I hardly slept a wink that night as it was, but at 5am - all three smoke alarms in the house started blaring, waking us with a start. Eve quivered under the bedsheets fearing she was going to burn to death. I grabbed a coat hanger (useful in the event of a fire apparently) and rushed onto the landing, jumping like a buffoon with the coat hanger trying to hit the 'hush' button on the alarm. It wouldn't stop it. I ran downstairs, no smell of smoke anywhere.. I quickly checked all the downstairs room, no sign of smoke or fire, so grabbed the mop from under the stairs.. everything tumbled out into the hallway... I'm now in my underpants.. nothing else, except for a mop. Dancing like a dervish in the hallway trying to stop the smoke alarm from ringing. Joyce is on the landing. She doesn't hang around to watch... Can't blame her. It's not the prettiest sight.
I go back to bed.. Eve asks what the time is.. 5am I say (It's now getting on for 5.15). 5.30am, it happens again.. and 5.45am. I wonder if Joyce is having a crafty cigarette in Eve's bedroom?
I get to the hospital and walk in the room. Little man smiles as if nothing happened. Louise looks at me and says "I'm sorry for last night". I tell her I'm sorry too. We both know that it's stress and wasn't intentional. All is forgotten. I make her a cup of coffee and myself a cup of tea. I get back to the room and I see Mr. Draper, Joel's headmaster sat in the room. He said he'd visit, and Joel was really looking forward to it (I'd have dreaded it when I was his age if I knew my head teacher was visiting me...). Mr Draper had brought some presents from the staff.. all lovingly wrapped in purple foil wrap. Joel thought he had a huge bar of Cadbury Dairy Milk to open.
The first present was a book.. a very special book.. Mr Draper has obviously been paying attention to every little thing I've said about Joel, which I'm so grateful for.. It was a special edition "Beast Quest" book, with a lenticular image cover.. (often incorrectly described as 3D - it's more animation than 3D.. but that's by the by). Joel's eyes were wide open.. he LOVES Beast Quest, and this was a special book he didn't have.
The next present was a good one too... Mr. Draper wasn't sure if he'd like this one, but when he unwrapped it carefully to reveal an Official England Football Team book, it was clear he did like it - very much...
"And I've saved the biggest til last" Mr Draper said.... and handed Joel a big purple box.. "Can you guess what this is Joel?" he asked. Joel shook it gently, hesitated, and looked at his mommy... "Ooh, does it sound 'broken'?" she said, excitedly...
"LEGO!!!!" Joel squealed... and we all sat with baited breath, dreading to see that he'd already got it.. Thankfully, as Joel peeled it from the wrapping, his face beamed and we knew he hadn't got this.. a lovely articulated lorry.... Mr Draper told Joel that he'd heard about how much he liked Lego, and that he thought it was a good present to also help improve his fine motor control... Louise and I were both moved at not just the generosity, but the thought behind each present. It really lifted our spirits.
Then Mr. Draper says he has one more thing.. it's a joke book. Unwrapped, tatty, and dog eared - obviously a well read and well loved book... He says "I've kept this book on my desk for a few years now Joel, and whenever I'm feeling sad or grumpy, I have a read of this to cheer me up". Such a sweet gift. And plenty of new material for dad too..... Bonus.
Rebecca the physio pops her head around the door (they're very supple these physios) and asks if it's ok for Joel to do some physio in about 10 or 15 minutes. Mr. Draper introduces himself and says he needs to be going around then anyway, but he stays and chats a bit longer. I think Mr. Draper is very surprised at how well Joel appears, considering it's just over a week since he had the tumour removed from his brain. This reminds us that Mr. Solanki, Joel's surgeon, had kindly arranged for copies of the 'before and after' MRI scans. Mr. Draper is visibly shocked when he sees the size of the tumour and it's location in the cerebellum.
After a short while, Mr. Draper leaves us with warm wishes and love from the whole school. It's very sincere and again, most humbling. Then it's time for Joel's physio. I'm hoping I'm not in goal again today.
This time, it's Hollie who comes to collect us for Physio... She's just as happy and cheerful as Rebecca. I don't think I could work with poorly kids all day and remain as happy as these physiotherapists do.. they must either be on some serious drugs, or be angels.
Joel pretending to be a cat...
First of all, Joel has to do some stretching and balancing exercises again.. getting into the position of a cat about to pounce, he has to lean forward and to the side to reach a ball, then hold that position for a few seconds... with feet on the ground.. then same again with one leg in the air. He gets bored of it quite quickly - and also very tired. Hollie then suggests catch. "Who would you like to play catch with Joel? Mummy or Daddy?"
I do that 'take a step back to volunteer Louise' thing as Joel says "Daddy!!". Great. As if my goalkeeping skills weren't bad enough, now I have to throw and catch. I go to kneel on the hard wooden floor and my right kneecap pops again.. it's painful.. I wince, then I remember what Joel is going through. Hollie offers me a chair and I graciously accept it, slightly embarrassed at my pathetically low pain threshold.
Joel has to kneel on the mat, upright... so his legs are on the floor, but his bum is off his legs.. then I throw the ball to his cupped hands. He catches a few, misses a couple.. he has to throw the ball back to me with left hand, and right hand..
His first two attempts with his left hand go behind him.. clearly there's some signalling issues going on.. but then miraculously, his third attempt is a perfect throw, straight to me... and the fourth.. then a couple go a bit awry, but on the whole, this is amazing progress from previous throwing attempts.. I'm pleased as punch. His left handed throws were better than some of my right handed throws!
Then we move onto hoopla! Throwing rings over cones.. Hollie lays out three small cones and gives Joel a handful of rubber rings. They remind me of dog toys.. but less bite marks on them.
He fails to get any hoops over the cones.. most of them seem to go far off to the right.. Hollie and I scoop them up and he tries again. He swings a hoop around so hard, and his arm smacks Hollie right in the throat. She laughs.. thinking back to my earlier comment.. I reckon it must therefore be drugs. I jest of course, but she takes it very calmly and carries on making light of it.. it looked painful though.
Again, we score nothing.. so Hollie gets a few more cones out and says "Shall we try again Joel?" I joke with Joel as I'm helping space them out... "Shall we see if Hollie can get any hoops over the cones?"
Joel comes very close to getting one on.. but the object of course is ultimately not to score.. but to get the co-ordination back... so as we go on, his aim gets better, and therefore, that's a win for Joel.
Hollie has to go to a pre-arranged meeting, so Rebecca takes over. Joel is given the choice.. Basketball dribbling, scooters, or pilates ball... (well, 'big bouncy ball'). Joel says he likes the scooters, so Rebecca offers the scooters on a regular basis, providing that he does all the hard work exercises first... Joel agrees, like a true gent. He'd do anything for a pretty face.
Rebecca arranges cones from one end of the gym hall to the other, and gets Joel to race along by pulling with his feet.. he LOVES this.. today he's started using both legs alternately, rather than in unison.. there's still signs of the weakness on the left as he starts to drift over, but he soon reaches the cone...
Look Ma - No hands!
Then he has to lie prone and pull himself along by his hands.. he likes this too.. it should come in handy when he becomes a vet and is paddling out to sea on his surfboard to give dental checks to the sharks...
Rebecca decides to race him and she gets on the bigger scooter. Why doesn't Joel choose me to join in THIS exercise?? It looks great fun... I can't afford a segway.. these scooters might be the next best thing. I could probably build one with an old MFI drawer cabinet and some casters from B&Q.. in fact, there's an idea to save the NHS thousands! I bet these cost a bomb...
Rebecca goes easy on Joel. He wins.. by a narrow margin...
Eventually, physio session is over and we go back to the ward. I nearly wrote hotel room then.. we should be so lucky. Joel is tired, tugging his hair again... He's got to be careful when he starts his chemo, because if he's not, he'll be pulling big clumps of it out. Nearer the time, if Joel does start to lose his hair, I'm considering having my head shaved to raise money for the Neurosurgical ward. However, rather than donate any money to them for it to be swallowed up by admin and to be directed to other 'needy' departments - I'm going to ask them for a list of items they desperately need and will try and buy the items for them directly. One of Louise's work colleagues does this as she raises thousands for the hospital who look after he son suffering with Cystic Fibrosis, and she was disappointed to see the money not going to as good a use as it could be.. so she started buying them what they needed without it getting misdirected.
It's not a prospect I'm looking forward to.. I've NEVER had my head shaved in my life.. closest haircut I've ever had is a grade 2 - but when you consider they don't even have enough mugs in the kitchen for parents to make tea and coffee with - before you even think about the MEDICAL equipment.. it's simple stuff like that to make the parents' stay more comfortable at a time when their lives are already at a low.
Despite being tired - Joel wants to do the Lego that Mr. Draper brought in.. we try to get him to have a nap, but no, Lego. Lego. He wants his Lego. LEGO!!!!!!!
We set up his table, pop him in front of it and open bags one and two... peace at last.. for all of 3 or 4 minutes. The pieces are tricky.. he's tired and losing his patience. He builds half of the cab before dismantling it, not satisfied with his progress on the current step. Frustration sets in, and pieces of lego go across the room. I pick them up and tell him it's ok to take his time, that it's not a race.
He carries on.. I know he's not going to sleep tonight, until this model is complete.
Later that afternoon, a nurse enters the room and asks if we'd mind going back on the ward rather than the private room - they have a patient coming in who needs to be in isolation. We have no objection - we're surprised we had that room at all to be honest, although it is with a little in-trepidation that we run the gauntlet of parents who weren't offered that room over us...
We're further down the ward.. right opposite the snorer's bed.. a Somalian immigrant family who's uncle is supervising the poorly child. He must have been cast out of the house and told to look after his nephew, just so the rest of his family could rest.. apparently, he'd kept the ward awake for three nights with his loud snoring. Even the nurses were giving swift kicks and nudges to the bed, but the snoring continued... louder.
Thankfully, we are told that the child was discharged that morning.. Cool. Now just the question with what to do with all the presents, books, DVD's, colouring stuff, washing, food, cards etc. that make up our house at the moment.
I make a few journey's to the car to fill it up with stuff from the room that Joel either won't need, or won't want over the next couple of days. Dr. English comes along to talk to us and he's hopeful that if everything goes well with Joel's operation on Friday, Joel may be able to return home with us! At least until Monday when we have an out-patient clinic with Mr. Ford. I forget what his title is.. If I'm honest, I'm worried about Joel coming home so early, but in the same breath, I'm not keen on him staying on that ward.. there are a large number of children on the ward with brain infecions.. We fear that he may pick up a bug that will jeopardise his recoer.
We settle in quickly to bay 8, and Joel continues his model.. it's very nearly finished, but again he loses his patience and drops some on the floor. It breaks, and a piece goes under the curtain of the cubicle next to us. Well, it's an ice breaker isn't it.. Reaching your arm under the curtain is the hospital equivalent of new neighbours nipping next door to ask for a cup of sugar, or asking a stranger in the trap next to you if they have some spare loo roll.
I manage to retrieve the stray piece of lego with some dignity.. I don't think I caught the attention of anyone in the actual bay next door... but the nurses gathered around the nurses station gave me a quizzical look. I struggled back to my feet and held up the piece of lego like a trophy...
We manage to piece it back together and Joel finishes it off.. I'm thinking of asking if the nurses have any superglue.. these models are great, but so fragile.. I picture us leaving hospital (whenever that will be) and taking all these models intact.. getting home to find a carrier bag full of lego bricks from several different models.... "I don't rememer an Imperial Articulated Death Truck in Episode IV"
After he'd finished the Lego truck, we popped it on the side next to his bed. I wonder if you can get a Lego "Plymouth Valiant" like the one driven by Denis Weaver in the film "Duel"... Probably best you can't.. I don't want this truck going over the edge of the bedside unit and smashing into a million pieces. Well, 278 pieces to be exact.
Joel can relax now.. he's happy, he's completed it. He would not give up until he'd finished it... That's a good sign. He drifts off to sleep and looks fantastic... so peaceful.
I kiss Louise, and kiss little man and leave them to sleep, perchance to dream.
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