Monday 25th April
'I can do it like a brother - do it like a dude. Grab my crotch, wear my hat low like you.’ Joseph can’t stop singing Jessie J at the moment but is convinced she’s grabbing her Crocs rather than her crotch, which is fine by me. At least he’s not singing along to Rhianna’s S&M yet. Today sees us venture out to Petts Wood via Jubilee Park on our bikes. I haven’t been cycling for many years, but luckily it’s like riding a bike and you don’t forget. The weather’s glorious and all that’s missing from our Enid Blyton adventure is lashings of ginger beer.The day is a rare glimpse of what our lives could and should have been like. With just two years difference between Josh and Alex, we’d always imagined days out like this as a family, but it was not to be. Josh has never been strong enough to cycle, and Alex...well, you all know that story. Claire and I were overjoyed to have Joseph and he truly was the gift from God that his name suggests, but it’s been nearly a year since we both enjoyed his company at the same time, let alone each others and it’s hard to imagine ever being a family again at the moment. Josh’s day follows much the same pattern as the last two weeks, with him sleeping until mid-afternoon before waking for an hour, only to develop an excruciating headache and go straight back to sleep after medication. Claire is very down and feeling pretty much how I did last week. Alone, isolated, sad, frustrated and angry. It feels like we’re going nowhere and it’s so sad to see Josh suffering so much – with nothing whatsoever to look forward to other than a few sips of cold water and sleep taking his pain away. Something has got to change and we’re looking for the BMT team to come back to us with a new plan.
Tuesday 26th April
Joseph’s back at school and we cycle in. This means I have to wear a back pack with his school bag and PE kit in, and the only one we have is a tiny, camouflaged army one. Perched on Claire’s bike, which is far too small for me, I look like a cut-price, mini action man figure. Luckily nobody spots me until I’ve dismounted at the other end. The next 5 hours are spent up to my elbows in foul-smelling green slime clearing our drain and then jet washing the rest of our paving stones until my legs look like a Jackson Pollack painting. I lose track of time, forget to eat and have to cycle to school as fast as my little mud-splattered, mini-me legs will carry me. Claire brings me up to date while Joseph’s at Taekwondo practicing his chops and roundhouse kicks. It’s not good news. The plan is still to cut Josh’s steroids, but the pancreas specialists at UCLH believe they’ve found something on his MRCP. It’s not official yet, but there are abnormalities in his pancreatic duct that suggest it’s auto-immune pancreatitis – which is what we’ve long suspected. He will more than likely have an ultrasound, endoscope and a biopsy done at UCLH in the near future as a day patient. The most common treatment would be steroids, but given his poor lymphocyte count that’s out of the question. That means the whole situation will need to be monitored carefully. More worryingly, Josh has been sleepy all day and struggled to know what to do when faced with his sticker book. His headaches are showing no sign of abating. He was screaming in pain again today, but Claire suspects it was different this time and he had a mini-seizure. He suddenly stopped crying out and slumped against her, as if he’d lost consciousness, for about 10 seconds while he vomited down Claire’s arm. When he came round he had no recollection of vomiting. Claire had to press the emergency button. The team will talk to neurology and he may have an EEG, MRI and lumbar puncture to check no new viruses are at work. We’re both at our wit’s end at the moment and emotionally very low. We always try to look on the bright side of our situation, but there’s very little light at the end of the tunnel at the moment, and we’re starting to wonder if the tunnel even has an end...
Wednesday 27th April
Josh is sleeping when I arrive at GOSH but wakes when he hears my voice. It’s a wonderful response and not something I was expecting. He’s somewhat less keen to see me when he realises my first task is to put his eye drops in. He tries to stay awake for the eye doctor but she’s late and has to wake him an hour later for the examination. All appears to be fine. Claire’s lined up cover for a couple of hours and I eat sushi in the park and catch up on emails in the sun. Josh doesn’t wake up until a neurologist starts testing his reflexes. She then asks him a series of questions designed to assess his neurological state, but it’s the usual nonsensical rubbish. ‘ Do you know what day it is ?’ always grates as every day is exactly the same in here and neither of us ever have a clue. I'm not even sure what year it is anymore. Far too often neurology never report back after carrying out these tests, so I quiz the registrar on the subject. She can’t promise anything but acknowledges my concern that there’s never been any feedback. It’s a ludicrous situation and typical of a growing ‘tick-box’ culture in the health service. Josh asks to sit in his chair after she’s gone and we play Star Wars. I’d planned to bath him as Claire didn’t get a chance this week, but with an EEG later in the afternoon there’s little point. As it turns out, they don’t turn up. Josh next wakes at 8pm demanding cheese and remains awake and alert for a couple of hours before a headache creeps up on him. Once he’s asleep I go through the nightly ritual of tidying up the aftermath of the mad rush to get him into bed. Taking out empty water bottles and full bed pans, moving tables, chairs, commodes, scales, wheelchairs and beds, recharging electrical appliances and returning his glasses to their case ready for the next day.I catch the last 10 minutes of Real Madrid v Barcelona which is when the only goals are scored and an unexpected bonus.
Thursday 28th April
Just a few words about all the wonderful things that go on here everyday that don’t always get a mention. The dedication of the BMT doctors. The love, care and friendship of the nurses. The dogged reliability and warmth of the physiotherapists. The friendly faces of the social workers in the basement reception. The list is endless and there are many more people and departments to thank for always being there and helping to make our lives a little easier. They never go unnoticed or unappreciated, even if they’re not always written about. The day starts with a rude awakening for Josh as the neurology team want to do an EEG. Not the best timing as he’s fast asleep, but he hardly protests as the dozen or so wires are glued and taped to his hair. The results come back a couple of hours later along with a consultant this time, which is a first. She tells me his brain is more sluggish, but there are no obvious signs of epilepsy or seizures. In between time, Josh agreed to a bath and a hair wash and had a short physiotherapy session before climbing back into a freshly made bed around 12.30pm. After a flying visit to the Sick Children’s Trust house around the corner to pick up a room key, I’m back just in time for a mini ward-round which takes place in the corridor and lasts 10 minutes. The plan remains the same - reduce Josh’s steroids to see if his immune system picks up. The pancreatitis theory isn’t clear enough to begin treatment yet, and as it would compromise his immune system and potentially put his brain at risk, I’m not sure if it will ever be an option. We briefly discuss a psychologist seeing Josh, but he’s coping well and my worry is that they would open up a can of proverbial worms. When he goes to Tadworth and starts to re-integrate with the world it could be just the thing, but now is definitely not the time. A volunteer sits with Josh for an hour so I can eat. He’s still asleep when I return and remains that way until 6.30pm when he asks for pizza. I nip to the house to bung a small one in the oven while he reads match and he manages a tiny slice. Thirty minutes later a raging headache has descended upon him and he begs to go back to bed.
Friday 29th April
It’s Will and Kate’s big wedding day. Romance is in the air and sun is threatening to shine and make a mockery of the forecasters who predicted thunderstorms and heavy showers. I’m just sitting down with a bowl of cornflakes when the door opens and Claire walks in. It feels like a dream, but she drove up early so we could all spend the day together and what a good idea it proves to be. Josh remains asleep for much of it unfortunately. As Claire tunes in to watch the guests arrive at Westminster Abbey, Joseph and I try to feign interest. We’re reasonably convincing, but once Emma Bunton ( shouldn’t that be Bunting ?) starts tweeting her comments we decide we’ve had enough. I’d heard rumours the reception was being held in Tara Palmer-Tomkinson’s nasal cavity but we don’t hang around long enough to find out. Instead we venture out onto the near deserted streets of London. The plan had been to visit the London Transport Museum while it’s empty, but Joseph decides he’s not keen so we head for the British Museum instead to see the mummies. Joseph listens avidly as I recount how Pharaohs had their brains removed via their nostrils, but I find myself thinking of Tara P T again so we visit Forbidden Planet instead to check out the latest superhero toys and cool movie stuff. By midday Josh is waking up and we head back to the hospital. He’s asleep again by the time we arrive, so it’s off to Pizza Express with Claire to stuff our faces and play spot the union jacks. Josh wakes with a headache around 4pm but it soon disappears with oral morph and he sits and watches Batman cartoons with Joseph for the next hour or so. Claire tells me to go out and enjoy the sun but just as I find a nice spot in the park, his Lordship requests a pizza. Luckily Waitrose is still open but just as I’m leaving I get another text asking for grated cheese too. I’m now on first name terms with the girl on the till and we’re dating,although Claire will never know as I’ve put a super-injunction in place. Back on the ward we’re presented with a special GOSH Royal Wedding commemorative mug. All the patients and siblings were meant to get one,but most of them have been stolen – presumably by staff. I think we’re given preferential treatment because we’re lifers. Claire trots back to the house to cook pizza which both boys eat. It’s been a good day and nice to see Josh awake for more than 30 minutes without screaming. He was awake for around 3 hours in total today, which is a new record for the week.Once he’s in bed, Claire and Joseph retire to the house on Grays Inn Road for the night as they’re driving back in the morning. I start reading a book, scared to turn on the TV just in case Pixie Geldof’s hosting coverage of ‘The Royal Conjugal Rights’ live and exclusive on the OK ! channel...
Saturday 30th April
The sun shines all day and I manage to sit outside and enjoy it at lunchtime for 30 minutes or so. The union jacks are still flying but I'm feeling far from Happy and Glorious. Josh is low on Albumin again and has put weight on over the last couple of days, so he needs an infusion followed by more diarretic. He remains asleep all day, and I do mean all day. It’s gone 5.30pm before he wakes to eat a few slices of pizza and read a couple of chapters of his book. He talks about the things he’d like to do next, but a few minutes later he’s asking to go back to bed. He’s asleep again by 6.30pm. It’s so sad to see him this way, especially as we have no real idea why or when things may change for the better.I really miss my buddy at the moment.I sit down to read the paper only to discover that yesterday's maid-of-honour now has countless Facebook pages dedicated to her derriere - the most popular of which is 'The Pippa Middleton Ass Appreciation Society' with over 44,000 followers.I wonder if any of the gastro team have signed up thinking it's a colonoscopy site ?
