George Made a Wish

It’s been a long time since I last posted – but take it from me, no news is good news!  George’s bloods have maintained really well over the past months with all our hospital visits being routine only.  He’s still enjoying going to school and his daily chemo and trips to theatre for spinal chemo are just part of our routine now.

George Rooza

This time last year Make a Wish Foundation confirmed they wanted to grant George a wish.  At the time we weren’t ready to accept their offer due to George still receiving very intense chemotherapy and still being too poorly.  The lovely volunteers from Make a Wish had come out to our house to chat to George about his wishes which included an ice cream off the ice cream van and to visit the local fire station….! the guys from Make a Wish giggled with us and said they often get this kind of request but really try to make it a once in a lifetime experience for the little ones.

They asked George some questions and through water parks, ice cream, santa, snow, Lego, slides, fire engines and aeroplanes, they came up with three wishes and left to speak to their head office about which one they could make work.  Not long after, we received a letter confirming they’d like to send George on an aeroplane to a sunny destination where he can go on water slides and eat ice cream to his hearts content.

George and his Make a Wish Memory Box

It was an emotional time and whilst still facing a few hurdles I don’t think any of us could really imagine being in a position to leave the country.  We postponed his wish until 2017 so that we could gauge what life in “maintenance” would be like for us.

And so here we are…. I opened the full itinerary this week from George’s Wish pack and had a little cry – firstly at just how personal and special they’ve made it, and secondly with relief.  Relief of how far we’ve come and that he’s so well, we’re actually comfortable with going!

I’ve had to scrape the kids off the ceiling this evening to get them to sleep as we head to Portugal tomorrow morning (if there are any thieves reading this, my house will occupied, I have eyes everywhere and we have a guard cockerpoo who will eat you for her breakfast).

  Georges Beads of Courage

I’ll be honest I’ve had moments of guilt at times, and even considered not sharing our positive news.  I felt like we shouldn’t be accepting this at all while George is functioning so well at the moment. But then I look at all his beads of courage, every one of them representing needles, anaesthetic, doses of chemotherapy, port access, hospital stays, steroids, scans, tests and more… groups of colours or shapes of beads that I remember are from the times that I never want to visit again – the ambulance, when the pain relief wasn’t working, when I sat in my living room questioning whether he could breathe properly, feeling scared and isolated and more recently the moment relapse was being investigated…. I can’t even put into words how that really felt.  What I can say though is it’s all more than anyone should have to endure in a lifetime, never mind a little boy in the space of a year.

So after all my baby has been through, he deserves this, we all do.  His Beads of Courage are going to continue to grow for another couple of years yet – so we’re off to make a little boy’s wish come true – and we will all enjoy every last minute… wouldn’t you?

 

Lis x

Family life with a child on cancer treatment – Maintenance

A new kind of normal

I’ve had a few people highlight that I haven’t posted in a while, asking after us and how George’s chemotherapy is going, so thought I’d give an update.

The children watching the penguins
The children watching the penguins

Things are normal – our new normal anyway, hence the radio silence.  If you do keep up via the Facebook page or on Twitter you’ll have seen the little life updates from Instagram or when I’ve tagged us in Alder Hey.

We enjoyed our trip down south to visit family in the last school holidays and I survived the “beautiful” singing all the way in the car by the kids.  Whipsnade Zoo was great and it was lovely to spend some time with our family there.  The drive home wasn’t so enjoyable late at night trying to navigate alone.  The kids were sleeping and I was diverted off the M6 TWICE back to Warrington!  Anyway, I lived to tell the tale…

Temperature spike during maintenance

George having his obs done
George having his obs done

The following couple of days we were in and out of Alder Hey as George was poorly.  He’d spiked temperatures and needed intravenous antibiotics through his port, plus the usual blood tests and cultures, snot samples and all that.  Imagine someone sticking a tube up your nose to suck out the snot!  The tests came back showing he had 3 viruses that may linger but the hospital were happy he should be able to fight them off with the white blood count/neutrophils he had.  He’s gradually improved since then and thankfully he was over it by the time he was back in school.

Back to school

We’ve been back at school for a couple of weeks now and had Halloween and Bonfire night in between.  We managed to host our usual Halloween party, that got messy and then hid indoors on the 5th November with Sugar the poo away from the noisy fireworks.

Oliver cross country running
Oliver cross country running

George had a couple of emotional days after the first week back crying in school and crying at the gates saying he just wants to go home with Mummy.  Broke my heart…. but we both sucked it up.  The teachers were as lovely as usual encouraging him and talking about what lovely plans they had that day.  The school office called me as soon as I got home to tell me he’d settled so I didn’t spend the day fretting.

Oliver ran for his school in cross country at Walton Gardens last week and has been enjoying playing basketball.  Harriet’s being graded for her first karate belt next week.  She’s still spending some of her time as her alter ego “The Carrot” or pointing her finger up off her forehead pretending to be a unicorn quite a lot.  I must say the finger doesn’t look like a unicorn horn, it looks more like something else that’s a little unsettling as she trots around the playground.  She is also enjoying signing choir (that’s signing and singing!) and will be involved in a few choirs over the Christmas time.  We’re not sick of the Christmas songs already, honest.

Harriet in her Gi at Karate
Harriet in her Gi at Karate

Christmas play

Damien and I were really pleased with the big reveal of what George is lined up to be in his first school Christmas performance.  One for the family album, that he tells me he chose himself – none other than a Christmas Angel Ballerina!  complete with wings and a tutu.  He’s going to look beautiful!!

Telephone maintenance

We had our first telephone maintenance appointment last week which felt bizarre.  We’d gone in to Oncology Daycare at Alder Hey on the Monday for George to have his gripper removed, as he’d been in with temperatures a couple of times over the previous days.  It had been left in in case it needed accessing again to save him having to keep having the needle into Barry (the port).  While we were there George had his bloods taken so that the Doctor could decide what dose of chemo he should change to if need be on the Wednesday.

The call was pretty straight forward apart from me flapping a little over what numbers go where on the sheet.  Ultimately his dose had stayed the same anyway but I had to mark down the information correctly to prove we’re not morons (or pretend we’re not!) and keep on telephone maintenance! no pressure.

We’re back for more blood tests next Wednesday and George will be going in to be checked over the by the doctor again.

Losing the plot

Walkies Sugar Poo!
Walkies Sugar Poo!

I feel like I’m going a little bit crazy at home now all three kids are in school most of the time.  The dog has more walks than most of the dogs on the street added together! half the dog walkers on the park know my life story and I don’t even know their names.  I must spend a fortune on cake and lunching out because I can’t stand my only purpose being housework and the weekly shop.  I know! I know! I shouldn’t complain, I know i’m lucky to be in this position, but I don’t do “nothing” very well.  I’m angry with myself for not throwing myself into decorating and cooking wonderful meals like a good little wife but it’s dull, and it’s not me.

Before anyone starts – I’m already volunteering at school, getting more involved with the PTA and have been quietly setting up a little business in the background.

The anniversary of when I think George’s health started deteriorating last year is upon us already… it was November 2015 when he first started with temperatures and was having antibiotics for tonsilitis – which is quite common in patients who end up being diagnosed with leukaemia.  I can’t believe how affected I am by the thought of Christmas approaching.  Oh I will be trying my very best to enjoy every last second this year! it’s just hard to not reflect on being in Warrington Hospital last year, and all that we / he went through in the build up to his diagnosis.

Things have been seriously shit since last November, the worst thing our family has ever experienced!  From the amount of time the children were passed from pillar to post and how poorly George was from the side effects of his treatment.  I thought that getting to this point with his treatment working, him being well, his hair growing back, him attending school… no wheelchair, no impaired sight, memory loss or any other problems… the fact that he has started to actually read real words in his little school books and he’s a flippin’ fairy ballerina in the sodding Christmas play! I thought I’d be doing the bloody conga into that school playground!  But I’m not.  I just feel scared it will come back.

The unicorn
The unicorn

It’s not the most positive paragraph to end on for now, the way I feel is going to be fairly common amongst parents in my position and I do keep reminding myself that the chances of relapse are pretty low.  For now, I’m going to continue distracting myself, by mithering my friends for brews, eating cake and walking the dog that has a better social life than me.  If all else fails you might find me trotting around like a mythical creature with a finger-horn or taking on the alter ego of a root vegetable.

Lis x

You can relax now…… erm No!! – choice of language and childhood cancer

George looking very relaxed having a blood test
Laid back Larry having a blood test

Tomorrow, Wednesday 21st September 2016, will be George’s first trip to theatre for a lumbar puncture to give him spinal chemotherapy since he started big boy’s school.  He had to come out of school today to go to Alder Hey for a blood test in case he needs any blood transfusions before tomorrow’s procedure.

I’m sure if it was one of us adults going to theatre under general anaesthetic we’d probably be in bed for the week following, feeling sorry for ourselves.  Providing all goes to plan there’s no doubt that George will be back trotting into school on Thursday.  When I say trotting, I mean, whining for me to carry him in to school because his “legs hurt”, only to spend the day running and riding bikes around with his friends with no pain at all… funny that.

I’m not really nervous about the actual procedure as we all know the drill now, particularly George whose only thoughts are “will I get a present if I stay lying down afterwards?” (this is to prevent the chemotherapy reaching his brain and giving him severe headaches if you remember).  I’m more nervous about his blood test results and where they’re up to.

George has been on reduced chemotherapy for 5-6 weeks now because his neutrophil count isn’t where they want it to be, it’s still quite low.  Neutrophils fight infection and are “good” cells.  He had a bad cough, it reached its peak and has gone now but his neutrophils have still remained low.  He’s borderline severely neutropenic… not that you’d be able to tell by looking at him.  Reduced chemo is not what we want, shite as the side effects can be, we want to feel like he’s on a decent dose to prevent relapse, but then too much chemo is what is likely to knocking his neutrophil count down! you can see the issue here.

We know that relapse whilst on treatment would be quite rare, it’s when he comes off treatment after the 3 years that the chances of it returning increases – makes sense.

I read a lady’s angry rant on a FB support group for parents of children with cancer recently.  This lady was p*ssed off because her child has just finished treatment, and other non-cancer-parents keep saying things like “well at least it’s all over” and making references to being able to relax now.  No.  Folks, be mindful that coming off treatment, depending what type of cancer they’ve had, will be worse for that Mummy or Daddy (or person themselves!) than a lot of their experiences so far – and there will have been some baaaaaaad times believe me.  Yes, their child may no longer experiencing the side effects of chemo, but oh my god, relax!?  I’m sure it was completely innocent comment, people just don’t know what to say.

George still has years of chemotherapy treatment ahead of him.  We have this dodgy blood count which will probably just be nothing, but I’m constantly on pins, looking for a limp, fretting over a temp, worrying when he doesn’t feel like eating his tea or just looks slightly off colour.  The first thing that pops up into your mind is that the leukaemia is back.

George finishes his treatment in the Summer of 2019 all being well.  I hope that, if only the followers of my blog take something from this post, that will be a few more people who will be a little more mindful of the language used when speaking with the parent of a little survivor (or ANY cancer survivor for that matter).   Yes we’ll reach milestones, yes we may now have a new lease of life, we may view the world completely differently.  But we’re not all kicking back and chilling because our child has a full head of hair, or is attending school, or their last dose of chemo has been taken.  The constant fear of relapse is always in the back of our minds, whilst getting on with life, living it to it’s fullest with those we love.

The smug dog
The smug dog

On a lighter note, this week has been a week filled with having places to be and relaxed doggy walks… yeah it doesnt sound like me, the relaxed dog walks that is.  In reality, the dog is currently refusing to walk unless it has canine-company.  I’ve somehow ended up over-socialising my bloody dog as if that’s a thing!!  She already looks like me, now she can’t cope without mates like me!  So we’ve been practising going out without half the dogs in Warrington…  Look at her face on that photo, that’s what I’m dealing with.

Georgie hitching a lift with his big brother
Georgie hitching a lift with his big brother

Kids and school-wise we’ve had 3 lots of homework, we’ve got 3 lots of reading, 2 lots of spellings, basketball training, basketball matches, karate, swimming lessons, art and craft club and running club this week.  That’s around hospital twice for George, shopping and we’re about to start viewing high schools for Oliver… I’m doing my best at empowering the kids, teaching them right from wrong, teaching the dog not to jump up and nip anything that moves or drag its arse along the floor.

Suffice to say it’s Tuesday and the gin/wine/turps is calling me….

Lis x

It’s a bloody mongrel! – New puppy for a child in maintenance

Sugar Poo
Sugar Poo

As you may have already gathered, if you follow me on instagram or had the pleasure of watching my Vlog last week, we decided to get a puppy.  When I say we, I mean, Damien walked in from work to a lovely surprise a few weeks back!

I’ll be honest, I’m no expert when it comes to training a new puppy and the first night of her crying downstairs had me questioning whether I’d done the right thing.  The turd trodden through the house, the new aroma lingering around and our pussy cat, Pip, now residing upstairs had also contributed to me questioning my sanity.  Oh yeah, the three kids and regular hospital trips must also be considered.

Yes.  I admit it.  I know if it was anyone else, i’d be asking why!?

Pip relaxing out of the way of Sugar
Pip relaxing out of the way of Sugar

When George was diagnosed with leukaemia we were told new pets at that time were a no-no, as was travelling more than an hour’s radius away from Alder Hey Children’s Hospital, holidays, being around other children that could be carrying contagious illnesses and a whole host of other things that most other people take for granted.

Since then, we’ve watched in horror as our baby suffered the devastating side effects of cancer treatment.  We’ve comforted Oliver as he questioned whether the medicine was going to work for his little brother and Harriet as she cried for me whilst I left her to be at George’s bedside.

These days however, we’re in a completely different place.  George’s treatment has progressed well, he’s attending school and we’re now able to leave the area as long as we’ve let the hospital know – progress.  I asked George’s consultant as he entered the maintenance stage of his cancer treatment whether a new pet was still off limits.  The doctor felt that providing we’re practising good hygiene at home and the puppy is fully vaccinated then welcoming a new family member has more positives to offer than negatives for us.

Sugar coming home with a teary Oliver
Sugar coming home with a teary Oliver

The kids have always longed for a doggy… I decided the they deserved this, and the fact that I’m hanging around talking to myself on Vlogs, I took the them “just for a look” a few weeks ago at some puppies.  Obviously we came home with a fur ball on Oliver’s knee and wondered what the hell do I do with it now?!

“Sugar” as Oliver named her, is a Cockapoo – a cross between a Cocker Spaniel and a Toy Poodle or a “bloody mongrel” as one lovely lady kindly pointed out to me on the park at the weekend.  She doesn’t appear to be a curly-poo, more of a silky-poo and she’s definitely a clever-poo…. I’ve taken to adding poo on to everything Sugar orientated like a real-life mushy dog owner.

We chose this particular “breed” or “cross-breed” as Cockapoos are renowned for being great with children (v.important in this house!), are affectionate, not major barkers, are clever and don’t shed or drool a lot – perfect for a novice dog owner like me.

Chilling with Sugar
Chilling with Sugar

Oliver cried when I said we could have her.  My son, who I’ve hardly seen cry since he was a baby, cried!  Harriet speaks to Sugar in her own language and is completely besotted and George thinks he’s a dog too.

Sugar (poo) is perfectly timed for me as well… i’m not one to sit around watching Jezza or spending my life tidying, our house is a home, it’s clean, but I don’t want my gravestone to read “her house was really tidy”….. so now I have a new little friend to keep me company while the kids are in school and sometimes I’ll move things around in an attempt to do housework around puppy dates and walks.  She gets me out and about in all weathers when I wouldn’t have bothered before, getting a bit of exercise all the way to the pub on a Friday afternoon.  In all seriousness though, it’s refreshing getting out to blow the cobwebs away.

Harriet teaching Sugar to lie down
Harriet teaching Sugar to lie down

She’s already sorted her toileting out which is a major bonus with George around.  With the added bonus of the artificial grass, we can wash everything away and disinfect too.  She sleeps soundly at night, can sit, roll over and give her paw…. I think I’m a dog whisperer!

We’ve been to a Puppy Party – yes this exists! we’re going to training classes and we’ve met loads of new people (of course) out with their dogs on the park, it’s like a whole new social life.  Sugar seems really happy and settled in the mad house, she’s strangely soft towards George and loves to learn new things.  We’re looking forward to many happy memories and when I say she’s great company, I mean I’m still being watched on the toilet x

(I must note that our Consultant’s opinion on whether us as a family could take on a new pet is not a blanket decision for all oncology families.  If your child is receiving cancer treatment, please speak with your child’s doctor regarding new pets as everyone’s story, situation and treatment is different).

Puppy love
Puppy love

The Familymoon in all its glory

First day at St Ives Bay
First day at St Ives Bay

The few weeks following becoming Mr and Mrs Rooza have become one of our all time favourite memories.  We’d organised two weeks “Familymoon” in Cornwall with George’s consultant haematologist’s permission.  This wasn’t something i’d ever envisaged being able to do during his intense treatment.

We usually camp but decided we’d make life a little easier not having pitch a tent etc by staying in a caravan.  We’d stayed at St Ives Bay Holiday Park last year with all our friends so knew it had everything we wanted plus this time, a sea view to wake up to in the morning.

View from our caravan
View from our caravan

We packed all of George’s chemotherapy and pain relief, high factor sun cream (you can have this prescribed by the Oncology department for anyone who may find that useful), we knew where the nearest paediatric unit was and then where the nearest Oncology unit was too.

Choosing to have “Barry”, the port under the skin, was proving it’s worth as we didn’t have to worry about keeping a line clean, away from sand, sea etc.  George was able to enjoy the beach as much as his brother and sister, we’re still finding sand in his ears now to prove it.  Another thing that was also really helpful was our pop up beach shelter, twenty quid of Amazon.  Sometimes all the running around would be just too much, so it was great for George to be able to crash out of the sun (or typically for the UK, was perfect to get under when it rained!).

The dune of doom
The dune of doom

Hayle Beach was as beautiful as we remembered, the kids enjoyed boarding down the dunes, building sandcastles and paddling in the shallows.  Picnics on the beach each day made saved us a fortune and a couple of beers whilst we were down there made the honeymoon with 3 kids a little more relaxing!

Oliver is less of a paddling in the shallows man, and more of a bodyboarding in the waves kind of guy.  Damien and Oliver boarded most days whilst I watched excitedly…. or maybe I sunbathed….

Oliver bodyboarding
Oliver bodyboarding

Obviously it poured down on a couple of days, we had to be reminded that this was not the Mediterranean cruise we booked.  Being surrounded by sunburnt Northerners wasn’t enough no, some classic Warrington rain was sent our way as a cursory reminder to appreciate the sunny days.

 

Harriet and "Catherine"
Harriet and “Catherine”

What we saved on eating sandy butties on the beach each day, we basically paid the arcades’ overheads for them to remain open until next season.  Harriet spent about fifteen quid “winning” her Catherine and Claire teddies which I suspect had been in the site’s gift shop since the names Catherine and Claire were trendy for young children.  Oliver spent most of his time being a lurker, waiting for some poor kid is robbed of their last 2p at the 2p machine… only to jump straight on and make a killing – and what shall we do with 48p’s worth of 2p’s? let’s put them all back in again!  Georgie was happy squirting water at duckies or just blatantly buying sweets with his spends and gorging on them.

 

Paradise Park
Paradise Park

On another grim weather day we donned our cagoules and hit the local bird of prey sanctuary, Paradise Park, and was pleasantly surprised.  It helps that Harriet absolutely loves birds.  We avoided taking George into the aviary where Oliver and Harriet fed little parakeet thingies, not only because it’s like a scene from “The Birds” and he’d probably freak out but just in case there was anything that would make him ill.  The kids met penguins, owls and there were even flamingos walking about – beats the seagulls as big as dogs that we were used to back at the campsite!

Kite flying
Kite flying

The children flew kites and the big boys enjoyed the surf on the very windy days.  Harriet would run like a maniac in the wind and George and I would cuddle up and appreciate our windbreak and beach tent.

We changed it up with some rock pooling at Godrevy on the first week, it wasn’t as successful as last year but just as much of an adventure.

Rockpooling
Rockpooling

Oliver and Harriet liked running around the rocks and coves while the tide was out and splashing in the clear pools while George would sit with his little net in a rockpool “fishing” like a gnome.  Some standard wave jumping as the tide came back in violently before we did the five minute drive back to our site for some tea.

One beautiful evening we walked up to the top of the dunes to watch the sunset with a picnic blanket and a bottle of champagne and glasses.  The sky was perfect, it was lovely and still and the ocean was calm.  We opened the bottle, let out a little cheer, sipped the froth from the chilled bubbly then promptly had to help Harriet squat in bushes while she went for a p*ss.  The kids ran around kicking sand at us, George screamed when he didn’t get his own way and Oliver went missing.  You can imagine…. but of course we smiled for the camera anyway and pretended it was hours of romantic bliss rather than the 7 minutes approx.

 

It wasn’t quite a Royal Carribean Cruise but we did manage to book ourselves on a Mermaid Pleasure Trip in Penzance.  The skipper was lovely, he let the children drive the boat, they pulled lobster pots, we saw seals at Seal Cove and got to see St Michaels Mount from the water.  What made the day extra special though was the small pod of dolphins that came swimming along side us… The guys on board put a device under the water with a speaker which allowed to listen to the sounds of the dolphins communicating, it was so special and absolutely made our day.

The skipper chatted to George and found out his love of the emergency services.  He kindly arranged for us to visit RNLI Penlee Lifeboat station in Newlyn a few days later for us to go aboard their Ivan Ellen lifeboat.  Coxwain Patch Harvey, was lovely, taking time to chat to the children about the boat, how it rights itself in 3 seconds if it ever overturns!? showing us the engine room and letting the children sit up at the bridge… it was humbling to learn how many of the local fishermen and people in the community run the lifeboat station voluntarily!? and are on call night and day in shifts… what amazing guys taking time out to help people, risking their own lives, so selfless.

We crabbed in Penzance too but spent most of our time seagull dodging and came away stinking of the bait.  Kids enjoyed catching seaweed though!

The second week of our holiday got even better when our good friends arrived with their children!  not only was it fresh faces for the kids to play with but there’s only so much of my crap Damo can listen to.  The kids were so happy to see each other and it was nice to have a wine buddy for after we’d hit the waves 🙂

There was more dune surfing, fits of laughter, beautiful sunsets, shooting stars and a day trip to Falmouth where we got to see the Red Arrows display! George spent most of it with his hands over his ears as usual.

The holiday was perfect and just what we needed, with the comfort of still being in the UK for George’s sake but still magical and memorable.

This evening George is in hospital with Daddy being checked as he’s spiked a temp for a second time since we’ve been back.  We’ve been in for a consultant appointment twice too to have his chemotherapy altered as his white blood count isn’t recovering quite as fast as we’d like.  The doctors aren’t concerned and feel he has a lingering virus (he’s had a bad cough for 3 weeks now) so have reduced his chemo to allow his own body to work it’s magic.

Georges wisps of hair
Georges wisps of hair

George’s next consultant appointment is on his first week at big boys school! I can’t believe we’re at this point already, it was something I couldn’t even compute not so long ago. His first day is going to be particularly poignant in this house, I’m sad he’s not going to be my little buddy at home any more, I’m worried for him like all the other parent’s will be for their babies… but he shouldn’t be having to undergo treatment for cancer, it’s not fair.

We’re hoping the next few years of maintenance will be kind to George and that we can continue to have more happy times as a family than difficult ones.  We’re made up we got out 2 weeks familymoon and for now we’re enjoying the last days of the holidays at home together around hospital trips and preparing for all three children going to school… looks like George might even have some wisps of hair for his first day too!

xx

 

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

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