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

Not for those with a weak stomach!

What a week… i’ve never known anything like it.

George waiting for his blood test
George waiting for his blood test

On Tuesday we headed into Alder Hey for George to have a blood test.  This was to make sure his counts were high enough to get started on the new “Delayed Intensification” phase.  We got a call later that day to confirm we needed to go in the following morning as planned as his counts were great.

Wednesday, Daddy took George into hospital first thing to get ready for theatre for spinal chemotherapy whilst I took Oliver and Harriet to school.  I then met them there just as they came out of 3B Daycare. having had his gripper inserted into his port already, and was heading to the theatre waiting room.  The nurses were very impressed with how calm George was as they put the needle into “Barry” – he is so unbelievably brave…

George was very excited to be able to ride the trike again however he had to be herded into a corner as it was quite busy in there this time and we don’t want to risk him catching any nasties.

Heading to theatre on foot
Heading to theatre on foot

He went into theatre with no fuss, with his usual lovely anaesthetist who was asking if she could have his Mummy’s autograph as she’d heard me on the radio! <cringe>  Georgie gave me a kiss goodbye and went off to theatre smiling.

We grabbed a coffee whilst he was under anaesthetic and then headed back just in time to be called to collect him again.  He came out and was happy still, staying lay flat asking for food and to watch TV as usual.  After a while, Damo decided he was going to head back to work as all was well and once George has had his observations done for a an hour or two, we can usually go home.

Feeling drowsy after theatre
Feeling drowsy after theatre

Unfortunately and typically! once Daddy had left and George was able to sit up, he started to complain of bad headaches and was crying.  This was new to us as he’d never experienced this before… he just kept lying back down saying he wanted to go home.  Kev, the ANP who was on that day, immediately prescribed morphine for him.  It took what felt like an eternity for the pharmacists to sort, when in reality it was probably no time at all.  I was pacing around with him crying in my arms as he didn’t want to be on the bed any longer.

Feeling poorly
Feeling poorly

I was starting to stress as it was hot, he was in pain and I’d also realised George’s buggy was in the car and he’d wheeled in on his trunki.  There was no way he was going to wheel back out and I now had all his meds, a trunky suitcase, my coat (it was stifling in there!), my bag and George to carry out.

Kev told us we weren’t going to be able to go home until George had stopped having headaches 🙁 a very disappointed Georgie was starting to get more distressed as was I.  The headaches were due to the chemotherapy he’d had injected into his spinal cord which travels into his cerebral fluid.

I was giving him a “cuggle” on my knee as he then puked all over himself and me 🙁 this is a side effect of the anaesthetic.  So he wasn’t having a good time of it all.  I had sick down my leg and in my slip-on shoe.  The pungent aroma of wotsits/fresh orange was radiating outwards from us and I was starting to wretch.

Feeling better in new Pjs
Feeling better in new Pjs

Luckily Mia’s mummy who was in the cubicle next to us grabbed us some paper towels while Debbie came and cleaned around us.  It was grim and I can still smell it now.  George fell asleep in my arms straight afterwards so I sat for a minute with him, then moved him onto the bed.  One of the lovely playworkers came over and sat with George while I cleaned myself up as much as I could and even managed to run in my squelchy shoe to the car for the buggy.

It was a huge relief knowing I wasn’t going to struggle out of the place and Pip, another lovely playworker, also grabbed George some brand new minion PJs to change into 🙂

Damo then had to come back out of work (in Manchester) to pick Oliver and Harriet up from school as we weren’t going to make it back in time.  My heart jumped when George started stirring and I was holding my breath waiting to see how he felt “please be ok, please be ok”, he sat up looking tiny with his dody in and said “it’s gone!? my head isn’t hurty!?  it’s magical!”

It’s magical…. could he melt your heart any more.  He literally threw his legs over the side of the bed and walked round to me for a hug.  Then he picked up his swabs (swab sticks to test for MRSA etc) that we’d already done and walked over to the nurse who had been looking after him to hand them over.

I’ve no idea what he was saying, but he was talking to her as he handed them over, again he looked so small, the nurse crouched down to him and put her hand on his shoulder and shot a little smile my way… well that was me gone then, I was in bits.  I’d managed to keep it together until then… I think it was relief.

All ready for Harriet's birthday
All ready for Harriet’s birthday

So we went home.  We had a class to get Oliver to and I needed to pick up Harriet’s birthday present and wrap everything.  I slept well that night.  Day 1 done…. only the remaining 8 weeks to go.

I’d like to say the following day was easier but it wasn’t.  We were up early for Harriet’s birthday, she was a giddy kipper and I had loads to remember… sweeties for school and all that. Daddy went to work and George and I dropped the older kids off.  I’d planned ahead with a spare set of clothes each in the trunki this time and also knew I’d take the buggy straight up with me so was feeling confident.

All was going well until about 15 minutes into the journey to Liverpool, just near the M57 where the motorway splits into three, at approximately 70mph with no sick bowl to hand, poor Georgie brought all his breakfast up.  He cried, I tried to reassure him whilst panicking he’d choke and trying to not kill us by watching the road ahead.  I had no idea where I could come off the motorway so decided we’d just plough on.

Of course, with no baby wipes in the car, there was not one parking space under cover so the car sat there in the blazing sun ALL DAY caked in puke.  I stripped George on the car park, he cried, I wretched, I cried, he wretched.  I had nothing to clean him up with (used all the wipes the day before!!) so he put his one clean outfit on, over the sick.

We were a sight for sore eyes when we walked in again.  The nurse directed us to the shower where we could get cleaned up and gear ourselves up the drip and an hours worth of IV chemo.  He carried on being sick for the time we were there and was prescribed anti-sickness drugs to take as well as his morphine.

Poorly boy :(
Poorly boy 🙁

He looked like crap and obviously felt like crap and it was sad sitting there knowing that it was this medicine causing him to feel this way.  It’s a horrible feeling that I wish I could take away.  But amongst all this, I received a really aptly timed picture from George’s preschool saying “Go George!” from all his little friends and teachers.  That day they’d had a Superheroes and Princesses walk for George… I shown him the picture and cried a little.

George's friends cheering him on
George’s friends cheering him on

Thank you everyone – not only for your walk, and the funds you’ve raised, but for that special moment in hospital when we both felt sad – you really lifted the mood.

The doctor decided to leave the gripper in “Barry” as he may have needed fluids the following day because of the vomiting.  Damo needed to come out of work again to look after Georgie so that I was able to collect Harriet up from school on her birthday (and Oliver of course).

The car was as you would imagine when I got back to it.  Thank you to the random stranger who gave me a packet of wipes from his boot… He copped for the whole story in the lift so probably felt obliged!

George was surprisingly much like his usual self once home, of course he always is once Daddy is around!  We then had classes to get the kids to again then Pizza Hut for tea with Oliver and Harriet’s Daddy.  Damo and Georgie stayed at home.

George enjoying time on the park with Fin
George enjoying time on the park with Fin

We had Friday off, when I had the pleasure of cleaning the dried vom out of the cracks of the car seat and also had our friends Dawn and Fin visiting during the day.  George had a little play on the park for 20 mins, so that was a nice change.  Harriet’s little friend Lola came to visit after school with her birthday present and with her mum Kath who I got to offload some of my stress to…

Harriet and Lola
Harriet and Lola

Yesterday, Saturday, George’s sickness had died down but he had to go back for an injection in his bum and have his gripper taken out.  I honestly couldn’t face another trip to Alder Hey and see him crying, which I knew he would, so I stayed with Oliver and Harriet and Daddy took George.  They had to wait around for an hour following the injection in case he became ill.

Isobel and Oliver making lunch
Isobel and Oliver making lunch

Meanwhile Oliver and Harriet enjoyed themselves at our friend’s house, the Appletons.  Thank you for looking after us Mrs A. George came home and was in a good mood and told me all about it before carrying on with his day.

So next week here we go, Week 2 looks slightly more promising without a theatre trip, I’m going to pack the entire house when we go and make sure we have sick bowls within easy reach in the car.  It’s a learning curve!

Latest beads
Latest beads

Here’s a little pic of him with his latest beads, he’s come so far and is still smiling 🙂

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

Alder Hey Oncology visit Phase 3 Week 1

Friday 4th March  2016 was Day 1 of George’s third phase of treatment.  Mummy was very brave and even got a sticker herself for taking George to Alder Hey without Daddy!

The plan was that George was just having an injection of chemotherapy with a “butterfly injection” but unfortunately they felt George’s veins were too bruised from previous cannulas 🙁 This meant the magic cream was out in abundance covering all his available veins… It takes an hour to work – an hour of me sweating and fretting that is.

We were then seen by the doctor who checked George over and prescribed his chemotherapy and steroids for the next week.  The conversation about a permanent line was had again to avoid all these additional needles and upset for George. The doctor said she is looking at getting him in in 2 weeks but we’ll see about that.  There seems to be mixed opinions between the doctors as to when he should have his central line fitted (we need to work out the pros and cons to the different kinds of line he could have).

George was pretty put out whilst sorting the cannula, he was literally shakeing on my knee crying “is it nearly done yet!?” I can’t stand it either but know it’s necessary at this point. to be honest, it’s the ripping the plastic stuff off his skin that he’s crying about.

The IV team at Alder Hey did a marvellous job and got it in first time so easily, they’re amazing! As soon as it was in, he sat looking at it in his skin like a hard man… Saying its “all done now, can I have a sticker?” bless him.  Mummy got a sticker too for being brave 🙂

Back out of the room he just got on with playing with toys and wasn’t phased when the nurses came to give him his chemotherapy. That was done whilst he played and chatted and then we were free to go!! At 3pm – 5 hours later!

I was too late to pick Oliver and Harriet up from school as it’s a half an hour drive at least from Liverpool to Warrington.  Luckily we have the support lots of our local friends who jumped in and collected them – much to the kids’ excitement as it meant they got a quick play with their friends.

Hello – starting with George’s Leukaemia diagnosis

George lay on his front smiling

Well, well, well…. I always wanted to write a blog but never imagined in a million years it would be this that gave me a kick up the arse to start it.  Just over 6 weeks ago my 3 year old son, George, was diagnosed with Acute Lymphoblastic Leukaemia.

George’s journey began before Christmas 2015 following a bout of tonsilitis which he seemed to be taking AGES to recover from.  Around 4 weeks after his course of antibitotics had finished, a few things had gradually been noticeable that led me to book a GP appointment – it was nothing major at the time, George has “third child syndrome” where it takes quite a lot for me to take action.  He’d been off his food, had stopped running around with his older brother and sister and generally looked a bit pastey… It was only that he’d developed a limp that made me actually call the doctors.

Luckily for us, our local GP in Warrington was well on the ball and immediately referred us to paediatrics at Warrington Hospital.  It was Christmas and the staff were fab with us, we had a visit from some of the Warrington Wolves players and Father Christmas had visited every day!George_WarringtonWolves

After a couple of weeks of various antibiotics, around 15 Doctors (it was the Christmas period!), Xrays, ultrasounds and an MRI!, a lady Doctor at Warrington put her foot down and managed to get George transferred to Alder Hey Childrens Hospital.

I can’t tell you how emotional I was following the ambulance blue-lighting down the M62, not dangerously I may add! it just always seemed to be on the horizon.  We arrived and were instantly put at ease, with a full explanation of what was going on, why we were in Oncology and would we like a cup of tea 🙂

I was still thinking, “look at all these poor children with cancer” at first, and worried how i’d cope speaking to anyone… since at this stage I just felt sorry for everyone else!? We knew George was going for a Bone Marrow Aspiration the next morning to rule out any thing nasty as far as we knew.  So far, George’s bloods weren’t presenting like someone with cancer, hence being in Warrington Hospital for so long.

George was first on the list to go down to theatre the next morning, so there wasnt much waiting around.   That hour he was in for, felt like the longest hour of my life…. that is until we had to wait for the results, then it was the real deal in terms of being on the edge of your seat – im talking no saliva left, sitting upright like meerkats, waiting for someone, anyone, to give us news.

I cant even remember the exact time, but whenever our Doctor came over to us, she looked as shocked as us and apologised saying “i’m sorry but it is!” I remember saying “it is what!?” and she said “it’s Leukaemia”.  I think I let out a bit of a yelp and Damien wept.  We were led out of the ward then to a side room where I stared at some cups of water wondering whether they were for us or not and listened to the doctor’s voice… but not really listening.  Strange how you respond in these situations.

We were told our baby had Acute Lymphoblastic Leukaemia.  He has cancer.  As upsetting as it was to hear, I hung on the fact that ALL is apparently the most treatable form and has a high cure rate.  That’s all I needed to hear.

georgieWe’re 6 weeks in now, and we’ve learnt so much.  Things about ourselves, our relationships with family and friends, things about childhood cancer and our other two children. Sometimes I feel like my 10 year old, Oliver, is more like 20 these days – he carries George around (cue the “He ain’t Heavy” music) when he needs help and hugs me when I look upset.  My daughter, Harriet, mad as a box of frogs as she is, is keeping everyone up to date on George’s treatment, behaviour and draws diagrams of bones with good cells and bad cells in.

As much has our lives have been thrown into turmoil, I have strange feeling of being complete at the same time.  George, once he’s through this, will be stronger, as will we.  We have challenges and no doubt more tough battles ahead but bring it on, George will take it all in his stride with the strength of his family and friends behind him x