Saturday, 5 February 2011

The Remedy (I won't worry)

Saturday 5 February 2011

Back to reality...

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.


No such luck...

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'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..  (

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.....

IMG 0845Where'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.

IMG 0838


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.


  1. Brilliant post (as always), Jason.
    You've all had so much to deal with in such a short space of time. Indeed, more than a normal lifetime's worth.
    You have all our support and I know at times you must feel so isolated.
    I think you should think about publishing your posts as a diary when the dust settles (so to speak). I am sure many parents in the same, or similar, situation will find comfort and an identity with the plethora of emotions.
    And, as always, your photo's are superb.
    Please try and be positive - I know it's so hard, but I know you'll all find a way.

  2. I love how the aunties have the same set to their mouths.

    It's natural to question everything, even a god you don't really believe in. Your brain is constantly looking for answers and, more importantly, solutions. But as there is nothing you can do except hope that the treatment is successful, and to be there for Joel and each other and Eve, your mind works overtime. It's not nice, but it's normal.

    I hope writing this is helping. In my thoughts. P

  3. I love what you're doing here Jason. There is so much good that can come out of this challenging situation and I love the path you're choosing. Your great humour and powerful love will get you, Joel and everyone close to you though this. On the other side is a rainbow so beautiful which will shine on your forever. It's waiting for you just around the corner. First you need to walk through the rain. Holds hands with others, we are here to support you. I'm by your side mate. Stu x