Monday 20th June
Claire calls me soon after I cycle back from school. She and Josh both had a long, satisfying sleep in the afternoon after Joseph and I left. Josh had a reasonable night but remains worried about surgery today. I’m having a paperwork day at home, but can’t help thinking about him and wishing I was there. He goes down around mid-morning and Claire lets me know when he’s recovered from the anaesthetic. All went well, although it proved a little trickier than expected and he was under for close to 3 hours. His gallbladder was inflamed which made the operation more difficult, but suggests it was necessary. There was a fair bit of sludge around too which didn’t help. The surgeon decided not go through with a biopsy of the pancreas as he was worried about slicing his way through a layer of fat which should normally be half an inch thick, but was 3 inches thick in Josh’s case, due to long term steroids. They put a new tube in his stomach while they were in there at my request as his old one would need replacing soon and this way he only has to go under once. He’s on a background of ketamine and fentanyl for the pain but his wounds still hurt when he gets out of bed or coughs. His gallbladder has been sent off for analysis and will presumably be either binned or kept in a pickle jar after that. Josh was very brave about the whole thing. At home, our new DVD recorder has started behaving erratically and I’m monitoring the situation carefully. Joseph has swimming after school and is earmarked for Grade 5 when lessons restart after the Summer holidays. He’s improving fast and could be a future Olympic swimmer in the making. We’d better apply for tickets to see him now if London 2012 is anything to go by...
Tuesday 21st June
Any plans I have for the day are scuppered when Joseph develops a tummy problem. He seems well enough but can’t stray too far from the toilet and soils several times before we’re due to leave for school. He spends the day at home with me just to be on the safe side and appears to be over the worst of it by the time he’s ready for bed. Josh is understandably sleeping much of the time at GOSH, but doesn’t appear to be in too much pain. We may hear whether our Italian trip is on or not this week as they should have started to grow cells by now. Claire had a slightly worrying conversation with the BMT team during ward round, who told her that Josh appeared to have inflammation everywhere the surgeons looked and bled easily whenever and wherever they touched him. Hopefully one of us will get a chance to talk to the surgeons tomorrow and find out exactly what they saw and what it means.
Wednesday 22nd June
Josh is asleep but looks relatively comfortable when I arrive at the hospital. It’s pouring with rain and Claire delays her journey home long enough for us to have a more civilised catch up than usual. Just before she leaves we meet another surgical registrar who’s there to check on Josh. He answers some of our questions about the general inflammation around his gall bladder but we’re still unclear. Maybe we’ll know more when they’ve analysed the gall bladder itself. There’s no way Josh is getting up for school today and at 2.30pm a volunteer sits in with him so I can eat. On my return ophthalmology call to see if we’d prefer they come up tomorrow and the answer is a resounding yes. Yet another surgeon comes to see how Josh is doing,but only because he didn’t realise his colleague had been in earlier. There must be a good collective noun for a group of surgeons... a shiver,perhaps ? Actually, I think that’s sharks. A stitch, maybe ? Oh, I know - a swab of surgeons. Yep, that has a nice ring to it. Josh doesn’t wake up for anything other than the toilet all day, but I just about manage to get a weight for him and apply his steroid cream. Our wonderful Italian doctor pays us a visit while I’m creaming Josh up and stays for a
long chat. He’s in Milan until Wednesday. Apparently it’s official business, but I reckon he’s doing a recce of the best bars, clubs and restaurants. As long as he checks out the piscinas in Pavia as well, I don’t mind...
Thursday 23rd June
Despite record rainfall in certain parts of the country,there’s a drought on Fox ward again - with no bottles of boiled, cooled water for the children. The water shortage started yesterday at noon and despite repeated pleas to the housekeeping staff to sort it out, there’s still nothing this morning other than a handful of tiny sterilised Cow and Gate bottles I sneaked into the fridge yesterday. It’s not the first time it’s happened and it’s not good enough. Josh’s pattern for the day is pretty much the same as yesterday, so when a volunteer comes at 1.30pm and offers to sit with him for an hour it comes as a huge relief. It’s raining when I set off into town but the sun comes out just as I sit down at a table outside a gourmet Mexican restaurant, just off Leicester Square. Seconds after ordering, a nurse phones to say that Josh has woken up and is sitting on the commode. He wants his dressing changed and she says he sounds confused. I tell her I’ll head back as soon as possible and scoff my way through two soft tacos and 4 bacon-wrapped prawns the size of a jockey’s thighs in record time. Josh seems fine when I get back and we play on the iPad after I’ve put his eye drops in for ophthalmology. Josh is desperate for bed again within minutes but I have to try and keep him awake for the eye doctor.I cream his skin, which looks very raw at the moment, and clean the blood off his new gastro peg but he’s fading fast. Just before he nods off completely the eye doctor arrives and it’s an all-clear as far as she can tell, but his eyelids are heavy and she doesn’t get a proper look. While he sleeps an email arrives from Madame Tussauds – the place where wax works but credit card machines don’t. They’re offering an instant refund paid straight into our bank account along with complimentary family tickets to both Tussauds and Legoland. They’re valid for a year, but can be renewed if Josh’s health means we can’t go within the allotted time. It’s a good result and if we manage to go as a family I’ll be ecstatic. The chaplain pops in again and tells me how well Josh is looking. Given that he’s asleep and hidden by his covers, I’d love to know how he arrived at that conclusion. His foot goes firmly back into his mouth again a few seconds later when he says how pleased he is that Josh finally had his operation and how we must be looking forward to going home now he’s on the mend. Sweet Jesus ! I explain the situation and tell him how difficult his job must be, whilst pointing out that he either needs to be better informed or tread more carefully. I try to be tactful and say how good it is to know he’s there if we need him, but hopefully we won’t. I go on to say that we have plenty of support from family and friends and many prayers are said for Josh every day, so it might better if he spent his time with those who need him more. It gives him an honourable way out but his skin appears to be thicker than a rhino in a leather jacket and when he says he’d like to visit us on a regular basis, I have to be a bit more brutal. He still didn’t appear to get the message and we may have to go to Italy just to avoid him. Josh wakes to watch one episode of The Simpsons then goes straight back to sleep. Claire and I are busy racking our brains as to what we get him for his birthday. A skateboard would appear to be a non-starter...
Friday 24th June
Another day, and yet another surgeon.I’ve not met this one before, but I’m guessing he’s very senior as he’s got no idea of ward protocol and is ordered out of our room by a nurse for not wearing an apron before he has a chance to speak. After a brief chat he leaves with his apron still on and is ordered back in to remove it and wash his hands. If Cameron and Clegg had turned up here with their entourage, there’s no way they’d have got away with just a telling off - they’d have been lynched. Somehow it’s Friday again and I’m here for another 2 nights to fit around Claire and Joseph’s busy social diaries. The day drags with Josh hardly stirring. His skin is very dry, flaky, itchy and inflamed but he remains vomit free since his operation which is good news. He wakes around 7pm to watch The Simpsons and manages 3 episodes before conking out, so he’s improving a little. His skin’s flared up again though and he doesn’t sleep soundly at all.
Saturday 25th June
A quick trip to Tuttis for a hot chocolate is the highlight of my morning. There’s work to send off and I’m still struggling to get a reasonable internet signal at the hospital. Josh wakes around 3pm but is back in bed soon after with tummy pains and itching. Nobody can access Josh’s information on the computer due to a glitch which means he can’t have any drugs for either. He’s up for longer than usual today and seems on good form. His dressing needs changing again because of his dry skin and I manage to get him off pain relief for a few hours, so there are slightly less wires attached to him and he can enjoy some freedom of movement. It’s nearly 10pm before he settles down back in bed but his skin is so itchy again that he can’t sleep, even with IV piriton and hydroxyzine. I snuggle up in his bed and we chat for an hour to take his mind off it. I try quizzing him on what he’d like for his birthday, which is looming. He can have pretty much anything his heart desires, but the best he can come up with is a sticker book. Hopefully we can do a little better than that, but he’s never been a very materialistic child. The strange thing is, the less he asks for the more you want to give him. Hey, maybe that’s been his cunning plan all along...
Sunday 26th June
It’s been a strange week with Josh stable but very lethargic. Not that you ever end up kicking your heels in here. Most of the day his double Hickman lines are attached to various machinery and you have to go to great lengths not to get him tangled up in the wires every time he turns over in bed or hauls himself up to sit on the commode, which invariably leaks on the floor due to a design flaw. He’s on his milk feed which means there’s another tube that enters his stomach. He’s also on pain relief which means his blood pressure and temperature are taken every couple of hours and his oxygen level every hour, so he has another two wires attached to him - a glowing red electrode to one of his fingers and a small thin tube that carries the drug itself to his Hickman. Then there’s the wire attached to his magic green button that he presses to administer it, which tends to end up wrapped around his neck like a coiled python. Every time he needs to get up, we have to move the equipment and lower the metal sides of the bed. We need a weight for him every morning which sounds simple, but it takes a great deal of effort for Josh to get on and off the sit-down scales which we have to locate and wheel to his room. While he’s out of bed, we strip it, wipe down the mattress and sides, dry it and re-make it with fresh sheets and pillow cases. Neurologically, Josh’s days are mixed. One minute he’ll be struggling to hold a cup, the next completing a difficult Playstation level on his own. It’s easy to forget he can’t see out of his right eye and every day someone makes him jump by literally approaching him on his blind side. Even without the vomiting, our days are spent juggling various bedpans and sample bottles. His topical skin creams are applied at least once a day all over his body and limbs (it was previously four times a day, but was reduced when they rose to a therapeutic level in his blood). This should be done with rubber gloves on so we don’t absorb the steroids - a rule neither Claire nor I always adhere to, so we’d probably be banned from competing in the Olympics. During the day, we rarely leave him longer than it takes to walk to the kitchen and back as the nurses don’t always come when he buzzes or hear him cry out when the intercom’s on. If he’s awake and able to do school during the day, we get a 50 minute break to eat. When they can, a play specialist will sit with him afterwards to extend the break so we’re not rushing back. Josh rarely eats anything other than a scrap of bread or a few grams of cheese. In the last three years he’s probably eaten less than Eamonn Holmes has for breakfast. We try to get him to clean his teeth twice a day, but it’s a chore that usually proves too difficult as it makes him gag - so his pearly whites are more yellow than white. We put most of his drugs down his gastro tube throughout the day, including the one that always blocks it and generally unblock it ourselves as we’re more adept at it than any of the nurses. The nurses are amazing overall and we have no complaints. The best are always one step ahead, think on their feet and have an astonishing medical knowledge. The worst make our lives more difficult when they try to help. Some of the most experienced are shocking, some of the students are phenomenal. Sometimes even the best nurses leave all their rubbish in Josh’s bed and he wakes up covered in empty syringe wrappers or lying on a discarded plastic cap. It’s tempting to find out where they live and dump the contents of our bin in their bed to see how they like it. As well as the serial litterbugs, we have serial wetters who repeatedly spill water or worse on him in the middle of the night. We also have real friends there that we will miss when all this is over and who care about him and his welfare almost as much as we do. The cleaners empty our 3 metal bins noisily twice a day and clean the floor once, although how well this is done is often debatable. Nurses are meant to clean the equipment, but rarely do. At night Josh will be woken up umpteen times for various infusions and observations. His machines will beep, buzz and bing all night, sometimes for long periods depending on who’s on duty. His sleep is always uninterrupted. He calls out anything from 10 – 100 times a night, more when he’s itchy like he was last night. It’s often not worth us even trying to nod off, although when sleep does come it’s usually deep, fluffy and rewarding. When Josh wants water it has to be boiled, cooled water and we have to chase down a nurse for a key to the fridge as it’s still kept locked up. They’re now not allowed to hand me the keys in case I deliberately spike the sealed bottles to poison the other children, or even Josh himself. It’s a joke as they’re all left on the side while they cool anyway. We keep track of how much he drinks on a white board along with his weight, poos and vomits. For Josh day and night merge as they’re mostly about sleeping. His headaches appear to have stopped but he’s hardly been up this last week, so it’s difficult to say if it’s for good. At best he enjoys a couple of hours watching TV, playing games or reading. He somehow takes all the doctors visits, unexpected scans, eye examinations and general anaesthetics in his stride. He doesn’t look much like Josh anymore, the chemotherapy has made his hair curlier and his face is jowly due to steroids and TPN. He hasn’t grown for years other than outwards due to drugs and is only a little taller than Joseph who is currently half his age. His body is a mass of bruises and his skin leathery and rashy. Then there’s his talipes as well as renal trouble, fluid round his heart and umpteen other serious problems caused by the long term drugs he’s been on. Josh hasn’t seen home for nearly a year now and in three years of living mostly in hospitals, hasn’t seen any real improvement in his health – only a deterioration. His hearing loss makes it almost impossible to communicate with him at times and it’s exhausting repeating everything 7-8 times in a loud voice. Sometimes his hearing is okay but he just stares blankly as his brain struggles to take in the information. Throughout all of this, Josh is always polite, loving and patient and lights up our lives in a way that only children ever can. He and Joseph bring us so much joy, that even when things are tough our spirits can suddenly soar because of a smile, a story or even just a shrug. Alex is never far from our thoughts and if we go to Italy what happened in Portugal will really hit home again. But Josh is Josh and we never give up hope. Equally we never get carried away with ‘miracle’ cures. We never tell Josh something will make him better, only that everyone thinks it may help and we’re hopeful that it will. He’d have lost faith and trust in us and his doctors many moons ago otherwise. I know I go on a bit too much about how strange our lives are, but when things settle I’ll be eternally grateful for what we have and just get on with it. For now though, all we can do is wait and see what cards we’re dealt. Our life isn’t terrible, just weird. I said last week that we’re a happy family in unhappy circumstances and we have no complaints about that. Today is very much a day of swings and roundabouts with Josh sleeping through his brother’s arrival at noon and the three of us going out to lunch in the sunshine without him. He plays a bit of Playstation with Joseph when we come back and it’s wonderful to see them enjoying each other’s company so much, but halfway through a family board game he fades fast and we have to get him back into bed. He’s asleep before Joseph and I reach the door. Back home there’s plenty of time to enjoy the weather and we soak each other hurling water bombs around. Claire and I are swapping over on Tuesday and have a hot date planned up in town that evening as it’s her birthday. My next task is to trawl the internet to find a nice restaurant nearby that will really make it a night to remember. Oh look, there’s a McDonald’s next to Holborn tube...
