Monday 2nd November
Everything is relative. Everyone tell us how unlucky we are given what’s happened over the last few years, but a quick stroll through the reception at GOSH tells a different story. There’s always someone worse off. Josh is still bright, alert, responsive and gives us so much love back. We live in hope that he’ll come though this ordeal able to live a more normal life as a result of it. So many people here can’t even expect that. Even when we lost Alex we were aware that there were worse ways to lose a child. At least it was over quickly and we were with him when he went, we were lucky to have Josh to give us a reason to get up in the morning and even luckier to have had Joseph since. None of this makes it any easier being without Alex and there isn’t a single day that goes by without us thinking about him, but yes, everything is relative and we still have so much to be thankful for.
Today was a good day. Josh is back on form after his blip last week although he’s moulting heavily. Everywhere you look you find hair. Claire has a roll of sticky tape that she uses to pick up what’s lying on his clothes, sheets and pillows. She’s even started applying it directly to his head. I think this is what President Bush would call a pre-emptive strike. It makes sense as it stops loose hairs falling into his eyes and mouth and means he won’t be coughing up fur-balls all day like some manic Garfield. My only problem is that she seems to enjoy it a little too much. After years of being a victim of her obsession for gleefully plucking any stray eyebrows and nasal hairs that dare to catch her attention, I’m concerned about Josh’s safety. He breathes a sigh of relief when she leaves but looks anxious again when I pick up the tape and start attacking his pillow. After an hour long school lesson and completing a mosaic parrot with the play therapist, Josh decides to do a spot of songwriting and I spend the rest of the afternoon listening to tracks from his forthcoming album entitled ‘Transplant’. Not sure if it’s quite in the Lennon/McCartney league yet but there is a poignant line in the second track, ‘I’m losing my hair it’s in my eyes, I ask for help but no one replies. Someone lies around the next corner’. When I ask him who it is, he says death. Not something S Club 7 would have recorded, but Josh doesn’t seem at all disturbed by it so neither am I. After a bath, which looks like it’s fur-lined after the water’s drained away, Josh asks me to write and sing a song tomorrow. Tone-Deaf Leopard anyone ?
Tuesday 3rd November
Oh joy ! Last night we had a senior nurse who pre-empted every infusion so we didn’t hear a single alarm and a student nurse with a pen torch so we didn’t suddenly feel like we were in an interrogation room with a bright light glaring in our faces. They both even closed the door softly rather than let it slam shut which meant an uninterrupted night except for Josh’s 4 wees, which quite frankly we can manage in our sleep. When he eventually sits up at 10am, Josh’s pillow is so bristly it resembles a welcome mat. He’s definitely past the Shearer phase now and entering mangy cat territory. There’s a work debrief going on today I’d hoped to make but the timing just doesn’t work out. It’s for a children’s charity and I’ve seen the report anyway. It makes pretty grim reading and for the second time in two days I’m left counting our blessings. Josh is tired in the afternoon but gets upset because he doesn’t want to sleep. The hole where his peg enters his stomach through his skin has scabbed for some reason and looks infected. He cries out in pain when I try to clean it. Bart and Homer keep him awake and when he’s off TPN his energy comes rushing back as we slow motion fight our way around the room. Having asked for the hair clippers two hours ago and had no joy, Josh takes it upon himself to pull what remains of his hair out. This is great fun and I can’t resist joining in. It’s like plucking a Christmas Turkey and we don’t stop until he resembles Bobby Charlton. Unfortunately, when we come to have our bath there’s no hot water again and I brush away the hair from his body so it doesn’t irritate him all night and cause a rash. This takes longer than it did to pull it out. He goes straight to sleep after this and I head for the kitchen to microwave a meal Claire didn’t get round to eating before it’s chucked out of the fridge. This is my first encounter with the hospital’s industrial microwave and I’m somewhat apprehensive. A large poster on the wall warns about reducing cooking times by up to 50%. Could this be the weapon of mass destruction that was thought to have been in Iraq ? I consider diving for cover as the Indian woman in front of me decides to warm her Weetabix and milk for 10 minutes on full power. After 2 minutes it explodes and splatters against the glass like a possum hit by a Porsche. When I do finally cook my Chicken Tikka Massala it tastes and smells of soggy wheat and I vow never to eat a ready meal again before scrubbing up and returning to our room to watch Smallville. Now, who does that handsome, shiny-headed Lex Luthor remind me of ?
Wednesday 4th November
Every now and again the gastro team visit. There’s usually an entourage of at least 6 doctors of varying levels so they don’t come into the room but talk to us through the glass wall by telephone. Claire says it’s like being in a zoo, but for me it’s spookily like ‘Silence of the Lambs’ when Jodie Foster meets Hannibal Lecter for the first time. This week the main consultant is present in the crowd and tells us the BMT team are pleased with Josh’s progress and hopefully there will be no need for him to return to gastro. This is good news. Thankfully they don’t discuss Josh’s liver as I would have found it impossible not to ask for some fava beans and a nice chianti.Josh doesn’t stir until just past noon then wants to play board games before school. It’s extraordinary how quickly you get used to him being bald. He’s got no problem with it whatsoever and nor should he as he has such a perfectly shaped head. The day passes without event, which is just the way we like it. An afternoon art and craft session that involves painting with syringes proves messy but we manage to clear everything up pretty quickly – even though we’re still picking glitter out of our orifices several hours afterwards. A hot bath is called for and fortunately we have hot water again. After that Josh beats me at a DVD animal quiz game in which we both learn that many bats aren’t blind at all and have fantastic eyesight. I’m not so lucky and need my glasses to start reading the first of two new Harry Potter books that arrived courtesy of Amazon from Shelley and family. Josh is engrossed but we end the evening watching The Sarah Jane Adventures as he fights sleep desperately. Sleep wins with a knockout blow just before 10pm.
Thursday 5th November
Couldn’t sleep so downloaded free apps for my Blackberry last night to try and compete with Claire’s iPhone. Fail miserably as they are all rubbish ( Venezualian newsflashes anyone ?) except one called Drive Safely. This reads your texts and emails out loud which is more than handy in the car. Not realizing it’s on, I’m deleting old texts and accidently press the wrong button. A loud American female voice reads out one from Claire ‘ Hi Darling, Do you need pull-ups ?’ just as a nurse walks in. Luckily it doesn’t wake Josh who finally stirs around 10.30am. The days are pretty much falling into a pattern at the moment which makes them drag. Josh sleeps in while I make my bed and do any work I need to cover off. When he wakes we read or play games until the teacher arrives at 1.30pm when I eat, although today she can only stay 30 minutes so I bolt down my mixed grill. In the afternoon it’s games or painting then Josh does a few pages of work until his various infusions and feeds finish. He gets a couple of hours off the machines which is when we do exercises. While he’s in the bath I strip his bed, wipe the frame and mattress then make the bed. As Josh no longer has any hair, there’s one less task today. By the time he’s in clean clothes it’s into bed and back on his feed. Once I’ve had my bath we’ll watch a DVD together – although tonight I have the room’s TV on silently in the background to see Everton crash to another defeat. It’s been a pretty mind-numbing week. In between all these non-events, doctors do a ward round, nurses come and go with various drugs and machines bleep incessantly as infusion after infusion enters his body – usually getting air in the line or occluding the moment the nurses leave the room. Today they add a magnesium boost to everything else as his levels are down. If you’ve nodded off reading this it means I’ve done my job by communicating just how dull it gets here sometimes. Dull is good as it means things are going well. Today’s high point is a doozey though as Josh stands in front of the window and shows off his dance moves to the watching nurses – doing his best George Sampson impression to the beat of Boom Boom Pow by The Black Eyed Peas. He’s a huge hit and bows gracefully as they spontaneously applaud as one. Tomorrow Joshua’s cousin, Lucie, is spending the night here and Claire and I are off on a dinner date. Hey, it’s almost like being a teenager again. Without the acne, obviously...
Friday 6th November
So much for dull. There were fireworks in our room last night. Josh woke at around 1am screaming and scratching his groin complaining of a terrible itch. Never seen him quite this distraught and it scared the life out the nurse. Josh truly was a man possessed, shouting and hitting out in frustration as nothing made the itch go away. A few minutes later it started in his feet too. With no doctors around, I managed to calm him down long enough to get him back into bed where he sobbed uncontrollably for half an hour before finally drifting off as I stroked his head. What it was we may never know, but a Piriton infusion helped him to settle. My guess is it’s a reaction to one of his long term drugs, which tends to happen to with Josh. We can only monitor him tonight and see if there is a repeat. You become so blasé about what’s pumped into his little body after a while that you forget how much it messes with his whole metabolism. He sleeps through until noon only waking for wees and shows no ill effects when he’s up. Hemoglobin levels are down again however so he needs another 3 hour blood transfusion. This is not unusual in bone marrow transplants and doesn’t bother him at all. Hopefully it will boost his energy levels back up. With Josh settled and busy reading Roy of the Rovers, it’s the perfect time to make a work call. Five minutes into the conversation Josh’s bowels open and he unleashes a torrent of liquid poo as black as tar into his pants. The sudden movement starts his pump bleeping and stops his transfusion just as his teacher arrives to begin a maths lesson. Somehow I manage to clean him and the floor up, re-set his pump and finish my meeting with seconds to spare before she enters the room. Whoever said men can’t multi-task ? Lucie arrives just after 3pm and by the time she’s fully briefed it’s past four. A mad dash through a tropical downpour and I make the train before rush hour starts and flop, dripping wet into one of the few available seats. Joseph and a woman who claims to be my wife pick me up at the station. 2 hours later she’s sitting opposite me in a Thai restaurant and beginning to feel vaguely familiar as we tuck into tempora and sashimi. By the time we climb into bed together I’m thoroughly confused as Joseph is in another bed down the corridor and she’s wearing a nightie. Have I pulled ?
Saturday 7th November
Slept like a baby last night. Actually babies wake every couple of hours and scream a lot, so maybe I didn’t. Up at 6am though as we have to take Claire to the station to relieve Lucie so she can whizz off to work. Joseph comes along in his dressing gown. After gym it’s gardening time and after raking up 3 bin bags of leaves it’s time to tackle a 1000 piece jigsaw puzzle that I used to call a lawn. An infestation of chaffer beetles have been eating the roots for 2 years apparently and now the crows are ripping up our turf to eat the chaffer grubs underneath, The sods. It takes an hour to piece everything back together and stamp it down. GOSH news is that Josh is allowed out of his room and onto the ward now as his neutrophil count has been over 0-2 for three consecutive days. Neutrophils account for the majority of circulating white blood cells and are responsible for fighting bacterial and fungal infections. This basically means his immune system is slowly coming back, although they will have to do tests to see what percentage is his old system as opposed to the donor’s. We aren’t out of the woods yet, but it’s certainly a positive sign. All this good work may have been undone, however, as Claire tells me there were two children in the playroom that weren’t from the ward. This directly contravenes protocol. When she questions this, she’s told it’s okay as they belong to one of the doctors who had to come in unexpectedly. This is probably the dumbest thing I have ever heard and if Josh catches an infection we will have the doctor publicly hung, drawn and quartered. As soon as it’s dark, Joseph and I wave a few sparklers around in the garden before venturing out to a fireworks party at a nearby school which is spectacular. He’s too tired to even undress when we get home and sprawls in the middle of our bed with his arms outstretched and his mouth wide open.
Sunday 8th November
Stone the crows ! Hopefully someone will as they returned this morning to massacre our lawn again. Nothing else of any real note to report other than taking Joseph to a pirates and mermaids party. Joseph went as a pirate thankfully as it’s surely impossible to dance, climb or even walk dressed as a mermaid. On the Joshie front, for those of you inclined here’s a stab at an explanation of what’s been happening with the transplant - or the ‘science bit’ as Jennifer Aniston might say in a L’Oreal ad. High doses of chemotherapy were used to stop his bone marrow producing new blood cells. This is essentially why he’s now bald as a coot. The donor’s transplanted marrow cells travelled into his bones, reseeded in the vacated space and then waited for the cells to grow before releasing them into his blood stream. This is called engraftment and his blood counts are now starting to recover as a result. Red blood cells carry oxygen around the body. Platelets help control bleeding through clotting. White blood cells fight infection. These include neutrophils and lymphocytes which are responsible for fighting viruses. Lymphocyte function is generally abnormal for as long as three months after transplantation which is why Josh won’t be socializing much for some time after returning home as he could develop severe infections even when his white cell count is back to normal. And, in the words of Jennifer, all this is happening 'because he’s worth it'. He is so worth it.
