So suddenly it’s almost June. How did that happen ? The last month or so has seen temperatures rise and fall faster than Ronan Keating’s pants, Man United surrender the Premier League to Chelsea and David Cameron and Nick Clegg seemingly joined at the hip doing their best Tweedle-dum and Tweedle-dumber impression. And don’t even get me started on the volcanic ash that was the worst thing to come out of Iceland since the Kerry Catona’s TV ads.
By comparison, life in Bickley has been relatively dull. As far as the doctors could tell from the rather murky colonoscopy they performed on Josh in April, there are no visible signs of inflammation or ulceration in his stomach or gut. This was great news and the biopsy confirmed that he has indeed made a pretty miraculous recover in that area. In other areas, however, he’s continued to struggle. The rectal pain he experienced just before going into hospital came back a few weeks later, leaving him screaming and shaking and secreting small amounts of fluid and spots of blood up to 20 times a day. At the moment he’s okay but it could flare up again at any time. The doctors are still adamant it’s some kind of anal fissure or tag that’s sending his bowel muscles into spasm, but nobody’s quite sure why he keeps getting them. Whatever it is, it’s as bad as anything Josh has ever experienced and has made him question ‘ Why me ?’ for the first time ever. I wish I had an answer for him. On top of that, his ankles and the tops of his feet went through a long spell of swelling to the size of a small elephant’s. This was initially seen as being due to the large dose of steroids he’s on, but there’s been another theory since that sounds more plausible which is fluid retention. His overall mobility hasn’t been good either, with his knee joints still creaking when he walks upstairs and his muscle wastage becoming much more severe on his legs in particular. Again, this is probably down to the steroids which have also left him with large stretch marks on his thighs. He’s tired most of the time, and on his worst days goes back to bed for a lie-down almost as soon as he’s had breakfast. As you can imagine, with all this going on, the plaster casts planned for his feet to help with his talipes have been postponed indefinitely.
Josh’s blood results continue to surprise too. His white cells and neutrophils drop when least expected and then creep up for no apparent reason. He’s currently bordering on being neutropenic again so it’s almost impossible to plan anything. I’ve had to pull out of a couple of jobs recently and many of the schooling plans we’ve made have started to unravel as he won’t be able to return until September at the earliest. Schooling is a particularly tricky subject. What kind of school will prepare him best for secondary given that he’s nearly two years behind ? Which secondary will suit his disabilities best ? What kind of funding can we expect and what level of statement will we get ? All these and many, many more questions are all factors that need to be taken into consideration. Then there’s the constant home schooling which takes its toll on all of us, but is an absolute necessity given that we’re only entitled to 5 hours of tutoring through the local council.
There have been bright spots, of course. Josh and I have managed to keep our matinees going at Bluewater Showcase cinemas. How to train a Dragon, Nanny McPhee and the Big Bang, Iron Man 2, Furry Vengeance and Robin Hood have all been ticked off our list. I can’t remember when I last saw a movie that was anything more than ‘mildly disturbing for under 4’s’. It’s odd sitting in the cinema on our own, but probably just as well given the giggle-fit Josh had during Furry Vengeance. It appears there’s nothing like a gang of skunks spraying anything and anyone in sight to tickle a 10 year old’s funny bone. Animals have featured large in Joseph’s life too recently with a visit to ‘Reptile Razamatazz’ at a local garden centre. We learnt that Tarantulas shoot hairs out of their bum that can blind you if they’re scared and that snakes are agoraphobic, which probably explains why the 10 foot python that slithered across all the children’s outstretched legs at the show’s finale ended up disappearing into someone’s Nike sports bag and curling up for a kip. Joseph loved every minute of it. Claire was safely at home, some 15 miles away.
I can’t pretend life is easy for any of us at the moment. It’s been over two years since I left advertising and in many ways day-to-day life is far harder now than it ever was in hospital. The main thing is having no real goals in sight. Life remains on hold. Josh’s drugs have been reduced but he’s still on far too many and the side effects don’t bear thinking about. Great Ormond Street has been on our TV screens on a weekly basis lately as the subject matter for various documentaries. There was a programme called ‘Embarassing Bodies’ on earlier in the year which featured a young girl going through a bone marrow transplant for a verruca. Yep, I know it sounds weird but she was on Robin ward with Josh at one point and because of a problem with her immune system, the verruca just grew and grew until it looked like a large lump of coral - think Davy Jones in ‘Pirates of the Caribbean and you’ll have some idea of how horrific it looked. It was great to hear how well she’d done since being discharged, but it was also pretty tough to see her life going back to normal,when Josh can’t even remember what normal life is any more.
We’ve been back at GOSH several times since I last wrote and finally got the results of Josh’s bone-marrow aspirate a couple of weeks ago, The topline is that the consultants now think Josh’s ongoing problems are down to immune-disregulation. This was explained by one of the doctors as his new immune system behaving like a wild horse that needs calming down. It’s currently getting over excited by any sign of his old problems and over reacting in the extreme - a bit like a teenage girl at a JLS concert, I guess. It’s not often they see a reaction like this, but they remain confident his bloods will settle down over time. It could be as late as October before it happens though, so we’re not holding our breath. His swollen ankles have gone down since they gave him a new drug to make him wee more and swapped one of his regular blood pressure drugs. On the last visit, one of the physios came to see us as they want to repeat the tests they did back in January. She was shocked when she saw the state of his ankles and organised surgical stockings for him, to try and spread the swelling out - shades of Nora Batty ! The funniest moment was when the physio learnt that Josh could eat eggs now and asked him how he liked them best - expecting the answer to be scrambled, boiled, poached or fried. Josh’s curt reply was ‘ in cakes’. After that we went off for a lung function test in the cardiac wing. Josh has had one before but not with me. The waiting room was packed with photos of Theo Walcott doing breathing tests. It’s no doubt very reassuring for most children to see this, but I think Josh was a little worried Theo might not make the England squad for South Africa if he’s having trouble with his lungs – especially with some of the stadiums being at high altitude. The tests all involve breathing in and out, but take the form of computer games that respond to how well you do. As we started the last test. I was starting to take a few deep breaths myself as I’d parked on a double yellow line outside the hospital and the limit with a blue badge is 3 hours. We made it back just in time only to discover we had a parking ticket. A concerned passerby escorted us around the corner to the traffic warden’s den where we were told the ticket was issued because we’d failed to display the badge properly. Hardly worth a £120 fine and even the warden told me to appeal. Chances are the plastic flap on the wallet flopped forward due to the heat on the dashboard – but it’s highly unlikely Camden council will see it that way. We shall wait and see. The trip back home seemed to take forever due to road works and we were both pretty fed up by the time we got home. After updating Claire, I was straight down to Virgin Active to get it all out of my system. Yes, I’ve finally joined the gym that’s only a 5 minute walk away after 10 years. It would be fair to say my body isn’t quite in the same shape as many of the regulars down there yet - I’m at least 7 tattoos and a beer gut short of blending in with the day shift. I tend to use the weights more than the running machines but I still haven’t got my head around the idea of the hair and body wash all-in-one that’s in the showers. Surely it can’t do both jobs properly unless you’re Robin Williams and actually have a body covered in fur ?
So, I guess that brings us pretty much up to date. Josh has just had soya introduced into his diet which means he can eat something that says it’s cheese on the pack, but clearly isn’t. He’s praying for the day that wheat and dairy are added. His Easter eggs remain uneaten and the sell-by-date is fast approaching. Claire continues to be wonderful and a real tower of strength, only running away from us at night to do strange and exotic classes at Virgin Active like Zumba and Body Attack. Yesterday, the 24th of May, was Joseph's 5th birthday. He had a fantastic day even though he had to toddle off to school before he’d had a chance to play with any of his presents. After school, he spent the afternoon in the garden, frolicking in the paddling pool with one of his girlfriends. It was an absolute joy to hear them laughing and playing and we even managed to get Josh out for a while to soak them with a couple of water pistols. Joseph’s official party is next weekend. Unable to persuade him not to invite his entire class, we’ve had to hire the local church hall where he has his weekly Taekwondo classes. Hopefully he won’t suddenly forget why he’s there he and break the entertainer’s neck with a flying kick. Mr Bonkers just might not be able to see the funny side of that.
