Monday 12th October
For the first time since arriving on the ward, it feels like we belong. We finally have a schedule that tells us the comings and goings of Josh’s school teacher and somewhat elusive play specialist for the coming weeks so we can plan our days to some degree. I also have a much clearer idea of protocol for the next month as I had my Green Talk briefing this morning. This took over an hour but was again perfectly judged. Sure, it was scary – Josh will be on about 35 different drugs for the next few months, some of which will be carried into the room by nurses dressed like beekeepers in helmets with visors and shoulder length gloves because of their toxicity – but it’s what we’re here for and it’s about to start. Far better than the holding pattern we’ve been in for the last 12 months, endlessly circling with no idea of when or where we’re going to land. The best news for Josh is that because all the air in the ward is filtered, he’ll be able to leave his room and play in the playroom for another 6 days. He greets this news like a prisoner on death row receiving a last minute pardon from the president
.
The rest of the talk is mostly stuff we know because we read our ‘ BMT - information for parents manual’ but it all makes much more sense when it’s brought to life and you can ask questions. Drugs, chemotherapy, side effects, staffing, hand washing, isolation arrangements, mouth care, hygiene, laundry are all covered in great depth. Interestingly in the same breath I’m told drug and alcohol consumption on the ward is prohibited, it’s also explained that the contents of our lockers will never be looked at so if there was a bottle of vodka in there nobody would ever know ! Again, this makes the chat very human and all the better for it, although I’m not too excited at the prospect of seeing parents staggering drunkenly down the corridors, vomiting over nurses and weeing in plant pots.
After his teacher has gone and his TPN finished, we play pool and meet a new recruit to the ward - a lively 19 month old boy who decides the only toys worth playing with in the room are our pool balls which tends to disrupt the game somewhat. Josh immediately takes him under his wing, patting his head and calling him the little fellow – not often he gets the chance to call anyone that. The play therapist arrives relatively on time and I escape for a bite to eat and return for a spot of X-box snowboarding. Josh has been busy doing some pretty impressive marble painting. The Gastro team pop their heads round the door to tell me they want to check Josh’s blood for yet another genetic disorder which means testing myself and Claire too. Josh is delighted by this as he loves watching me bleed.
After we’ve both had a bath, not together obviously, I make Josh’s bed. This now also involves washing the plastic mattress with hot soapy water and wiping down the metal bed frame. While I’m doing this Josh goes walkabout down the corridor, giggling hysterically as he shares the only joke he ever remembers with every nurse he meets and blows bubbles that never burst with one of the girls on the ward that’s the same age. I watch him from the room as he revels in the attention of his growing audience and I feel a huge swell of pride. Either that or my giddiness is purely down to using too many alcowipes on the bedframe…
Tuesday 13th October
Today is D minus 7. This comes as a surprise to me as I thought it was Tuesday. Apparently when you’re in hospital for a bone marrow transplant the days count down to zero. It’s like a NASA countdown but without the rocket or the American accent. Day Zero is the day you receive the stem cells from your donor. Day Zero was probably a fine name for this before 9/11 happened and we were introduced to the phrase Ground Zero, but it sounds a little ominous now. After Day Zero, the days start counting up again but it’s not until around D21 that Josh’s white blood cells will have recovered enough for isolation restrictions to be relaxed a little. This will basically mean that he can walk down the corridor and I can stop wearing my apron.
Josh wakes around 10am just in time to see one of the doctors taking blood from me and is very impressed that I need neither cold spray or cream beforehand. This act of bravery is completely undone a few minutes later when I rub alcogel into a paper cut I got reading Harry Potter and the Deathly Hallows to him and howl like a baby for 5 minutes. Josh has his pre-meds and goes back to sleep almost immediately only stirring a couple of hours later when I mention the words Match Attax cards. By this time his chemotherapy is well under way and appears to be going well. They are using Campath because he has an unrelated donor and possible side effects are nausea, vomiting, high temperature, headache, shivering and occasionally a rash. Four hours into the 8 hour infusion things are going well with Josh oblivious to the treatment other than having a slight rise in temperature. We read Harry Potter again and watch The Simpsons while his immune system is slowly destroyed and the next few hours pass without incident - other than Bart delivering a string of butt jokes and Homer saying Doh rather a lot. Josh comes off his infusion at around 8pm and after a quick bath, a change of clothes and a game of Monopoly Deal he’s ready for an early night. Me too.
Wednesday 13th October
Payback for an early night is that Josh wakes at 5.30am and is full of beans. Don’t take that literally, he’s still nil by mouth. We try playing word association and several other word games that involve me not getting out of bed but by 7am I’m up and dressed and he’s reading. For once we’re early enough to call home before they leave for school. Confusion sets in when Joseph asks his brother if he’s had a good day, even though the day has hardly begun, and Josh twirls his finger round in circles and saying ‘ cuckoo’ over and over again in reply. Joshua’s lively start continues until pre-meds are administered upon which he immediately goes to sleep again. There is no known medical reason for this to happen so quickly, so I’m left to assume it’s purely psychological. Even an occlusion that sets his alarm off a few minutes later fails to stir him. An hour into his chemo he wakes up and asks if he can do can some English school work. After picking my jaw up from the floor I dig out his KS2 books and he ploughs through 6 pages, smiling away as he works. I can only assume this is a side-effect of his drugs that the doctors failed to tell us about.
Nip out at lunchtime when his teacher arrives to grab a bite to eat with a work friend. He is the only non-medical person I have seen or spoken to in the last 7 days and whilst he offers to put on a nurses uniform to make me feel at home I decline the offer. When my cod, chips and mushy peas arrives, it’s somehow magically turned into a toasted fishfinger sandwich. The waitress apologizes and tells us she won’t charge for it. It’s actually far better than it sounds and I demolish it completely haven’t forgotten to eat for over 24 hours.
The play therapist neglects to tell us she is having her wisdom teeth removed today and we wait in vain for her to appear.TPN finishes late and we have a mad rush to cram X-box, bed making, a bath and a Hickman dressing change into the 40 minutes or so Josh is unattached to wires. Just manage it but are both too exhausted to do anything other than read Harry Potter which, given that I have to do all the voices as well, is pretty exhausting in itself. Talking books, now I’ll bet there is an App for that.
Thursday 14th October
Today, apart from being D-6, is turnaround day for us and after a mammoth 7 day stint inside, the truth is I’d be perfectly happy to stay here. Like many things in life from driving a car to writing ads, the more you do it the easier it gets. Josh is such good company and the nurses love him. Every day at handover, they fight over who looks after him - although this may change when he finally opens his bowels and the floodgates open. Until then he is definitely flavour of the ward and it’s not difficult to see why. He rarely complains, is constantly entertaining, almost always polite and has such an infectious laugh it’s no wonder he’s in isolation. Hard to believe we’re related sometimes.
Turnaround day now involves the use of our large powder blue M&S suitcase because it’s the only bag big enough to bring in the vast clothes supplies that isolation demands and take away the dirty laundry. Quite what possessed Claire to buy this monstrosity I will never know. The zips are confusing, it marks and scuffs easily and the colour is…well, it’s a statement. The only clean clothes I have are a pair of short shorts and a too tight to be straight t-shirt, so I fish an outfit out of the dirty laundry bag to avoid looking too gay as I wheel my powder blue suitcase through the Capital. Still avoid passing the theatre where ‘Priscilla - Queen of the Desert’ is showing, just in case I’m mistaken for a cast member and pounced on.
When I left Josh he was on his chemo and doing well. Two new chemotherapy drugs were introduced today, but still no sign of any real side effects – although his hair will fall out in a week or so. We managed to finish reading Harry Potter before Claire arrived so I can tell Joseph what happens in the Battle of Hogwarts. A 40 minute train journey and I see him for the first time in over a week, beaming as he troops out of school. Ten minutes later I’m lying in the sun watching him having his tennis lesson and hospital life already feels a world away. We both have an early night but I can’t sleep. Can only assume it’s because the bed’s too comfortable and it’s too damn quiet without any bleeping machines.
Friday 15th October
An action packed day starts with me stepping on the scales to discover I’ve lost 6lbs in the last week. After recovering from the excitement it’s off to our local surgery for an emergency flu jab done as I can’t risk returning to the ward without one given Josh’s immune system will have gone completely by then. Manage to make the osteopath appointment 30 minutes later by the skin of our teeth. Joseph goes to a friend’s house for lunch. Just enough time for me to plough into the washing for next week’s stay and nip into Bromley to try and sort out my retrospective Jobseekers allowance claim for last year. They keep asking for my Home Office status but nobody there actually knows what that means or why they’d ask for it. Then it’s off to school with Joseph to discuss how he’s been doing with his form teacher. The report is glowing and he almost looks embarrassed by the praise. There is no mention of snogging in the classroom which comes as a huge relief to us both. After that it’s Taekwondo and I watch him kneeing a large punch pad as he shouts about the ‘indomitable spirit’ even though he struggles to pronounce it properly.
Claire calls in to say Josh is continuing to do well. Once Joseph’s in bed I do the ironing and stuff my face with enough cake, crisps and ice cream to put all the weight I’ve lost back in one deliciously foul swoop.
Saturday 17th October
Nothing much to report. Gym with Joseph at 9am. Always take a newspaper along to avoid talking to other parents. It’s not that I’m anti-social ( well, maybe a little…), it’s just that it’s becoming harder and harder to join in normal conversation. The first thing people ask when they see you have a child is how many more you have and what ages they are. This has been a difficult one to answer since Alex died as you don’t want to deny his existence but don’t want to blurt out you’ve lost a child either. It’s equally tricky with Josh’s health now, so you just end up trying to avoid people altogether. Josh obviously has the same problem when asked about brothers and sisters and once he’s mentioned Joseph he always goes on to tell them he had another brother who died. People never know quite how to react, The first Christmas after losing Alex, an unsuspecting Santa at Bluewater asked him just that question and was so shocked by the answer that he nearly fell off his chair. After muttering a somewhat timid ‘ Never mind, eh’, his elves hurriedly escorted us off the premises.
As it is at gym, you still hear parents moaning about having their children home all the time at half-term or how terrible their week’s been because of a family cold or a minor disagreement with a neighbour. Whilst it’s normal life and fine to hear friends talk that way, you really try not to get involved when it’s strangers. It’s difficult to pass comment and sound genuinely concerned. Joseph manages a forward roly-poly unaided on the beam without falling off and beams up at me in the viewing gallery. Fortunately I’m only pretending to read at this point and give him a big thumbs up back. Spend much of the day playing with him and it’s a real joy as always. Claire phones in around 6pm with ‘Joshwatch’ and all sounds good at their end too. Finally manage to sleep properly albeit in the middle of Match of the Day.
Sunday 18th October
Today came and went in a blur. Joseph up early. Thought about taking him to see ‘Up’ at the cinema but couldn’t bring myself to do it knowing how much Josh wants to go and can’t. Instead spent the day playing games, a walk in the park and spot of Wii before bath and bed. Never quite get used to being half a family. When Josh was home there were always things we couldn’t all do together, eating for one, but we were always a family. Claire calls to say Joshua is fine but slept until 2.30pm so he’s obviously feeling the effects of his treatment. Either that or he’s just saving his energy for when I’m back tomorrow. Complete isolation begins tonight so it’s aprons and rubber gloves from tomorrow. Hope they don’t expect me to do the washing up…
