The Bubble Boy Read online

  One of the interns bites his top lip, one scratches the side of her head and the last one raises an eyebrow then he stares down at the ground. Dr Moore grins at me.

  ‘Well, Joe,’ he says. ‘Looks like you’ve stumped the brightest brains of Cambridge.’ He looks to the interns. ‘Discuss it amongst yourselves.’

  They gather in a circle and start to whisper.

  I look at the monitors then up at the ceiling. I wish I didn’t stump them. I wish I didn’t stump the proper doctors too. I wish the things they do to fix other kids had worked on me. I’ve read about other SCID kids who have injections that cost lots of money. It doesn’t cure them but it does mean they can go home and they can go to school. They have to wear a mask and stay at home if other kids have colds. They tell me the clock is ticking; that the older I get the harder it will be to find a cure. But every year they try something new and say that maybe I’ll make it outside. Last month they talked about giving me gene therapy. It’s really new. It’s when they grow a new gene and then they’d put it in my body and give me a new immune system to fight disease. But nothing seems to get rid of my super SCID. I hope they find something soon. I know I’m safer in my bubble, but one day I’d love to go to school and learn my lessons from a real teacher and not a cartoon or a satellite link-up.

  ‘So,’ Dr Moore says. ‘Now you’ve had your chat, tell me your conclusions. Miss Hunter?’

  ‘Decrease temperature?’

  ‘Exactly, Miss Hunter. Check for foreign objects in the filters and let’s decrease the temperature to . . . what do we think?’

  ‘Nineteen,’ I say.

  Dr Hussein smiles and nods at one of the interns. ‘Mr Henderson, I think this chap might know more than you. Maybe you need to hand over your coat.’

  They all laugh, then Dr Moore asks me to roll up my sleeves.

  ‘And what about the bruises?’

  ‘They’re nearly gone,’ I say.

  ‘You’ve not got any on your body?’

  ‘Only a few, but they’re disappearing.’

  ‘Maybe we should take a look.’

  I lift up my sweatshirt and pull it up over my head.

  ‘Contusions, and . . . Mr Henderson?’

  ‘Malnutrition – Vitamins C, K and B12. Sepsis?’

  ‘Think what’s more relevant here.’ Dr Moore presses his fingers gently on my back. ‘Anything else? Mr Francis? Can you help us out?’

  ‘Reaction to drugs – aspirin, the corticosteroids prednisone and prednisolone, anticoagulants, antibiotics, and blood thinners.’

  ‘Excellent . . . And?’

  ‘Liver disease.’

  The room goes quiet. There’s so many things that could go wrong with me but I’m used to talking about them now.

  Dr Moore taps my back. ‘Good lad,’ he says.

  I put my sweatshirt back on. The door slides open. I sigh. Charlotte R walks in carrying a silver dish with a needle and swab. She puts the dish down on the table next to my laptop. Dr Moore looks at Beth in a way that says: ‘we need to talk somewhere where Joe can’t hear us’. She tells me she’ll be back in a minute and follows Dr Moore towards the door.

  ‘We’ll check in again later, Joe.’

  I nod. They all walk out into the transition zone. I listen and try to hear what Dr Moore’s saying to Beth but all I can hear is them spraying disinfectant and running the taps. Charlotte R taps me on the shoulder.

  ‘Sorry,’ she says. ‘But we have to do this now.’

  ‘It’s okay.’

  I hold out my arm. Charlotte R looks for a space where the bruises have faded. She finds a white bit of skin halfway between my wrist and my elbow, squirts the numbing spray then picks up the needle. I turn away, I’ve had hundreds of injections but I still can’t look.

  ‘There, all done.’

  Charlotte R presses a plaster onto my arm. I turn back and she shows me my blood in the syringe.

  Sometimes when I’m ill I think it will come out a different colour but it doesn’t matter if my whites are up or down, it always looks the same. Dark red, so dark it’s almost brown. They’ve taken loads of it before. They must have taken so much out of me they could fill another body.

  I hold a swab down on my arm while Charlotte R screws the top down on the tube of blood and puts it in the dish.

  ‘I know,’ I say. ‘You’ve got to go.’

  ‘Yes, I’m sorry. I’ve got to get this back.’

  ‘It’s okay.’

  She smiles and goes out of the door.

  It seems like everyone is busy, rushing round looking after everyone else. They’re buzzing around like bees. Busy. Busy. Running down the corridors in and out of wards. It’s like there’s not enough of them to look after us. The sick kids.

  I’m trying to catch up on my algebra when Beth comes back in. I thought of telling Vic, my maths teacher, about my crash but I think the only thing he wants to talk about is maths. I ask Beth what the doctors had said to her. She tells me that they didn’t say much more, only that they think the worst is over and that neither of us should worry. I look at her and try to work out if there’s anything else but she just gives me a tired smile. She looks like my picture of Mum when she’s tired. Her eyes turn dark and her cheeks look red and sore. Beth says it’s the wind blowing in her face as she walks down the street, but I know it’s because she’s got up so early to see me.

  I shut Vic inside my laptop and we watch a programme about badgers on TV. When the adverts come on I look at Beth. She usually talks during the breaks. But today she’s staring into space, twirling her hair around her finger. She sees me looking.

  ‘You okay?’ she asks.

  ‘I am. But you’re quiet.’

  ‘Sorry,’ she says. ‘I didn’t really sleep last night.’

  ‘Because of me?’

  ‘Yes . . . and the noise of the traffic.’

  ‘I’m sorry.’

  ‘It’s not your fault London’s so busy.’

  We smile at each other then she looks down and picks the skin on her fingers. I swing my legs over the side of my bed.

  ‘But there is something wrong.’

  She takes a deep breath. ‘Not wrong, just something I need to tell you. Don’t worry, it’s not anything the doctors said.’

  ‘It’s okay,’ I say. ‘I think I know what it is. You’ve got to go away.’

  She nods.

  ‘I don’t mind,’ I say. ‘You said it was going to happen sometime. I don’t mind.’

  She smiles, then laughs. ‘You’re brilliant,’ she says. Then she stands up and I stand up too and she hugs me so tight I don’t think she’ll ever let go. ‘It’s only for a year,’ she whispers. I close my eyes. I don’t want to her leave but I know she must. Just because I’m in a bubble it doesn’t mean she has to be stuck in one too.

  She lets go of me. I look at the TV.

  ‘Want to play Tomb Raider?’

  ‘Okay. Anything’s better than watching that badger drink from a saucer.’

  I pick up the controls. My heart beats hard in my chest. Beth puts her arm around my shoulders and rests her head against mine.

  ‘It’ll be fine,’ she says. ‘I won’t be able to come so often but when I do I can stay for longer.’

  I hand her a controller and nod at the screens on the wall. ‘We’ll have to play on normal TV. Amir hasn’t shown me how to turn them on.’

  Beth looks weirded-out. ‘Why did he get so many?’

  ‘I don’t know, but I can’t wait for him to come back and show me how to work them!’

  I press Play and we play Tomb Raider for the rest of the morning. I get to the Amulet in a record 35 seconds but Beth is trapped in a cave and every time Lara falls off a ledge onto spines Beth lets out a little scream and we laugh. I tell her I can get her out if she wants. I found a website that tells you how to do it. She tells me she doesn’t want to cheat, then she makes Lara climb a rock face, but a piece of rock gives way and I laugh as Lara falls back onto t
he spikes again.

  After an hour Beth gives up and puts the controls down on my bed and we eat vacuum-packed ham sandwiches for lunch. I tell her about Henry and his walk, that he’s got to get used to going outside before he’s ready for his big trip to the mall, and I tell her about Amir and the aliens’ landing strip. She tells me to wish Henry good luck then tells me that maybe Amir is nuts after all.

  In the afternoon we look up Edinburgh on my laptop. We look at a map and I trace the red line out of London, through Cambridge, Nottingham and Sheffield and stop. I’m at 161 miles and it’s still not halfway. I keep going through Leeds and Newcastle until I get there – 403 miles. Beth sighs when she sees it will take 7 hours and 15 minutes by car.

  ‘It only takes 4 hours 20 minutes on a train,’ I say.

  ‘Well that’s better,’ she says.

  I look back at the map. I’ve looked at it loads of times, to check the places where Greg goes on his holidays, or places where other nurses go to work when they leave me. But no one’s ever gone to Edinburgh. I never realized it was that far. I close my eyes.

  ‘Shall we see what it looks like?’

  ‘Okay,’ she says.

  I type in Edinburgh. We look at pictures of the castle, and the University, and a big square in the middle of the city surrounded by tall black buildings.

  ‘It looks nice,’ I say.

  ‘The streets are really wide and straight,’ she says. ‘And it’s windy . . . Look up the hospital.’

  I search it up and we look at a picture of a big black house with spires at the ends. Beth points at another picture of a white glass building.

  ‘That’s the old part,’ she says. ‘I’ll be working in the research bit.’

  ‘Good,’ I say. ‘That other place looked creepy.’

  She laughs and we look at a few more, then we watch Taken on DVD. We’ve seen it three times but I still jump when the man pulls the girl out from under the bed and Beth still gets tears in her eyes at the end.

  When the screen goes blank, Beth yawns and looks at me. My stomach cramps. We don’t have to say anything. We both know it’s time for her to go. I get up and go to the bathroom. She’s standing by the window when I come back out. I go and stand beside her and we watch the roadworks’ traffic lights change from red to green and back again three times. My chest is tight and my throat aches. I want to talk to her but we’ve been quiet for so long that if I say something now I think it might make us both jump. She presses her finger against the glass like she’s going to draw.

  ‘It’s only for three weeks at first,’ she says.

  ‘It’s okay.’

  She turns and wraps her arms around me. Three weeks is a long time, but I’ll have to get used to her going.

  ‘It’s okay,’ she says. ‘We can Skype!’ I feel her breath on my ear as she squeezes me a little tighter. I’m glad we can Skype like I do with Henry. I must write to the person who invented Skype one day. Everything would be so much more rubbish without it.

  The streetlights are flickering as I watch her walk out onto the pavement and cross the road. She looks up and waves to me when she gets to the other side. I send her a text.

  See you in three weeks.

  She looks down. My phone buzzes.

  Love you, lots.

  Love you a bit.

  She walks along the road with her head down. Nearly bumps into a man who’s walking towards her. She looks up and waves. Then the bus comes.

  Didn’t mean it. Love you lots too.

  I Know.

  I must write to the person who invented text too.

  11 years, 3 months and 1 day

  The screens hang like black pictures on the wall. They’ve been blank for several days and Amir hasn’t been back to switch them on. I walk over to the window. It rained yesterday but today it must be hot because all the men digging the road have taken off their shirts. Across the road the people in the glass building are sitting at their desks, waving pieces of paper in front of their faces like fans. I lean forward to see if I can see Amir walking up the pavement. My head bumps against the glass. I can’t see him anywhere. All I can see are people crossing the road to walk in the shade. I glance at the monitors.

  Heart rate: 86

  Body temp.: 37.5C

  Room temp.: 18C

  Humidity: 7%

  Air purity: 98.5%

  It’s like everyone is melting except me.

  I go over to my bed and turn on my laptop. Sarah smiles at me. It’s another video, so she must still be on holiday.

  ‘Hi, Dew. Today we’re going to learn Archimedes’ Principle.’ She points at a picture of a watering can. I shake my head. I’m too tired to learn anything today. I go back to the window. A white van pulls up outside the glass building. Two men get out, open up the doors and carry fans and portable air-conditioners inside.

  I type a message to Henry.

  Hey Henry

  11:03

  Hey Joe

  11:03

  What are you doing?

  11:03

  Macbeth. It’s boring. You?

  11:04

  Archimedes’ Principle. If I get in a full bath

  and collect the water, it will weigh the same as me.

  11:05

  Have you got a bath?

  11:05

  No

  11:05

  . . . Macbeth killed four people.

  Wish he’d killed Shakespeare, too. Ha. Got to go.

  11:06

  Really? I’m bored.

  11:06

  I’m sorry. Breakfast and more NASA stuff.

  I’ll catch you later

  11:07

  Okay.

  11:07

  I want to ask Henry more about his trip but his Skype icon has gone off.

  I look back at the screens. I wish Amir would hurry up. The people in the glass building plug in their air-conditioners and fans. Pieces of paper blow off the tables onto the floor. The workmen stop digging up the road, put their drills down and drink bottles of water in the shade.

  I go back to my bed and turn on the TV. People are dying in West Africa from a new disease. The reporter says three and a half thousand have died already in Sierra Leone then he points at red dots on a map. The disease is spreading across Mali, Nigeria and into Chad. A doctor has flown back to America. She didn’t know she had the disease but she’s taken it back to Houston with her. She’s in quarantine and the police have closed off all of the hospital.

  I turn off the TV and lie back down on my bed.

  It’s hot outside and there’s a new disease that going to spread all over the world.

  I look around the room. I feel trapped in it today. Sometimes I wish it was bigger. Sometimes I wish I could get up and push the walls and they would slide back until the room became the size of a tennis court. But I wouldn’t stop. I’d keep pushing until the room grew as big as a football pitch. Then I could put a goal net up, paint a penalty spot, kick the ball, score a goal and run around with my hands above my head. I’d run towards the crowd and they’d shout my name, Joe Grant! Joe Grant! and I’d pump my fist, take off my shirt with number 10 on the back and throw it to them. And they’d cheer louder and I’d jump into them. They’d carry me above their heads, pass me from one person to the next and I’d feel their hands pressing on my back but I wouldn’t care about that, because I’d be big and full of muscles and all my bruises would be gone.

  I wish my real world was as big as the one in my head. But the walls are where they’ve always been. They haven’t moved, only the posters have. Theo Walcott is still there smiling at me. I wrote him a letter once asking if I could have his autograph, and if perhaps he could send me a ball. He sent me the picture that hangs on the wall. Sometimes I wish he would come and see me and I think I can hear his football studs on the floor in the transition zone. I think I hear him talking and another person replies and he speaks in Spanish and for a moment he’s brought Cesc Fàbregas with him, but it
can’t be, because he plays for Chelsea now, but he might have come back because every time I see them on TV Theo Walcott smiles at Cesc Fàbregas and I think they might be good friends.

  I look at the screens. If they were working I could watch every football match in the Premier League at the same time. I take a deep breath and blow out my cheeks. More than three days they’ve been blank but it feels like three weeks. I lie back, stare at the ceiling and wish it was the sky.

  It’s late in the afternoon when I hear voices in the transition zone. I don’t recognize one of them, but the other is Amir’s.

  ‘I’m okay,’ he says. ‘False alarm.’

  ‘But you know the rules.’

  ‘Yes,’ says Amir. ‘I took the three days and an extra one to be sure.’

  ‘Okay.’

  I hear the sound of running water, then the spray. The door slides open and Amir walks in. I stand up.

  ‘Amir, where have you been?’

  Amir smiles. ‘It’s okay,’ he says. ‘Don’t worry. I thought I had a sore throat but I remembered I swallowed a chicken bone.’

  ‘Was it serious?’

  ‘Yes,’ he says. ‘It got stuck for a while but I’m okay now.’ He grins. I know him better now but I still can’t tell if he’s joking or not.

  He walks over to the window and looks out, first across the buildings, then to the side of the window, then down the street. He whispers, ‘Yes, yes, yes.’

  ‘What is it?’ I ask.

  Amir rubs his hands together quickly like they’re cold. ‘It’s all good,’ he says. ‘The planes still come, the satellite dish is on the wall and the landing strip is halfway up the road.’

  It’s only been a few days but I’d begun to forget what it was like to have Amir around. I love Greg but Amir is the best at making me forget where I am.

  He turns away from the window. ‘You not been well?’

  ‘No.’

  ‘But you better now?’

  ‘I think so. Just a bit bored. It would have been better if they were working.’ I nod at the screens.