Thursday 28th – Sunday 2nd October
First of all, a big thank you to everybody for their kinds word and unconditional support. You can go through so much and remain so stoic, but the moment the texts and emails started coming in it’s impossible not to crumple up and have a good old sob. The reason Claire and I don’t cry that often and really let ourselves go has nothing to do with keeping a stiff upper lip, it’s that we fear we’ll never stop, I didn’t need Joseph’s overnight bag in the end as things settled down a little at the hospital. Josh is on oxygen but doesn’t appear to have any major breathing difficulties, which suggests he was over sedated last night and that’s why he stopped breathing. I’m up at GOSH not long after dropping Joseph at school. It’s a clear blue sky as I wheel my suitcase from St Pancreas, but there’s no spring in my step. Just a feeling of impending doom that follows me up the road like my own personal little grey raincloud. Claire’s in the room on her own as Josh is having his MRI. It was tricky putting him to sleep by all accounts and they’re unlikely to do a lumbar puncture while he’s under general anaesthetic as it can relieve any pressure on the brain too quickly and cause serious problems. We go down to collect him together. He’s lost so much hair in the last few days and his scalp looks dry and crusty. His whole body is black and blue from bruising. A fire alarm goes off somewhere in the building just as we’re about to wheel his bed back to the ward and we have to stay put until there’s an all clear. At least we weren’t in a lift at the time. I get my first glimpse of what Josh is like soon after we return to the room when he wakes up. He’s deteriorated since yesterday and it’s impossible to decipher. He doesn’t open his eyes, but points around the room while he screams and panics and panics and screams. We guess he needs the toilet and lift him up in bed and onto the commode. This is far more difficult than it sounds as his left arm and leg just hang loosely by his side and his weight pulls you down towards him. More bruises appear almost immediately. Claire stays until late afternoon, She’s exhausted as her adrenaline rush that’s somehow kept her going for the last few days finally desserts her. During that time she tells me what she can and one of the most senior consultants comes to see us. The MRI told them nothing. They were expecting to see areas of mass inflammation that would confirm the pressure in his brain but see nothing. They can’t really explain it properly. I guess if there was a large tumour or a fungal infection it would show up more clearly as a big, white glob. Trouble is, his inflammation could be so widely spread that it’s too diffused to pick up. BMT’s guess is that rather than being the JC virus, it could be the proliferation of his new targeted lymphocytes gathering there to fight it that’s causing the pressure and the problem. Neurology disagree. BMT want to give him a 48 hour dose of strong brain steroids to bring down the inflammation. Neurology disagree, but they’re going ahead anyway. We’re told it can’t do any harm, but I can’t get my head around why that would be the case. If they’re wrong and it’s the virus, won’t it lower his immune system and allow the virus to spread even more ? There are no words to describe the next three hours after Claire’s gone. Okay, there probably are but it’s more than likely I used them all up around this time last year when he started to come out of his coma and would just scream for 20 hours a day. Josh isn’t Josh anymore. It’s been hard enough that he hasn’t looked like himself for nearly two years, but at the moment there’s nothing really left of him at all in there. Please God, let it come back or grant him some peace. It’s a terrible thing to confess and I’d never act upon it, but you do just want his suffering to stop at times like these. The doctors can’t do anything. The nurses can’t do anything. It’s mostly just you in a room with someone who looks vaguely like your son screaming away, tearing at his lines, targeting your face for attack and you have no idea what the right thing to do is. It’s only the fact that we’ve seen him come out of this before and start to rebuild himself that keeps us sane. He’s done it before, he can do it again. After hauling him in and out of bed 7-8 times when he appears to be pointing at the commode my back goes into spasm. I’m screaming in pain but there’s no respite. Just bending over the bed to pin his arms and legs down is like having a red hot needle shoved into my spine. Eventually I decide to try and get him to go to the toilet – either in a wee bottle or just on the sheets and mats which are easy enough to change, even with him in the bed, as we’ve had years of practice at rolling him. There are nurses in the room but nobody really knows what to do. There is nothing anyone can do. I crawl onto the bed with him and pin him down with my arms and legs while trying to sound relaxed and soothing and stroke his head. Josh is having none of it and twists his fingers into my eyes. The doctors want to give him more midazolam and I think it’s time to try it again, despite the breathing problem he had last time. We try a half dose and then the other half not long afterwards, but it does nothing. He’s so strong on his right hand side that he just fights me and the drug for 3 hours before finally conking out. Every time they take his blood pressure he wakes up screaming and panics and starts pointing again. I manage to get him to wee into a bottle sitting up and leaning against me on the side of the bed, but it’s a one off. He manages to produce a few stools when I can get him onto the commode but more often than not he just points back at his bed, then the moment he’s back in it points at the commode and tries to get up again. When he’s sitting on the commode he tends to put his good right arm around me for a cuddle and then tries to bite my nose off as we nuzzle. Hopefully it’s not a tactic he’ll use later in life when he starts dating. The night shift arrive and includes a healthcare worker we know and love who is as strong as an ox and closely resembles one in a certain light. We love her to bits and she helps me as much as she can but the complicated logistics of getting him up mean it’s better to try and keep him in bed. At one point there are 3 nurses in the room but they are all just stand around watching, unable to offer up anything constructive and then, when I turn around a few minutes later because I actually need them, they’ve all scarpered. When one finally comes back, I go mad and ask would happen if I wasn’t here and what they’d do. The answer is a long time coming, but it’s along the lines of they wouldn’t leave him alone and they’d have 3 people there to hep get him out of bed. It’s midnight by now and the healthcare worker sits in with me while I hold Josh down and bark out orders. Hot water, towels, large floor mats, small floormats, cold water, straws, new sheets, hold his legs, move his pillow, lower the bed, raise the bed. It’s better having someone with me. She has always been very hands-on and is the best possible person to have around under the circumstance, but it’s still far from idea. All the while Josh just keeps screaming, pushing me away, tearing at his lines and trying to haul himself up and get out of bed. It’s not even a human cry anymore that he’s emitting. It’s something primeval, like some crazed chimpanzee being tortured. He eventually settles around 1am. He had more midzolam but it’s impossible to say if it worked as it was a good hour before he stopped screaming. I leave the monitor on so the nurses can hear if he becomes unsettled again and I can hopefully get some sleep. I just lie there in the dark thinking every whimper and sound will herald another 3 hour fight, but apart from an isolated incident around 3am it’s all quiet until I wake up around 7am.
My back tells me not to get up, but I have to talk with the health care worker before the next shift and tell her I love her for what she did last night. I’m also keen to find out how they coped with Josh’s toileting overnight. Maybe there’s a masterplan that I didn’t think of. Unfortunately not, as it appears he didn’t go at all while I was asleep and only stirred a couple of times otherwise. Each time I pulled back the curtain to I’d see her there quietly holding his arms down and trying to soothe him at the same time. He drifted off back to sleep pretty quickly each time and so did I. Could it be that the steroids are working already and he’s becoming less agitated or am I clutching at straws ? I bumped into Josh’s favourite nurse yesterday. She’s specifically asked not to look after him as she’s too upset to see him this way. It’s a good call and one I’d willingly make if I could. I’m not sure if he even knows I’m here at the moment, let alone who I am. We don’t even know if he can see. Dr Robert pops his head round at 9am, even though he’s off the ward for a few months. I quiz him about the steroids and ask him how it can be that they’re not a risk, and he tells me that’s not the case. There is a great risk attached, but I guess the feeling is more that we have nothing to lose as things are so bad. I wish it had been put like that the first time. I see a neurologist shortly after that. They didn’t want to put him on steroids as they believe you treat the infection before you treat the inflammation and they’re desperate to do a lumbar puncture to find out what the infection is. When you delve a little deeper though, there’s no infection that we’re not covered for anyway unless it’s JC in which case there’s little we can do. The steroids will allow JC to spread, as we suspected, but I’m reassured by BMT that it shouldn’t make a huge difference and in the short term it could help the inflammation to settle, even if it is JC. BMT say a lumbar puncture will put him at real risk, whereas neurology say it will relieve the cranial pressure and are keen to do one as soon as possible. If it was ‘Who Wants to be a Millionaire’ we’d phone a friend, but as it we’re on a 50/50 and we have to go with BMT, Chris. And yes, that’s our final answer. Josh hasn’t moved a muscle since 3am other the to pull the bed sheet up over his face so it’s covered completely. It’s not a good omen, but his oxygen levels are high enough for us to turn his supply off completely which is one less thing to worry about. We wake him at 2pm to change his sheets which are soiled and have been for hours, but we’ve been too scared to touch him. Once he’s stirred, the pattern is no different to last night as he screams and screams, tries to pull himself up, attacks me and pulls his lines. We manage to pin him down long enough to clean him up, change the sheets and his dressing, give him some water which as least shows he can swallow, and remove the cannula from his foot. He settles down pretty quickly after that, although while we’re changing him he wees all over me, the side of the bed and the floor for about 5 minutes. The good news is it means there’s no point in weighing him now as it’s impossible to deduce his fluid balance. The bad news is I won’t be able to wear my slippers again for a few days – if ever. The curtains remain drawn all day with a single shaft of sunlight filtering through a narrow gap to remind me there’s a whole world out there and it’s a sunny one. With Josh asleep I venture out for 30 minutes around 4.30pm and catch some rays in Russell Square. The ophthalmologist is still down to see Josh this evening and comes soon after I return. Josh woke up not long after I left having soiled the bed but was squeaky clean when I got back. Josh doesn’t need eye drops because his pupil is already dilated. It contracts when she shines a light on it, so it is working but we’ve been told to keep the proverbial eye on it over the weekend. Its size is hopefully down to the after effect of some of his drugs or simply reflects his distressed state. If it stops contracting there’s little we can do other than have another MRI over the weekend. He fails to settle after his examination and it’s heartbreaking stuff. No parent should ever have to stand over their child and watch them suffer like this. He’s completely naked in bed, has hardly any hair left, won’t open his eyes, can’t communicate and just thrashes around on the bed screaming and lashing out like a wild animal for a couple of hours before settling down with the sheet over his head again and his bruised and battered leg hanging limply over the side of the bed with his hospital identity bracelet on it. There’s little of Josh there to recognise at the moment, which makes it slightly easier to bear I guess. Even his no biting rule has gone out of the window and he manages to break the skin on my thumb with his teeth. His peace is shattered before long as an x-ray of his Hickman line has been requested because it won’t drawback or flush. This isn’t good as it not only means we can’t take blood samples, but quite a few of his drugs can’t be administered. It’s 8pm and we’re still waiting for the x-ray as I write. I might try and cram a short nap in first, while I still can...
Last night’s x-ray was done quickly and very efficiently, although I had to leave the room as they forgot to bring up a lead-lined coat for me. The radiologist held him down and took the picture at the same time. Strangely, she wasn’t wearing a coat. Maybe she had lead-lined underwear on. Josh settled again relatively quickly and without the aid of drugs. At one point he spoke – not just a word but a whole sentence. ‘ Can you tuck me in ?’ he muttered as he pulled his sheet around him. My heart skipped a beat and I’m glad there was someone there to verify it as I thought I’d imagined it for a second. We’ve managed to get him in nappies and he’s aware of when he uses them as he gets distressed and points down at his groin. It makes life easier for all of us – especially Josh. Hopefully he’ll bruise less now we don’t have to move him around so much. Once again the nursing team are happy to look after Josh during the night and I climb into bed and sleep through until 5am, when he needs changing and is particularly noisy about it. There’s a little bit of movement creeping back into his left arm and the day begins optimistically. It proves short-lived as Josh suddenly begins to shake and he has a seizure. His whole left side goes into spasm and his left pupil rolls to one side. The doctor takes an age to come, but it doesn’t feel as serious as the seizures he had last year. When he does arrive, he tells me it’s a focal seizure which means only part of the brain is affected. If it becomes a full seizure it’s far more serious. They give him midazolam to calm the movement down followed by another drug which is specifically for this type of seizure. Everything seems under control and I find myself starting to rationalise that it’s a good sign rather than a bad one as seizures generally mean a change in the brain and all the signs over the last 24 hours have been more positive than negative. Everton v Liverpool is on Sky, but it’s not the same watching it without my football buddy. Everton are down to 10 men wrongly after 20 minutes and once they go behind I don’t bother watching any more. Neurology pop in to check it was a seizure as they’re not convinced by the doctor’s description. It’s a case of bad communication and as soon as I recount what actually happened they’re pretty convinced it was. They recommend a new drug to replace midazalam as they think it knocks him for six, but again this is down to misleading information they’ve been given. The new drug would be inserted up his bottom which doesn’t sound like a great idea given that he has GvHD there. I ask them to check with Gastro and BMT first. A similar misunderstanding happened yesterday when three members of the pain team came in to set up a pain relief plan for Josh’s headaches, when he hadn’t had any for several days and the last thing he needed was more sedation. The doctors need a weight off Josh as they’re worried about his renal function and I’m not entirely sure how to get one. The nurse suggests a hoist which makes sense and collects one from another ward with an animal name. Lion, Elephant, Giraffe or Dung Beetle – one of those. Josh wakes and becomes very distressed the second we slide the sling under his body and hoist him up into the air. He soils himself and the sling and we fail to get a valid weight as the digital readout isn’t working. Either he’s gained 15kg overnight or it’s completely buggered. In the end we lower him back into bed and I pick him up in my arms and sit down on the scales in the room. He basically weighs the same as he did last week. This come as a huge disappointment to the BMT team who were hoping he’d gained a few extra pounds which would explain his high creatinine and urea levels. As it turns out they’re barking up the wrong tree as I find out neurology reduced his fluid intake by 20% as they were worried it could put extra pressure on his brain. Does nobody communicate in this place ? When I catch up with Claire at the end of the day, our shared knowledge of the week suggests the drug protecting Josh’s good eye has stopped, but the drug that’s meant to replace it hasn’t started because of potential kidney problems. We’ve always said that if we had to balance the kidneys off against his sight, the eye should always come first. The last time they took him off the drug he went blind. Despite all the reassurances they’re giving us that it won’t happen again they can’t possibly know that. I hope to God they’re proved right...
What is it like inside Josh’s head at the moment ? I wish I knew. As soon as he wakes he starts screaming and doesn’t really stop until he’s asleep again. Last night he only woke three times and settled within an hour, but only with midazolam which we’re still using. The nurses looked after him each time and changed him and the bed. It’s so hard to just lie in bed hearing Josh so distressed and see him thrashing around and not do anything to help. Every time I hear him and pull the curtain back to see him, the nurses are already there, which is a real comfort. I usually get up in the end, even though there’s nothing I can do that they can’t. I always have a glimmer of hope that hearing my voice, catching my scent or feeling my touch will calm him in a way they can’t, but it never does. He doesn’t appear to know I’m even in the room. They only take his blood pressure when he’s awake now and it’s the same when they check if his pupil is dilating. What is going on inside that head of his ? Is his brain completely scrambled ? Is he dreaming or hallucinating ? Is he in pain and suffering ? Are there any comprehensible thoughts going on in his head ? We’ll never know, but having been through it before, we at least know he won’t remember anything about it - if and when he recovers. It’s a huge relief as last time we were worried he’d be emotionally scarred by the whole experience. There’s nothing positive to get excited about overnight, but nothing negative either – so I guess that’s a plus. The morning continues in the same vein. They are looking to give him more fluids and hopefully restart him on acyclovir to cover not just his eye, but just about every other infection too. Josh wakes distressed at 11am and with military precision we cram everything we need to do into the next 10 minutes while he’s screaming anyway. As soon as we’ve changed him I lift him off the bed and sit on the scales holding him while a nurse changes the bed. We pour enough drinking water out into a cup for him to drink from the bottle without spilling it once he’s back in there and that keeps him still and silent enough for them to get a blood pressure. I wipe his face and peel off the dry skin which comes off in ‘Frosties’ sized flakes and apply his steroid cream all over his body. The nurse opens his good eye and shines a torch in it to check the pupil’s dilating. After that he goes three more times in the next hour before finally settling down at 2.30pm. While he’s quiet, a volunteer sits in with him and I get something to eat and enjoy a break in the sunshine. Claire arrives around 3.40pm after Mass and Joseph’s taekwondo grading. Josh has been left off the sick list at church for the last few months for some reason, which is a shame. Maybe they take you off the list if you’re ill for too long in case it looks like your prayers aren’t being heard. He features high on the list at St George’s in Bickley though thanks to the sterling efforts of one of his old teachers from Breaside. Joseph passed his grading ( quite a few didn’t) and is officially a yellow belt now. Mess with him at your peril. Josh is starting to stir just as I leave at around 5.30pm. It’s a relief to be going home, but a shame too as I know what Claire’s going to be going through over the next few days and it’s hell. Forget Heironymus Bosch’s painted depictions, this is as close to Hell as it gets on earth and you really wouldn’t wish it on anyone - let alone someone you love. Joseph’s spent the afternoon at a friend’s house and I pick him up after watering our parched garden. In bed, he tells me that quite a few of his friends at school think I look like Steve Backshall who hosts ‘Deadly 60’. I can think of worse doppelgangers as he’s at least 10 years younger than me and a bit of a housewives favourite. Joseph then shatters my illusions by saying he can’t understand it as my hair, face and body aren’t even similar to his. Guess it must be my huge, reticulated python...
