In search of elusive...

Monday 7 February, 2011

Sunday was pretty quiet..  Joel finished his Lego aeroplane - and it's one of the few Lego models that HAVEN'T flown across the other side of the ward..  given it's an aeroplane and thus far the only one you'd EXPECT to fly across the ward, we're pretty surprised it didn't.

 

I'd gone to work last night to shoot a band at the O2 Academy 3, "Little Comets" for a Sunday red-top..  I was taken aback when a guy came up to me and asked if I was Jason...  he and another guy introduced themselves - one of them being Matt, the bassist.  Matt then astounded me by saying he was going to give me a t-shirt for Joel - but was going to get the band to sign it first...  this he did..  Lovely guys...

When I arrived at Joel's bed, I told him I had a surprise for him.  Laid back on his pillow, arms slightly in front of him, he flickered his eyes just over the top of his iPod case which he was holding horizontally...  a look of anticipation...  I smiled at him, he smiled back.. then no sooner had he given me that warm loving grin, his gaze returned to the screen at his fingertips and that all too familiar 'squawk' as an angry bird was launched.

It looked like it would have to wait...

Thanks to the guys from Little Comets for very kindly signing and donating this t-shirt to Joel - Much appreciated!

 

Monday afternoon - I decide to warm a piece of pizza up in the microwave in the parents room..  it's a small little thing, barely big enough to house one of the plates, but I only have two average sized wedges of pizza (ahem)...  I'm trying to cast my mind to the timings on my own microwave at home, and also trying to find out the wattage of this one..  "Ok, give me a clue.." I mutter to myself...  unaware that the little Irish grandmother from the bay opposite Joel's is in the kitchen there as well..

In her raspy Irish brogue, she begins to advise me on the technical aspects of the microwave.. "Ah - de best settin' for dis is dis..." and she begins to work the buttons on the display with finesse.  There are 3 settings for the 'auto cook' button, which she presses 9 times, cycling through the options 3 times..  then she just pokes random options like some mad scientist, turns the dial to 8:52, and hits the start button.  "Dat's what I always use"..  she says... as she turns around and goes back to what she was doing..

Eight minutes and fifty two seconds, on full power, with god knows what other options she'd chosen, but I definitely wasn't cooking a leg of lamb.  I struggled to imagine how a leg of lamb would even fit in the microwave, but then I'm drawn back to the timer..  8:52.... to warm up a couple of slices of cold pizza.

"It's going to be cremated" I thought...

The little Irish woman pipes up "Ah, dats de settin' dat works perfect for me all de time...  but you might wanna keep an eye on it, it gets a wee bit hot..."

 

Now I know why the fire alarms go off so frequently.

 

 

The rest of the day, Joel spends in bed doing a little bit of homework, but mostly Angry Birds.  (Rovio - you have a lot to answer for!).  There is no physio for a while..  he's hooked up to a drain now possibly for the next week, so he can't even get up to go to the bathroom without the drain being clamped off...  he get's through a fair few of the cardboard pulp urine bottles.... Every time he uses one on his bed I keep thinking of the mornings I've woken up at festivals in my tent, scrambling for a 500ml pop bottle..  (quite specifically 500ml...  not a drop more!).  These would come in useful.  I wonder where you can buy them from..  I could probably make more selling these at the Download festival than from photo sales, given most of the bands have restrictive contracts..  saying that, half of them would end up full of wee, flying over me while I'm taking pictures anyway.. so I knock that idea on the head.

 

While it's been a pretty uneventful day (and I'm sure it'll carry on throughout the week, given he can't get out of bed while hooked up to this drain), I wonder if it's going to delay his radiotherapy.. he's supposed to be having his mask moulded on Wednesday, and that's at the Queen Elizabeth hospital in Edgbaston...  it won't be easy getting him there, or having the mould made if he's still hooked up to it.  We'll see.  For now though, it's been a quiet day... which I'm thankful for.

 

The Remedy (I won't worry)

Saturday 5 February 2011

After I left last night, the doctor needed to put another stitch into the back of Joel's head..  fortunately this time, with the local anaesthetic...  Then they told Louise that Joel would be prepped for surgery first thing to have a lumbar drain inserted into the base of his spine. This would be to hopefully relieve pressure from the build up of CSF at the back of his head and reduce the risk of his wound opening up again..  so the theory is that if the wound on the back of his head has less pressure, it will heal quicker and stronger..    Lets hope so..  the drain looks awful and no matter how many cushioned dressings they pad around his waist, it still looks bloody uncomfortable..  I imagine he'll be so uncomfortable on his back that at least he'll give his iPod a break.

 

I should have guessed better.

Aunty Marion and Joyce came with me today.  Louise said they wanted me to give them a lift so they could go and walk around Birmingham for a couple of hours, then come to the hospital later..  in the meantime, Louise would take Eve out for an hour, and I would look after Joel.

I gave Eve £40 in cash..  first time I've given her so much money to take out with her - but I told her - £10 to treat herself to something nice, £10 to treat Joel to something nice, £10 for mommy to treat herself to something nice, and £10 for her to pick something nice for me.

Two and a half hours later, Marion and Joyce return from their walk around the town..  they sit in relative silence...  occasionally breaking into conversation about people they know, or to tease and tickle Joel.  I'm not very talkative...  I don't have anything to tell them - nothing they don't already know at least...  it's an uncomfortable silence..  I can sense an atmosphere of three people struggling to think of anything positive to say.

'Hinge and Bracket'

I take a snapshot...  I think I get away without being noticed..  The photo says it all really, and wasn't posed, however much it looks like it.....  I look at the photo just after taking it and can't stop giggling..  It reminds me of Hinge and Bracket..  (http://tinyurl.com/6l5jtfp)

Anyway, for those wondering what they look like - that's Marion on the left..  Joyce is on the right, looking like she's just come from a bowling league match.  They're loveable...  They won't mind me posting the photo on Facebook..... and they'll see the funny side of the 'Hinge and Bracket' comment.....

...At least, I hope they do.

It's not long before Louise and Eve return to the ward...  Eve has new shoes.  Not one pair, not two pairs, but several pairs of shoes..  new school shoes, and new trainers..  (£8 - £20 off, so I don't mind!).  There's a box of Lego for Joel (Bargain if that cost < £10!), a book for mommy (£7.99 RRP - but half price at W.H. Smiths...).  Nothing for me..  Nada.  Diddly squat.  I was looking forward to a pizza, or a box of krispy kremes, or at the very least, a colouring book...  :)  Thanks Eve....  I'll remember that.  Now I decide I will take umbrage at the fact she's had those trainers, even with £20 off.....

Where's MY present??

Louise bought Joel a new lego model - a Lego Creator Aeroplane...  with LED lights that actually glow!  It's getting late in the day, and if there's any hope of him getting to sleep tonight, he'd better get started on it.

Surprisingly, he's lying on his back for much of the day - albeit the occasional wince as he turns and pulls the drain somewhere along the line...  I hope it holds..  all these tubes connected to him..  he really is like something from Avatar, but not as big, or blue.

Our next door neighbour had dropped a parcel in for us as well on the morning..  she'd bought some Lego for Joel as well.  I think we should rename Joel "Goel"..  a decent anagram I feel.  Unfortunately, he's already got this lego model - from Toy Story, but he isn't bothered at all at that fact - he enjoys putting it together again, and we'd forgotten that it's friction powered as well..  Va-Va-Voom!!  I can picture lots of injuries on the ward as a result of this lego zooming around the floor.

 

The registrar comes to talk to us.  It looks like Joel is going to be in for upto 10 more days... This isn't good news.  Joel decides to start his Lego aeroplane, against our advice, but with us being so close to the onset of a strop, we let him open it, even though it's already well past his bed time. He makes good progress, but starts to get frustrated after a while - his fine motor control still nowhere near normal.

He's got over half way on the model and he's obviously too tired to continue..  we take it off him, put it on one side and before long he's fast asleep.  Louise and I chat.  We're both terrified, and crying and the thought of what future lay ahead.  We hope the drain works, and I get worried about it causing the cancer to spread..  Louise assures me it won't, but then we continue talking and worrying about his quality of life at the end of his treatment.....

I start crying, wondering if he'll actually reach the end of it.  I'm a 'glass is half empty' kind of guy..  not always, sometimes I'm optimistic - but most of the time - I tend to look at the negative side of things.  It's an awful trait.

I have a very good friend, Stuart, who follows these 'positive' life coaching courses and workshops..  I've never been interested in going along to one - I always feel like they're run by charlatans who just have the gift of the gab (that's not a slur on them, it's just my prejudiced viewpoint - although I don't doubt there ARE people taking advantage of vulnerable souls, just like any other profession), but I admire Stuart's positive outlook on everything..  At this moment, I wish I could see the world in the same light that Stuart does..  but I don't have the strength.

People have been saying prayers for Joel..  and we appreciate them - yet at the same time, we question the value of the prayers...  after all, what kind of God would serve this disease on Joel in the first place?  What has he done to deserve it?

Perhaps it's a test for Joel?  I can't imagine it would be one for Louise and I - that would be like using a child as a human shield.  Bizarre that I don't practice religion or believe in God..  (I'm agnostic, so I don't dispute God either), yet here I am questioning whether it's a test from God...  I'm not particularly keen on the fact that I'm reaching out to 'God' for answers, a cure, and someone to blame.  That's not who I am..  yet I find myself in that uncomfortable position.

TGIF

Friday 4 February 2011

Tea.. Best Drink Of The Day..  except for a 2-pump Caramel Latte from Starbucks

This morning, Joel is due to see the opthamologist, Dr. Barry.  His name is John Barry.  This struck me as rather poignant as I'd read earlier that day that the composer John Barry (James Bond & Midnight Cowboy themes among others) had died recently.   This John Barry however is quite young.  He looks too young to be qualified actually, but he knows his stuff and is very good with Joel.

His appointment is at 8.45 - and as I'm dropping Eve off at that time, it means I won't be able to be with him..  so I decide to join friends at Starbucks in Walsall for our (what once was) usual Friday coffee morning.  I haven't had a good chat with them for a few weeks, and they all want to know how Joel is doing.

As I'm about to leave, one of the parents comes up to me and goes to hug me..  I'm a bit taken aback, considering his build - and I was expecting no more than a handshake.  Still, perhaps he's not afraid to show his feminine side and wants to give me a good caring hug and pat on the back.

As he approaches closer, he grabs my hand and pulls me toward him..  "Hello, Steady tiger..." I thought.  He shoves an envelope in my hand and says "We really don't know how else to help, but know that you'll be needing this...".

I can tell what's in the envelope, and I offer it back..  "No, please, you shouldn't...."  They tell me it'll help with immediate needs.. they're right..  I've only had one paid job since the first week of January, and being self employed, I have no sick pay or holiday entitlement..  I don't work, I don't get paid, and being a freelance photographer - I only get paid when pictures get published so even if I do work, I'm not guaranteed income.  Louise has said she's unlikely to go back to work for 12 months and is looking for her insurance to pay for someone to cover her work....  My main worry is not so much lack of my income in the short term, but that I may lose my regular clients who still need a supply of photos in the long term..  I need to get back to work but I'm having to be picky about what I choose to do..  not a comfortable position to be in...  Hopefully Joel will be discharged again tonight if the wound has healed properly..  fingers crossed.  I've got a commission to shoot a band on Sunday for News of the World, and I'm shooting Skunk Anansie tonight for the Express and Star...  I need to get out and work - if only for my sanity. I'm not really sure if I'll be able to concentrate, but it'll take my mind off things if nothing else.

 

I get to the hospital for about 10.45...  I'm hoping that the carpark will be a little emptier - but when I arrive I find that it's just as full as before..  Level 5 it is then..  My knees are killing me, so I park the car on the roof top again and hobble down the stairs like John Wayne.  I'm consciously thinking about Joel as I'm groaning as I'm going down the concrete stairwell..  My knees feel like someone is jamming a hot knife under the knee caps..  it's very painful.. then I think of Joel having stitches with no anaesthetic and not even wincing..  I'm a wuss with a low pain threshold..  very low.

 

When I arrive at Joel's bed, he's playing Angry Birds again..   I'd bought him a new case for his iPod during the "M&S" trip on Tuesday..  £25 for a piece of plastic that probably cost less than 7p to manufacture.  I'd promised him one when I bought his iPod, but I couldn't find one in time for when the iPod arrived, so I bought him a red case just for protection, and intended to buy an Angry Birds case as soon as...  Hope he doesn't go off it any time soon.  I wonder what it's recycle value is worth?

Joel is all smiles - he's seen the opthamologist who is very pleased with the progress of his recovery.  The haemorrhaging in his eyes is healing well and his field of vision is getting much better - the blind spots are getting smaller.  His 'squint' is not so obvious (though he still has the odd off day), so it seems the pressure is reducing nicely.

Colin brings Joel a sheet to order tomorrows meals..  I take a look at it and burst out laughing.  There seems to be a difficulty in aligning the original sheet on the glass, and the results are often hilarious..  today though, hilarious, and slightly disturbing.  I don't think I'd have much of an appetite after reading this menu....

At least it comes with vegetables instead of grapes.

 

After lunch, Hollie comes to take Joel for some physio at the Gym and sets up some skittles for him in a ten-pin fashion.  There's only 6 'skittles' (wooden toys shaped roughly like animals), and he's lined up on a crash mat ready to get a strike...  he misses.

He tries again..  and misses.  He's about 4 feet away, and misses again.  I notice his eye is turning in again, and he's having trouble kneeling up straight..  it's fair enough I suppose, he's on a crash mat - hardly the most stable surface to kneel on.

 

He's really struggling to get the balls to go straight..  they're going all over the gym.... but he persists.  My knees are killing me from having to run after the stray balls..  I suppose personally I've always been very competitive, but where my kids are concerned, I've always emphasised it's the taking part that counts...  (But winning is a bonus!)..  with my knees falling apart though, I'm willing him with all my strength to knock them all down with the next ball so we can move on to another exercise with less damage to my patella (4 weeks at the hospital and I'm getting used to the medical terminology now).

Success!  Next ball, several of the skittles suffer a knock down...  Joel is rocking now - his balance is great, his aim is getting better with every shot - both right hand AND left hand.

Next he gets to go on the scooters - his favourite part of his physio... He has a race with Louise and wins..  now we're rocking...

Physio has gone really well, and Joel said he'd like to go to the playground..  It's cold outside, and I'm not looking forward to it, but I grin and bear it..  wrap up warm, and we head down to the playground..  Joel has a walk around the pirate ship thing (climbing wall/rope walk/slide/activity centre combo..  there's probably a shorter name in the catalogue), and then we play a little of Andy's Slam Dunk..  basically, basketball with various tubes and buckets that lead to different amount of points..  We're having fun with it..  Joel is practicing his throwing and while trying an overhead throw, the ball hits the wall and flies straight back into his face.  Perhaps this isn't the safest sport after all..  even solo.

 

We move to the real basketball hoop over the other side of the playground and spend about 15 minutes shooting hoops..  Joel is struggling to get the ball high enough, and eventually he gets it high enough...  just not at the right angle.  He carries on, determined to score a basket..  but fails.  He did magnificent though, as far as I'm concerned... so I treat him to a fruit pastille ice lolly.  It's been a very good day today and Joel has been on top form...

Come tea time however, things start to go pear shaped...  I'm giving Joel a hug as I'm working tonight and need to go shortly..  he's lying in bed and I'm sat in front of him with my arms around him.  I'm already emotional and he turns to face his mom..  then I feel something wet on my hand..  Joel turns his head to the ceiling..  "Something just dripped on me daddy..."..  I instinctively look up too, in the same way that you can get a crowd of people to stare at the sky by just standing there yourself...).  Then suddenly it dawns on me, I look at the back of his head, and there's a glistening drop of CSF on his hair...  then a little squirt hits my hand again..  I almost wretch...

"Good god!" I shout.. and reel at the fact that I've just quite loudly declared that something is drastically wrong...  I hope Joel doesn't get frightened.  Louise rushes to Joel's nurse and tells her that his CSF is leaking again.  This is NOT what we wanted to happen.  Apart from dreading having a shunt or a drain inserted, I'm worried about any delay to his radiotherapy and chemotherapy, increasing the risk of the tumour growing again, or spreading.

The nurse comes over, looks at it and calls for the doctor who arrives quite quickly..  he draws the curtains and looks at the back of Joel's head.  It's leaking CSF quite badly again.  The surgeon, Mr. Solanki, is not in - and the doctor needs to see if Mr. Solanki wants a drain or a shunt, or to just stitch the wound again...  They put a pressure bandage on until they have more news..  I have to go..  It's too late for me to get someone else to cover my job for me and I can't afford to lose this client.  Joel isn't in pain...  but I'm still torn between staying or going...  I'm questioning myself..  telling me I shouldn't go..  then worrying myself about losing an important revenue source... If only I had more time I could try and get someone else to cover the gig for me, but I only have 20 minutes....  not enough time.

I decide Joel is in good hands, a safe place, and has his mom AND a doctor by his side..  so I reluctantly head to the Academy for the gig..

I get to the gig just in time for the main act..  I don't have a particularly good time of it..  I can't keep my mind on the job, as hard as I try....  I head home, feeling very guilty that I didn't stay..  but what could I have done if I'd have been there?    I know the answer is 'nothing', but it still plays on my mind.

 

 

 

 

The return of Nurse Ratched....

Thursday 3rd February, 2011

I arrive at the hospital..  Joel is doing ok, he's comfortable, and smiles when he see's me.  It's a good start to the day when he smiles.  I give kisses all round (well, to Joel and Louise - I don't think the nurses would like it, and as for the other patients...)

I grab the key for the kitchen cupboard and go to make a drink for me and Louise..  on the way to the kitchen, I see 'Nurse X' by one of the isolation rooms.  I smile and say good morning.  She ignores me, and turns her back to me and carries on writing.  Miserable toad.  We've been watching her with other patients and she has a terrible bedside manner..  I'm not sure she's cut out for working with children.  In fact, I'm not sure she's cut out for working in medicine.  Hair Salon maybe...

 

I make a cup of tea and dwell on the walk back to Marks and Spencers later..  I'd found my receipt for the cookies in a carrier bag in the kitchen cupboard yesterday (I've been storing plastic bags.... I think I've become my nan while in hospital).  I'd called them yesterday afternoon and spent about 15 minutes on hold waiting for an operator, and then asking for the manager of the food department, I was put through to what seemed like a shelf stacker.  They certainly didn't have the telephone manner I'd expect from a manager.

The conversation yesterday went something like:

Me: "Hello, I wonder if you could help me - I bought some lemon meringue cookies on Tuesday from your branch and....."

Them: "Hang on...  <muffled: no, I think they go over there somewhere, hang on..  no, it's a customer>... Hello?"

Me: "Hello, I bought some lemon meringue cook..."

Them: "<muffled: No, over there.. I dunno...> Hello - Sorry, can I help you?"

Me: "I bought some lemon meringue cookies on Tuesday, came to eat them yesterday to find out the best before date was yesterday as well, and the disp....."

Them: "Well that's ok isn't it?"

Me: "No - the display until date was 19/01/11!"

Them: "Well it's only the 2nd, what's wrong with that?"

Me: "It's the 2nd of February...  these have a display until date of 19th JANUARY!!"

Them: "JANUARY???  Blimey..  Well bring them back and we'll sort it out"

 

Apart from being ignored while he chatted to someone else in the background for the first part of the call, I didn't hold out much hope that anything would be done... so the thought of having to make another trip into town today just to return some stale cookies wasn't something I was looking forward too - especially considering the weather didn't look very nice, and it was VERY windy!  I also had better things to do with my time than have to trapse through town on an unnecessary trip.

Joel has done really well this morning, and has done some more homework exercises on the BBC Bitesize website.  He's doing really well on these - even beating the hardest levels...  He looks great in himself, and he's proving to be cheeky with his humour still..  he's very sarcastic at times, which is annoying, but cute and hilarious at the same time...  He's charming with it, not nasty.

I decide it's time..  I grab my scarf, my gloves, and my coat..  and the bag with the stale cookies, check the receipt, and head on into town for the showdown.  I'm miserable.  I hate being shortchanged on customer service, but this is Marks and Spencers we're talking about....  what could go wrong?

I return to the store and head to the food department hoping to find the manager.  I have no luck, but having walked around looking for a manager, I browsed the aisle where the cookies originally were.  The shelf was empty - they'd removed the whole stock of Lemon Meringue cookies...  perhaps he WAS listening after all then when I called last night.

I carried on walking around the department and eventually got fed up of looking for a manager - so I approached a middle aged lady unpacking chilled foods..  at least a middle aged lady might be a bit more helpful than a young lad new to the job, I thought.

"Excuse me", I asked, "Could you tell me where I can find the manager please?"

"Can I help?" she quizzed.. "I'm a supervisor".

Umm..  a supervisor of what, I thought..  you're stacking shelves..

"I'd really like to speak to the manager about some cookies I bought which are way past their Display Until date"...  she took them from me, looked at them and said "Well we have 3 day sock checks, it shouldn't get past 3 days days" as if in disbelief at my claim that they were still on display TWO WEEKS after their Display Until date.  She saw the date on the packet and said "Oh, but this looks like it's been missed for all 3 checks!".  No shit!

She took me to a till, asked me for my receipt, and asked if I wanted something else instead...  I said no, and she handed me the cost of the packet back, having crossed it off my receipt. "There you go love, I'll make sure the relevant people are told"...

 

That was it???  No "Sorry for your trouble", still no sign of a manager..  I have a feeling that it was the end of the matter completely..  I doubt a manager would even find out about it..  I don't mean to be sceptical or assume that they'd be covering each other's back there, but it smacked to me of trying to sweep it under the carpet..    I still can't believe I didn't even get an apology!

TWO WEEKS past their Display Until date.  Yuk.

 

I return back to the hospital with my One pound Seventy whatever it was and a right grump.  Not even an apology.  Disgusting.  TWO WEEKS!!!

I see Joel, and he smiles at my return.  It warms my heart..  then I think of the time M&S have just wasted and I'm eating away inside.

While I've been away, Jill came to take Joel to do some baking which he missed yesterday (thanks to Nurse X not changing his dressing!!).  He's been baking gingerbread rabbits!  I can't wait to see them - the cookies he made last time were delicious, and even met with Eve's Royal Seal of Approval!

Joel has to wait for Jill to finish the 'hot hot hot' bit and for them to cool down before we can eat them, so in the mean time, I  take Joel into the playroom (actually, he specifically asked for ME to take him to the playroom - ME!  Not mommy, but ME!!  Perhaps his condition is much worse than I'd thought...  he NEVER wants me to do anything with him when he's got the option of mommy being there..  anyway, we head to the playroom and we set up those little 'abacus' type things with the bright coloured 'things'.  I have no idea what they're called..  they're pretty, but can't imagine they'd be much use for shopkeeping...  makes you question why they're all over the tills at Mothercare... stick to barcodes and scanners I reckon.

We have some great fun..  Joel is playful and the sun shines..

 

After a short while, Joel decides he wants to go back to bed...  and that I can tidy the play room up..  thanks matey.  I duly oblige.  Normally I'd insist he tidys things up after he's been playing with them, but I'm not going to be that cruel..  Not today anyway.  :)

Joel is keeping his spirits up... and from nowhere comes "I wonder where my gingerbread rabbits are?".  Within 30 seconds, and as if by magic, Jill appears carrying a small bag.  We still don't know if Joel had seen her hovering around the ward, but the timing was impeccable..  she approaches Joel and says "I nearly forgot about these Joel".  They look great..  Louise tells me that when Joel was sorting the ingredients, he had to count the chocolate chips that he was using for the face.  Being the cheeky little scamp that he is, he asked for more as he wanted to do a neck tie, a scarf, and a big smile.  Clever boy.  Mommy notices two chocolate drops stuck together and says "Oh, look at these..  you could use these for a tail!".  Joel gingerly picks them up, studies them, lifts his head to the sky and like a Roman emperor being fed grapes, offers the large mutant chocolate drop to his open mouth before declaring "Or, I could just eat it..."  as he chomps away.

Before long, there are only two cookies left..  so I decide I'd better get a shot now while I still can...

One rabbit has a huge grin, nose, eyes, and a belly button.  I'm not quite sure what the other one has.  I think it's either myxomatosis or a David Beckham style tattoo...  either way, they taste delicious.  So, even if Joel doesn't make it as a vet, at least  he has a possible future with gingerbread rabbits.

 

Joel is booked in to see Dr. Barry, the optometrist, again first thing in the morning..  8.45.  I'll still be at school dropping Eve off at that time, so I tell Louise I think I may see if Atif and some of the regulars are going to Starbucks for coffee...  makes no sense in me rushing to Birmingham only to get to an empty bed and sit there for an hour...  Besides which, it'll give me chance to update everyone on Joel's progress rather than one by one in the school yard.  Someone asked me recently, "You must get fed up with everyone coming up to you asking how Joel is?  How is he?".  I replied that I don't..  it's natural for people to want to ask how he is, and I really don't mind people asking about him - it shows they care about him and of course how Louise and I are coping...  Then one by one, five other people ask how Joel is..  and I repeat the same story..  Perhaps I should get a spokesperson..  I wonder if Max Clifford would do a discount?   Perhaps I should just update the blog a bit more frequently.

Anyway - please don't be afraid to ask how he is - I really don't mind people asking..  I just thought it funny, that's all...

I get home quite late..  I'm missing Joel all the way home.  Eve is fast asleep in my bed again - starfish mode.  I cover her back up with the quilt and the blanket, she wakes up, smiles at me and puts her arm around me for a hug.  I rub her back for a while and she carries on snoring.  She's lying right next to me, and I'm missing her.  Funny how you can still miss someone when they're right next to you.  I know she's missing us too..  at least though, she isn't crying as much now..  but that saddens me..  she's growing up too fast and unfortunately I worry she's going to get too independent too fast..  I just hope she knows how much we really do care about her....

 

 

Tantrums and Tiaras...

Wednesday, 2nd Feb 2011

I arrive at the hospital at about 9.15 - quite early for me...  I'm a little grumpy as I  hardly slept last night - after finding it difficult to get back to sleep past 3am and then when I did, being woken at 6am every ten minutes by Eve asking "What time is it?"  "What time is it now?"  "What about now?".  I swear, at one point, I'm sure I heard her say "Hey Apple!".  Perhaps that's just my lack of sleep giving me weird hallucinations.

The staff carpark (where parents with parking permits have to park) is showing as 'Full'.  The swipe card lets me in anyway..  and yes, I struggle to find a space on level 1.  And level 2..  3, 4, and 5.  As I go round and round up the ramps, I'm having to dodge inconsiderately parked cars on the ramps...  where they've parked in the pedestrian walkways.  This carpark hasn't had a working lift for over 8 years according to one member of staff, yet they expect parents with kids in wheelchairs to use this one instead of the carpark at the front of the hospital which has a ramp into the building.

I reach the top of the carpark, level 5 & 6.  There are spaces..  but the ledge barrier goes up to my hip.  It's high enough to prevent me driving off the roof, but as I reverse the car up against the wall, then go to the boot to get my bag out, I open it and instinctively lean back to avoid the boot swinging up and hitting me in the jaw.  WHOAA!!!!!!!!!!!

I realise how far I'm leaning back OVER the barrier, turn around and I seriously must have turned green.  The photo above is the view from behind my car.  Scary.  Still, at least I'm close to an A&E department, and from that height, should I fall, I might resemble a small child and be accepted for treatment.

 

I arrive on ward just after the doctors have done their ward round.  Mr. Solanki has asked Joel's nurse to change his dressing and put on a new bandage.  According to Joel's chart, he's due his antibiotic via the syringe driver at 2pm.  Nothing to worry about.

I make a drink for me and Louise, then she starts tucking into the lemon meringue cookies I bought yesterday.  She has a look on her face - sort of Gillian McKeith vs. Kim Woodburn.  "These are horrible..  they're not suppose to taste like this are they?".  I ask her what's wrong with them and she say's they taste stale - but soggy rather than 'crispy' stale..  She looks at the best before date...  Today.

"They should be ok, they're in date..  you always tell me stuff is ok even the day after!" (she tells me this repeatedly, knowing full well I can't eat anything by 5pm on the 'best before date' for fear of food poisoning, mould, or fly lavae instantly appearing.)

Then we notice the packet has a 'Display Until' date, which reads : Display Until 19/01/11.

Yuk.  How can a shop with a reputation for quality such as M&S have such lax stock control?  I'm definitely going to complain about that..  1 day past the 'Display Until' date is bad enough (but I'd accept it), but we're talking 13 days - Thirteen days of somebody not being bothered to do their job and do stock rotation.

I wonder what I've done with my receipt..  It's not in my wallet.  Typical - only bought them yesterday, and I think I've thrown the receipt away..  damn it.

 

It's nearly lunchtime - Joel is still in his old dressing from when he was admitted on Monday.  It's slipped a bit so it's not actually covering the wound, but just off to the side of it.  Why hasn't the nurse changed it and put a bandage on?  Rebecca the physiotherapist visits Joel and needs to do some physio with him, but as he's waiting for his dressing to be changed, she asks if we can come down to the gym at about 1.15 - by which time it should be done, and we can get back in time for his antibiotic delivery at 2pm.

Joel has his lunch.  Still no sign of the nurse for Joel. We've hardly seen her all morning, yet she's only got 4 patients to look after.  She must be very busy, so we don't argue or chase it up.

1.10pm and we need to go to physio..  Joel still has the same wonky dressing on with no bandage. There's still no sign of his nurse.

While we wait for Rebecca to see us into the gym, Joel is taking HUNDREDS of photos on his iPod..  he's laughing, and being silly with us..  it's great... I try to take a shot and Joel refuses to co-operate..  so I trick him into laughing while I'm ready to take a snapshot..   It almost works..  he moves at the last minute and I get a lovely sharp shot of the bin behind him...  but the laughter makes it a 'keeper' for me.

 

 

Rebecca runs through a couple of preliminary checks with Joel on the big huge physio bed.  She tests his tendon reactions in his ankle, heel, and knees...  and as he lays back on the bed and gets up to put his shoes back on to start his exercises, we notice the paper on the pillow is wet.  Joel is leaking CSF again.  Rebecca cancels the physio session and we head back up to the ward.  I'm gutted, and worried about the leak.  I really don't want Joel to have a shunt...  and I'm angry that the nurse hasn't followed the doctors instructions yet, some four hours later.

2pm comes...  and goes.  No antibiotics.  I go and make a cup of tea.  I see Joel's nurse on the way..  she's blow drying a patient's hair while the patient's parent/guardian stands by and watches.  Lovely.  Welcome to your local NHS Babysitting Service - Now with added Hairdressing.

Why is Joel's nurse drying someone's hair instead of tending to medical needs of her patients?  Why hasn't she changed Joel's dressing and bandage yet?  She's only got 4 patients to look after and so far she's done bugger all for Joel.  Every time she tries to do his obs, Joel gets all frustrated - she has NO bedside manner or rapport with him.  Instead of being nice and trying to calm him down or have fun with him, she chastises him, then turns it on us - patronising us by saying "I can't do his obs when he's behaving like this!" - as if it's OUR fault..  she may as well just say "Will you control your child???".  Well no - he's been fine with every nurse he's had so far, because they've all engaged with him and spoken to him like he's a nervous 6 year old boy in hospital.  She's treating him like a snotty teenager hanging around the corner shop.

By tea time, Joel wants to go to the restaurant again.  It's nice being able to go as a family...  though Joel has already eaten his tea at his bed, it gives Louise and I a chance to go and sit at a table with a hot meal, and Joel can have a packet of fruit pastilles.  It's 6.30pm.  He's not had his antibiotics yet which were due at 2pm.  Neither has he had his dressing changed and a fresh bandage.  We wait before going to the restaurant as we don't want to go until Joel has had his antibiotics..   The nurse comes with the machine and sets Joel up for his antibiotics.  Great - over 4 hours late, and just as we want to go to the restaurant.  30 minutes later his drip has finished and we can go to the restaurant.  We get everything ready, tidy up Steve & Backshall (Joel's nickname for his Hickman line) and head down to the restaurant.  We get there at 7.48pm...  to find it shuts at 7.45pm.

Fantastic.

 

While we have a drawer full of sweets to quell the inevitable tantrum due to the lack of fruit pastilles from the restaurant, it still means WE go hungry...  I decide to have a ready meal from the fridge..  I double check the date after the cookie episode, and go for the Spicy Meatballs with spaghetti.  I follow the microwave instructions to the letter, and the meatballs look horrible.  they're bright pink inside, yet scorching.  Then I see a bit that doesn't look meaty, and reminds me that Joel is in the neurosurgical ward.  I decide not to risk it, and leave that bit on the side of the plate.  The rest of the meatballs don't fare much better to be honest.  I have a bad feeling about this.

 

About 8pm after the shift change, Joel's new nurse sorts out the dressing and bandage that was requested about 11 hours ago by Dr. Solanki.  With 4 patients to look after during the day, the previous nurse must have been rushed off her poor little feet to not be able to sort that out....  or to be able to get Joel's blood pressure due to his 'unacceptable behaviour'.

Funnily enough, the new nurse manages to get his blood pressure first time..  the difference between her and the previous nurse?  A nice attitude, friendly, and spoke to him like a child having fun...  instead of someone who found their job an unrewarding chore.

I'll call the 'nasty' nurse "Nurse X" in future....

 

Ruby Tuesday...

Tuesday.  Wake up feeling terrible.  One of those "can't be bothered" moods.  After yesterday, I'm feeling physically and emotionally exhausted..  I struggle to get myself out of bed, showered, dressed and ready to take Eve to school.  I'm all over the place.  I drop Eve off at school and head to the hospital.

Louise hasn't called, so I should think everything is ok with Joel, but I can't be positive.  Perhaps her phone battery has died?  Perhaps something has happened to Joel and she can't bring herself to call...  Lots of thoughts go through my head, most of them induce fear in me.

I get to the hospital and the only parking space I can find is on the very top level..  my knees hurt, so I'm not looking forward to walking down the 5 flights of steps.  I still can't believe the hospital give parents parking access to a multi-storey with a decommissioned lift and no wheelchair access.

I get half way down the staircase and my knee gives way..  I curse and it echos in the stairwell.  For some reason I think about the fact that a ducks quack doesn't echo.  I have no idea if that's true. I should bring one of the ducks in tomorrow to test the theory..  but regardless, my swearing does echo - that IS true.

 

I get to the ward and I'm dreading arriving at the bay, unsure of what I'm going to find..  I get some strange looks from parents, and a few from nursing staff, a mixture of angry and sympathetic..  As I arrive at Bay 9, Louise is sat there, looking dishevelled.  Joel is sat upright, and looks tired as well.  He didn't sleep all night, and wailed loudly, constantly.  The pressure bandage around his head from the night before was very tight, as you'd expect it to be, but we had no idea that his ears had been folded over during the bandaging, and not straightened out.  It must have been really uncomfortable, and when the bandage was changed early this morning, the tips of his ears were bright red and crease marks have been left there where they were folded over.  There was also indentation across his forehead when the bandage had marked his head..  no wonder he screamed all night long.

 

The change of bandage around Joel's head was a welcome one..  he seemed much more relaxed now, but it wouldn't last long.  He's currently nil by mouth, as he's booked for a CT Scan this morning and may need an operation this afternoon.  They aren't sure why the CSF leak was so bad - they say it can leak a small amount, which is natural after these operations, but the severity of this leak might mean he needs a 'shunt' - either a Cerebral shunt or a Lumbar-peritoneal shunt

The consultant really doesn't want to do this, as it increases the risk of infection and more seriously, increases the chances of brain damage..  although incredibly slim - it's still a chance he doesn't want to take.

 

By late morning, Joel is getting low blood sugar, and getting stroppy with it.  We have a kicking fit, a punching fit, and a screaming fit.  We give the silent treatment.. it's hard, but we sit there and take it..  We don't raise our voices, but just tell him that it's not nice.

We need a few things from the shops, so I nip into the city centre and come back with some essentials..  plus a few not so essentials..  I bought some Marks & Spencers cookies in the 2 for £2.50 offer - Lemon Meringue and Apple Crumble..  I bought some full on flavour Ham & Mustard crisps, and some Chicken with Honey and Mustard Pasta Salad.  Delish...  Even better when you mix both together..

I post a letter for Louise, and head back to the hospital after a breath of relatively fresh air (as fresh as it can get when you're surrounded by cars, pigeons, seagulls, and dog faeces on the pavement).

Eventually, Joel is called for a CT scan and we head down to Radiology again.  Joel seems to be in pain as he's shuffled into position on the scanner bed... but it looks like it's just hunger getting to him. He hasn't had a drink since before he was admitted to hospital last night, so you can imagine how irritated he feels..  Can you picture how you feel when you're really thirsty and crave a cool refreshing drink but have no access?  Doesn't happen to me very often, but when it does, I'm incredibly agitated and stressed.  I felt myself getting thirsty earlier, but refrained from having a drink out of respect for Joel - I didn't want to drink in front of him, as that would not only be unfair but would only exacerbate the situation. I also felt it unfair to be able to refresh myself, so sat there getting more irritated myself..     A stupid theory in hindsight, but I really felt selfish at being able to  drink when he'd not had a drink for over 16 hours.  His lips were pale and crisp - with texture of roast chicken skin..  I imagined a big smile would crack the skin of his lower lip - it looked painfully dehydrated.

CT Scan over, we return to the ward.  Joel wants to go to the restaurant..  but while the nurse says it's shouldn't be a problem for us to go, we need to wait for the doctor to check the scan results to see if he needs the operation - otherwise he'll remain nil by mouth...

 

Mr Solanki comes up to the ward and asks if we'd like to see the scans..  I get a bit anxious as it was almost like "Would you care to come and take a seat?"..  but we go to the nurses station.  Joel is wheeled behind the nurses desk and sits there keeping an eye on the ward.  Given the chance, he'd pick the phone up and deal with any incoming calls..  we're focused on the monitor screen in front of us.  Mr Solanki shows us the CT scan from today, side by side with a scan from last Friday, 28th.  The difference is amazing - everything seems to be getting back to some kind of normality..  the ventricles closing up nicely..  though there are still some pockets of fluid, they're clearly reduced from the previous scan.  But this doesn't answer the question we all want to know - why is it the CSF leaking, and is it likely to leak again?

Because the answer is unknown, they're going to keep him in until Friday at the earliest.  Strangely, we both feel better at knowing this...  we all feel safe.  However, I realise that yesterday we'd visited the Birmingham City shop to buy Joel a shirt for him to get signed tomorrow when he's a mascot..  he's not going to be able to go to that..  we're gutted..   I write an email to the organisers of the trust who had arranged for Joel's Mascot package and explain that we can't make it, and wonder if it can be rescheduled.  I don't hold out much hope - it's a £450 package, so I think it may be a blown chance.  I'm sad for Joel.  Still, at least he's got a new football, and a BCFC hat.  And an extra large adult Away shirt (which he was going to take to be signed)..  Just a pity he supports Liverpool.

 

Talking of Liverpool - I'm laughing as I write this...  My uncle John who comes to visit frequently came a few days ago with a present for Joel... Now a bit of background history - as a child, my uncle John would only have to touch any of my toys to pick up and look at - and that was it - the toy was doomed..  they would inevitably break a few hours afterward..  without fail, every toy or device of mine that he touched would break shortly after.  He was a jinx.  I love him dearly, but he's a jinx.

John bought Joel a Liverpool shirt with Torres on it..  Joel has always raved about Torres, and Liverpool...  we didn't realise he liked football at all, but he reeled off all the Liverpool players, and told us he also likes Steven Gerrard...  Well...  What happens within 48 hours of John buying the shirt?  Torres transfers to Chelsea for £50m.  Sorry Joel, but John's curse continues....  I wonder if he still has the receipt?

Joel goes to sleep easy tonight..  hardly surprising given he didn't sleep last night.  I get to sleep quite easy too...  but wake at 3am and worry sick in case it's some kind of synchronicity....  is Joel ok?  That makes it more difficult for me to get back to sleep.

I don't like Mondays...

Monday sees us at the Birmingham Children's Hospital again for a meeting with Dr. Martin English (Joel's oncologist) and Dr. Dan Ford (Radiologist) to discuss Joel's treatment regime.

Dr. Ford is fantastic with Joel - very down to earth, charming, funny, and really puts Joel at ease..  I guess it's because he deals with so many children, but you forget that and think that you're the only child he's ever dealt with...

Dr. English is amazing too - explains things very well, so I'm not expecting what hits us in this meeting.

 

It's explained that Joel will need a course of radiotherapy every day for 6 weeks (8 cycles!) - and at least once a week, a dose of chemo as well.  That means trips to the Queen Elizabeth hospital AND Birmingham Children's Hospital for quite some time..  The thought of the parking bill frightens me.  Thankfully, they say there is a free car park next to the radiology clinic.  Relief!

Then Dr. English tells us about the chemo..  he reels off the names of the chemicals and why they use those particular formula as opposed to others..  he's very thorough.  Then he comes to the side effects.

I expected hair loss.  No big deal..  it'll grow back..  maybe curly next time..  but at least Joel can wear a hat.  I knew about stunted growth, but that's treatable with growth hormone...  although Dr. English said that there can be a 1-2 inch shortness in the torso, while the arms and legs grow at their normal rate..  but that's hardly noticeable.  I have trouble finding clothes to fit me anyway, so it can't make it any worse for Joel when he's older.

Then the bombshell I did not expect.

 

It's likely that he'll be infertile due to the chemo.

 

 

I'd never thought about it.  Louise said she expected it - I'd not seen it in anything I'd read.  She said it's usually in very small print.  Dr. English said that given Joel's age, it's too early to take a sperm sample now for storage to be used later...  but possibly in 20 years with the progress of stem cell research, they may be able to generate some from tissue - but at the moment, it's unlikely.  For now, he can't have children.

That came as a kick in the teeth.  He might not want children..  some people don't do they?  But my god, what if he wants them?  I've talked to him so many times about when he grows up and has a family of his own, how much he'll love them - and then understand how much we love him...  as a child, you never understand how much your parents really love you until you have kids of your own.  NOTHING else matters in the world except them.  He'll no doubt find a good wife, but will he ever feel that love for a child, the love that hurts so much because you can't explain what it means to them?

When we say to Eve, "Do you know how much we love you?" - she'll say "Infinity".  When we ask how much she loves us, she'll reply "infinity plus 1".  You can tell kids that they could never love you more than you love them..  but they won't understand..  not until they have their own.

I can't bear to think Joel might never have that - and not to know that despite how much I've shouted at him, I love him with all my heart, more than he'll ever know.

Then I realise Eve will never be an aunty..  not by blood at least.  So many consequences..  but what is the alternative?  To lose Joel?  Not an option.  Dr. Ford asks which of us would like to sign the consent form..  I motion to Louise that she can..  neither of us object.. why would we?  We want them to do everything they can to get Joel better..

 

After the meeting, I think I'm in a state of shock.  I'm pretty numb.. don't really have any emotion..  I feel sad, but I haven't cried.  Louise cried in the meeting.  It hasn't hit me yet.  It will.

 

It's lunchtime, so we decide to eat at the restaurant at the hospital.  The food is lovely..  Joel has a 'make your own salad' from the deli counter..  Louise has a baked potato..  I go for the steak and onion pie with chips and lots of brown sauce (has to be brown with that...).

We sit and eat, I'm sat opposite Joel.  I look at him and then it all hits me.  I make my excuse to go to the toilet where I cry in private.  Not the most comforting place if I'm honest, but better than a restaurant.  I calm myself and return to the table.  We have a dessert, and again, I break down..  Louise holds my hand and comforts me.  Joel just looks at me and smiles.  What must he be thinking??  Does he understand what we've told him?

 

We go home, and I fall asleep on the sofa..  it's only for 20 minutes before the phone rings, and it's nearly time for me to go and pick Eve up from school.  On the phone, it's Mrs. Barnes, Joel's form teacher.  She'd like to come and visit him "if that's ok"..  it is - he's happy, he's doing ok, all things considered, so she says she'll make her way here straight from school.

I silently motion to Louise "Is she going to bring Eve home with her???" in a half joking manner..

When we get home, it's not long before Mrs. Barnes arrives.  Joel is playing Angry Birds (as if you wouldn't guess by now), and seems oblivious to the fact his teacher is here..  she's brought him some work that he's missed out on (we encouraged it - not just because we don't want him falling behind, but also because it will cure his boredom..  he's always wanting to be challenged - and it would do him good to get off his iPod for a while!).

She also brings a few presents for him, and a card signed by everyone in his class.  She also brings both Joel and Eve some chocolate.  I try to steal a bit of Eve's chocolate, and she takes it upstairs to hide.  I'll find it.  At least I know which half of the house it's in.

When Mrs. Barnes leaves, I need to go have a rest before I leave for work.  I'm shooting Roxy Music at the LG Arena, and after the problems on Saturday, this will be my first job since Joel's diagnosis.  I'm looking forward to getting back to normality, or as close as it can be..  but I'm also not looking forward to it.  I can't imagine I'll be as chipper with the people there as I am normally.  Truth be told, I think I've turned into a miserable sod in the last week.  Moreso than normal I should add.

I'm at the concert, the second support act is on, and I get a voicemail..  Why my phone never rings when someone is calling I don't know, but I got the voicemail.  I go out into the concourse area so I can hear it, and it's Louise, in a panic, begging me to call her urgently..  She went to move Joel and his bandage was soaking wet..  he's leaking CSF from the wound where the tumour was removed.  I panic..  I rush back to the pit and grab my cameras..  hastily telling Rob, the pit supervisor, that I've got to go...  I call Louise back and she says she hasn't got enough petrol to get to A&E..  She's waiting for her mom to come and look after Eve, so I tell her not to panic, that I'm on my way.  She sounds really flustered.  I get back to the cloakroom, pack my gear and leave.  I hand my pass to the door staff and tell them that I'll try and arrange someone to come and cover the job for me.  Thankfully, they know me well, and I manage to get someone reliable to go and get some shots so the paper won't go without.  I just hope they run a pic so I can afford to pay the guy for covering it for me.

When I get home, I don't bother getting my camera gear out of the car - I bung Joel's wheelchair into the boot, grab the cases that remain unpacked from Friday, and Louise puts Joel into the childseat.  Eve is on the doorstep in tears...  I think she's now realised the severity of Joel's condition.  It's heartbreaking to see her crying for Joel, worried sick about him.

We head to Birmingham Children's Hospital and I follow the signs for the A&E department.  It's a different entrance than the main one, but as I leave Lancaster Circus and follow the directions for the A&E, there are no more signs..  where the hell is the A&E entrance?? I'm then stuck in the one way system around Colmore Row..  I follow a car through the 'no access' area to come back down by the law courts and eventually back to the main entrance area where you can see the A&E department..  but it's no entry to the A&E.. I park on the street to drop Louise and Joel off, in a 'motorcycle only' marked bay..  it's the only space around - all the other on street bays are full, and while I've got a swipe card for the multi storey car park, it's the the other end of this long street, as far from the A&E department as you can get.

Louise heads off with Joel to the A&E, I leave the headlights on the car and run in to the reception of the hospital to see if I can park in the main car park for a bit until I know if they're putting Joel back on the ward...  They say "Well, you can park for 10 minutes on there..."  Great.  Another guy says "Tell him he'll have to use the multi storey"..  Thanks a lot, jobsworths.  There's loads of spaces free on the main car park, but they won't let me park there..  The guy I'm talking to says "Well, it's free on the street after 6 anyway...  "   I thank him, and run back to the car as a traffic warden see's me approaching and asks if it's my car...  "Yes, it is"..  I say.  He insists "You can't park there!" and starts to get his ticket machine out... I tell him that I've just dropped my boy off for the A&E and was trying to find out where to I can park, and he says "Ok, that's fine"..  I get back in the car and drive up the street.. there are NO on street parking spaces available..  so I head to the multi storey..

Fortunatley (relatively), there are spaces on level one..  so I only have to walk two flights of stairs with an overnight case and a holdall..   for ages.  Two lifts, and about 3/4 mile of corridors.  I get to the A&E department and I can't see Louise and Joel anywhere.

I wait at reception and then I see through a window, one of the doctors I'd seen on Ward 10..  I ask the receptionist if that's Joel Sheldon, she confirms it..  looks at my bags and asks if I'd like to go in the room..  As I enter, I hear the doctor say that Joel is going to have to be admitted for a few days, and a scan tomorrow.

He then takes us to the Resuscitation Room..  I immediately fear the worst, but he explains that Joel will need a stitch to close the wound. He removes Joel's bandage and gauze which has been on for about 30 minutes, and it's soaking wet.  He sniffs it, and tells Louise that it does smell like CSF.

I actually feel my legs turn to jelly at that point.. the bandage is soaking wet - and that's the SECOND one tonight after Louise initially became alarmed..  how much CSF was he leaking?  What is the safe level?

 

The doctor tells us that he'll have to stitch it..  after a bit of prodding, he confirms that it's coming from a channel near the top of the wound.  He wants to use a freezing spray rather than a strong sedative for Joel..  but then they can't find any of this magic spray..  apparently only one bottle exists in the A&E department, so he says that they'll have to do it without any anaesthetic..  two stitches, no anaesthetic, where he's just had major brain surgery.

Joel is very good...  very patient, very calm..  calmer than me I think.  The doctor gives him a 10ml syringe and asks him to try and blow into it..  as if he's blowing a balloon.  I wonder if this is some kind of avoidance technique to reduce pain - but no, it's to force pressure in the head to see where the CSF is leaking from.  This grosses me out completely.  Joel becomes agitated, but as the doctor is threading the needle through his scalp, he hardly winces.

Then the doctor applies a pressure bandage, and wraps surgical bandages around Joel's head - tightly..   Very tightly.  Then another, then another.  There's four or five bandages in total (possibly even six, I lost count) around Joel's head.  His ears are covered, and one eye is being forced closed because of the bandages.  They're taped very strongly to secure them, and Joel is complaining that it hurts.  It needs to.  Pressure needs to be applied to the back of his head where the stitches are , but Joel is in agony.  He didn't cry this bad when he was being sutured without the anaesthetic.  About 30 minutes later, we're back on Ward 10..   Joel is still crying out...  while drifting in and out of sleep...

When I eventually leave the ward at about 11.15 - I still hear Joel screaming in agony outside the ward.  I pity the other people in the ward at having to spend the night with Joel crying..  then I think to myself, they've got it easy.  We've got years of this to come.

 

Easy like Sunday morning...

On Sunday morning, Joel was fine..  I had to pick Eve up from her friends house before coming back to cook Sunday lunch, but time was against me so we decided that we'd have a snack for lunch, and then a meal for tea..

Louise decided to take Joel down the road to her moms in his Ferrari Red Wheelchair...  I watched from the bedroom window as they left, and cried.  As Joel looked up at me and waved, his face was beaming.  He seems so happy - oblivious to the gravity of the situation he's in..

 

When I arrived at Eve's friends house, her dad said "Did you get the toilet roll?".  Dare I forget the toilet roll.  I'd tried to FaceTime Eve before I'd set out, but as I found out, her iPod had run out of juice..  lord knows how long she must have been playing with it...  but she'd had a great time making jewellery, playing the piano, playing pool...  I think she'd like to live there...

When we got home, Joel and Louise were in the living room.  A blanket spread out on the floor, and Joel was sat upright on the blanket with crackers & cheese..  I half expected a bottle of Chianti next to him as well, but thankfully not..  He'd insisted he wanted a picnic for his lunch, so a picnic he did have..  and enjoy it he did.

He didn't have an appetite for the evening meal - I wolfed mine down..   a little too much too fast.  I'd made some apricot, orange and sweetcorn stuffing - Even Eve had some of that.  I had too much and sat on the sofa unable to move for a few hours after.  Joel had a bath, carefully, as not to get Steve Backshall wet (the name he chose for his Hickman Line - which he thought was a great idea at the time, but now seems a little shy when people ask what he's called it..  That's the Alan Woolford effect for you!)

When the kids had gone to bed, Louise and I were stood in the kitchen.  She poured her soul out to me and I felt helpless.  What could I do?  She said that the seed was there from the start, that nothing could have prevented this..  Joel just had a timebomb from the moment he was born..  waiting to go off.  She's right, but what consolation is it?  Again, we find ourselves studying the last 12 months, picking out little things that could have been a sign..  but as Joel was 5 - they were also the signs of a typical 5 year old boy.  Was there something we missed?  Could we have had this diagnosed sooner?  I doubt it, so does Louise - but you still kick yourself for not thinking about it sooner.

The reality is of course, even if it HAD been detected sooner - it still wouldn't change the outcome..  he'd still have a brain tumour that needed removing..  he'd still need chemo and radiotherapy.  There was NOTHING we could do to prevent it, and if we HAD been concerned sooner, the symptoms may have been passed off as so many other things..  we all had flu over Christmas - so that would explain his headaches..  there were stomach bugs going around school - which could have accounted for the vomiting, and as for losing his balance?  Well - what 5 year old DOESN'T lose his balance?
The fact that his P.E. teacher, ballet tutor, and dance class teachers never noticed anything untoward gives us a sense of relief that maybe we did find it as soon as we could.  It's like a big jigsaw puzzle that you only see the big picture when you fit all the little pieces into place.  We couldn't have spotted it sooner than we did.

But we're still riddled with guilt.  I for one feel guilty for all the times I'd shouted at Joel for messing around..  climbing stairs and bouncing off the walls, then crawling on his hands and knees..  I thought he was being ridiculously silly, yet he was probably panicking and wondering what the hell was going wrong with him that he couldn't climb the stairs properly...  and walking along the school path - he'd walk all over it... never in a straight line...  sometimes stumbling off the path, and I'd have a go at him for being unruly...  Yet not ONCE did he turn round and say "Dad, I can't help it... I'm TRYING my hardest..".

I couldn't stop worrying about how Joel would react to losing his hair from the chemo..  it's not that he has nice hair..  he does have lovely long eyelashes though..  they're so long, and I've promised myself that when he starts losing his hair, he won't be alone..  I'm going to have mine shaved off too..  I'll probably look for sponsorship when it happens, so don't stop reading the blog just yet!

I'm not looking forward to it myself, but I don't want Joel to feel different.  At least I can take solace in the fact that he's at a decent school where it's unlikely that kids will pick on him for having no hair..  that said, he's unlikely to be back at school for some time.

We did a lot of crying last night...  but worse was to come.

 

We gotta get out of this place..

Saturday morning.  Usually we'd be getting the kids ready to go to Walsall College where they enjoy a dance & theatre class run by Carol Harvey-Barnes.  While they'd have a couple of hours there, Louise and I would have a walk around the town, usually ending up in Starbucks before going to pick them back up at 11.30..  then we'd sometimes head over to Telford for a walk around the shops there - and to see the clock with the bubble-blowing frog.

Today, we stayed in.  When Joel had gone to bed last night, I'd asked him to do me a favour for the next few weeks... that he doesn't try to go up or down stairs without mommy or daddy..

For the last couple of years, he's been getting up at around 5am and making his own way down the stairs to play on the PS3 or Wii..  but now, with his balance all over the place, that worried us.  He promised us he wouldn't..  I told him if he wanted to go up or down stairs, he should ask us to help him, as we'd need to be underneath him as he goes up or down..  I think he understood why and realised it's for his own safety.  He stayed upstairs this morning until Louise came down.  Last night, he slept in our bed - on my side.  I slept on the sofa.  Before I went to sleep, I looked around his room - his toys and his desk...  his posters.  I felt like I was grieving the loss of a child. In a way, I am.

I woke up late this morning, comparatively..  not long after, Joel's granddad Percy came to visit. I made some tea and while in the kitchen, I heard him asking Louise about some medication he was on.  I think Louise was losing her patience a bit..  she's given up work for the time being.  There's another knock at the door and this time it's Louise's brother, David.  He didn't visit while Joel was in hospital - he couldn't.  He couldn't face Joel in the hospital for fear of breaking down.  I understand how he felt, so he made sure that he would visit Joel as soon as he came home.  David (and his wife Carol) has been a godsend over the last two weeks, picking Eve up from school for us and giving Eve and his nan a lift to the hospital when possible. It was good to see him, and gave me chance to thank him for helping us out.  He graciously said it was nothing and that we wouldn't need to ask.

 

I'd agreed to let Eve sleep over at her friends house for the night..  she'd been looking forward to a sleep over for ages..  and her friends parents kindly said it was no problem.  We thought it would be from Friday night to Sunday lunchtime, but with Joel coming home Friday night, Eve wanted to stay at home on Friday to greet him..  That was sweet.

I drove Eve to her friends house on the afternoon, and Eve is quiet in the back of the car again.  Every set of lights where I stop, I ask if she's ok..  she's staring out of the window and when she makes eye contact with me in the mirror, I see she's welling up.  "What's the matter sweetheart?" I ask her.  
She wants to go home.  She's missing Joel, and missing her mom.  I ask myself if I should turn around and go home, or pull over and have a chat..  in the end, I carry on..  telling her how much fun she'll have, and how her friend is excited at the thought of them having a sleepover.  When we arrive at the house and park on the driveway, I switch off the engine, undo my seatbelt and turn around to talk face to face with Eve.

"Are you ok?  Do you still want to go home?"

She looks at me with tears in her eyes and nods..  I try to comfort her with words as best I can..  "You'll have a great time Eve..  and I'm only a phone call away if you want me to pick you up!".  She smiles, gets her bags, and we get out of the car..  She stares in awe at the house.  It's a lovely house.. very art-deco to look at from the outside.. almost like an old cinema, but very funky and modern inside.  I'm offered a tea which I accept and take a seat.  Eve is off already, running around the house with her school friend.  She'll be fine..  I sit and chat for a while, as time flies.  Louise calls..  I have a shopping list AND I'm supposed to be working tonight.  "Don't forget the toilet roll!".

I'm sure we've got some, but it's a reminder that I need to hurry anyway if I'm to make the LG Arena in time.

I stop at Sainsbury's on the way home..  get all the items on the list, including toilet roll.  Normally, I'm a stickler for getting the best bargain..  "12 rolls for £2.67...that's 22p per roll..  ooh,  9 rolls plus 3 free for only £2.49"...  but tonight, I just pick up a packet of 4 and don't even think about comparing prices.  Worrying about the value for money of toilet roll seems pointless these days.

I get home, unpack the shopping and get changed for work..  Joel is sat on the sofa playing Angry Birds....  he's managed to get to level 18 already.  I'm still on level 5.  Before I leave, I ask for a kiss and tell him I love him.  He replies in a warbled voice "I lo-ove yo-ou to-oo-oo".  I don't know why his voice is so childlike now..  I hope it's not permanent...  it's slow and cumbersome, and painful to hear when you know how articulate he was before with his speech.

 

My night is wasted.  I'm supposed to be shooting a female X-Factor contestant's concert for a Sunday paper's lead review and there's no pass..  Normally the production teams are quite flexible and accommodating (especially when it's coverage of this size!) but tonight, they say no..  they don't even have the decency to tell me to my face - asking me to wait 15 minutes while they sort it out, then after 30 minutes and I ask the box office to chase it up, they pass a message back saying "It's a no". I'm not too bothered about not shooting her - but I am bothered at the fact that I've come out expecting to earn some money for the first time in two weeks and leave empty handed when I could have spent more valuable time at home with Joel.  I let the paper know that they refused access, they have a mild panic attack as now they have to change their plans for the music section next week. 
Part of me hope's they cut the review altogether, but that wouldn't be very fair on the reviewer.  Thankfully, the picture desk say they'll pay me a decent fee for turning up so at least my journey hasn't left me out of pocket.

 

I get home just before 9pm and Joel is still awake..  thank goodness. Eve has been trying to Facetime me, so I facetime her and she speaks to Joel for a bit.  She wanted to facetime Joel but bless her, decided against it as she thought he would be resting in bed, and didn't bother me because she knew I'd be working..  or thought it at least.

Joel has great fun speaking to her and actually SEEING her..  We're glad they both have iPods now..  Facetime is very useful..  even if the technology has been around for years before Steve Jobs championed it as his own idea...

We say goodnight to her - she looks like she's having fun.  She's happy anyway.  Joel also enjoyed his first FaceTime experience.  Thanks Steve.

No sooner has Eve said goodnight, Joel wants to go to bed.  I carry him upstairs and he nestles his head into my neck and shoulder.  Before the tumour, he'd never be so close as this.  As much as I like the loving I get from him now, I'd still rather have the child back who doesn't want to get close, the child who can't sit still for more than 30 seconds, the little boy who would ignore every request for a kiss and a hug from me.. I feel like I've had my child taken away from me and substituted with another.  I don't like it. I want my son back.

Tonight, I sleep in Joel's bed as he sleeps in the arms of his mother.  I wish our bed were big enough for the three of us.  I don't want him thinking that I'm not there for him - but I don't want to push myself on him over his mother either.  I think she's more important to him than I am at this moment.  He's always been closer to her than me, although lately, he's been the closest he's ever been with me..  It's like he's forgotten that he's been his mums boy..  I don't want to take that away from her, so I stay in his room tonight.  Lonely.

 

 

 

Pie & Chips & Mushy Peas... Is all my brain and body needs...

It's a fairly good start to the morning.  I managed to sleep through until 7.15..  no rude awakening by the smoke detector..  looks like I've made a spider homeless though.  It was him or me.  Although I now think back to the time I hoovered up a spider as a child and my dad telling me "That was probably a mommy spider and all her children are at home wondering where she's gone...."

I've always tried to move spiders outside rather than kill them, and I make a point of telling my kids how important it is not to kill creatures 'just because they don't like them'.  I'm terrified of moths, spiders, creepy crawlies of all shapes and sizes, but I'd always try to get rid of them without harming them..  I've dripped with sweat trying to catch a spider in a glass with an envelope before flicking it out the kitchen door, running in slamming the door behind me in case the wind blows it back in...  Eve is terrified of spiders too, but thankfully, I know she'd not kill one.  Aside from the fact that she's listened to what I said, I don't think she'd get within reach to kill one if she wanted to..

 

I'm about to leave the house to take Eve to school and I remember that Joel had made cookies yesterday while I was away..

I get to the hospital this morning and Joel is happily playing 'Cat Physics' on his iPod..  He's reached level 22 in a day.  It's fun, and it helps him learn about the effects of gravity, velocity, reflection etc..  he's racing through it.

The baby in the bay next door is missing..  I ask Louise what's happened to him..  "The nurse has taken him for a bath" she says.  No-one has been in to see him.  It's mid morning before anyone does, and as the woman approaches the bed, the baby just sits there with no emotion..  "It's mommy..  " the woman says..  "Hello <name withheld for privacy>, it's me, mommy".  This is obviously a child who doesn't recognise his own mother.  He doesn't make any attempt to reach out for her, and all through the night he's been crying out for mommy..  different nurses comfort him, and he settles with all of them.  He doesn't know who his mommy is.

They're here for less than an hour before they've left again, but not before deciding what they want for lunch..  pie and chips is one of the items I heard..  with mushy peas..  Lovely. Get your priorities right love.

In the meantime, Joel has been without food since 6.30am, and has been on just liquids until 11..  Dr. Bennett comes to visit us - he's an anaesthetist normally, but today, he's the one putting the Hickman line in.  He draws plenty of diagrams which aid me, and is very helpful.  He tells us Dr. Underhill will be Joel's anaesthetist today and that she'll be along later..  she joins us shortly after, and talks to Joel about iPhone apps.  She has an iPhone and Joel has pleasure in showing her Cat Physics.

There's a chance he could be in surgery shortly after 1pm, so we get him into his gown and ready to go...  we still have NO idea if he's going to be allowed home tonight.

Colin turns up with Joel's lunch order, despite him being "Nil By Mouth" until after the op.  Louise asks him to put Joel's name on it for when he gets back from surgery.  Colin apologises and takes it away for later.

Shortly before noon, someone from the family of the boy next door returns to the bed side..  the reek of alcohol fills our bay, and it's not hand gel.  There's no sign of the mother or father.  The little boy is beautiful, and doesn't know who his family is.  I go to the kitchen to make a cup of tea, and they're in there..  One guy, appears to be an uncle figure, says "There's a pub next door"... that says it all to me.  Beer and chips, that's all they care about..  a child less than 2 years old is sat in the bay next to us, first time he's been awake for 3 days, with fractured skull, fractured jaw, and fractured pelvis..  and they're wondering where the nearest pub is.  Scumbags don't deserve children if you ask me.

We're called to say that Joel is about to go into surgery to have the Hickman line put in..  we're allowed to go with him to the anaesthetic room and the team are there ready to get him to sleep..  they opt for gas so as to protect his nerves.  My only memory of gas is concentric circles, red and yellow, decreasing, with the theme music to Dick Barton playing..  then my nose feeling like jelly, and a gorgeous blonde dental technician waking me up.  I'm sure she felt a mutual attraction to the 7 year old boy having a filling..  I've lived with that thought for 32 years.  Please don't shatter it.

Dr Underhill, the anaesthetist, lets Joel play with her iPhone.. having seen him playing with his iPod touch earlier.  She loads 'Talking Tom' and tells Joel how to stroke him, feed him, and make him scratch the screen..  all the while, slowly increasing the amount of 'magic wind'  We all laugh, with the image of Spongebob & Patrick and their magic bag of wind...  Before long, he's asleep..  we kiss him, wish him luck, and leave the operating theatres.

We go for a bite to eat in the cafe downstairs...  fish and chips (it is Friday after all)..  I begin to feel like one of the scumbags from the bay next to us..  except I'm drinking diet coke instead of Fosters.

We head back to the ward and sit for a while by the empty bed.. I can't remember what we talked about..  If I'm honest, I think we may have sat there silent....  It wasn't long after we returned anyway, before they said he was ready and we could go down to collect him..

As we walked into the operating theatre, a nurse came from behind a curtain where there was a bit of commotion and said to our escort "Not yet".  I felt horrid. "Oh dear god.. what's happened...".  Horrible thoughts went through my head, and the nurse reassured us quickly by saying "No problem, he's just on the bed pan...".

Turns out he wasn't..  while coming out of the anaesthetic or during his lumbar puncture, he'd soiled his pyjamas and the bed sheets...  so they were quickly trying to clean up all the mess.  He was horrified, and from embarrassment, clammed up.  He wouldn't talk to any of the nursing staff.  As soon as they said we could go in, we squeezed his hand, kissed him, and told him everything is alright and not to be embarrassed about anything.  I said to the nurse who escorted us "Been there, seen it, done it..." and she replied "Yes, I think we probably all would during an operation like this...".  I pointed out that I was actually talking about when I returned from an Egyptian cruise, not an operation.  I don't think she saw the funny side of it.  More a sympathetic laugh for Louise.

Eventually, Joel became a little more relaxed and open, and we returned to the ward..  and there was a gathering around 'the boy next door'.  We had our curtain closed halfway along their cubicle..  not sure why it was only half way..  I don't think we'd actually opened or closed it, but that's how it was..

Joel became more aware of his surroundings and said he was hungry... Louise asks for Joels dinner..  they can't find it.  They have no idea where it is. Great. He's had nothing to eat since 6.30 this morning, and they can't find his lunch that we'd asked them to save for him...

 

Joel still hasn't had his CT Scan either..  somebody forgot to book it. Mr. Solanki had ordered it, but someone lower down the ranks failed to action it..  we're told it's not going to be until Monday now, so Louise has to prepare for another weekend in the hospital.  What a waste of resources..  just for a CT scan - we'd have to take a bed for another 48+ hours....

At 4.40, Patrick - Joel's nurse for today comes to us and offers us a deal..  if he can get us down to the Radiology department before 5pm, they can do a CT Scan now, and we can go home tonight..  It's a race against time as Patrick has to order a porter (for health and safety reasons apparently, nurses and parents can't move beds!), and Patrick has to ensure the bed has portable oxygen and a SATS monitor.  The porter arrives and navigates us through the corridors, around all the abandoned trolley beds, wheelchairs, and other patients until we arrive at the lift to take us to the ground floor.  The lift door opens, and it's full..  no room, so we have to wait for them to disembark at their floor before being able to call it back to ours.  Tick tock..  it comes back and we continue..  we arrive at the radiology department and no-one is around..  it's 3 minutes to 5..  looks like we're staying at the hospital for the weekend.

Then a young lady walks around the corner and says "CT Scan?  Is this Joel?...  Can you confirm date of birth?".  There's silence as I wait for Joel to respond..  then I realise she's actually talking to me.  "Oh sorry - I thought"...  never mind..  "er..  " I continued..  I was trying to remember the year..  I always get confused with the years..  "Twelfth of the Twelfth, Two thousand and...  er... four".

Great.. Password accepted!  We're ushered into a room, given heavy lead lined gowns and allowed to hold Joel's hand as he enters the biggest donut he's ever seen..  He laughs when I suggest this..  not the best idea as he's got to keep still.  He's perfect - so still..  the radiologist comes out, gives Joel 3 stickers, and says the scans will be available immediately for the doctors to have a look..  and we're taken back to the ward by the porter.

Before too long, Joels tea arrived..  Spaghetti Bolognese...  Louise starts feeding Joel and he's loving it..  his favourite.  Then Maggie from the cancer ward comes to visit us and explain what's going to happen next week..  I take over feeding duty while Louise talks to Maggie.  All of a sudden, the girl in the next cubicle opens the curtain fully and gawps at Joel..  unbelievable.  I'm too shocked to ask Maggie if she'd mind closing the curtain again..  I carry on feeding Joel and secretly praying that social services are looking into that boy's care.  I have a feeling that the nurses are too.

A few minutes later, Joel has spaghetti sauce all over his face..  there are bits of spaghetti all over the makeshift napkin in front of him, and he still has half a plate left, AND a nice looking piece of garlic bread.

Dr. English and Mr. Solanki appear and say how good Joel is looking.  Dr. English tells us that he's looked at Joel's CT scan and it's looking good.  Then he just says out of the blue, completely unexpected "And the CSF is clear, there's no sign of the tumour having spread".  Louise puts her hand to her mouth and immediately fills up and sobs with relief.  I start to cry - holding a plate half full of spaghetti bolognese..  I feel a wave of joy just hit me and knock me back..  They all quickly pull the curtains around our cubicle.  I think some of the other people on the ward must think we've received tragic news, especially hearing sobs coming from being the curtain.

I look around for somehwere to put the plate down and can't see anywhere..  then I see Joel's face..  a look of bewilderment - part fright, part concern, part surprise and part happy..  he's crying too, and laughing - and smiling.  Louise puts her face in front of his and says "Joel, I love you so very much, and I'm so so happy".  Joel's smile reaches across his face and his eyes are glassed up..  and he doesn't know whether to snigger or cry..  I think it's pure raw emotion going through him..  I know it is with us..  there's no explanation for him to cry..  It's too soon for him to get a reaction from seeing mom and dad cry..  it's like he understood what Dr. English had said and what it meant for him too. Dr. English finally said "...And so, Joel is definitely in the standard risk group".

How could I be so happy at hearing confirmation that my son has cancer?  Of course, I'm not happy - but I'm over the moon that it's standard risk, and not aggressive. It means an 80% chance 5 year survival compared to only 60% for aggressive risk.  But that's still not 100%, so while I'm ecstatic, I'm still apprehensive - but so far, this is on par with Mr. Solanki telling us the resection of the tumour last week was a success..

The family next door all seem to be getting ready to go.  They have their coats on...  Looks like no-one is staying again.  The father goes over to the nurses station and says that he's going, and the nurse gives him a filthy look, full of contempt.  They're just dumping this child on the ward for the staff to look after.  It's not fair on the child, the nurses, OR the other patients on the ward who can't have the full benefit of the staff because they're having to change nappies and basically babysit!

They all leave, and it's less than 90 minutes before the mother and father return, with their tails between their legs.  We think they've been called back to the ward to look after their child.  These are the ONLY parents on the ward who are not staying.  Mind you, it's Friday, and the bar around the corner probably has a 2-4-1 promotion on bottled beers tonight.

It's 9pm before we're finally discharged from the ward.. we're back on Monday to meet Dr. Ford and Dr. English for the plan of Joel's Chemo and Radiotherapy (and more physio!), but for now, we're clearing out our food cupboard, filling the car, and coming home.

I make a couple of journey's to the car to take bags of clothes, food, gifts etc.  The special parking permit allows us to park in the staff car park which is a distance away (not too far), but at least it's all undercover and avoids having to walk around the dark streets.  The only problem is that it's multi-storey, and they've decommissioned the lift..  it doesn't work, it's dead..  lifeless..  so it's all narrow flights of concrete stairs...

I'd moved the car earlier from the 4th floor down to the 1st floor, but it still meant that I had to wheel Joel in his wheel chair up the exit ramp of the car park and up another 'down' ramp to get to my car because the lift had been taken out of service..  I'm not being funny, but giving 'long stay parents' a parking pass with no disabled access has to be one of the most short sighted decisions ever, surely??

We get home, the door opens.  Joyce helps us carry everything into the house.  Eve awakes from the sofa to find Joel sitting opposite her on the other sofa.  Her face is a picture.  She almost breaks down in tears when she see's Joel..  he just gives a casual grin and chuckle, smiles at her, and twists his fringe around his finger..  what he can reach through the bandage anyway.

Eve is too nervous to give him a big tight squeeze, but gives him a kiss... I ask her if she enjoyed the cookies Joel had made for her, and ever so genuinely she said "Oh yes, I did - they were absolutely gorgeous!!" - proper grown up.  I don't want them to grow up at times like this.  I don't want them to have to experience the pain of real life..  but then again - you can't have the immense pleasure children can bring you without having some pain to go with it..  for every action there has to be a reaction and all that.

That said - Today has been a good day.  One of the best in the last two weeks.  He's home now..  two major hurdles overcome.  We're looking good.  I can't stop thinking about the boy from the next cubicle.