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

Maintenance Phase: Doodle does Alder Hey, half term and who taught them these hymns!?

Dr Keenan checking Doodle over
Dr Keenan checking Doodle over

Last week George officially moved on to a part of maintenance that allows us to spend less time at the hospital.  We still have to visit just as much as he still needs his blood tests, but we don’t need to hang around as much for consultant appointments.  Appointments with the doctor are still fortnightly but we now have every other appointment over the phone.  We discuss George’s blood test results, how he’s been in himself and they then tell us what chemo dose to adjust to…. feels like a lot of responsibility but really, we’re writing on a document what the new dose is, and following that.  I believe this isn’t something that’s available to every family (before any oncology friends/followers wonder what’s going on!), it depends on diagnosis, treatment and the stage your little one is at, I’m also not sure it’s something that’s offered at every hospital either.

George’s “good” cells are doing well at the moment so Dr Keenan increased his chemotherapy dose again.  They need to be suppressed a little (with chemo) to make sure any leukaemia cells don’t have a chance to multiply.

Blood test with Debbie
Blood test with Debbie

Everything else is the same with treatment with regards to going to hospital when his temperature gets to 38 degrees, he still needs his port flushing monthly, has theatre every 12 weeks for spinal chemo and at the end of the day, if there’s anything we’re concerned about, we go back to fortnightly doctors assessments or drop everything and go if it’s serious!

It’s the end of the George’s first school term, Harriet’s first term in Year 4 and Oliver’s last ever school year in a primary school! Treatment and appointments have only really taken George out of school for a total of 2 days as we’ve managed to get him back in for a half day after his appointments.  There’s been a week’s worth of a medicine he had to take as there was a suspected chicken pox outbreak but other than that, he’s not been sent home ONCE since starting in reception… he’s not had any temperatures during school time (we’ve had a couple of weekend visits) so we couldn’t have hoped for a better start to big school for Georgie-Roo.

George and Doodle even got to have a mooch around pharmacy!
George and Doodle even got to have a mooch around pharmacy!

Just as we managed to get into the swing of juggling hospital visits, homework, spellings, reading, after school clubs and classes etc for all three kids, we had the pleasure of George’s class dog-teddy, Doodle, coming home for the weekend.  Those with kids who’ve experienced a class teddy before will understand what a joy that is!  And for added pressure, we were the first to have Doodle this year so had to set the precedent…. you’re supposed to record/photograph your weekend’s adventures, people take him on their holidays, he’s been to Lapland in previous years for God’s sake!  How were we going to make a weekend in pjs scratching our arses look like an educational adventure?!

Well…. we didn’t! but luckily for Doodle, he wasn’t due back in until the Wednesday and George was due at Alder Hey the same day.  So off we went badgering every member of staff we dealt with in Oncology for a photo.  Thank you to the lovely team for being so photogenic 🙂 you know you’ve made it in life when you feature in the Rooza blog 😉

Weighing in
Weighing in

It’s now half term and I won’t know what’s hit me with all three of the little loves around.  We’ve got lots to celebrate as all three of them are doing great at school… it’s also D-Day for the final high school submission for Oliver, who we now know passed a grammar school entrance exam – you think choosing a primary school is a challenge? wait til you’re up to high school choices with over-subscription, catchments and feeder schools to deal with <insert arrrggghhhh face here>.

We’re kicking off half term, leaving Daddy and Sugar behind to visit our cousins in St Albans and hopefully will hit the zoo.  Wish me luck for tomorrow on the M6 with a gang of kids whose current favourite pass time is worse than them all arguing! They sing out of tune HYMNS full pelt together!

Happy half term folks

Lis x

A 400 mile bike ride for George, fattening him up and chicken pox alert

4 guys 400 miles
4 guys 400 miles

The support for our family is still going strong this week!  A team of the kindest (craziest!?) guys are spending three days cycling 400 miles to support a charity that hope to send our family to Lapland to visit Santa.

Rays of Sunshine grant wishes for youngsters suffering serious or life-limiting illnesses and have agreed to grant George a wish in the future to meet the real Father Christmas!  Paul Wilson, Gary Cook, Rick Wright and Neil Stokes are setting off this Thursday along with their service driver, Lee Paterson and donating all funds raised to Rays of Sunshine.

The guys have spent the last few months training and raising funds to give to the charity, through injuries and illnesses themselves.  I’m still finding it hard to accept everything people are willing to do for us!?  We’re very proud of all them, as I’m sure their families are too.

Their efforts have also been featured in the Warrington Guardian and for those who also want to donate, you can visit their JustGiving page here.  Unfortunately we won’t be visiting Santa this Christmas, as George’s journey through this only began in January this year.  However with at least 3 and a half years of chemotherapy everything that goes with it in the treatment for leukaemia ahead of George, we will hopefully get to accept his wish in the near future.

We feel so lucky to be part of such a supportive community with selfless, caring people wanting to support us through every step of the way.  Thank you so much to everyone involved and to all those have been by our sides since this all began.

Tomorrow is the next blood test, consultant appointment and chemo adjustment if necessary at Alder Hey for George.  It flies around doesn’t it!  We’re hoping for a weight gain as George’s doctor was concerned with how much he’d lost over the last few weeks.  He’s been stuffing his face this week though so I’d be surprised if he has lost any more.

We’re on chicken pox alert at school at the moment as another little one has come out with them, they’re not in George’s class but their sibling is, who hasn’t had them before either.  The parents and the school have been fabulous and were well on the ball with it, informing me so that I could liaise with the hospital.  The little boy’s Mummy even kept him off school worrying about George, when her son isn’t actually showing symptoms…. just another example of how caring people are.   Following a chat with 3B Daycare at Alder Hey we were told that, at this stage, as long as George hasn’t had direct contact with a child with chicken pox, then we should all carry on as normal.  At the end of the day chicken pox has a long incubation period of 7 – 21 days and everyone can’t start keeping their children off, nor should we keep George off as it could go on forever!

Chicken pox for a child with leukaemia can be serious due to being imuno-compromised whilst on chemotherapy.  However, as long as we’re aware when it’s knocking about, we can keep an eye out for symptoms in George.  George isn’t immune to chicken pox as he’s never had them and being in school, there’s a pretty good chance he’ll get them at some point.  At the moment, if he came into contact with someone carrying them he’d have antibiotics to help him at home, then if he contracted them he’d be in hospital for around a week to be monitored and given medication.  This is a risk we take with him being in school but are confident that it’s better for his all round well being, to be in a school environment, having the chance to develop friendships and grow up with his peers.  At this point everyone around him is so well informed and attentive, we’re confident he’s in the right place.

Stroll around Rixton Clay Pits
Stroll around Rixton Clay Pits

So, if you follow us on the old social media, we’ve not had too bad a few weeks with some nice Autumnal walks with Sugar, viewing high schools for Oliver (argh!?) and cosy nights in with the kids.  We have tomorrow’s hospital trip to get out of the way tomorrow hopefully with some positive news, then it’s Oliver’s 11th Birthday on Thursday as well as the lads starting their 400 mile ride.  I’ll follow up the blog with news from tomorrow when I can, and if you don’t already follow us elsewhere then you can do on Facebook hereon Twitter or Instagram get on it! Sometimes it’s easier to share a quick photo or note of how we are at hospital than write War & Peace on here 🙂

Good luck to Paul, Gary, Neil and Rick! Don’t get too saddle-sore, thanks to Lee for being their service car driver, just as important for it all to happen, keep safe guys! x

Neutrophils, Optimus Prime and a Character Award

Applying numbing cream
Applying numbing cream
Just a quick one tonight to let everyone know that last Wednesday’s hospital trip was okay.  The blood counts that were concerning us have now really picked up, but to the point that they’re too high so the chemo has been increased hopefully just enough to get the counts to the ideal point.

George bowled us over with his courage and bravery from being nil by mouth, having “Barry” accessed with the gripper to going under general anaesthetic and coming round again without a tear.  I’ve got a Vlog to upload of that day which I’ll put up later in the week.

He had his numbing cream on before we left home and wasn’t allowed anything to eat while Oliver and Harriet sat eating their breakfasts.  Daddy took George to hospital while I gave Sugar and quick sprint around the park and took Oliver and Harriet to school.  I must be honest, I had another wobble on the way to hospital as there was a bloody ambulance on the M62 blue lighting all the way.  It took me back to 5th January this year when I had to follow the ambulance with my own son in it to Alder Hey the day before he was diagnosed.

I made it to the hospital just in time for George going into his consultant.  It was a relief to hear that his neutrophil count had picked up, they were just higher than the doctor would like this time so the chemo has been increased now to bring them down again.  The doctor was a little concerned at George’s weight loss as he’s lost 1.5kg in two weeks, that’s quite a lot for a little person.  It’s been put down to the fact that he’s started school and is much more active.  I have had a chat with his teacher since to double check he is actually eating his lunch which she assures me he is, he’s a great little eater.  The concern will be if he’s lost weight again, although I’m not sure what it means for him if he has… just another waiting game.

Gripper going in
Gripper going in
So following the clinic meeting with the consultant, we went through the motions that we’re all now prepared for.  Karyn, the lovely nurse who has never missed “Barry” with the gripper was on, so that was really straight forward and relaxed.  We were called to the theatre waiting room where George watched Toy Story on the TV then blew me a kiss goodbye, and off he went for his sleep and lumbar puncture for spinal chemotherapy.  He has this spinal chemo because the oral chemotherapy that we give him at home doesn’t reach the spinal cord and fluid around the brain.  Leukaemia cells can travel into the fluid that surrounds the spine and brain, so during the maintenance phase, he has to have this procedure via lumbar puncture every 12 weeks.

Laying flat for lunch
Laying flat for lunch
After his theatre trip, he was wheeled back up to the ward, staying lay flat as directed for about an hour.  He was absolutely ravenous so ate half of my butties before his own picnic arrived along with his special request of chocolate ice cream!  The kitchen really look after them.

George had been really looking forward to going to theatre because A. he got to have a sleep and B. he gets a present for being brave.  Mummy hadn’t been very organised so he got to choose which Transformer he wanted from his bed on my phone that day.  Thank you Amazon Prime, Optimus Prime arrived the next day 🙂

Optimus Prime
Optimus Prime
So all is good in the hood at the moment, we’re back at Alder Hey again on 5th October all being well, so we’d better get fattening George up in the meantime!

Georgie was straight back to school on Thursday and on Friday I had another little emotional moment, but for a lovely reason, he came out of school with a Character Award for Courage… for joining in with a dance lesson even though he wasn’t sure he’d like it!  Bless him, cracks me up.

What a character
What a character
Just another quick THANK YOU to our lovely neighbour Laura (not Ian, he can’t be arsed reading the blog..I’ll Vlog another time!), for having Sugar Poo over for doggy play dates with Teddy their sausage dog while we’re at Alder Hey.  You’re a star! 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

George’s latest chemo and Team Erin Cross

Garden fun for Harriet and George
Garden fun for Harriet and George

With Wednesday’s five and a half hour treatment out of the way, we were pleasantly surprised that George returned home acting like his usual self – cheeky and wanting to play outside.  We’re still only a few days in from that treatment and know there’s still time that his counts can dip and he can get a temperature or any of the many other side effects.  Any initial sickness hasn’t happened though, just a tummy ache on Wednesday night – maybe the anti-sickness drugs did the trick?

Here is George and Harriet after George’s full day in hospital having chemotherapy on Wednesday this week.

Daddy did the hospital run that day and I stayed home with Oliver and Harriet to try to keep a bit of normality.  George was very brave having “Barry” accessed and just cracked on with his drip in all day.  He also bumped into Erin and her Daddy whilst in hospital and caught up on the latest fundraising to help get Erin to America for her life saving treatment to prepare her for a bone marrow transplant.  You may remember I posted early on when I started this blog about a family we met at The Joshua Tree when George was first diagnosed, that I’d felt relieved Damien had met another Dad he could chat to – sadly Erin has since relapsed and the family just found out their only hope for their little girl is to receive Car T Cell therapy to get her into a position to receive a bone marrow transplant.  On Wednesday I think the fundraising had only really just got into the swing of things and the £100,000 they needed seemed so far away.

Erin Cross
Erin Cross

Today, by the power of social media and the generosity of so many people, the target has been smashed and they are at almost £116,000.  I am elated.  For Erin, for her Mummy and Daddy, for all the people that love them and for all the people who donated – every one who donated is a hero in themselves.

Some people disagree with how much I put on my blog and social media, how much I share my thoughts and feelings about what our family are going through.  Without social media right now the outlook for Erin and children alike would not be such a positive one – this is because her family have put out there what is happening to their child, how they feel and opened up there hearts to anyone would listen.  I guarantee you would do the same if you had to walk in their shoes.  If anyone would like to add to their fund, as Erin’s trip to America for treatment is not likely to just be a one off, you can donate here.

George taking his oral chemo himself
George taking his oral chemo himself

George returned from hospital on Wednesday with a whole bag of goodies for the Macmillan nurses when they come to give him his daily chemo in “Barry” at home for the next four days.  George is also back on his mercaptopurine medicine (the one he calls his chocolate medicine) which is his chemotherapy we administer now for the next three years.  He also has anti-sickness and morphine to counter act the other side effects of cancer treatment.

Oliver chilling
Oliver chilling

We’ve been fortune enough over the past few days to enjoy some sun and high temperatures in the North West!  Our beautiful garden has been made the most of by all of us and the last few jobs are almost there.  The awning has been out in all it’s grey and yellow glory, protecting Georgie from the sun and protecting all of us from the odd rain shower – come on, it is Warrington after all.

This morning I noticed the wee George had in his potty looked a funny colour. We’d been told that bladder damage is a side effect of the Cyclophosphamide drug he’d had so had to take him straight in if there were any changes to his urine.

And so the comedy sketch of getting three reluctant kids dressed, a suitcase packed in case we were kept in and all out of the door as fast as possible began.  Luckily our volunteer from Home Start was here when I made the phone call to Alder Hey which meant she could at least prevent the kids from Homer-Simpson-strangling each other while I tried to get myself ready.

Olly and Imy’s Mummy, Nic, to the rescue again, where I dumped Oliver and Harriet on the door step and sped off with George.  I did have a pang in my chest en route and was a little upset for the older two children but was also thinking about these side effects for George and whether might lead to something serious.  However the kids had been made up with getting a play day with their friends and George had was happy to be going to hospital!?.

George and his nurse taking blood from Barry
George and his nurse

After having his obs taken, his pee tested and being checked over by Kev, the ANP who always makes George giggle, he was prescribed some antibiotics for a UTI (water infection) and had bloods taken to check if he needs a transfusion.  You can see him there in a photo casually perusing the Argos catalogue he likes to carry about with him!

We were allowed home by mid afternoon, though almost needed a snorkel or oars or something…. the storm that occurring in Liverpool was of apocalyptic measure.  The good old sperm whale (C4 Picasso) saw us through though and we made it back to collect the children and stayed to have a quick brew…. a quick brew that lasted about 4 hours that is when our friend also joined with her two!

Why say it in three words when you can say it 3000 though?  that’s my motto!

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

Gratitude in all shapes and sizes

So the last few weeks have been busy in our household, I thought i’d be sat at twitching since I’ve finished work but I’ve come to appreciate what amazing friends we have and difficult as some days may feel, there are always brighter moments ahead.

Here’s my list of what I’ve felt grateful for in chronological order –

SSmiling wildly outside Lidl
Yay for my day out!

1. I’ll start with the silliest one,  forget the brave cancer-fighting 3 year old, it’s my first solo trip to Lidl in a long time!  I headed to my supermarket of choice in great anticipation the other week.  I was slightly disappointed firstly, when I realised I had to park in a non-parent bay and walk an extra 10ft to the store, then, to my horror, I’d forgot my trolley pound and had no change… this is a nightmare situation in a Lidl / Aldi type store.  Have you ever asked the militant check out staff for change??

I bought loads of veg I have no idea what to do with because it was cheap and a million kiwis for 12p, then browsed the shovel / tuppaware / clothing in transparent pvc bags aisle, for things I must need.  With my undersized trolley over-packed with interesting veg and not one meal amongst it all, I ploughed on.  With one draped over the top to avoid a kiwi avalanche and shin injuries from the extra metal rack on the lower part of the trolled, I headed for the joy of the checkout queue.

I did the usual obligatory letting a bloke behind me with a pint of milk jump the queue, then the old lady with a loaf, then a woman and a baby with small basket and hold on a minute…? eff you to the next person, i’m avoiding eye contact.

Over-filled shopping trolley
Balancing act

Then, thinking I could stealth pack because I was child free, made the mistake of opening the two bags for life to fit perfectly in the trolley.  Only my shopping didnt fit perfectly did it? and the checkout guy was on a mission to prove his worth to Lidl.  So I ended up running back and to to the bloody packing shelf area with the odd cauli, multi pack of crisps and clinking bottles of, errr, “water” whilst desperately avoiding eye contact with Mrs One-bag-of-Sugar behind me.

I weaved my metre high shopping load back out of the store, smashing into some seasonal bedding plants en route and denting my own car on arrival.  I was satisfied with my first lone shop and grateful that it could have been ten times worse with a 3 year old with no immune system – roll on next week! might go mad and hit Aldi.

Simone Mollie and George
George having the tour of Mollie’s new room

2. The next day having bought a load shopping that should really be eaten fresh, George and I set off for our friend’s Simone and Mollie’s for lunch.  Mollie had moved to a new house so it was exciting to get the grand tour and see Mollie-Moo’s gorgeous new bedroom, complete with her very own fairy door!

Mollie and her fairy door
Mollie and her fairy door

Mollie’s Mummy, Simone, looked after us with tea, juice and biscuits and also treated us to lunch whilst I waffled and the kids embedded play doh into the new furniture.

The new house was proper posh and George is already mithering to visit again soon – you can see just how much here!

 

3. George received a parcel containing something he’d wished for the following day!  You can read more about his beloved pink sleeping bag with fire engines on here.  But what also arrived of Uncle Paul and Aunty Amanda was this beautiful story of the Hare who lost her Hair a highly recommended and emotional read for normalising hair loss and treatment for childhood cancer, or any cancer for that matter! it would be a good book for children who’s parents will be receiving cancer treatment too.  I plan on officially reviewing the book in due course so keep your eyes peeled.

Harriet holding a pile of fabric
Harriet and her new fabrics

4. As a treat for Harriet we’ve been to a sewing class and she’s been enjoying sewing since, so it was lovely to receive a nice treat in the post of Nanny Jane last week. Harriet received some new fabrics to practice with – the new range of bags will soon be in stock so watch this space!

Lisa Karen and Kath pulling silly faces
Weirdos

5. Mummy managed an impromptu tea out with some of the girlies at The Black Swan in Hollins Green, Warrington for food and wine.  It was just what the doctor ordered to offload a little and have a catch up.

6. Daddy had a little break last week too and went to the dirty pub with his Daddy mates… the lush rolled in at a rocking 8pm sozzled and fell into bed snoring, that’s pretty much the end of that story, but at least he got out for a few hours!

George and Seth enjoying ice lollies
George and Seth in the sunshine

7. Georgie then got another play date the following day to allow Daddy to suffer in silence (and also cook us a full Sunday roast!). He visited another one of his bestest friends, Seth!  They enjoyed ice lollies in the Spring sunshine and played beautifully all afternoon.  I think they only paused for drinks and biscuits then disappeared again.  It’s wonderful how he’s still managing to keep up with his little friends (of course while Mummy also gets to drink brews and chats).

8. I had the pleasure of witnessing my Oliver dressed as Monet explaining Impressionism in his school play this week.  I was a very proud mummy waving eagerly to him as he coolly smirked and just raised one palm to me…as in “alright mum, chill”…

9. We were grateful to receive a donation towards George’s new bed from some of our lovely friends (you know who your are) the Mark Gorry Foundation.  George is currently sleeping in his cot bed and whilst is fine for him for now, it’s not ideal when either Mummy or Daddy are sleeping in the same room.  I dread to think how many nights we’ve spent in the foetal position squidged in with him so that the other can get a full night’s kip!  we certainly both have the back ache to prove it!  MGF heard our story and sent us some pennies to help us get a single bed with a pull-out bed underneath.  This is going to make such a difference to all of us, we can’t thank them enough.

The Mark Gorry Foundation, I remember for the “Love your Balls” campaign, after a close friend of mine had the pleasure of working with Mark.  She helped raise awareness for the cause following his death from testicular cancer.  MGF‘s goal is to improve the understanding of the disease and raise awareness of the signs and symptoms of Testicular Cancer.  We’re very lucky that their fundraising helps any families who are affected by any type of cancer.

Sunset over Woolston
Sunset in Woolston

10. Not one to miss the bigger picture, I’ve really been appreciating the Spring in the air! <cue Damien’s eyes rolling> the sunsets have been breathtaking, and god i’ve missed the mild weather!  I didnt realise just how much I must have been hibernating since George’s Leukaemia diagnosis.

I love the sound of the birds in the morning and looking out over Woolston Eyes Nature Reserve behind us when I open the curtains.  The Spring flowers emerging where i’ve chucked old “dead” daffodil pots from last year in the back and even the amorous wood pigeons that the cat chases…  it’s time we start getting outdoors more when Georgie can!

11. Good old parents evening! Nothing like a parents evening gloat… all positive and both doing great… more importantly Oliver and Harriet’s schooling doesnt seem to have been affected by their sometimes turbulent home life.  Thank you again to our lovely friends who have helped us out so much by dropping them off and picking them up at the drop of a hat.

12. I’ve kept everyone up to date with his treatment, but this little boy’s strength is unbelievable.  Even George’s doctor was surprised over how well he was doing at his appointment on Friday.  He was in theatre for around 2 hours and away from us for 3, he came around from anaesthetic calm and even though he was allowed sit up if he wanted, he refused saying he didnt want a head ache.  This is a far cry from the initial weeks of upset.  I can’t believe how resilient he is, how patient he is or how brave he is.  He’s doing so much better than I ever expected.

 

So it was meant to be TEN things to be grateful for, but I like to be different 🙂  Harriet has got her friend visiting this week as she’s been keeping up with her little jobs with minimal meltdowns – here’s to another couple of weeks of positivity xx

Alder Hey Oncology – Phase 3 Week 3 of treatment for Acute Lymphoblastic Leukaemia

So after a lovely few weeks off visiting Oncology at Alder Hey, George went to clinic in a great mood. It’s like the weeks off leave him totally refreshed so we’re grateful for the gentle phase of treatment.

Oliver had got off to a bit of a rocky start in the morning when he appeared pastey looking and complaining of stomach pains. NOT what we needed. Given it was only mentioned when it was time to leave for school and not for the whole time he’d played a computer game – off to school I booted him, with some reassurance i’d come and get him if need be and gave the office a heads up.

George had been being nil by mouth since the night before because he was going to theatre. Oliver and Harriet bless them have to eat their breakfasts like Ninjas in order to not get rumbled by Georgie Roo. It was only by the time it was about 1 – 2pm in the day he was starting to say he was hungry so he didn’t do too badly. We don’t torture him, so also don’t eat… which is not the cleverest idea! By 11am i’d already started flagging, the sneaky Actimel i’d necked in the car wasnt cutting it anymore so it was caffeine all the way!

It was great to hear George had put on 100g as they’ve been keeping a close eye on his weight loss. If he drops much further they’ll be thinking of inserting a feeding tube. Bizarrely, I’ve felt like as soon there’s a feeding tube in, he’ll suddenly look ill… and how are we going to get his salamis down it??

George holding playdoh
George made me a cauliflower whilst waiting

We met with George’s Doctor, Helen, who was really surprised to see him get out of his pushchair, playing with a plastic tea set and offering us all a brew and toy cake (the irony). She felt he looked really well and was even more impressed with what looks like a full head of hair! we know he’s lost loads as we keep finding it everywhere (can’t blame the cat all the time) but overall, you don’t look at him and think he’s bald. She said about 1 in 100 children don’t lose their hair but not to get too comfortable as the treatment in the next phase in May is much more aggressive.

That’s another thing George has not quite fell in line with, his bloods at diagnosis weren’t actually showing he had leukaemia like most other children’s. There were only 2 other cases in the whole year last year – he’s a little marvel.

Dr Helen Campbell did say that they are having to take him off his chemotherapy medicine (Mercaptopurine and Methotrexate – the ones we give at home) for a couple of weeks as his blood results are too low. This is all part of normal treatment I believe, they make adjustments based on how his body is responding. They’ll do another blood test and once his bloods recover, he’ll go back on the chemo.

We had a good old chat about the central line and what kind would be best for George. We were torn between the options as one will mean no more needles but it can’t ever get wet (think baths, showers, swimming, paddling in summer) and the other means it’s accessed with a needle but he’d be able to do most things that involve water. After the debate, we went for the port under the skin. We know its the ripping the adhesive tape off, squeezing his arm, the tourniquet, being woken in the middle of the night that’s contributed to the traumatic experiences with cannulas – It’s not necessarily the needle itself.  We chose the Portacath option.

George crossing fingers
George trying to do “fingers crossed” that he’s next!

George needs this central line as the next phase of treatment involves more intravenous medication and regular access to bloods etc. We’re looking forward to getting May and June out of the way.

After hours of going back and liaising with different medical professionals, we found a surgeon available who was available to insert his portacath and give him his spinal chemo too. It just meant we were on an emergency list rather than a scheduled one which meant some more waiting. I ended up leaving the hospital at 2.15pm to head to collect Oliver and Harriet from school… still nil by mouth but wired on caffeine (I did go straight to Subway for all those people who are about to text me).

bag and pink sleeping bag
Bag packed and not forgetting the pink sleeping bag!!

George had been given a pre-med before surgery today for the first time to save the anxiety he had with the anaesthetic mask and it worked a treat! he was flat out for the anaesthetic and went off with no problem. While he was down the nurses told Damo that George was going to have to stay overnight for pain relief – something we hadn’t anticipated, the pain or the overnight stay. So I drove to get the kids, nipped home, packed a bag, grabbed the pink sleeping bag and drove back down the M62 AGAIN.  It feels like I could get to Alder Hey with my eyes shut these days! (not recommended).

Oliver, Harriet and I arrived again and George was still in theatre – the waiting is absolutely awful, i’ll admit. But sadly I needed to get in and out of the place as Oliver was flagging and obviously we don’t want to be passing anything on to all the already poorly children.

We’d got all the way back to Warrington, been for a KFC (couldn’t be arsed cooking) and gone home again and George was STILL in theatre. Poor Daddy 🙁 he was in for about two and a half hours. He was still quite drowsy when he came to and just asked “What’s this?” about

George asleep with dressing on neck
Flat out and high on morphine following portacath insertion

the dressing on his neck and chest. He didn’t mention it again!  he had something to eat and went back to sleep.

Oliver went straight to bed without eating last night with his sick bowl/the mixing bowl and said the “unhealthy food is making me gag”, I’m a great mother aren’t I?

This morning George has just been waiting on having his cannula out, he’d needed it in case he needed a blood transfusion and then he’s ready to go. Daddy just sent me this photo, he looks like a Gallagher – both the Oasis type and the Shameless type.  He assures me he’s not grumpy, just concentrating on the tv.

George in a pushchair
George ready to go home

Mummy is looking forward to cuddles with Georgie this morning and maybe i’ll let Daddy have a little snooze…

Joshua Tree Family Day – Feb 2016

We recently found out about The Joshua Tree – a wonderful charity who support families affected by childhood cancer.  They set up 10 years ago when their little boy, Joshua, was also diagnosed with Acute Lymphoblastic Leukaemia (like George).

So far they have provided us with emotional support through 1-2-1 visits at home and also invited us to their family days in Northwich, Cheshire.  It was felt really beneficial to be around other families who are experiencing the same challenges as and no doubt emotions as us.

Oliver made a friend the same age as him who is now in the maintenance phase of his treatment.  He’s a lovely boy who Oliver is looking forward to seeing again next time.  It must be really comforting for Oliver to see his new friend leading a normal, happy life.  I’ve felt Oliver has been particularly worried about George’s diagnosis.

Harriet and Oliver in aprons giving a thumbs up for baking
Harriet and Oliver ready to bake

Harriet was in her element being crafty, creating a Mother’s Day card for me and both the older children got stuck in baking too.

There was even a Lego Police Helicopter there that George homed straight in on.  He loves Lego and the emergency services 🙂

I think Damien having the chance to chat to other Dad’s was really helpful.  I love a good chat wherever I am but Damien’s not one to walk up to someone and start a conversation – the lovely Lynda from the Joshua Tree was great at introducing families to each other.  I got talking to a few other mums whose children are also being cared for by Alder Hey so found out a few tips and about support groups I was previously unaware of.

All in all a lovely positive day out for all of us 🙂