Monday 18th – Monday 25th July
Joseph had tummy pains on Sunday so I needed a contingency plan in place for Monday, just in case he wasn’t well enough for school. I didn’t need it in the end as he seemed to recover. A mad rush to Euston station followed by a 2 hour train journey up to Crewe for a creative presentation filled most of the day, so it was gone 7pm before I picked Joseph up from Claire’s sister’s house and put him to bed. Claire and Josh braved the weather in London today, dodging the showers long enough to reach Oxford Street and use his Game vouchers to stock up on DS games for Italy. He shared a brolly with Claire on the way there but, being the gentleman he is, kept insisting she took it so her hair didn’t get wet on the way back. Bless !
Tuesday was a much sunnier affair and I even managed a spot of sunbathing while having a two hour conference call with clients that sell Egyptian cotton towels from Turkey up in Warrington. It’s a strange life, but never dull. Joseph is still suffering with his tummy, which is a little worrying. His martial arts instructor tells me he traipsed off to the toilet 3 times during his lesson. My guess is it’s either Taekwindo or Kung Poo. Joshie had a reasonable day, even though he conked out during school. The new Disney movie‘Cars 2’ was premiered on the in-house dvd channel in the afternoon and he managed to wake up for that. Joseph will be jealous as the characters appear on the Frubes he takes to school everyday as a snack. He’s eaten so many Lightning McQueen’s I can probably pick him up with a magnet.
Wednesday saw Joseph’s tummy playing up yet again. This time it was more serious and I had to keep him off school. It’s the last thing I needed, but he was well behaved and I managed to get all my work done. Meanwhile, Josh had his lumbar puncture and skin biopsy at 9.30am. He recovered from the anaesthetic in record time and was sitting up in his chair playing Playstation 20 minutes later. In the afternoon, he managed to walk up and down a couple of stairs during his physio session which is something he hasn’t even attempted in a long time. One of the gastro dieticians has a theory concerning the recent developments in Josh’s skin. With his TPN stopped and no real diet to speak of, she believes his lack of fatty acids could be responsible for the changes. It sounds highly unlikely and the BMT team are equally sceptical, but she wants us to give him walnut oil through his peg as soon as she can track some down. At home, Joseph finds a couple of old photos dating back to when we all went to Disneyland Paris. I discover him with tears roll silently down his cheeks. He hugs me as he sobs and explains how much he misses us all being together. I dig out the relevant photo album from upstairs and we look at more pictures together through wet, salty eyes. It’s like gazing through a window into a parallel universe at the life we should have had. His mood slowly changes and we end up laughing out loud as I recount stories of the boy’s antics out there. Going to Disneyland again was Josh’s wish through The Starlight Foundation, so hopefully we’ll go back there soon as a family...
I’m back at the hospital on Thursday and find Josh sitting at the nurses station in his wheelchair waiting for me. It’s a wonderful welcome and nearly has me in tears again. I’m up here until Monday afternoon as Joseph has a Taekwondo grading on Sunday. Claire’s in the room sorting out disability allowance, which won’t restart until after we’re discharged from GOSH but new forms need to be filled out as he’s now partially sighted, half-deaf and far less mobile than before. It’s the last day of term for hospital school and he says goodbye to his teacher for the next couple of months – hopefully for good, although I mean that in the nicest possible way. After that we’re downstairs for a heart echo which takes far longer than it should because our nurse sent us to the wrong place, even though I questioned what she said 5 times because I was sure she’d made a mistake. Back on the ward we’re told our accommodation has been confirmed for Italy and that we’re staying in an apartment block just 500m from the hospital called ‘La residenza Fanny’. I’m not sure what my Italian to English translator will make of that. We have a two-bed apartment with kitchenette, oven, shower, fridge and digital TV. It looks great and can be viewed at www.fondazionebfft.it. Everything should be signed off tomorrow, but the plan is for Josh to fly out on Tuesday with Claire, the doctor and a specialist CAT team from London City Airport on a private plane. An ambulance will take them directly to the hospital. Joseph and I will fly out the same day, if I can still get a flight, landing at Milan Linate which is the nearest airport. The hospital operate a shuttle bus service which can pick us up for 50 euros and take us straight to Fanny. Now that’s what I call service ! The apartment also boasts a washing machine which is great news as Josh is getting through so many pants and shorts at the moment that Claire thought we’d have to nip to Milan and stock up on Armani boxers just to keep up. Now we just need a small bag of washing powder that hopefully won’t get mistaken for cocaine and confuse the sniffer dogs going through customs. Josh appears to settle down around 7pm, but wakes twice to say he doesn’t feel tired and we end up watching TV together until gone 11pm.
On Friday I start packing up books and clothes and sorting out all the rubbish we’ve accumulated over the last 12 months or so. Most of it we’ll take home on Monday. Nobody had thought about us having to clear out the room before we left until Claire brought it up last week. It’s a good job she’s on the ball, as it needs to be emptied and deep cleaned for other patients and I’m sure it wouldn’t have dawned on them until the last minute. It’s a welcome chance for a big clear out, but means it’s pot luck whether we get back on Fox ward. We’ve been told that we will, but I’m not so sure. It’s impossible to say how long any new patient might need the room for– after all,Josh was only meant to be here for a few days and that was over a year ago ! Ward round is a confusing affair with the doctor asking what our plans are after we return from Italy, as if all our problems will be over. She feels that Josh’s immune system may have fixed itself as his lymphocytes are so high and that he won’t need any further treatment. It’s naive in the extreme and completely medically unfounded. There’s a possibility we could be home or at Tadworth within a month or so while we await the next phase of his treatment, but his lymphocytes have almost certainly only shot up because he’s battling GVHD. She tells me the lumbar puncture revealed the JC virus is still in his brain, but that it’s impossible to measure. She’s insistent about this, but wrong. It’s been done many times before and an hour later another doctor pops in to give me the results. The level has dipped a little which is good, but more importantly we now have a marker so we can compare pre and post treatment results. Our trip to Italy is finally confirmed just before lunch, which is great news. I try to book the Tuesday flight we wanted from Gatwick but it’s gone. Rather than rely on a dodgy signal and our iPad to find another, it’s off to Tuttis to use their wi-fi over a hot chocolate. I book the next flight available that day which lands at a different airport in Milan but is only a little further away. Just as I finish typing in my credit card details and press ‘go to basket’ I’m told there are problems with their webpage and I have to phone them at a cost of 10p a minute to complete the transaction. Rather than give my details to the whole cafe, I head for a lonely bench in a nearby park where I’m told the site locked me out because the prices had changed. Apparently they went up by £65 while I was online booking them. Feeling duped, I switch to a flight on Wednesday which was only a little cheaper at the time, but is now £120 less. It means we lose a day out there, but Josh will probably be asleep for most of it and the money we save should more than cover all our piscina visits and a few pizzas to boot. Josh is officially looking forward to going now and I tell him everything’s confirmed when he eventually wakes just after 3pm. He’s disappointed we’re not flying on the same day he is, but understands. He has another good session in physio, despite a pain in his ribs which could be a result of his lumbar puncture. After that we set off on a trip to McDonald’s, coming back via the O2 shop who confirm everything I suspected about taking your mobile abroad. The 900 minutes that come with the contract won’t count for anything in Italy, so we’ll be charged for every call and text out there on top of our normal bill. Even if you don’t answer your phone you get charged for voicemail, so we’ll have to turn that off. And leave your email and data roaming on at your peril as it’s a whopping £3 per megabyte if you forget. The rest of the evening is great fun but relatively uneventful, other than Josh’s walnut oil finally arriving but with no instructions regarding dosage. I actually thought the nurse was handing me a urine sample as it’s the same colour and in a similar container. She told me to give it whenever I want, so I do it straight away. I later find out the bottle contained 3 doses which should have lasted 3 days. It’s not a problem as it’s not a drug and it won’t do him any harm, but it’s sloppy work by all concerned - including me. We all deserve a great big slap round the chops from Rupert Murdoch’s wife...
Saturday involves more packing while Josh sleeps in until 3pm again. He wakes long enough for me to wash, cream and change him but goes straight back to bed. He’s up again at 6pm to play Sonic All-stars racing and beats me 7-6. He then goes on to trounce his favourite nurse twice – although she’s somewhat hampered by the fact she normally plays on Wii and keeps waving the Playstation controller around ineffectively thinking it’s a nunchuk. After 90 minutes he’s asleep again, waking for a third time at 10pm for a long chat, a big cuddle and to join a fantasy league on his iPad. His last waking thought before he finally settles down is whether they have cold water in Italy. This is on a par with Susan in ‘The Apprentice’ asking whether the French like their children. I tell him not to worry. If the worst comes to the worst we can buy bottled water and stick it in our little Fanny fridge to chill it.
Josh was shocked to hear of Amy Winehouse’s death on Sunday. I just said ‘ No, no, no...’ Bad jokes aside, whether she’s gone to heaven or rehab, it’s difficult to get too upset over something so self-inflicted when there’s so much tragedy in the world that people have no control over – the horrific events unfolding in Norway being a case in point. Josh is up at 11am but back in bed shortly after, giving me a chance to escape for long enough to get Euros from Thomas Cook and buy a sandwich. Josh is up again shortly after I return and has a good afternoon. His feet are beginning to look a little puffy and his skin isn’t great, but he’s bright and articulate and sharp as a tack when he’s awake and great company. Joseph’s Taekwondo grading went well today and we’ll hear on Tuesday whether he’s earned a new belt to hold his baggy white trousers up. Claire’s sorted out insurance for the family with M&S ( all except Josh, who’s uninsurable...) so we’re covered for up to 45 days abroad, just in case everything goes pear-shaped and we’re out there longer than we planned. Josh and I end the evening watching a kid's horror movie called 'The Hole' which spooks me far more than it does him.
And so to Monday. Josh is up at 8.30am, even though I do my best to talk him back to bed. By the time I’ve washed and creamed him and got him comfortable in his wheelchair, he’s changed his mind and wants to go back to sleep. It’s like ‘Little Britain’. While Josh naps, the CAT team that are flying out with him pop in to quiz me on his needs. The biggest issue is toileting – not least because there isn’t one on the plane. Nappies on hand to act as pads and a plastic bedpan appear to be the best options and we decide on a combination of the two. The other issue is baggage as the plane is tiny and we’re told to bring minimal luggage. I warn them that Claire will travel light going out, but may come back with half a dozen pairs of Gucci shoes and there won’t be enough room for Josh. He’s awake again by the time Claire and Joseph arrive with Josh’s cousin and they sit and play various board games while I ferry bags back and forth to the car for the next couple of hours. Once all that’s done, we take Josh off his feed and all descend on Pizza Express for lunch. Josh doesn’t eat much but savours every single mouthful. We rush back for a gym session and leave around 4.30pm – narrowly beating rush hour. There’s plenty to do at home before we leave, even though Claire’s broken the back of it. A friend kindly offers to drive us to the airport on Wednesday and, whilst I try to say no as I hate to inconvenience anyone, it’s a great idea and will make life infinitely easier. And so on that happy note, and with more pants to wash tomorrow than there are fish in the sea, it’s time to sign off. It’s highly unlikely I’ll be posting any news on this site for a couple of weeks, but if the internet’s up and running in residenza Fanny I’ll try and email everyone with our news after a week or so.
Until then, wish us luck and ‘Ciao,’ as they say in Italy for both ‘goodbye’and ‘hello’ - which is kind of weird and going to take some getting used to...
