Tuesday 26th July
Joseph’s up early and very excited, even though he’s not the one that’s actually travelling today. ‘ I’m excited for Joshie,’ he tells me at 6am. Claire texts a few hours later to tell me they’re on their way then calls me from the ambulance to say everything’s gone smoothly so far. It’s a busy day at home and I plonk Joseph in front of the TV while I wash, iron, pack our bags and set up timers for various security lights. If the blog was still more widely available, I’d have pretended my brother was coming down to house-sit while we were away but there’s no need now. If we’re burgled while we’re in Italy, I’ll just hand the police a list of all the blog members and they can take DNA swabs and fingerprints. Just before lunch, one of Joseph’s school friends pops round with his mum and a couple of activity books to keep the boys occupied in Pavia. She invites him round for lunch and I get 3 hours to myself which proves invaluable. After mowing the lawn, I even have time for a haircut. Somewhat surprisingly, the hairdresser doesn’t ask me if I’m going away which is very disappointing as for once I am. Joseph receives his white senior belt at the end of his Taekwondo lesson and after our obligatory Chinese seafood hors d’oeuvres it’s a bath and an early night. I missed a call from Claire while we were out, but catch up once Joseph’s asleep. The flight couldn’t have gone better with no toilet problems whatsoever - not even for her. The plane was tiny but didn’t hit any turbulence on the way, so the journey was smooth and uneventful. The hospital is a bit of a culture shock with no strict protocol on hand washing or anything else by the sound of it. The commode leaks, just like the one on Fox Ward, but the nurses were quick to clean it up. Claire’s leaving them alone to get on with all the medical stuff as none of them speak English and it’s difficult to explain anything. She can see the town out of the window but it’s quite distant and, from what I’ve read, there’s not a lot there. Both parent and child are brought 2 meals a day and, by the sound of it, it’s far better than what the NHS serve up. Josh was excited by his first Italian menu and ordered pizza, but it appears the take away is closed on a Tuesday so he was left disappointed and went straight to sleep. They’re both exhausted from travelling. Josh will have the infusion tomorrow as there’s no reason to hang about. Even though Claire and I hardly ever see each other, it feels very odd knowing she’s so far away. The room is very basic and reminiscent of Portugal which is pretty tough emotionally, as we suspected. Strictly speaking, Joseph can only visit between 11-12 in the morning and 5-7 in the evening, but they will bend the rules for us as long as we’re discreet. I’ll try and explain the word to Joseph in the morning, but I’m not holding out too much hope...
Wednesday 27th July
Joseph and I have an equally good trip out the next day. Being taxied there by a friend means we’re on time and don’t have to suffer cabbie rants about ‘ bloody immigrants’ or how bad The Hammers have played this season. Easyjet lives up to its name and Joseph and I manage to blag speedy boarding and get our pick of seats onboard. A bad tummy ache only slightly dampens Joseph’s excitement as the plane takes off and there are enough gaps in the clouds for him to wonder at the tiny world 37,000 feet below him. We have no trouble finding our Fanny van once we land but the driver’s gone AWOL. We eventually track him down back inside the airport, but with no placard with our name on and no big sign saying Fanny ( who can blame him ?), it’s a miracle that we did. The journey takes about an hour and we drive through a tropical downpour of biblical proportions that clears just before Pavia – a good omen hopefully. Dr Robert ( as Josh calls him) from GOSH is on hand at the apartment with another doctor to help us settle in as hardly anyone in Pavia speaks any English, and why should they ? It’s a fantastic flat with everything we could possibly ask for. Clean and cool in every sense of the word. There’s even a dvd player and a balcony. We head straight to the hospital where Josh has already had his first infusion and is sitting up in his wheelchair. His skin looks terrible as GVHD has spread to his face and he looks like The Singing Detective. The nurses wander around in packs here and at one point he has four gathered around his bed to attach his feed. He’s only on a couple of IVs a day now so needs far less looking after. We all play Ludo together on the iPad and stay until it starts to go dark before walking back to the apartment in the rain. It’s about a 20 minute walk from door to door, even though L’Osperdale is only a short distance away as the crow flies, not that they have crows here. They probably measure distances by how far the mosquito flies, as there are plenty of those and they’re already fighting over me. It takes Joseph a while to settle in bed after such an action-packed day, but he sleeps well. So do I, even though I’m bitten to hell despite taking every possible precaution...
Thursday 28th July
The next day is all about finding our feet and settling in. With no food at the apartment and no shops nearby, Joseph and I pop into the bizarre hospital shop that sells everything from paninis and soft drinks to old shoes, broken televisions and Playboy Lingerie. He strikes it lucky as the croissant I buy him for breakfast turns out to have a gooey nutella centre. Josh is asleep so we drop off our bags and head into Pavia. It’s a fair old walk and whilst we find a movie and comic shop along the way, which delights us both, supermerchatos are pretty thin on the ground. We sit outside a cafe overlooking Italy’s third biggest domed cathedral and enjoy a drink before stocking up at the first one we eventually find and heading back to the hospital. Joseph has lunch in the room with Claire while I walk back to the apartment to put our goodies in the fridge. Dr Robert, who consistently goes well beyond the call of duty, drives me and Joseph out to the University swimming pool that is supposedly free and nearer than Campus Aquae, but turns out to be the same place. It looks clean and inviting and is surprisingly empty, but Joseph’s tired and decides to pass. We sit in the bar and have a drink in the hope that he changes his mind, but the boy is not for turning. We wake Josh around 5pm and tell him he’s allowed to come back to the apartment with us for 4 hours. He’s delighted and in his wheelchair and raring to go just a few minutes later. It’s the ideal scenario as it gives me a chance to show Claire where the apartment is and explain how everything works – not least which key opens what door as security there is like Fort Knox. Unfortunately, whilst we were told this morning it was fine to take him off site, red tape and an inflexible computer system means he would have to be discharged and re-admitted every time we did this. Nobody is prepared to sign this off as it would incur huge costs and goes against protocol. It’s a real issue for us because we were told it had all been agreed and Josh is heartbroken. We try to find a compromise and in the end they agree that he can be allowed outside as long as we don’t leave the hospital grounds. Joseph and I take him to the shop where the owner welcomes me like an old friend and treats Josh like a celebrity, lifting his wheelchair up into the shop and offering us free lemon sorbet. Josh opts for an orange juice which he sips while we watch Joseph try to master the art of table football. In the meantime, Claire cadged a lift back to the apartment from Robert in his rather sporty car. Josh joked that they might be running off to get married, but we suspect he’s more inclined to ask for my hand than hers. She returns an hour later with food for the boys but Josh isn’t hungry. He stays up long after they’ve left, beating me at both Pictureka and Yahtzee before finally settling down around 11pm. I turn in soon after but have trouble dozing off. Counting my mosquito bites instead of sheep eventually does the trick...22...23...24...25...26...zzzzzzzzzz.
Friday 29th July
It doesn’t take long to settle into a routine and by the time morning arrives I’m over familiar with the sluice room ( ripostiglio) after emptying Josh’s commode 5 times during the night. I was a bit hesitant about walking into a room marked ‘bagno mamme’ ( mother’s bathroom) as I’m obviously not a mother and am extra careful not to leave the toilet seat up, just in case someone takes offence and I wake up with a horse’s head in bed next to me instead of Josh. Claire and Joseph arrive to find me reading JK Rowling’s ‘Tales of Beedle the Bard ‘ to Josh on the commode. He’s on the commode, I’m in a chair - just in case you need clarification. Josh stays awake for a couple more hours and when he tires, Joseph and I set off for the piscine. We opt for a special cut price tariff that takes us from noon to 2.30 pm for just 9 Euros. It’s a beautiful day and the water is cold enough to be refreshing without making us scream too loudly when it hits our swimming trunks. Joseph’s told off for diving, even though there’s no sign to say you can’t and 10 minutes later we’re both pulled up for not wearing bathing caps which are compulsory. It’s a great idea in theory, but there are several Italian men in the water with more hair on their backs than I have on my head so it’s a little flawed. Once we’ve bought and donned our caps we have a great time swimming and scoffing Magnums before strolling back to the hospital to find Josh just waking up. We spend the rest of the day together in the room, venturing out to the shop again in the early evening but rushing back after 5 minutes as Josh needs the toilet. He’s desperate, but manages to hold on until we reach the room. After that the boys watch Yogi Bear on DVD and Claire and I get 90 minutes to sit out on the balcony together overlooking the hospital grounds. It’s a nice view and probably the longest time we’ve spent together in over a year. Feeling the sun on our faces and a gentle breeze ruffling our hair makes it a feel like paradise. Claire stays the night with Josh and Joseph and I return to the apartment to find Angelo, the maintenance man, has managed to remove our clothes from the washing machine. Claire waited up the previous night for the programme to finish only to find the door wouldn’t open no matter what she tried. Mind you, she had got through half a bottle of wine by then...
Saturday 30th July
I’m guessing it’s Saturday as Joseph and I are the only people walking through the hospital gates this morning. Dr Robert flies back to London today so we’re losing a good friend as well as a translator, a cab driver and an excellent doctor. The nurses are very friendly and extremely professional here as far as we can tell. Joshua was so nervous about having his dressing changed yesterday, but in the end it was one of his least painful experiences. He told Claire last night how he loves the way they gently stroke his face when he’s lying in bed. I’d probably enjoy it too, but I’m not going to push my luck. The food here puts Great Ormond Street to shame. They’ve gone for basics like bread rolls, chicken, pizza, pasta and soup, but do it really well. In the UK we’re so busy pandering to every single culture and religion that everything ends up inedible. The Italian doctor here, Patritzia, is wonderful but a complete workaholic who rarely leaves before dark. She’s in charge of the whole cell manipulation project and flew out to London to meet me and Josh a few months ago. She and Robert have been discussing Joshua at every available opportunity and have been looking into giving him phototherapy treatment for his skin while he’s here. It’s unlikely to happen as it can be back done in England, but they’re also considering giving him a similar infusion of cells to this one, but to battle VZV - the virus that made him blind. This can’t be done anywhere else and would involve flying out for the weekend as a later date as an outpatient. They will test his cells next week to see how good his defence mechanism currently is before deciding if it’s worth pursuing. Our plan for today was for Claire and Joseph to walk round Pavia, but Joseph isn’t keen and opts to stay with me at the hospital while she explores. Josh wakes early and the boys have a couple of hours together before the peace is shattered. Claire’s just texted me to say she’s in the main piazza stuffing her face with gelato and being accosted by beggars when Josh suddenly produces a huge ‘vomito’ from nowhere that splatters all over his legs and covers the floor. A nurse appears and wants to help so I hand her a bowl and ask for ‘caldo aquea’ so I can clean him up. It’s 5 minutes before she comes back with a new bowl but no water, by which time Josh is screaming for bed and I have to sprint down the corridor and get it myself. Once he’s clean and settled I disinfect the floor as they’ve only half heartedly wiped it and it stinks. By the time Claire returns, it’s all calm on the Western Front again and we play with Joseph until Josh wakes up later in the afternoon. After another early evening walk round the grounds, Claire and Joseph leave me and Josh to read a couple more of his books. He goes to bed at 10pm but is really itchy. He’s already had Piriton, which is given regularly here for some strange reason, so he just has to ride it out. It’s a tough night for both of us as I’m itching like mad from around 40 mosquito bites on my arms, face, neck and legs. Most of them look infected, even though I haven’t scratched them and keep covering them in alco-gel. They’re blistering, oozing venom and look likely to explode at any second. Joseph’s fascinated by them. Josh is up about 5-6 times during the night and starts complaining of tummy pains around 5am. We brought buscapan with us, but the nurses won’t give it to him without the approval of a doctor and there’s little chance of that as the night staff tend to avoid making decisions. An hour later Josh suddenly produces another huge vomit which I manage to catch in a bowl this time. Quite why his nausea has started again is anybody’s guess, but we can’t blame in on Italian food as he hasn’t eaten any yet...
Sunday 31st July
Today is the 7th anniversary of Alex’s death. It’s hard to imagine a worse place to be as we feel so far away from him here, yet so close at the same time. Being in a foreign hospital has reopened so many old doors we’ve tried to keep shut over the years and it all feels very raw. Claire and Joseph arrive earlier than usual as Joseph wants to go swimming again. Walking there isn’t easy as the bites on my foot have caused it to stiffen and swell up to such a degree I can hardly move. By the time we arrive it’s loosened up and we have a wonderful day. We knew it would be more crowded on a Sunday, but the pool itself isn’t packed as most of the Italians tend to pose around the water’s edge rather than venture in. Joseph befriends a 9 year old Italian who joins in our impromptu kick around on the mini football pitch behind the pool area. In typical Italian style he tries a few spectacular overhead kicks, although somewhat surprisingly he passes the ball around too. Joseph is impressed. Josh is still asleep when we return at 4pm. He wakes a little later and the boys finish a sticker book together while Claire and I sit on the balcony smiling at their banter and laughter. After a while our thoughts turn to Alex and the three weeks we spent in Faro hospital. The 40 degree temperatures outside and inside the ward, wrapping his body in cold wet bandages in the middle of the night to cool him down, his constant courage, the screams every time a new canula went in, his fit, the false hope that came afterwards, his last words and finally just standing helplessly next to his bed as the machines flatlined as his life slowly slipped away. The memories are hazy these days, but the pain cuts just as sharp and deep as it ever did. A friend texts us to say they’ve left flowers at his garden in the crematorium and we both find ourselves wishing we were back in England, but not just because of Alex. Whilst we see each other every day here, we’re still essentially leading separate lives. With Josh holed up at the hospital, all the nice things that we do out here we still do apart and there’s little joy in that. Our time together on the balcony is precious but it’s invariably interrupted every 5 minutes due to one thing or another. As if to prove a point, Josh notices his dressing needs changing again as it’s starting to come loose. I take Joseph out of the room while Claire and the nurses get on with it. We’re about 100 yards down the corridor but can still hear him screaming and screaming. His skin is red raw under the plaster and they have to put cream and a different dressing on to try and help it heal. We go back to see if we can help calm him down, but he’s in such pain and so distraught there’s little anyone can do. Joseph starts to sob too and I manage to use that to calm Josh down so we can get him back into bed. The moment he’s settled, Joseph and I walk back to the apartment and he soon cheers up. So do I when I discover a Bacardi cubra libre chilling in the fridge. How wonderful is my wife ?
Monday 1st August
The door to the ward is locked and nobody’s answering the buzzer this morning. I text Claire who tells me Josh is having his dressing redone and she’ll let us in once it’s finished. Joseph and I sit outside in the corridor reading an RSPB kids comic to pass the time and learn several interesting facts about mosquitos – not least that it’s only the females that suck your blood. Talking of mozzies, my foot’s a little better this morning which is just as well as I have to walk into Pavia for groceries, take them back to the flat then return to the hospital again so Claire and Joseph can go swimming. It takes about 90 minutes to do the round trip and I must’ve lost about 5lbs in the heat, so it’s not all bad. Josh asks me to start reading one of his new football novels once they’ve left. Apart from a quick nap about 3 chapters in, he’s awake all day and it’s like having the old Joshie back a while. He starts to worry about Claire and Joseph when they still haven’t returned by late afternoon. I tell him they’re either having a great time or completely lost. Fortunately it’s the former and they burst through the door at 6pm. Patritzia has kindly offered to drive Josh and the rest of us around the city one evening this week, but we take a rain cheque today as it’s getting late and we need to weigh up all the pros and cons of getting Josh in and out of a car. She’s taking a real risk and not just with the upholstery on her car seats. She would have to lie to the nurses and if anything happened it would be completely her responsibility as she’s breaking hospital rules. It’s hard to justify doing it, but she remains insistent so we’re going to try and give it a go tomorrow. Josh and I end what’s been a long but enjoyable day watching ‘Scott Pilgrim vs the World.’ Josh has read a couple of the comic books and really likes it – probably because it feel like it’s him vs the world most of the time...
Tuesday 2nd August
Josh has been out here a week now and the novelty of Italy is beginning to wear thin for all of us. It’s another tough night with Josh needing the commode 9 times before sunrise and an extra dose of anti-histamine to stop his itching. The day brings little respite with the news that he has tested positive for norovirus. Quite what this means in the grand scheme of things is impossible to say at this point. Joseph and I disappear off to Campus Aquae for the day and arrive back at the hospital around 4.30pm to find Claire standing outside Josh’s room looking troubled. The air conditioning in our room hasn’t been working since day one, but the evenings have remained relatively cool until the last day or so. Unable to fix it, the plan was to move Josh into the room next door as soon as it became empty and this was in the process of happening when Claire decided to check the air-conditioner in that room and found it was also broken. On top of this, there is now a ridiculously complicated procedure in place for cleaning Josh now he has norovirus. This involves donning two pairs of rubber gloves, putting on a thick gown, mask and hairnet to wipe his bum. We then have to slide the bedpan out of the commode, take off and throw away the gown, hairnet, mask and one pair of gloves then carry the bedpan down the corridor to weigh it, rinse it and spray it with bleach then leave it to soak in a tub of bleach for a further 10 minutes. Only wearing two pairs of gloves actually makes any sense. Everything else is more likely to spread infection rather than prevent it, but it’s difficult to argue as very few of the words we need appear in a standard phrase book. Josh has been asleep all day and only wakes at 7pm when he needs to be weighed. Soon after he appears to have a vivid hallucination and imagines a dark shape flying round and round the room. We manage to convince him it’s not real and check his eyesight. He seems to be fine and sits down to watch Tom and Jerry with Joseph while Claire and I try to get a definitive date on when we’re leaving. Josh had his second infusion of cells today, this time fresh rather than frozen, so in theory we’re flying home on Friday. Unfortunately a text from Robert informs us that the CAT team can’t fly out until Monday at the earliest which means we’re here for another 3 days at the very least. It’s hard to take as it affects all our plans – from when we change over back at GOSH where we have nothing but an empty room, to how much money, clothing, entertainment and patience we have to last the 3 extra days here. It’s Josh we feel most sorry for, obviously. He has been wonderful, but life here is so much tougher for him than at GOSH and it’s unlikely he’ll feel the benefit of the infusion for a couple of months, if at all. In the long term coming out here should help him, but right now he’s hot, sweaty, itchy and nauseous most of the time. No wonder he just wants to sleep...
Wednesday 3rd August
It’s Claire’s turn to go swimming with Joseph swimming today. Whoever spends the night at the hospital gets to take him to the pool as a reward. It feels like being on holiday when you’re lying in the sun or relaxing in the water, but we’re still only half a family and it never feels right. I managed to get another load of washing done last night without needing to call Angelo up to open the washing machine door, but Claire’s right it’s definitely dodgy. I manage to find someone on reception that speaks English today and we should have wi-fi access by the end of the day. It’s a far more complex process than it should be, not helped by the fact someone stole the page explaining it from our in-room brochure ( which is in Italian and little help anyway !). Josh and I have a good day in that he’s awake for more of it than yesterday but his skin really is terrible. Ten minutes after washing his face and applying hydrocortasone cream and Vaseline, it’s so flaky he can hardly see again. It’s the same with his body and limbs moments after we rub the ciclosporin cream in. That poor boy. Nevertheless, his spirits remain high and he’s singing away while listening to his iPad when Claire and Joseph return around 5pm. Joseph joins in and for an hour or so they goof around playing air guitar as they duet. During that time, we’re told we can start moving into the adjacent room where the air-con has allegedly been fixed. It’s certainly making all the right noises and Claire and I swiftly move everything next door. It’s a mirror-image of our previous room and takes a little getting used. Josh will find it particularly difficult to climb in and out of bed on the other side. The room must be slightly smaller than our last as we get Josh stuck when we try to push his wheelchair in and up to the table by the window. Patritzia pops her head round to say that they’ve had some encouraging results following his first infusion that show activity against the JC virus has increased four fold. Further tests will hopefully confirm that the enhanced cells are expanding and making headway towards defeating it. For the second day in a row there are no paper towels in any of the rooms or the bathrooms here. In a place where hand washing can be a matter of life and death, it’s shocking. Even worse, whilst we adhere to our bizarre dressing up ritual every time we need to clean Josh up, the nurses and doctors are only using alco-gel to avoid spreading infection. According to GOSH, only soap and hot water will destroy the virus and prevent it being spread. There are so many inconsistencies like that I’d need a whole new blog just to list them all, so I won’t. Josh orders a takeaway pizza which arrives just 30 minutes later, by which time he’s decided he’d rather have a bag of crisps. The rest of us devour it in a matter of seconds, so at least it didn’t go to waste. Claire and Josh’s flight has been confirmed for Monday afternoon, which means I can try and book our flight tomorrow if the internet’s up and working at the apartment. Josh and I watch TV once they’ve gone in an effort to keep his mind off the terrible itching but it’s no good and he goes to bed after his anti-histamine around 10pm. Neither of us sleep much – mostly because the air-conditioning doesn’t work and pumps out 30 degree air all night turning our room into an equatorial zone. By morning it’s a relief to find David Attenborough hasn’t started filming a wildlife documentary in here and there isn’t a palm tree growing out of the commode...
Thursday 4th August
Our love affair with Italy is officially over and we’re desperate to come home. Last night sealed it for me as the tropical climate in our room appears to have attracted every mosquito in the country and I wake up with another 10 bites. Both arms have swollen up now and there’s a huge, rock hard area under my skin that stretches from elbow to armpit. Four nurses, several engineers and even a couple of doctors try to fix our air conditioning but with no success. Ironically, the one in our old room next door was fixed this morning and we can feel the cold air blasting out of it every time we walk past the door on the way to the sluice room, which is quite often at the moment. Bizarrely, Claire’s air-conditioning at the apartment was too high last night and she needed an extra hour in bed this morning to cuddle Joseph and warm up. It leaves me with precious little time to nip into Pavia for groceries ( and alcohol ) then return to the apartment to try and book our flight. As it turns out, all the time in the world wouldn’t have made any difference as I can’t log-in to their server and nobody can explain why. I give up eventually and rush back to the hospital to take Joseph swimming. Josh wakes soon after we return and has a couple of good hours while Claire tracks down Patritzia and explains our internet issues. She lets me use her office and I manage to grab 2 of only 3 remaining seats on the 4.50pm Easyjet flight back to London Gatwick on Monday. The only snag is that I need to add my passport details before finishing the booking or we can’t fly. Patritzia kindly gives me a lift to the apartment to pick them up and the flights are secured. Josh tires soon after we return to the hospital and Joseph’s in bed almost as soon as we walk back to the apartment. I sit down with a Bacardi Breezer and my laptop. My authentication code and password are now accepted by the Fanny server which suggests they just never registered me even though they claim they did. Finally I can check the football for Josh ( Barcelona 1 Man Utd 2) and update the blog.
Friday 5th August
The day begins with a startling discovery. I’m ironing away at 7am while Joseph’s still asleep and notice a large leaf in the corner of the room. Actually, I spotted it two days ago when I was last here but couldn’t be bothered picking it up. Turns out it’s not a leaf at all but a huge Praying Mantis and it’s still alive. When Joseph wakes up, it’s the first thing I show him. It appears to have an injured leg and is near death, but when I pick it up it gets a new lease of life and tries to attack me. Undeterred, we put it out on the balcony in the hope it will either recover or be eaten by a bird. It’s the Circle of Life and all that Lion Kingy stuff. Claire and Joseph are off to the pool today to meet up with a school friend who happens to be Italian and over here on holiday. He’s talked about little else for the last couple of days and has a great time up there by all accounts. Josh
has an okay day at the hospital, although it starts with another huge‘vomito’. One of the nurses helps hold the bowl while he’s sick, but whereas I scrub my hands afterwards, they just leave the room and go about their business as normal. It’s a miracle the whole ward hasn’t gone down with norovirus. Josh was sick last night too and, despite Claire telling them not to stop his feed, they did. This means he’s on it all day today without a break to make up for that error. Life’s so tough for him at the moment. He’s slept, itched, screamed and vomited his way through the last 11 days or so with precious little to look forward to or get excited about. How he stays sane, I’ll never know. He’s in desperate need of a lot of hugs today and Claire, Joseph and I are all eager to deliver on that score. The novelty of pasta every day has long since worn off and Claire suggests we all have a McDonalds - which is kind of like hearing Linda McCartney ask for a nice rump steak. To be fair, she was prompted by a buy one get one free voucher she picked up at the pool and it’s Crispy McBacon burgers all round with a donut and a McFlurry thrown in. Josh isn’t interested and we help him into bed before stuffing our fat English faces on the balcony. He has a good night though and once he’s had Buscapan for his tummy and Piriton for his itching around 10pm, he only wakes twice at 4am and 7am.
Saturday 6th August
Let’s hear it for the real unsung hero of the last two weeks – the hospital vending machine. Words can’t express the crucial role it’s played in keeping us sane and hydrated. It’s four floors below us, but well worth the effort of a visit. , the heat’s finally getting to me (along with mozzie bites, back problems and sleep deprivation, so it’s a welcome distraction to nip out and buy a pint of milk for Joseph’s coco pops along with a couple of boxes of Italian chocolates for the nurses at GOSH. Back at the apartment I book a car to take us to the airport on Monday and find the internet down again. They apologise at reception, but with our flight home already booked it’s not really an issue. Joseph and I expect the pool to be crowded today as it’s a Saturday, but we literally have it to ourselves when we arrive at 1pm. It’s overcast but still at least 22 degrees in the shade, so you can hardly blame the weather. He practises his diving in the adult pool and manages quite a few that any Italian footballer would be proud of. Josh is just beginning to stir when we get back and we all sit together to play a couple of games of Yahtzee. He still looks pale and frail and his skin is driving him to distraction. We leave him watching the new Justin Beiber movie on DVD with Claire and make our way home around 7.30pm. Joseph goes straight to sleep after a long story, then it’s all systems go. I manage two full loads of washing and hang them out to dry before sleep comes a stalking.
Sunday 7th August
Our last full day on Italian soil brings no surprises. Josh has a couple of huge vomits which panics the nurses, but we’ve seen it all before and there’s nothing anyone can do to help as he’s already on at least two anti-sickness drugs. He sleeps all day and I nod off for an hour or so, lying on the bed beside him. Claire and Joseph return from swimming early as the sky is grey and overcast. We play games while Josh sleeps but Claire’s plan to head back to the apartment early and actually eat out at a restaurant is scuppered by torrential rain. Josh wakes just as the downpour subsides and they leave. He stays awake long enough to watch a movie with me and appears happy enough, but is just as desperate to fly back to the UK as I am.
Monday 8th August
Whilst Josh had a relatively itchy free night, I had no such luck with a dozen more bites appearing on my back and neck this time. It’s a miracle neither Josh or Joseph have been bitten during our stay. Josh’s blood is probably so tainted by drugs he’s off the menu, but you’d have thought Joseph would be sweet and juicy enough to be a target. Maybe blood’s like wine and matures with age – in which case I’m a good old vintage. Claire and Joseph arrive early our planned, but Joseph decides to pass on swimming for reasons known only to himself. He helps us pack the last of our stuff before sitting on the bed with Josh’s iPad as a reward. I receive a worrying text from Easyjet apologising for delays due to air traffic control failure in the UK and prepare for the worst. Josh has another dressing change before he leaves, but it’s a painless one, thankfully. Patrizia comes to say goodbye and has a long discussion with Claire about Josh. I miss most of it as the fan in our room’s so noisy, but basically she explains that it will be a couple of months before we see any real changes in Josh and recommends the dialysis type treatment for his skin. The key to getting him stable is to take him off all his immuno-suppressive drugs and see how his immune system responds, but until his Graft vs Host Disease is sorted that’s not possible. It’s Catch 22 at the moment unfortunately. Joseph and I say our goodbyes and head back to the apartment. To our surprise, reception is shut until 2.30pm which is a blow as we have to pay our bill before we leave. Luckily someone arrives and opens and opens up early, just as our lift to the airport pulls up outside. It’s a shorter drive as we’re flying from a nearer airport. Claire and Joshie take off while we’re there, but we don’t see them. Customs proves to be problem again. Coming from Gatwick, Joseph and I had to drink a chocolate milk I’d forgotten I’d stuffed into my hand luggage. This time they find an aerosol of insect repellent in there I’d forgotten about. They take pity on me and don’t confiscate it, although for all the good it’s done me, they might as well have. The flight’s on time and we’re met in the UK by Claire’s brother and his wife who kindly drive us home. I committed the cardinal sin of buying an English newspaper at Linate airport, so I’d read about the riots before we landed. Not quite the welcome home we’d wanted, but Man Utd winning the first trophy of the football season and clear blue skies mean it’s not all doom and gloom. Claire and Josh had a good trip too - landing at London City airport in Docklands and arriving at GOSH a short time afterwards. Josh managed the whole trip without having to go to the toilet again, but didn’t make it onto the commode in his room in time and announced his arrival back on the ward by christening the floor. With Joseph asleep I set about unpacking our bags and sorting out what needs to be taken up to GOSH.
Tueday 9th August
No itching from my bites, but didn’t sleep much. Too busy thinking about what happens next with Josh, I guess. It’s a sunny morning and Joseph and I cycle to the local shops for milk and bread and a few other essentials, like Milka bars and Yorkies. Luckily none of the shops in Bickley have been looted, although Bromley was trashed last night from what I hear. I can understand why Argos and a couple of electronic stores were targeted, but quite what rioters were hoping to steal from ‘Paul’s Hairdressing’ remains a mystery. The police are probably out looking for a dozen youths with blonde highlights and perms under their hoodies even as we speak. It’s a good day for lawn mowing, washing and ironing after which we play volleyball and badminton in the garden. Once we’ve had lunch we disappear off to the park to kick a football around for a couple of hours. Claire calls early evening to say that Josh’s skin is bad again but that it’s the least of his problems. He appears to have Pancreatitis again and has been screaming in pain. The theory is that it could have flared up due to problems in his gut caused by either his colitis or GVHD. It’s a theory they’ve never mentioned before and makes us wonder again why they removed his gall bladder. It’s hard to imagine how miserable life must be for Josh at the moment and even harder to see how thing can improve, even if we manage to get him home in the next month or so.
Wednesday 10th August
Josh’s new wheelchair is delivered to the house this morning. The delivery man’s kind enough to show me how everything works, but when I ask him how it folds up the answer is it doesn’t. This makes it almost impossible to use as it’s too big to fit in the back of an Audi A4 without me folding both back seats down which means there’d be no room for Josh and Joseph. We have another good day at home and enjoy the sunshine. Joseph’s convinced we’re still in Italy, although my lack of new mozzie bites says otherwise. In the afternoon our next door neighbour asks if we want to go to the park with her children and Joseph says yes. I end up having to keep my eye on four children all cycling round and round a large park at different speeds which is as close to multi-tasking as a man ever gets. Luckily they’re all wearing red which makes things a little easier. After that, Joseph and I head off to Pizza Express in Chislehurst and share a table outside with four large wasps, which I manage to swat before his dough balls arrive. Josh had a much better second day back at GOSH and his skin appears to be improving now we’re applying a new cream one of the dermatologists prescribed. He’s had an ultrasound of his pancreas but they couldn’t see anything at all ( not even his pancreas ) so we didn’t learn much from that. The ophthalmologist saw him in the afternoon and noticed a large haemorrhage in his good eye and a possible cataract in his blind one. He had very high blood pressure while we were in Italy, so that may explain the changes. She’ll check him again on Friday to see if there’s been any improvement. Other than that he’s okay and only needed a handful of pushes of his green button last night, so hopefully the pain from his pancreatitis is under control and the other symptoms will disappear as quickly as they came. Claire and I swap over tomorrow, which is fine, although there’s some debate about whether we take the car into London or not. Claire’s worried about driving back through several of the City’s worst trouble spots including Elephant and Castle, New Cross and Lewisham. I think it will be fine, but it has to be her call. It’s easy enough for us to take the train instead, but no guarantee it will be any safer as ‘steaming’ will probably be coming back in vogue next...
