Monday 11th – Sunday 17th July
My two days at home are more stressed than rest thanks to insomnia and a couple of work projects that need a little more thought than they should. Monday is hot and sunny and I fall asleep at my laptop in the garden, waking at 3pm and having to cycle like the wind to pick Joseph up on time. He had his last swimming lesson in the afternoon but hopefully we’ll be splashing around in the piscinas of Italy soon...
Tuesday’s ward round confirmed that Josh’s new cells have been successfully grown in Pavia. The first batch has been frozen and the second will presumably join it in the freezer compartment next to the Vienetta in the next few days. Now we just need GOSH to sort out funding, travel, insurance and all the rest of the red tape before their best-before-date expires. The other main topic of conversation was Josh’s skin, which isn’t looking good. A potential new treatment has been touted which would involve all his blood being siphoned off, screened and replaced once a week – a bit like dialysis. This could be done at St Thomas’ in London if Josh is above 40kg in weight, but he tends to fluctuate between 36-38kg which would mean weekly trips up to Rotherham instead. Not quite as glamorous as Milan, darling, but we may have no choice. The only real alternative is that we start taking him to McDonalds more often to fatten him up. Claire’s found Josh far more tired this week than last and another lumbar puncture is planned before we leave for Italy to check on the level of the JC virus in his brain. This will not only give us a good snapshot of where he is neurologically, but act as a point of reference to help us determine if his new cells are doing their job once we return from Pavia. They may do a skin biopsy while he’s under, just in case there is something else going on other than GVHD.
After much thought and discussion, we decided to pass on the free tickets for Harry Potter at the O2 as it just wasn’t feasible for Josh to travel all that way only to find our seats were in the middle of a row he couldn’t access and half a mile from the nearest toilet. As a result of that, Wednesday sees me drop my bags off at GOSH in the morning and do a quick tour of West End cinemas to determine whether we can see it closer to home. I tried to do it online, but you can only book disabled tickets at the box office. My first trip round London tells me very little as all the Odeon cinemas are shut, but they’re very helpful at the Vue and we could see Kung Fu Panda 2 there this week or next as they have disabled access to all screens and will remove seats to make spaces for wheelchairs. Hurrah ! A second tour, while Josh is with his teacher, proves far more fruitful. The Odeon Leicester Square has 4 disabled seats right at the back of the cinema and there’s one left for the first showing on Friday which is when the movie opens. Josh’s disabled cinema card is still valid for a couple of weeks so I’m free and he’s half price, which is just as well as a normal adult ticket is an eye watering £24.95. For that amount of money I’d expect Hermione to hand feed me popcorn and Ron to kneel on the floor and act as a human foot rest. Josh was happy to hear the news, but knows better than to get too excited about anything these days as he has no idea how he’s going to feel in 2 minutes time, let alone 2 days. He has a good day overall though and was up and active from midday until 9pm without any sign of a headache or vomiting.
Thursday begins with more news from Italy and it’s all good. There’s a provisional date of 26th July for our trip. The Italian doctors wanted to check that the manipulated cells weren’t just growing, but would actively target the JC virus and destroy it. They’ve now seen evidence of that and it’s all systems go. It’s unclear how long we’ll be out in Pavia as they ideally want to infuse Josh twice rather than once, but they’re thinking between 7-11 days. They’re also looking into local accommodation for us, so hopefully all we’ll have to organise is our flight. The rest of the day follows the week’s pattern. Wake at midday, school, play specialist, physio -punctuated by several visits to the commode and followed by a few hours playtime with me. Oh, and a McDonald’s Happy Meal thrown in around 5pm again, which is becoming par for the course too – and not just to avoid Rotherham. I have to nip out to pick up a new brief which I do overnight so I’m clear to think about a couple of other projects needed by Monday am. Tiredness is finally starting to take it’s toll on me and my eyes look more sunken than Davy Jones’ locker.
Friday is all about Harry Potter and our trip to Leicester square. Josh was up at 10 am and raring to go but I managed to persuade him to go back to bed after a level of Marvel Superheroes on PS3. Internet problems mean I have to nip out to the cafe on the corner twice to send work across to Italy. Ward round is mostly guess work about his skin and whether it could be chronic GVHD we’re seeing rather than anything new. It looks horrific but seems to be bothering him less at the moment. The main consultant’s use of the words ‘ Italian Job’ to describe our upcoming trip lead me to suspect he was the one up at night ploughing through the blog last week. In many ways I hope it was. I leave it as late as possible before waking Josh from his power nap as there’s so much to remember and everything has to be carried out with military precision. 3D glasses – check. Normal glasses – check. Hearing aids = check. New batteries – check. Cold drinking water – check. Orange juice – check. Drinking straws – check. Drugs for tummy cramps, headache and itching –check. Syringes– check. Bottle of sterilised water for flush – check. Bed pan, urine bottle, sick bowl – check. Sterile wipes – check. Tissues – check. Latex gloves (don’t ask) – check. Plastic carrier bags ( you don’t want to know about that one either) – check. Emergency kit and clamp for Hickman line – check. Several changes of pants and trousers for Josh– check. Spare clothes for me in case Josh vomits in my direction or I get scared during the movie – check. Blanket in case the air-con makes it too cold – check. Extra cushion in case seat back in front is too high to see screen – check. Pillow to support head – check. Oh and don’t forget the tickets, Dad – check. It takes us less than 20 minutes to wind our way to the cinema. There’s an unpleasant incident outside Holborn tube where someone on their lunch hour walks straight across our path and then stops and I can’t do anything to avoid the wheelchair clipping his ankles. The guy launches into a four-letter tirade and gets even more irate when I point out that he cut us up. People are staring and it can’t look good picking an argument with a disabled child – it’s like a scene from ‘The In-betweeners’. In the end I calmly tell him what a sad. angry tosser he is and we continue on our way. It’s a real event at the cinema with people arriving in Gryffindor blazers and witches hats – luckily nobody on the row in front of us is wearing the latter. Our seats are right at the back, but the view’s fine and Josh told me he could hear every word without hearing aids, which may or may not be true. The movie’s great and the audience appreciative, clapping, whooping, hollering and cheering loudly in all the right places. Josh doesn’t really miss anything not seeing it in 3D and I try not to jump out of my seat when snakes leap out of the screen at me, just in case he gets jealous. The disabled toilets are just 3 feet away but he doesn’t need them. At the end he tells me it’s the best movie he’s ever seen and I have to choke back the tears. Job done, we make our way back to the hospital via Ronald McDonald’s house and stay for tea. After a short nap, Josh is ready for action again and after several hours of fun and games he ends the day listening to his iPad and belting out Sex on Fire and Bonkers into a fake plastic microphone. The nurses put him on loudspeak without him knowing and before long the whole ward’s singing along. Bonkers ? Absolutely !
The Weekend’s tame by comparison. The weather’s miserable and we’re both pretty low key after Friday’s euphoria. Josh gets up briefly around 1pm on Saturday but is back in bed with tummy ache less than an hour later. He has his monthly penatamadine nebuliser in the afternoon. They wanted to do it yesterday morning, but it would have wiped him out for the cinema so I said no. It takes forever as it hasn’t been set up properly and after half an hour I have to call the nurse in because I don’t think it’s working at all. Josh is very patient and sings along to 4 music while we dismantle the equipment and rebuild it. I’ve started looking into flights and prices for Italy along with the best way to make our way to Pavia, which is anything from 50-107 km away from Milan airport depending on which one we land at. I’ve also downloaded a free English – Italian translator onto my Blackberry.
‘Mi scuso in anticipo per il canto dim ion figlio’ ( I apologise in advance for my son’s singing ) and ‘ No, non sono wrting un blog su questo ospedale’ (No, I am not writing a blog about this hospital ) are the first two phrases I’ve keyed in and it appears to work just fine. Sunday sees Claire drive up to the hospital with her parents and Joseph, of course. Josh is being looked after by his favourite nurse today who’s back after a nasty fall down stairs that left her unconscious and not even breathing for a short time. He’s back on form and once he’s shown Joseph the Horrid Henry movie trailer and they’ve done some serious web-slinging in Marvel Superhero Squad together, we all sit down and play board games in the small playroom just off the ward. Josh begins to tire around 4pm but must’ve got a second wind as he ends up watching ‘Gnomeo and Juliet’ on DVD with Claire after we’ve gone. Back home it’s an early night for Joseph as I have a presentation up in Cheshire tomorrow and there are still a few bits and pieces to think about...
