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.