Typical Bank Holiday moisture in the air!

Time for some pinball
Time for some pinball

So the bank holiday weekend has been a bit of a wash-out, no surprise there with us doing Gung Ho and work beginning on the garden!

We went to George’s hospital appointment on Friday where he was taken off the chemo that we give him at home and prescribed some more morphine.  The ANP we saw was lovely and sat playing with George before checking him over.

The skies don't reflect the mood :)
The skies don’t reflect the mood 🙂

On Saturday, Oliver and his friend Isabelle, plus me and my friends Leanne and Ruth, took part in Gung Ho!  It was hilarious and hard work at the same time.  I did feel emotional at the start when the guy doing the countdown asked which charities people were running for…

Me and the big lad before the race
Me and the big lad

Oliver and Izzy pretty much ran ahead doing their own thing once we’d given them a peg up and over the highest wall with absolutely nothing to hold on to.  We meanwhile battled through these huge inflatable obstacles, being kicked and trodden on.  The highlight was probably as the heavens opened at the top of the 5-storey slide… and I don’t just mean it was bucketing down, that was already happening, I mean hailstone, freezing, rock hard hail.  So just imagine, with your mate who’s bricking it, stood 5 storeys up in the wind and hail then throwing yourself down this vertical drop and sliding straight through ice water.  I ended up like a turtle on its back hurtling arse-first with my eyes shut.

Post run happiness
Post run happiness

I’d like say it was exhilarating and I arose feeling empowered but i’d be lying!  it was bloody freezing, I was numb and feeling a bit on the damp side.  But we did it, we were triumphant!  Oliver and Isabelle were typically stood waiting at the end for us impatiently… asking why it took us so long!?

So I just want to thank everyone who’d sponsored us, and I wanted to give special recognition to little Noah Brown who is one of Oliver and Harriet’s good friends and also one of our neighbours – Noah sponsored Oliver out of his own money box.  So cute and caring.

Thank you also to Leanne, Ruth and Izzy for putting themselves through that for our cause, it means so much to us xx

The decking!
The decking!

The rain didn’t let up for the start of the work on our garden, the decking arrived on Friday and work began on Saturday.  The guys worked tirelessly over the weekend.. I’ve added a couple of shots for now but hope to do a full on before and after post in the future.

So this week, amongst the beginning of “Delayed Intensification” it’s also Harriet’s birthday.  George is due to be in hospital on a drip of chemotherapy that day so Damien and I are going to go with him but I am probably going to pick Oliver and Harriet up to take them out for tea.  Hopefully things will be different next year for her 🙁

We’re hoping tomorrow brings good news with George’s blood test so that we the next phase will continue from Wednesday.

I’m lucky to have regular support from Lynda from the Joshua Tree, she came to visit last week and listened for a while.  Lynda has been through all this herself with her own son who is now strapping lad in his teens.  It’s nice to be able to share my thoughts sometimes with someone who can completely relate.

I feel glad that we’re at this point and that another couple of months and we’ll be moving on to maintenance.  I know it’s the treatment that’s making things hard at the moment and not the cancer, things could be different.

So sick bowl at the ready, here we go

Lis x

Oliver – my unsung hero

Tea George?
Tea George?

Let me tell you a little about my eldest, Oliver.  Oliver tends to slip through the net when it comes to reporting the latest… he’s lost his cuteness for an arty photo and has really settled down after 9 years of wreaking havoc.  I feel this is the calm before the storm of the teenage years!

What?
What?

He’s always been an absolute pain in the arse, getting up to mischief and generally leaving a trail of destruction behind him.  He was the kid that knocked your toddler over in the soft play centre because he was running at a hundred miles an hour.  He’s the one that I’ve always held my breath over on parents evening because of his behaviour.    He’s the kid that sits tapping his pen just because it annoys you… he has an answer for everything, is sarcastic and is ALWAYS right.

These days he’s quicker than me in more ways than one! he’s still always “right” but now I find myself struggling to get my point across because his “negotiating” has left me dumbstruck.

Play time
Play time

Since his little brother was diagnosed with Leukaemia in January, it’s felt like Oliver matured overnight.  I felt sad for him to have to fear cancer in his little brother.  He became sensible and caring, traits i’d not really seen in him before if i’m completely honest.  It’s been a sharp life lesson for a young lad, teaching him what the real world can actually have in store – this is real and this what thousands of people deal with every day.  We know it’s shite, we wish it wasn’t our Georgie, but when we’re through this, think about what kind of young man Oliver will have become.

Drawing time
Drawing time

It can be p*ssing down and i’ll be struggling to get the shopping from the car and no sooner am I heading back to get George out, Oliver has already undone his car seat and is carrying him in the house.  He’ll say “let me get that Mum, you see to George” when he’s upset… he’ll automatically run to comfort George if he’s shouting for me and i’m in the middle of something.

I’ve chatted tonight with Oliver about the upcoming treatment George will be facing whilst George was in the room. I explained that this is the time that he could be sick, lose his hair and sometimes cry because he doesn’t feel well.  George heard this and said “I don’t know if i’ll be brave anymore, what if I cry?” and Oliver, the most beautiful big brother sat there and said “You’re the bravest person I know George, it’s ok to cry, it doean’t mean you’re not brave anymore… I cry sometimes too!”

Giggles
Giggles

How did this happen? whatever George wants, he knows his big brother has always got his back.

Before we reached our fundraising total for our garden, Oliver wanted get involved.  We entered GungHo Manchester with some good friends, not anticipating that we would in fact meet our target before the date even came round.  That date is tomorrow!  It’s an inflatable obstacle course on Heaton Park and it’s due to pour down.

Taxi for George
Taxi for George

If you hadn’t sponsored anyone yet and you don’t feel like doing so after reading the above, you have no heart 😉 If you feel you want to drop Oliver a few pennies, you can do so here if you want to… I’m aware most of our friends have already sponsored so just catching anyone that hadn’t got round to it yet!

Fundraising aside, I couldn’t be prouder of Oliver and all that he’s achieving in everything that he does.  He’s a bright lad and is the one i’m relying on to pay my care home fees… so he better keep it up!

Fingers crossed for no broken bones tomorrow!

Lis x

The new phase and the new bedroom

Georgie in his new room
Georgie in his new room

It’s been a very busy week following the St George’s Day toddle last weekend – a day that we’ll never forget.  What I’m finding amazing is how, at such a difficult time for us as a family, we’re managing to have some of the most beautiful, positive moments.

A great example of this is the transformation of George’s bedroom that’s also been happening over the last week.

A secret bed pulls out for Mummy or Daddy
A secret bed pulls out for Mummy or Daddy

We’ve had kindness from all directions for that too with our good friends, Ryan and Simone Norris, donating towards George’s new bed along with The Mark Gorry Foundation.  This has made life so much easier as his new big boy’s bed has a second bed that pulls out from underneath!  it means that whoever is on duty that night (cough, cough Mummy) can sleep comfortably by George and let the other get a decent night’s kip.

This is going to be particularly important over the coming months as George might be more sickly and uncomfortable.

Grey walls and fire engines
Grey walls and fire engines

George’s Nanny Jane and Grandad Tony bought him a new bedding and curtain set – covered fire engines of course!

The team at North Cheshire Construction worked tirelessly in their spare time to rip out the old room, remove the old nasty artex ceiling, plaster, paint, wallpaper, install new sockets, switches, skirtings and more….

Hallelujah for storage!
Hallelujah for storage!

We feel blessed to have such wonderful people around us and are eternally grateful to everyone.

George’s “Interim Maintenance” phase of treatment is already drawing to an end this week and we’ll be moving into “Delayed Intensification” next week… yeah it’s as grim as it sounds.

A LEGO gift off the builders!!
A LEGO gift off the builders!!

I’d intentionally avoided looking closely at what this next phase is going to include as it’s renown for being harsh compared to the current phase.  This next 7-8 week phase is going to hopefully eradicate any remaining nasties that are hanging about, then the next 3 years or so of chemotherapy are to make sure it doesn’t come back! well that’s my understanding anyway…

Debbie being a bit crazy!
Debbie being a bit crazy!

Luckily for George we have nurses like crazy Debbie to keep us amused each visit though.. this was George yesterday having a blood test – I’m so proud of him, he just cracks on even when his nurse is a bit nuts 😉

Tomorrow we’re back at Oncology clinic at Alder Hey to have the chemo that he has at home adjusted and prescribed.

Next week we’ll be starting with a blood test on Tuesday then depending on his blood counts, we’re back Wednesday for theatre (spinal chemotherapy), Thursday he’ll start back on steroids and have another two kinds of chemo through a drip for an hour or so.  He gets Thursday off but we’re back on Friday for an injection in his bum that he’s had before… he doesn’t like it (who would!?) but I think that might the last one of those he needs for this phase thank goodness.

Amongst all the above he’ll still be having his daily chemo at home and his weekend medicine that he’s had since the beginning.

Lisa and Olivver
Me and my big boy

So approach with caution next week, it’s Week one of eight for this phase.  I’m anticipating less sleep all round, roid-rage, a few more tears (all round!) and the peperami monster might be back… at least we have a cosy new bedroom to keep him smiling and how lovely was the message from the Swashbuckle crew today!?

There’s more excitement happening this weekend with Oliver and I taking part in Gung Ho Manchester on Saturday morning with some of our lovely friends.  Our target for our garden has been met before we even managed to take part!? a testament to the support we obviously have out there!  I’ll still be updating on how we get on as Oliver’s really looking forward to doing his bit and embarrassing his Mum!

Lis x