Sunday 11th - Saturday 17th September
There’s a Beaver parade during Mass at our local parish on Sunday ( don’t snigger), but Joseph ducks out at the last minute and declares he’s rather spend more time with Josh at GOSH. It’s hard to say no under the circumstances. As it happens Josh is awake when we arrive and Claire and I leave the boys to watch the weekend’s football together. Neither of us are sleeping at the moment and it’s beginning to take its toll. Claire’s had a few tearful nights here and it’s hard to be positive at the moment, no matter how hard we try. Things will hopefully improve for Josh, but he’s unlikely to ever get what people constantly refer to as ‘better’. We’ll hopefully find that easier to accept once he’s home and we can all start rebuilding our lives. Shortly after Claire and Joseph head off home, Josh has another episode and complains of a headache. He was due to have his nebulizer in the afternoon, but I cancel it as he’s looking confused and vacant and I’m worried it could tip him over the edge. He doesn’t wake again until after 11pm when he declares himself happy and rested, but still only manages to read for 5 minutes before falling sleep again.
Monday sees me wake Josh at 10.30am for his EEG. This basically involves having 17 wires glued to what little remaining hair he has in order to pick up on any unnatural brain activity. It’s unlikely they’ll find anything, but it’s important to keep looking just in case. Surprisingly, he remains awake for the rest of the day. After taking a stroll down the corridor to wash all the glue out his hair, he thrashes me at FIFA Street 3 on PS3. I bought it pre-owned in Bromley after exchanging a few old DVDs at CEX. I ended up getting £5 each for three DVD’s that cost me £4 in Blockbuster – so basically I’m getting paid to watch movies. Not enough to make a living unfortunately. Josh’s teacher arrives at 1.30pm so I have 45 minutes to get out of the building, sit down and eat somewhere and then return via McDonalds for Josh. He munches his way through 4 chicken nuggets then heads to the gym where he catches sight of his reflection in a mirror and is a little shocked at how much hair he’s lost. It’s another good session with no headaches and he manages to climb up two flights of stairs at the end. After that we’re off to Safari ward for his nebulizer. Once again the nurses fail to execute it properly and it doesn’t work. I reassemble the equipment and manage to fix the problem (one of the tubes was upside down) but we have to go back to Fox Ward while Pharmacy get more of the pentamadine to administer through it. It’s an hour before we’re back on Safari but Josh takes it all in his stride and uses the tube as a microphone to sing into while the vapour is released. He likes the fact it looks like dry ice and pretends he’s on stage doing a live gig. He’s still happy and wide awake at 10pm, by which time I’m beginning to wonder if he’ll ever tire or whether there’s something wrong. As the night wears on it becomes clear he’s so wired he can’t sleep. By midnight he’s hallucinating and hearing music and voices in his head. He thinks he can hear the patient next door ripping out cannulas from their wrist and is happy he won’t need one for his MRI in the morning. At 1am I hear him getting out of bed and walking round the room attached to his feed. Apparently a lady spoke to him through the crack in our door and told him that if he stood on the pedal of our bin, a present would appear in the corner of the room for me. He ‘s reluctant to tell me what it is, as it’s a surprise for the morning, but eventually relents and says it’s a Wii controller so we can all play together when he’s home. He realises it’s not there when we walk over to the corner to pick it up, but his hallucinations continue into the early hours. He sees white ants crawling over his bed sheets next and, more worryingly, presses his emergency buzzer to call the nurses in because he thought he heard me crying out for help from my bed. If I hadn’t seen all this before, it would be terrifying. As it is, it’s still disturbing but at least he’s not distressed. It’s 4am by this time and I ask the doctor to prescribe some midazolam to calm him down. He’s asleep within minutes of me administering it. I wonder if I can bribe anyone into prescribing some for me...
Josh has an MRI scheduled for Tuesday morning which means I have to be up around 7am. Not a problem normally, but given that I didn’t get to sleep until 6am it’s a struggle. We take him down at 8.30am in his wheelchair. He somehow manages to sleep through the terrible noise as he’s scanned for over an hour. I sit by the side of the machine reading with my ear plugs in. The nurse looking after us today is one of Josh’s favourites, but I’m not sure why. She’s blonde, which probably helps, and thinks she looks like Kirsten Dunst although my spider senses disagree. Ward round fails to throw up anything new. When I question the main consultant again about Josh’s skin, he examines it closely and announces that it looks like classic GvHD. He then turns to a visiting doctor over from Utrecht in the Netherlands for confirmation, but he completely disagrees. It was a wonderful comedy moment that just goes to show that nothing’s simple when it comes to our Joshie. There’s no word on the biopsy yet and no date set for the scope of his gut. His EEG looked fine. If anything, it showed a slight improvement on his last one - with no sign of any slow waves. We’re unlikely to have his MRI results before the end of the week. Josh sleeps from 10am until 6pm. I manage a quick nap in between visits from play specialists and neurologists. Josh remembers most of what happened last night, but doesn’t seem too bothered by it. We read and play, then settle down to watch the second half of Chelsea’s Champions League match. At one point I bring him some water and he thanks me for being his hospital slave. It’s very funny, but I think I’d rather be one of the gypsy slaves uncovered by the police this week. I’m not keen on having my head shaved, but I wouldn’t mind being on £30 a day...
The rest of the week is relatively uneventful and it flies by. Wednesday is warm and sunny and a good night’s sleep makes me feel much more positive. Josh was only up 3-4 times in the night and had no mad visions as far as I’m aware. We’ve been approached by magazine to do a feature on Josh’s story. We’d normally say no, but it’s through the Sick Children’s Trust and we’re happy to raise their profile when we can. The journalist calls for a chat, but they want to fly the family somewhere for a mini-break in October so I’ve got a feeling that will rule us out of the equation.
Thursday is changeover day. Josh wakes soon after Claire arrives and seems fine. I’m home by 2pm and start cutting back the garden ready for winter. Where did the summer go ? Joseph has tennis after school, then I nip to a garden centre while he’s having Taekwondo. I only went in to buy a set of terracotta feet for one of our pots, but come out with a box of live locusts. I know it’s a little weird, but Joseph’s overjoyed and we feed them a slice of banana which they consume pretty quickly. They are 15 of them in the box. They’re yellow and black and quite large and would have been fed to a snake of a lizard if I hadn’t rescued them. I’m tempted to set them free in a couple of days but what if they breed and we end up having a plague of them followed by a famine ? It could be the end of civilisation as we know it. Cool !
Friday’s ward round revolves around Josh’s skin, brain and gut. The results of his skin biopsy finally come back from St Thomas’ and they suggest it’s not GvHD. BMT remain convinced it is, which gives us a bit of dilemma as to how we proceed with treatment. Neurology are no closer to explaining Josh’s funny turns or hallucinations. They spotted some brain shrinkage on his MRI scan but don’t know what that means or why it’s happened. Hopefully it’s nothing to worry about and it’s still far bigger than the average Big Brother contestant’s. Gastro are hoping to take a look at Josh’s stomach and bowel next week and if the scope reveals no inflammation, he could come home the week after that. We’re not holding our breath, but remain cautiously optimistic.
Saturday morning sees Joseph playing football, although he’s easily distracted this week and spends more time chatting with his team mates than kicking the ball. I catch up with Claire at lunchtime. Josh has an infection at the moment, but she only found out because the doctor on duty sent him back to his room. There’s another child on the ward with it and it can be a very tricky one if it goes to the lungs and causes pneumonia. Josh’s electrolytes are down too and he needs potassium. We only know this because Claire brought it to the attention of the doctors, who appear to have missed it in his notes. It’s pretty sloppy. The afternoon is spent in the park with friends who offer to take Joseph out to dinner. There was an invite for me too, but Saturday night is my last at home and I generally spend it ironing, tidying up and making sure the house doesn’t look like it’s been hit by a rogue hurricane. Having a few extra hours on my own means that’s all done in no time, along with some work on a current advertising project. I even manage to have a long hot bath and a shave before midnight, which is almost unheard of. My only worry now is what I do with the locusts before Claire comes home tomorrow...
