles. It is a little shaming, but I believe it’s human nature when you’re faced with horrible circumstances that you work out whether your situation is better or worse than others. Some of the children who were being treated alongside Juliette had inoperable tumours; they were sickly, bald and had parents who should have been without hope. We met some inspiring people during our time on C2 ward, who made us feel lucky. Of course, there was anger and bitterness from some, but there was also hope enough to make the tired spirit soar.

On our third day in hospital, we met parents whose four-month-old baby had a brain tumour. Doctors told them that even with surgery he had only a 10% chance of recovery. ‘I don’t believe that,’ said his feisty mother. ‘I think statistics are nonsense, and I’m going to keep caring for him like a normal baby.’

The strength of her normal baby’s chemotherapy treatment meant that she had to wear gloves when she changed his nappy, all of which went straight to the toxic waste area of the hospital.

After the month we spent at Addenbrookes, we did not see that family again. We never asked what happened to that little boy, because at the time we simply could not risk knowing the answer. It sounds callous, but the grip on hope for parents in our situation is tenuous and believing that Juliette would live was essential to every part of our daily lives. We could not bear to learn how that little baby had lost his fight.

The patients’ fridge at Addenbrookes had shelves that appeared to me like little rafts of hope. One mother swore by the anti-oxidant properties of blueberries, while another family had entirely switched to a macrobiotic diet; anything that would give their child the edge, to be on the right side of statistics.

Despite all the success stories, despite all the bright cheerfulness of the medical staff, the spectre of what Juliette’s illness could mean loomed over us. We were trapped in a nightmare no morning waking could dispel, forced to contain our fears so that we could stay positive for Juliette and for each other. To achieve this we focussed our attention on the minutiae, from where our eyes could not examine the horizon.

Cancer. More patients than ever were overcoming the disease, but it still sounded like death to me. Our daughter had cancer of the blood. We had this surreal, abstract concept to get used to and all the while, we were faced with the realities of Juliette’s discomfort, and the emotional cost of adapting to a life we did not want.

During Juliette’s third week of treatment, it was Pierre’s second birthday and he was a hundred miles away at my parents’ house. I felt guilty, but Steph reasoned that Juliette needed us more. I loved my little boy. Although they came to visit a few times with my parents, I missed him and Elodie desperately. I had a particular worry about Pierre however, because of the mother I had been to him during his first six months while I was depressed. I tried to convince myself he was better off with my parents, and that if I had to miss any of his birthdays then his second was the least worst one.

After his colicky start Pierre had become a happy little boy and was very easy to please. With two daughters and growing up without brothers, I found it extraordinary having a son. I marvelled at Pierre’s pre-speech, hyperventilating excitement when we passed a building site full of bulldozers, diggers and cranes and realised that I had not taught him that.

Pierre was a very affectionate little boy. He was going through the stage where all objects were mountains to climb. Despite having adventure in his heart he was not very coordinated, and my lisping little boy with cutely jutting ears regularly sported a black eye, cut forehead or grazed nose from his latest assault on the furniture.

As no one suggested we had a choice, Steph and I began our new lives as parents of a seriously ill child. So strange and frightening at first, it was not long before we got used to life at Addenbrookes. After a very short time, watching the electric colours of Juliette’s chemotherapy drip from bags through tubes into her body went from scary to almost commonplace.

The routine of living amongst children with various cancers imposed itself over what we had previously considered normal. Play specialists encouraged the children to cover sick bowls with sequins, and call them hats. They showed the children how to apply paint with the same mouthwash sponges they used for their ulcers. All children on chemotherapy had mouth ulcers. Using the accessories of their treatment for fun was no accident. It was to help take the fear away.

The play specialists visited children too ill for the playroom, bringing toys or just stopped by for a chat. In this most difficult of environments, the nurses were always good-natured. Doctors lingered with each patient, chatting about everything, not just to explain the horrible things that were happening to them. After a while, they felt like friends.

There were other visitors to the ward. One day the local football team, Cambridge United, dropped by, and local businesses sent mountains of sweets and presents to the children. This special attention was a shock, until we remembered. Our little girl was on a children’s cancer ward.

Daily chats with the doctors on their ward rounds, blood taking every morning at the hands of the tinsel-festooned phlebotomists, regular pulse monitoring and blood transfusions became our new normal. In reaching this point, we had the wonderful support of hospital staff who gave us as much medical information as we could handle but who also offered us a counsellor. Ruth, from the CLIC Sargent charity, was based at the hospital. Steph preferred not to talk, or to talk only to close friends and family. For myself, I found unloading fears to a knowledgeable stranger a huge relief.

My sister Dido arrived from the States with her children, Harry and Annie. They spent the whole day with us, nursing jetlag. Juliette loved seeing her aunt and cousins but was miserable when they left her to join the rest of the family at my parents’ house.

One day, Juliette’s best friend came to see her. Little Arabella seemed nervous at how her friend had changed, but Juliette was thrilled to introduce someone she loved from her old world, into her new world. For me, seeing the girls together was a painful reminder of the life Juliette used to have. I looked at Arabella’s pink, untroubled cheeks and was envious of what we had all lost.

We had other visitors, most of whom were a happy distraction. The ones who lifted our spirits the most were friends who brought laughter and gossip from the outside world. We did not cope well with the sadness of others. Of course, we were grateful they shared our fears, but their emotion put us in the bizarre position of needing to find words to comfort them. We knew the situation with Juliette was not great but we were living with it constantly and during those weeks what we needed most of all was a few minutes’ relief.

Visitors helped keep us sane, but our biggest source of strength was Juliette herself. Her hair and skin might have lost their vibrancy, but her sense of humour and fun shone from every pore. She entranced members of staff with her jokes, twinkling eyes and infectious giggle and loved the attention this brought her. As a newly diagnosed patient, she had the privilege of a single room only until a seriously ill child needed it, and after about ten days she was moved onto a busier four-bed ward. Although it was unsettling to change rooms, I found guilty comfort in knowing that she was considered healthier than another child was. Juliette loved the bustle of her new ward and adored the attention of so many nurses and other member of staff. Our hearts burst with pride at how well she was coping with her illness, and with pain that she had to cope with it at all.

A frequent visitor in those early weeks, my mother developed an irreverent game with her granddaughter. At the word of her Tatty, Juliette would climb onto the legs of her drip stand, hold the pole tightly and my mother would whoop, pushing her up and down the corridor at a run while Juliette hooted with laughter. Of course it was dangerous and irresponsible but it was so wonderful for Juliette’s morale and therefore for our own, that staff were kind enough to turn a blind eye.

Acorn House was our refuge from the pressure of the ward. It was close to Juliette yet was a deliberately medical-free environment, to which we could escape for moments of rest. I would go back to Acorn House and cry, shower the detergent smell from my skin and hair, sleep and talk with other parents in the communal areas. We shared our experiences, commiserated and supported, recharging our batteries, ready to face the stress of the ward again. Being able to cook and eat away from the hospital meant that when we had special visitors, there was a relaxed space to spend time with them, and unburden ourselves a little. Once or twice Elodie and Pierre stayed there too. They slept head to toe in the other single bed in the room. It was an adventure for them, and meant they could spend more time with their sister.

One treasured day a few days before Christmas when my mother was visiting with Elodie and Pierre, Juliette was given permission to leave the confines of the hospital for the first time so she could see Acorn House. She was excited, but nervous and fragile. After three weeks of chemo she could not walk the couple of hundred metres on her own, so we wheeled her over in Pierre’s pushchair.

Acorn House was sparkling with Christmas decorations but as Elodie and Pierre tumbled into the playroom, Juliette hung back. Before she was ill, she was the most boisterous of the three but now it seemed she understood her new frailness. Elodie took her hand. ‘Come on Juliette, let’s play in the Wendy house.’

Juliette was a cancer patient, that much was unavoidable but she was also just a child. When she started to play with her sister and brother in that ‘normal’ environment away from uniforms and beeping machines for the first time since her diagnosis, I wanted to cry with happiness.

As his sisters played house and Pierre quietly explored the bucket of cars, I remembered how I had watched Juliette out of the window that summer day in London. I wanted to burn this memory onto my retina as I had that one. How many more memories of Juliette could we count on?

To keep positive, we depended on a steady dose of good news. One morning Juliette’s consultant came to let us know that her latest blood test results showed Juliette was in remission. It was expected, but hearing it gave me a boost and the courage to ask Denise a question.

‘Do you think she will live?’

‘Yes,’ said Denise, without a moment’s hesitation. ‘I really think she will live.’

Without thinking I grabbed her hands, saying, ‘Thank you, thank you, thank you,’ over and over again. For her doctor to have such faith in Juliette’s recovery, to believe in her life was the greatest endorsement of all. We could keep fighting.

It was not only her consultant who came to see Juliette. She had visits from doctors of all grades, and students too. One doctor was doing a study on the effects of steroids on growth; others came just to peer at the new leukaemia patient. However, she was not the new patient for long. Children seemed to arrive on the ward every day, enough so that we felt like old hands after a couple of weeks.

As time went on, we were resigned to spending Christmas in hospital. Tentatively, we had started to relax, confident that Juliette’s treatment was working. Our faith in the Addenbrookes team could not have been stronger, but then we had this question from one of Juliette’s team of doctors.

‘Do you want the good news or the bad news?’

Oh God. What bad news could we possibly bear?

‘The bad news,’ I said, automatically.

‘The bad news is that we’re going to miss you when you go home for Christmas!’ It was the 23rd December.

They prepared us for taking Juliette away from the safety of the hospital, but even so, we were worried. What if her line site got infected?  What if we couldn’t remember which drugs she was supposed to take? What if she became ill when we were going to be so far away from Addenbrookes?  What if we failed in our basic duty of care?

We were not confident, but they reassured us. In any case, they had arranged appointments for Juliette every other day at my parents’ local hospital, and a return to Addenbrookes for chemo on Boxing Day. The treatment schedule did not respect public holidays.

That Juliette was allowed out of hospital for Christmas at all when it meant more work for the staff, was my first example of how our wonderful National Health Service makes efforts to minimize the trauma for families like ours. We were encouraged to make Juliette’s life as normal as possible, and they were on hand to help us achieve it. I tried to dismiss the darker side of this thinking, which was that no one knew better than her smiling doctors did just how fragile Juliette’s grasp on life was.

Steph and I packed up and dressed Juliette in lots of warm layers. As the cold air outside the hospital hit us, we exchanged a look. We were nervous and yet so thankful that we could take our daughter away from the place on which she had been completely dependent over the past month. As we strapped her into the car, we saw how tiny and vulnerable she was, her white face contrasting with the pink of her hat. She looked like a patient, the bulge of her Hickman line bag evident even under all the layers, yet she had the smallest of smiles on her lips. Juliette was excited, but like us she seemed a little afraid. I think we had all become institutionalised.

During the ninety-minute journey, I kept looking behind to check Juliette was all right. Eventually she went to sleep and I found myself leaning back to check her pulse. Steph and I talked quietly, and allowed ourselves to relax into the idea of an almost normal family Christmas. Juliette had earned her reprieve.

Steph has always loved Christmas with my family. My mother is the doyenne of large family events. When my sisters and I were children, tight finances had meant that for a few years our family played host to foreign language students. We had Vietnamese, South American and students of other nationalities staying in our lovely, big, but chilly Scottish house. It was hard work for my mother but as children, we loved the diverse and unusual company. The nicer students would give us biscuits, teach us songs from their native countries and play games with us. Every night there were huge meals to prepare, and it was a challenge to which my mother loved to rise.

She seemed to thrive in these noisy and chaotic gatherings, and has always been a superb cook. For our wedding, she prepared lunch and dinner for 150 people. All prepared in advance of course and served by waiting staff on the day, but it was spectacular. Christmas was like that too, though without the staff. Lots to eat and drink, and my mother at the centre of it all, captaining the family ship amid much laughter.

We arrived at my parents’ house and the family surrounded us with hugs and excited voices. It was surreal we were there, and that Juliette was with us. Her cousins, brother and sister took her hands and led her to the undecorated tree. At first, Juliette hung back, whether feeling fragile or just disoriented after a four-week stay in hospital but she was soon joining in, rummaging for Christmas decorations in the same box my sisters and I had used when we were small. It was a wonderful sight.

At five, Harry was a little younger than Elodie and a bit older than Juliette. Born in Edinburgh while his father completed another degree, he was now a blonde Californian boy. Although the children did not see each other often, they had a lovely rapport. Harry’s little sister, Annie, was just twelve days older than Pierre. In fact, we had been visiting Dido’s family in the States when we both discovered we were carrying them. Dido called our mother on the phone, saying, ‘Geves and I have some news. We’re pregnant.’ It is one of the few occasions we have known her to be entirely lost for words.

It was an exaggeratedly noisy Christmas. It seemed very important to be normal and the effort it took to be so, showed on all of us. We took many photos. In one of these pictures, the five children are all wearing hats stolen from their grandparents’ hat cupboard.  Strangely, they had all picked headwear that reflected their character in some way. Juliette’s was a soft and sumptuous fur creation, a relic of the seventies glamour my mother had perfected. She looked radiant, eyes shining out from underneath the fur and with colour in her skin for the first time in weeks. My beautiful daughter.

They had let us take Juliette away from Addenbrookes, but we were on a very short leash. She needed a blood test every other day and at the Queens Medical Centre, we experienced a different children’s cancer ward. There were more patients and it was an older building. While the paediatric oncology ward in Cambridge was on the ground floor, in Nottingham it was on one of the higher levels of a tower block.

The nurses were very welcoming to Juliette, and Juliette seemed almost glad to be back in a semi-familiar medical environment. I knew how she felt. For me it was reassuring that while the location was completely different, the language and terms were identical. We felt safe.

On Boxing Day, I was grateful for Dani’s company when she joined us for Juliette’s long session of chemotherapy at Addenbrookes. The three of us lay on beds in a semi-deserted ward, watching Christmas films. Juliette needed a blood transfusion too, which made it a very long day.

We headed back to Essex for the New Year, and there my cousin Jo and her family joined us. Like me, Jo had two sisters close in age and the six of us spent many childhood holidays together. We put on plays, laid treasure hunts and wrote quizzes for each other. Jo and I were both at St Andrews University and we both studied French. We were close, but Jo rolled her older cousinly eyes at my bad behaviour. Like me, she had married a Frenchman. She met Sébastien when they were both studying the wine trade in France and they had just overseen the renovation of a lovely chateau in the Dordogne.

My aunt, Jo’s mother, had died of cancer ten years earlier and Jo’s unconstrained rage and misery when I told her about Juliette’s diagnosis was a huge comfort. With the best of intentions, many kind people unconsciously brushed away legitimate fears with their talk of hope and fantastic treatments. Just occasionally, I longed to see the anger and disbelief I felt reflected in the words of another. Being afraid is very lonely.

That New Year’s Eve, Jo and Sébastien’s children played with ours as my cousin and I talked for hours about mothers, cancer and the unfairness of life.

The men shared not words, but Bordeaux.

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