George starting school – a child on chemotherapy

George and his fluffy head
George and his fluffy head

George is starting school tomorrow…. i’ll just let that sink in.

I’ve been cracking on with life like I did when he was diagnosed with leukaemia and burying my head in the sand a little.  Everything’s going to be ok, everything’s fine… I can tell you now, this is going to go one of two ways, i’m either going to be hard faced dropping him off or i’m going to be in bits, with no in between.  Our only saving grace is the fact that he’s just doing an afternoon tomorrow so at least I won’t be in the morning drop off crowd waving him off with Oliver and Harriet.  The rest of the week builds up to a full day then next week, boom, full time education!

This is more than “oh no my baby is leaving me!”, “he’s too young” nerves.  It’s more like “my son is on chemotherapy AND starts school tomorrow” kind of thing… you know the feeling?  No you probably don’t.

I’ve got every faith that his new teacher has got this, she is completely lovely and supportive, the same as the school has been since I had to make the phone call to say “Oliver and Harriet won’t be in today, their little brother has cancer, we’re taking them to Alder Hey”  Now THAT was a shitty day.

No, tomorrow won’t be a shitty one, tomorrow is the next step, the beginning of George’s school life.  It will be slightly different to the other children’s, in that he’s going to spend another 3 years with a suppressed immune system to prevent the “bad cells” coming back.  He has daily chemotherapy, another weekly chemotherapy, blood tests and meetings with his consultant every fortnight and goes to theatre ever 12 weeks for a lumbar puncture and spinal chemotherapy.  Let’s just say, there’ll be no 100% attendance certificate coming his way!

George will be more at risk of infection, and anything like that will mean more “sleepovers” at Alder Hey for IV antibiotics and monitoring too.  He’s going to have to try to maintain a high level of hygiene (he’s 4!?), avoid contact sport because of Barry (his port) and his joints may get sore after physical activities.  Catching anything contagious is unavoidable but we know the school have been on the ball with reminding parents to keep their children off if they’re ill, I mean, puking, the trots, chicken pox – what more could we ask.

The three amigos
The three amigos

Despite all this, we’re looking forward to him getting involved in and enjoying as much of school life as possible, particularly friendship.  Whether he’s reading War and Peace by 6 years old, can do Pythagoras theorem or can sing like a canary… it’s not really what it’s all about in life really is it?  I’m just glad he’s getting to go to bleedin’ school and has a chance to be happy like the rest of the kids from nursery (we miss you Playdays!).

Don’t get me wrong i’ll still post proud as punch photos on Facebook etc when he can draw round his hand at age 12…. that’s because i’m his mum. But whether he’s meeting “age related expectations” at the end of the school year or not is not about to change anything.  We’ve met more than enough families whose children have been taken from them for us to appreciate all of our children just being here.

George and his dody
George and his dody

Since George was a baby and throughout his cancer treatment he’s still always had a dummy (dody we call it) for bed time and when he needed soothing.  He’d always had it, along with his precious scarf comforter.   It was particularly necessary when going through the chemo, needles, anaesthetic and when he has been in pain.

I’d been militant when Oliver and Harriet had dodies when they were little, fretting about their teeth, fretting them being “too big”, or being judged so theirs were banished at the earliest opportunity.  As you can imagine, I hadn’t really give two hoots about the shape of George’s teeth given at one point I worried that cancer might beat him… I certainly did not give a rat’s ass what other people might think.  Like I’ve said before, one of the positive things this awful diagnosis has brought with it, is a whole new perspective… and it’s liberating.

But! actual magical things happened at our house this week… with big boy’s school fast approaching George said he wanted to give his dodies to the baby fairies.  A little door appeared one night in his bedroom and he left his dodies sprinkled with fairy dust outside.  In the morning a fire boat toy had been left in return, a fire boat that George had always wanted!  How did they know?  So George, along with starting primary school has also given away his dodies and has only mentioned them since to tell the story about the fairy door in his bedroom.  The door is still there because the tooth fairy is going to need to get in one day.

So we’ve ironed three sets of uniform, and when I say we, I mean Damien has! well…. I went out buying it all! we’ve tried everything on, got water bottles and PE kits, lunch bags, new haircuts (nearly there George!) and it’ll be baths and an early night tonight.

All ready?
All ready?

On a final note, George has asked nearly every day can he go to school yet. He is totally not arsed!

Positive times in hospital, friendships and hair cuts!

An hour after theatre
An hour after theatre

This week George was in Alder Hey Children’s Hospital for the first of his theatre trips of the Maintenance phase of his treatment.  He was in having intrathecal chemotherapy which is chemo via lumbar puncture into his spinal cord.  This is what he’ll have every 12 weeks for the next few years as part of his treatment for Acute Lymphoblastic Leukaemia.

I shared a video via our Facebook page of him playing and trotting around 3B Day Care whilst playing with his little aeroplane that he’d chosen from the “bravery box”.  He’d been nil by mouth since the night before and wasn’t able to have a drink, he’d been cool-as having Barry, his port, accessed, and was waiting at that point to be called to the theatre waiting room.  Had it been me waiting to go to theatre in his circumstances, I’d have probably had my head in my hands and no saliva left!

It was quite a poignant moment for us, given 6 months ago we’d only just learnt of George’s leukaemia diagnosis and knew little of what lay ahead.  All those times George would have completely had enough, crying and kicking off, but the poking and prodding had to continue.  The stress of administering anaesthetic , pre-meds to calm him, having to stay lay flat after theatre for an HOUR!… the lovely staff (and other parents) trying to reassure us that one day, he’d be ok with it and that they’d seen it all before.  I couldn’t ever believe that any of it would be “normal” as I avoided eye contact with people for fear of I, myself, having a melt down too…

Giggles waiting for theatre
Giggles waiting for theatre

Now look where we are, I know it’s not always going to be completely smooth but George is so happy to go to hospital.  Everyone knows who he is and shouts his name as they walk past while King George gives them the royal wave.  He knows the drill, he loves the nurses, he plays with their equipment and says he wants to be a doctor.

When George was first diagnosed there was another family on the ward with us whose daughter had also only recently been diagnosed with ALL (Acute Lymphoblastic Leukaemia).  Their little girl was experiencing some rough side effects and I remember talking to them and being so frightened about the future.  The thought of being in maintenance and things being more straightforward seemed ridiculous to even consider.

On Wednesday when George was in hospital for a blood test, we spoke to Piper and her mum, we were laughing, smiling and celebrating as they’ve also moved into maintenance…. I’m sure there was even some running man dancing.  I remember looking at people like us, just after George’s diagnosis, when things were hard, and thinking how could possibly be laughing!?  it’s funny how things change.

Nice gift to wake up to
Nice gift to wake up to

On Thursday, I also popped in to visit little Theo’s mummy, he has been in hospital, in isolation, for months so thought she might fancy a Costa.  I couldn’t stick around as I was waiting to be called to get George from recovery but his lovely Mummy passed me a gift for George’s birthday.  He enjoyed opening it once he’d come round, thank you so much Natalie – what a thoughtful gesture, he’s worn his George Pig top this weekend.

People reading this may remember Theo is a 2 year old from Warrington whose family and friends are fundraising to get him to the USA for treatment.  You can read more about this and/or donate here.

We were also sat with Erin (the little girl we’ve met who has benefit from a Little Princess Trust wig) on Wednesday and she was in theatre at the same time on Thursday too.  It was nice to chat with her mum and to hopefully be able offer her some comfort as we move forward as Erin was diagnosed more recently.  I told her about the 19 young girls from our children’s school and the locality, that her photo inspired to donate their hair to The Little Princess Trust.  Erin and her mum thinks it’s fantastic!

Some of the girls have already had their hair cut and are looking great 🙂 as is the fundraising! we’ve smashed the target and not even half of the girls have had their hair cut yet.  We have the local newspaper coming to photograph our little heroes all together this week once they’re done.  Harriet’s hair chop is this Tuesday, she can’t wait.

I overheard her in the bath with George earlier talking about how he’s lucky he doesn’t have to wash his hair at the moment.  She’s so lovely though, she told him not to worry though because it’s going to come back one day.  She also sat telling him that she’s having hers cut off for little girls like him this week.  Harriet she wants to make them feel happy again – my heart could burst with pride.

Oliver basketballAnother proud Mum moment was Saturday when l got to watch Oliver play in his first basketball match for The Eagles.  He was great, given he’d never played before, he charged straight in without hesitation amongst the opposition.  The other team had quite a few high level players but that didn’t phase him at all, he kept getting the ball and generally made the game more difficult for them.  It’s great he’s got something for himself that myself and his dad can take him out to. He was too cool for school not posing for a photo!

Taking his brother and sister out!
Taking his brother and sister out!

George was absolutely made up this week as well – Thank you to our lovely neighbours, the Tsangs, and their family for George’s really generous gift.  The family had done some fundraising through their business and all put in to buy George a battery operated digger, some big Lego storage containers in the shape of Lego of course and a fire engine tent.  He’s one very lucky boy to have you all as friends, as am I.

It’s the end of school year this week coming for Oliver and Harriet, a bit of an emotional one for Harriet as well with her teacher leaving.  We have George’s graduation tomorrow and a visit from George’s teacher.  I can’t believe we won’t have the comfort blanket of Playdays anymore 🙁 gifts for the teachers just don’t seem enough to signify how much they all mean to George and us as a family.  I’ve looked through George’s keyworker file that details his journey since he started there.  It’s really sad to see the photos from last year when he’s quite obviously poorly but we didn’t realise.  Then the photos as he changes throughout his cancer treatment, i’m so glad we kept up with attending preschool, I wouldn’t have felt as confident as I do now about him starting school without them.

Prepare for an emotional post as we get the kids sorted for school this coming September!

So we’ve got lots going on, we’re excited for what the summer will bring and feel elated to be able actually make plans to get away for a break in the UK.

Lis x

Happy Harriet, Great Manchester Run and Georgie feeling blue

Well chuffed with her animal rubbers
Well chuffed with her animal rubbers

Myself and Harriet got out for the day for some much needed girly-time on Saturday.  We both had a lovely time and Harriet chose few little treats and spent some of her own pennies on stickers and paper.

Jenerics and their Georgie banner
Jenerics and their Georgie banner

We went into Warrington Town Centre to the “Around the World in 80 Traders” event to support Jenirics and have a cheeky Chinese lunch – delish!  We saw a familiar little smiling face on the stand on a banner – our Georgie.  It was a shame the rain poured but it wouldn’t feel like home without the torrential downpours would it?  Thank you so much to the Jenirics team for your support, you are an amazing family.

It was funny at the face painting lady, Harriet deciding what she’d like to be….a princess? a butterfly? a bunny rabbit? flowers with sparkles?  No.  A penguin.  I’m not sure the lady gets many requests for penguins.  Typical Harriet.

Penguin on a bucking bronco
Penguin on a bucking bronco

So painted as a penguin she rode the bucking bronco like you do.  We enjoyed watching some outdoor theatre and had a look round town for a new dress….realising our freshly painted penguin probably shouldn’t be trying pretty dresses on, we started to head home.

The penguin enjoying the rocky road
The penguin enjoying the rocky road

I remembered that a friend of ours has just opened their new little art cafe near home so just had to stop off for a milkshake and a decent coffee.  R’Teapot is a gorgeous little hideaway on Bruche Heath Gardens serving the best rocky road I have ever tasted!! i’m talking turkish delight and everything.  It’s cosy and welcoming and we’re looking forward to spending more time there over the coming weeks with friends.  Congratulations Nat and family for creating such a gem and following your dreams x

It was nice to get out away from home for some time my little girl, we both needed it.

Later on, Harriet and I “popped round” to one of our neighbours for a catch up and for Harriet to run amok with the kids.  I did my usual when I start telling a story and leave the house hours later having not even reached the conclusion!  Thank you for hosting Andrea and for the vino, the laughter was great medicine 🙂

Our runners Shannon and Nikki
Our runners Shannon and Nikki

On Sunday I went to watch my baby sister Shannon, and my lovely friend Nikki, take part in the Great Manchester Run.   They were both raising funds for our family and for charities that have helped us since George’s leukaemia diagnosis in January.  They both ran through the torrentials to an emotional finish where we were waiting for a big hug and then went for an obligatory cocktail in a nearby bar.  They’ve inspired me to do the run next year… I better get training!

Gollum
Gollum

I felt like i’ve hardly been at home this weekend, hats off to Daddy for sorting all three kids yesterday while I had a day off.  With being out and about and everything going on, I was shocked last night by the amount of hair George has now lost.  He’s gone from “Hitler” to “undercut” to “Gollum” to “toupee in a side wind” in the space of 48 hours.

The hair loss doesn’t mean he is getting more sick or anything, in fact he’s got less of the awful disease now than when he had a full head of hair at diagnosis… I think it just constantly reminds me what he’s going through when I look at him, so it has bothered me more than I expected.  The only thing that seems to be upsetting him about it is the fact that its in his mouth and eyes all the time.  He’s feeling too rough to care what he looks like.

Toupe in a side wind?
Toupe in a side wind? trying some spagetti

Today has been another emotional roller coaster – and it’s probably more me than Georgie.  He hasn’t been constantly crying like Friday, but his mouth ulcers are worse and the steroids are in full effect so is very hungry all the time.  He’s just not himself, he’s carried a mini sausage roll round with him all day that he was desperate to eat but just couldn’t chew 🙁 he’s been very quiet, lethargic and telling me his mouth is hurting.  He’s been on morphine all day and I had to call the community nurse at lunch time to come out because I was worrying about his breathing.  It seemed shallow and he’s got quiet a nasty cough, then I literally thought I had to call an ambulance during one of his coughing fits because he was going blue and seemed like he couldn’t breathe.

He cleared a big mucousy lump and got his breath back and the nurse came not long after.  Luckily my friend Nic was here (delivering an order of sausages for the little man) and Laura had popped round too to see if could manage some noodles.  The nurse did a thorough check, listened in, checked his pulse etc and felt his breathing was fine.  Now I’m questioning my sanity and whether i’m overreacting!

The nurses have said they are going to start making regular visits to check on us and answer any of my questions that I’m currently having to save up until the next hospital visit.  I had felt quite isolated being sent home with George initially, I mean on the medical front.  We can’t take him into a GPs surgery with a load of sick people and Alder Hey, amazing as it is, is a long way away and a very busy place when you have a concern or question.  Once George had started going back to preschool though and he wasn’t suffering too much, I felt ok.  It’s now that we’re in the midst of the intense phase, we need the nurses here, they’re such lovely people too, I instantly relax when they’re around.

The lovely Clare dropped a spag bol off earlier which helped immensely, I haven’t had time to do a food shop and haven’t left George’s side all day to cook anything.  So after a long day at work, Damo came home to a decent meal! I could’t pass it off as my own unfortunately as my trademark ‘burnt’ wasn’t one of the ingredients.  Thanks again Clare x

Smiling Georgie
Smiling Georgie

We had a couple of nice moments when George managed to play with Lego today, he was also very happy to have a snuggle with Daddy when he got home.  I managed to capture some of his smiles – he looks like his normal self with a cheeky grin 🙂

Hopefully we’ll get out to water some of our plants in the garden tomorrow, George loves doing that.  The guys have been here today installing a garden tap and putting the new fence posts and panels in.  It looks ace! Thursday the grass goes down and maybe at weekend we might get the canopy up.  We’re really looking forward to getting out there to enjoy it.

Another few days done, we’re not in hospital this week (fingers crossed!) and are just taking each day as it comes.  Hoping for a some more comfortable days for George x