The entries below were started in Hospital on July 8th. I vowed only to put them online if things were heading in the right direction and that we’ve somehow managed to turn a corner after our bleakest week ever. That proved to be the case, although the last 24 hours have been shaky to say the least. So much has happened since the end of May that I really don’t know where to start. Julie Andrews would say at the very beginning (a very good place to start), but I’m going to begin with the lead up to Joshua’s birthday which was on July 3rd but already feels a lifetime ago. Excuse typos and spelling as I didn’t really have time to read over what I’ve written for reasons which will soon become apparent…
Saturday 3rd July – Thursday 8th July
A month or so before his birthday, Josh developed Graft vs Host Disease (GVHD). Basically this means his new system is attacking his body. If it’s going to happen, this generally occurs during the first 100 days after transplant, so it’s rare to get it this late. It’s also very rare for it to break through the level of steroids he was on at the time. Currently it’s only attacking his skin which has resulted in an itchy, raised red rash covering over 75% of his body. Since being diagnosed with GVHD he has become more and more tired, most probably as a result of his daily dose of steroids being doubled. His muscle wastage is now so great that we can wrap a hand around his legs and he’s unable to climb the stairs or walk at anything above a snail’s pace. Two days before his birthday he was re-started on ciclosporin, an immuno-supressent drug he’d been on for nearly 2 years that GOSH believe was keeping the GVHD at bay until it was stopped in May. The addition of this drug appeared to make him even more lethargic and we feared that he would spend the greater part of his big day in bed. And so it proved. After finally waking at 11am to reluctantly open his presents, he was delighted to discover a new PS3 console along with 2 new games we knew he wanted. After playing as England and thrashing my German side ( how unrealistic is that ?) he was tired again and slept until his best friend came round early afternoon. This raised his spirits and energy levels momentarily, but after an hour or so he was asleep again and his friend was left to amuse Joseph. Josh was too weak to attend his school play in the evening even though he’d set his heart on it and we’d arranged for him to arrive late to avoid the crowds and any potential germs.
On Sunday, things went from bad to worse. I took Joseph to a boot sale at 7am, only to return at 9am to find the front door locked and our burglar alarm on. Josh had fallen in the toilet, his speech was slurred and Claire was worried he’d had a stroke given the huge burden on his lungs, heart and brain. As I’d taken the car, Claire had asked a neighbor to drive them to the local hospital, which proved much faster than waiting for me or an ambulance, and they were kept in until early afternoon. Josh’s blood pressure was high when he was discharged, but as he’s currently on the maximum dose of hyper-tension drugs there was little else they could do other than reduce his steroids - which GOSH specifically told them not to do. He took himself off to bed soon after arriving home and slept until late morning.
Monday saw Josh was much brighter and an appearance from his favourite cousin meant he was on top form for most of the day. It was Claire’s dad’s birthday at the weekend too and we had cake and tea in the garden and played Yahtzee. Josh went to bed early and exhausted but happy. At 3am Tuesday morning he woke up screaming in pain with a headache and pleaded to go to our local hospital. Claire took him in immediately and just as well. His blood pressure was 185/100 which won’t mean much to many of you, but it’s a dangerously high reading. He was also becoming confused again and having difficulty getting his words out. My sister, Judy, down from Liverpool for a flying visit during the day, was shocked to find him in such a state and back in hospital again. We were a little shocked too as he seemed to grow more incoherent as the day went on, but we put this down to the painkillers he was on. My sister somehow managed to get him smiling and interacting, but he tired quickly and didn’t really stir much after that – not even during his MRI scan which he slept right through. I took Joseph swimming after picking him up from school and somehow managed to lock him in the car afterwards. It wasn’t all my fault as the central locking has been playing up for some time, but basically he ended up inside the car with me outside and my car keys and house keys locked in the boot. Given that Claire was still in hospital with Josh there weren’t many options for getting him out that didn’t involve calling the RAC or appearing on Crimewatch. Fortunately Joseph didn’t need much encouragement to climb into the back, crawl along the back shelf and reach down blindly to fish my keys out of his sports bag before climbing back into the front seat to unlock the doors. It was like watching Mini-Me re-enacting the heist scene in ‘Mission Impossible’ and he kept referring to himself as ‘Joseph Bond’ all the way to the Princess Royal where I swapped over with Claire and spent a relatively peaceful night with Josh.
On Wednesday, Josh had a diaried outpatient appointment at Great Ormond Street and our local hospital booked us an ambulance for 9.30am to take us directly there. We’ve been up there quite a lot lately as Josh’s case is proving far more complicated than most, but we weren’t expecting to be longer than a couple of hours. Claire came too as there were a number of important decisions to make on further treatment. Everything went downhill pretty quickly once we arrived. Unable to walk or even wake, he was taken up to Safari Ward on the stretcher for his day care appointment. When the consultant came to see him, he was concerned about Josh’s sudden lack of responsiveness. He couldn’t perform the simplest of tasks. Lifting his arms, wiggling his toes, following a light with his eyes, reading coherently all proved beyond him. He had a really glazed, vacant stare and was almost catatonic. Confused about who people were or where he was, we soon realized we were unlikely to be home before the end of the week. Claire stepped out into the corridor to make a few phone calls. Joseph needed to be picked up from a friend’s house after school, we had to cancel our plans for the school ball on Friday night and we’d need to have a rethink about Claire’s niece’s wedding on Saturday where Joseph was supposed to be a page boy and we were all booked in to stay the night at a stately home in West Sussex where the wedding and reception were taking place. Whilst she was doing this, a rather large African lady kept tapping her on the shoulder and asking if she’d seen anyone enter the bathroom behind her. Claire said no and carried on her phone conversations. 20 minutes later, Claire learnt that this woman had accused her of stealing her phone and security had been called. Claire was understandably upset, given everything else that was going on, and in tears. Fortunately the authorities soon realized how nonsensical the accusation was and disappeared. For the next few hours, Josh’s condition deteriorated. Several neurologists and optimologists were called to examine him and ponder how to proceed. The eventual outcome was that Josh would be admitted for the next few days at least, until they knew what was wrong. The main theory was that the ciclosporin had caused some kind of toxicity that had affected his nervous system and that his problems would probably subside now that the drug had been stopped. Luckily I’d brought all Josh’s drugs with me along with an overnight bag just in case we had to stay. By this time it was 5.30pm and Claire had to leave to get home for Joseph. Spotting the woman who’d accused her in the corridor outside with her two year old son, I told her to head straight to the lifts and that I’d phone her if the woman followed. The next thing I knew the woman had accosted her and was trying to explaining why she thought Claire was guilty. I stepped out to explain that Claire had a train to catch, but the woman was having none of it and kept rabbiting on. Security arrived again as she started making more accusations and asked for Claire to be searched. When I ushered Claire into the lift, the woman shrugged off the security guard and ran to the other lift to follow her. We just about managed to stop her, but there was a fair amount of screaming and shouting and the woman’s baby, that she had abandoned at the other end of the corridor, began to cry. When a nurse drew her attention to the baby’s distress hoping it would distract her, the woman ran towards the lift again shouting ‘ Give the baby to social services ’. I yelled at the security guard to grab her and told him I’d hold him directly responsible if she followed Claire. In the meantime, Claire had heard the shouting and come back up. A few minutes later we heard that the police had been called. Claire was in tears and visibly shaken again but once the police arrived the situation was soon resolved. The woman allegedly left her phone in the toilet Claire was standing outside for 30 minutes whilst she’d gone downstairs. Unable to find it, she called the number and heard a phone ring near Claire and believes she’s stolen it. None of this made sense to anyone and the police weren’t even sure if the woman had ever even had a phone. I’d already requested that Claire was escorted to a taxi to make sure she wasn’t attacked, but the police went one better and took her directly to Charing Cross in their unmarked car with siren blaring. She might even have made her train if they hadn’t taken a wrong turn and gone down a dead end. She eventually rolled in at home around 8pm after making her way back from the station to our local hospital car park to pick up the car. As if we hadn’t been through enough in the last 24 hours, we’d received a parking ticket for staying beyond our alotted time. Back at Great Ormond Street, we wheeled Josh down to Fox Ward, which has now been revamped with a brand new ‘Patient Bedside Entertainment and Education system’ (PBEE for short), more wardrobe space but very little else of note. It was great to see so many familiar faces though and know that Josh was in such good hands again as I had a strong feeling we would be needing all the care we could get. Once he was settled, I nipped out to get him his promised Margarita pizza from Pizza Express and he sat up and watched the Germany v Spain game for about 20 minutes with me, demolishing at least half the pizza before I even had time to grab a slice for myself. A few minutes later he was in la-la land with his thumb in his mouth and a hint of a smile. The evening proved a long and depressing one, however. I’ll be astonished if either of us managed more than a couple of hours sleep. Josh looked peaceful when asleep but would cry out every time he coughed as his head hurt so much. By this time his reactions had become even slower and he failed to recognise me and had real difficulty speaking. He was on oxygen most of the night and every 30 minutes a nurse checked his temperature, blood pressure and reactions to light and movement. Several times it looked as if his right eye was turning out and he had a glazed expression on his face as if his lights were on but nobody was home. I lay awake thinking of Alex and Portugese hospitals with tears in my eyes until it was dawn.
Thursday began with a visit from one of the doctors in waiting, or Clinical fellows, as they are officially called here. The plan was to do an EEG scan on Josh in the room as soon as possible. This involved sticking a number of electrodes on his head and placing a large hairnet over the top of them. They then monitored his brain activity and filmed his movements both at rest and interacting. Claire arrived in the middle of this looking a little concerned. The doctors re-iterated that his MRI scan was clear and it was most likely drug toxicity rather than infection that was causing Josh’s condition. They expected to get some results back from the scan late afternoon and Claire decided to hang around until we’d heard. Josh remained pretty zonked throughout the day, which was just as well as it took me a good 30 minutes to wash the glue out of his hair from the electrodes. Imagine rubbing your hair with a Pritt stick then scrubbing it clean with a Brillo pad and you’ll get an idea of what he had to endure. At about 4pm there was a real change in him. He woke of his own accord and said he was hungry. Claire ran to the kitchen before he changed his mind or fell asleep. As soon as she got back he vomited, but still ate her pasta straight afterwards. He was even able to feed himself which was a real achievement. He was probably awake for a good half hour before lapsing back into sleep, but was generally coherent and it was a real improvement on the previous night. Claire left around 5pm after we’d been told we wouldn’t get the top line results of the scan until the morning. Unfortunately Josh’s revival was short lived. He vomited again just before midnight and his right arm, leg and eye started showing signs of abnormality in terms of response and weakness. A string of neurologists assessed him during the night but were unable to form an opinion. One minute he was almost lifeless and comatose, the next he was able to respond to basic neurology tests. His headaches increased in the early hours and we had to keep him topped up with codeine and morphine to stop him screaming in pain. At around 11pm he had a platelet transfusion in readiness for the next day’s procedure and at 3am he needed the toilet and managed to call out, but it was too late and he ended up soiling his bed and then drenching the floor. As I cleaned him up, he stood next to the bed holding the frame. With his huge bulk, mottled, ravaged skin and vacant, swollen face it was nigh on impossible to recognize him as the beautiful, brave boy who came out of hospital just 7 months ago ready to start life afresh...
Friday 9th July
The day didn’t get off to the best of starts with one of the nurses informing me that Josh’s blood results from the previous day had come back and that he need extra plasma and Sodium before his Lumbar puncture at 9am. Basically the LP involves inserting a long needle into the base of the spine and drawing out cerebral fluid. The plan had been to do another Bone Marrow Aspirate while he was under anesthetic along with a skin tissue sample to confirm his GVHD. Unfortunately his unusually low sodium count meant he would need IV fluids before the procedure. This was done reasonably quickly, but In the end the doctor’s decided that putting him under anesthetic posed too great a threat to his health and explained that it would be best to do it immediately in his room without an anesthetic. I had to hold him down on the bed in a fetal position while they inserted the needle between his vertebrae. Too weak to resist or even cry out, it was heartbreaking to hear Josh whimpering like a wounded dog as they failed over and over again to find the right spot. After 5 attempts they had to give up. The doctor was very apologetic but these things just happen sometimes. Rooney proved at the World Cup that you can’t always hit the target. They returned with one of the hospital’s leading neurologists, a taller version of Jose Mourinho, who managed to find it first time. The results from the previous day’s scan were inconclusive so there wasn’t much they could tell us other than nothing looked terribly wrong. We then spent the rest of the day waiting for the results of the LP while Joshie slept. Today was apparently the hottest day of the year and it certainly felt like it as we took turns to stroll round London and soak up some sunshine. It’s so weird seeing so many people out enjoying themselves when you’re feeling so low. After a great of discussion amongst themselves, the consultants finally agreed that they didn’t know what was wrong with Josh. It would appear the toxicity theory had been kicked into touch but there was nothing new to replace it other than it was a neurological issue, which we’d already guessed. They were all baffled and concerned. The only real crumb of comfort was that neither the MRI, the EEG or the LP had shown any visible damage to the brain, so in theory what has happened to Josh could be reversed. It wasn’t much, but it was our only hope so we clung onto it, even though we were both desperately upset. As Claire headed home, Josh was sick again and spent much of the night on oxygen. Once again he woke several times but was unable to string more than 2 words together or work out where he was. As the night wore on he became slightly more coherent but soiled the bed again.
Saturday 10th July
Today we saw a few signs of improvement from Josh. His eyes appeared more focused on the few occasions they were open and he was able to clearly say yes and no or nod his head when we engaged him in conversation. There is a definite weakness down his right side though and he struggles to move his right arm in particular. He was responsive to a pack of Match Attax World Cup cards I bought at Tesco Extra and was able to tell me which ones were swaps and which were new and came out with a very clear and resolute ‘No’ when I suggested he had a bath. This was just as well as not only would it prove impossible to get him in or out of it on my own, but there wasn’t a plug to keep the water in ! When I asked Josh if he’s finding it hard to speak he nodded somewhat forlornly and let out a muffled cry, so he’s obviously aware of what’s happening to him at some level, which almost makes things worse. It was another beautiful day in the Capital and with Claire arriving around 11am and happy to stay on the ward for a couple of hours, I took a stroll round Covent Garden’s food market, wandering from stall to stall picking at the free samples of meats, cheeses, flat breads and flavoured oils before heading for Lincoln’s Inn Fields where I had a freshly cooked chorizo, rocket, tomato and red onion on ciabatta and soaked up the sun for an hour. Back on the ward Josh was stirring by the time I got back and sat up to watch the T4 on the beach concert for half an hour. He seems to have improved a little and asked for a drink of water. Just hearing his voice again brought tears of joy to both our eyes and he even managed a smile. The Head BMT consultant came around late afternoon to tell us that they now believed Josh had a viral infection of some sort that was attacking his brain. He’s on several IV antibiotics already, just in case it’s bacterial, but they’re also putting him on the Domestos equivalent of anti-viral drugs, so hopefully he’ll start to turn a corner soon. The feeling is that the GVHD was wrongly diagnosed and that doubling his steroids was like putting out a fire with gasoline, to quote David Bowie. Once the consultant had left, Claire had a read through Josh’s notes – a bulging blue folder that positively dwarfs ‘War and Peace’. There’s a coma chart in there which I’d noticed one of the doctors filling in the day before, but had kept quiet about so as to not worry Claire. From what she could deduce, any score below 15 qualifies as a problem and under 12 it begins to get serious. Josh had slipped as low as an 8 in the last few days but is climbing back up slowly, so the improvement we’ve seen is actually official. Josh managed to stir to watch Total Wipeout and about 5 minutes of Uruguay v Germany. Both times he strung a couple of basic sentences together before going back to sleep. He even managed another smile or two. Claire nipped out and came back with a Nandos takeaway which certainly hit the spot. Her relatives sent through SMS pics of Joseph at the wedding while we ate. He’s been on top form all day by all accounts and took the dance floor by storm in the evening - showing off all the moves he’s picked up from watching Josh and JLS. When we said good night to him on the phone around 9.30pm he sounded tired but happy. Josh threw up again during the night and we had to strip him and the bed off before settling down again. Claire’s plan to stay the night here with us nearly backfired when we found out we needed permission from the ward sister. Luckily she made an exception for us but I’m not so sure it was a good call as Claire wanted to top and tail. This may be a great idea if you’re under 6, but if you’re middle aged and over 4ft it really sucks. We started off with an equal share of the bed, but as soon as I got up to reset one of Josh’s machines she somehow sidled over to the middle in her sleep. I was left balancing on the edge most of the night with her feet thrashing wildly around my head under the sheets like a couple of pythons on heat…
Sunday 11th July
So, not the most comfortable night I’ve ever had, but Josh slept well which is all that really matters. I was up and about around 7am and spent an hour in one of the parks nearby reading the Sunday papers in the sun. When I came back to the room all was quiet with both Claire and Josh asleep until past 9am. Josh woke an hour later and we were staggered by the improvement in him. It was like we suddenly had our old Josh back. The puffiness around his eyes had gone down and there was a real twinkle back in them. Although his speech was still a little slurred and deliberate at times, we could have a proper conversation with him. As his confidence came back he began to laugh and joke a little and it was almost as if he’d never been away. He tired quickly though and was soon back in dreamland. The doctors were hugely encouraged but we still have to find out what’s wrong with him and that will be even more difficult if he recovers and we don’t know why. Whilst this whole experience is far from a walk in the park, that’s exactly what I do next to chill out for an hour once Claire’s had some free time too. Joseph had a fantastic time at the wedding and is out for the day with Claire’s sister at a castle and the beach, so there’s no need for her to rush back home. The main consultant is meant to see us in the afternoon but it’s a no-show unfortunately and Claire leaves around 5pm. Josh is struggling again but overall is still in far better shape than he was 48 hours and manages to eat sausages and carrots while he watches his World Cup DVD. The final is live on TV at 7.30pm but after watching the teams trudge out onto the pitch and seeing the line-ups he turns over and goes to sleep. He didn’t miss much. It’s a troubled night. His SATS are all over the place and his machines are bleeping constantly. I lost count of how many times I had to climb out of bed to re-set the alarms but it was over 70 before we hit 3am and it didn’t let up much after that. He’s confused by what’s happening to him and it’s no wonder. He lies in bed staring at his hands as if they’re not his own and wondering why they don’t respond quite how they should. During the night he drank a fair bit of water but didn’t know how to ask for it at times. He kept climbing out of bed on his own, which is really difficult with all the wires attached to various parts of his body, but when I cross the room to help he isn’t always sure why he’s got up and just wants to be cuddled and comforted. The sheer monotony of his nights is enough to drive anyone to madness. He’s coping well but it’s starting to take its toll. He’s not wearing the oxygen mask at night, just having it wafting near him, so every time he changes position his levels drop, the alarm sounds and I have to re-position the mask, tape it to his pillow and adjust the amount of O2 he’s getting. Last night he had terrible diarrhea all night. Luckily he was in pull-ups, but getting him out of bed, pulling them off, cleaning him up and then undoing the wire on his toe to get a new pair on and lifting him back into bed without blocking any of the wires attached to his Hickman line and his peg is a real ordeal at any time – but in the dark at 4am it’s really stressful for both of us. By the time it’s light, we’re both exhausted and hoping the morning will see an improvement.
Monday 12th July
No change in Josh today. A few nods of the head and the occasional grunt when I speak to him but otherwise pretty unresponsive. It’s almost enough to make me believe I imagined his huge improvement yesterday morning. Claire arrives to swap over at around 11am, just after Josh’s Spanish doctor has quizzed me on what happened over the weekend. He looks a little hungover from celebrating Spain’s victory over Holland last night but I think we can forgive him that ! Head home and arrive just in time to pick Joseph up from school. By the time I’ve played with him, sorted out the washing and cooked us a meal, using whatever has an expiry date about to expire, it’s getting late. Sit down to watch Spartacus the TV series. It’s basically just over an hour of sex and gratuitous violence. I last about 3 minutes before I’m asleep.
Tuesday 13th July
What should have been a GOSH free day became a mad sprint down there after Claire called me to say that the doctors had discovered what was wrong with Josh. They still had to double check a few things but would talk us through it at 11am. Claire feared the worst, I think, and wanted me to be there just in case. It was a no brainer really and I managed to arrive just on time. The physiotherapists were in Josh’s room showing Claire how to roll him over and change his position when he’s asleep to try and avoid him getting bedsores. Soon after that the nurses came in with an inflatable mattress to put under his sheet for the same reason. Josh has gone backwards again. His right hand side is slow to react again and his eye is turning out. Claire hasn’t had a word out of him since yesterday. After what seemed an eternity, but was actually only 90 minutes, the doctors filed in. All 5 of them. This filled Claire with dread and me with confidence, Surely if it was bad news it would be just one of them ? So it proved. The Lumbar Puncture had shown up a virus – the chicken pox virus – and that’s what they believe is attacking Josh’s brain. The good news is that it’s treatable. He was given an IV infusion of the drug Aciclovir on Friday, which could even account for his short-lived but miraculous recovery on Sunday. He’s been on it since transplant, but only orally. They think that putting him on the IV version will make a difference and that he will recover. The other virus they believe he has is HHV6 which could also explain his muscle weakness and possibly even his rash. They will need to do more tests during the week and feel confident enough to put him under anesthetic tomorrow to press on with a couple of the procedures. It’s good news rather than bad and they handle the whole thing extremely well. All the consultants in the room know Josh well and are good communicators. And they all so obviously care about him, which also means a lot. Once Claire and I have had a quick chat, I head off to the station to get back just in time to take Joseph for his swimming lesson. I get a little grumpy when I have to shower him afterwards in a tiny cubicle as the larger disabled / parent and child one is occupied for a good 10 minutes by someone whose only disability is that they have a beer belly the size of a small continent.
Wednesday 14th July
This is just a quick update written at home on a flying visit to let you know of a shattering development. What should have been a relatively normal day at home was turned upside down when Claire called me 10 minutes after telling me Josh was fine following his visit to surgery for a bone marrow aspirate and a further Lumbar Puncture to scream down the phone that they thought we were losing him and to come at once. Claire’s call was exactly like mine to her in Portugal when Alex was dying and it brought back chilling memories for both of us. Surely we are owed a little luck this time ? I jumped on a train and was there within an hour. Josh had been doing fine and recovered well from anesthetic but had then suddenly had a fit and had stopped breathing. The emergency team arrived instantly and worked on him with Claire out of the room. After what seemed like an eternity, but was hopefully only a minute or so, he started breathing again. Shortly after he had another fit, this time a little shorter. By the time I arrived the physiotherapists were showing Claire how to roll him on the bed to be able to change pants and sheets as he was almost completely immobile. We both stayed the night on the ward just in case it proved to be his last. Being Josh, he really put us through the mill with his ups and downs in the night with us having to change him, his sheets and his blankets and pillows at least four times – not an easy task and it took a good 20 minutes the first time trying to do it without hurting him as he is so frail. Being Josh, however he managed to recover somehow and at one point around 4am managed to speak again for the first time in several days calling out ‘ Dad. Help me !’ as he knew he needed changing. He has since become more and more responsive and whilst his right hand arm and leg are still relatively immobile he is saying more and more and even managed a giggle when his floppy right arm kept whacking me on the head as he struggled to control it. I left Claire around 1pm this morning to bring back clothes and other essentials for what will no doubt be another long session at GOSH. Josh has been magnificent once again and we can’t begin to tell you how much we ove him and how proud we are of him for being such a fighter. Lesser mortals would have given up long ago, but not our Joshie. We have every reason to be hopeful about the future and whilst I can’t update this site from the hospital at the moment I will do so as soon as I’m home again with hopefully some more good news. In the meantime, please think and pray for Josh making a full recovery. We would really appreciate it.
