The Shitmas Tree | child on cancer treatment at Christmas

The Joshua Tree Christmas party
The Joshua Tree Christmas party

Maintenance Phase – December 2016

We’ve had stints in hospital over the past few months, treatment is ongoing and George is doing really well at the moment.  Parents evening confirmed he’s shining as brightly as everyone else.  By the sounds of things, receiving daily chemotherapy doesn’t seem to be affecting school life for him too much other than his low immunity.

George goes into theatre under general anaestethic next week for spinal chemotherapy to be administered via lumbar puncture.  We were lucky in that the doctor allowed us to adjust his schedule to bring the procedure forward, otherwise he was booked in for this on December 28th…

Christmas Decs

Here’s a dull fact for you.  Since my remotely-stable adult life began, I’ve collected Christmas decorations from nice places I’ve visited.  I’ve got the baubles for the years the kids were born plus festive ornaments from various holidays and special places we’ve been.  I like to decorate the tree with the kids and tell them the stories behind each one.

Bear in mind I have the three children, and we all know how kids like a homemade decoration! be it a creepy looking Santa or Rudolph the red nosed turd with sticks in, it wouldn’t be Christmas without some indistinguishable handmade creations coming home from school.

Over the years, in a tangle of Christmas lights, I’ve told the deep and meaningful stories behind our mismatched decs, and cooed over the cute homemade creepy angels.  Then discreetly shoved them deep into the Christmas tree out of sight so not to clash with Christmas colour scheme. Ho ho ho!

The Shitmas Tree

Well this year, as we all know, is a very different Christmas for our family.  This year we had a sharp reminder how we should be embracing every dam minute with our children, and proudly displaying every ugly decoration they’ve lovingly created.  I’ve bought a little tree that sits in the window, proudly dressed in all the decorations the kids have ever made and all the baubles I’ve collected from our travels… the unique little tree tells a story in itself.  This year we have our Shitmas tree! 

Our tree of memories
Our tree of memories

Now I’m not saying the tree or it’s decs are shite.  The collective noun for lots of random things where I come from is ‘shit’.  “Get your shit together” “pick all that shit up off the floor”… and so our Shitmas tree has been born.

The L word

Life has thrown some huge challenges at us this year, it began unfolding last Christmas with George falling ill and subsequently being diagnosed with Leukaemia.  Followers of my blog from back in the beginning will have witnessed what a roller coaster it has been.

Like many people who receive a cancer diagnosis, battling through can be a huge awakening for many.  It’s understandable what a change the diagnosis makes to your outlook on life, at the end of the day, it feels like a second chance has been given.  Certainly for us with a childhood cancer diagnosis, our perspective has been completely altered – we know what real fear is and anything else just seems like nothing to really get in a tizz about.

I have come to realise that without life challenges, you never really know what you’re capable of – as an individual, or as a family unit.  Of course, never in a million years would I have wanted this lesson to have been learnt through my children’s suffering but alas, this is the card we were dealt.  Now I’m not going to get all philosophical on you, or worse still start posting crap memes, I just want to share what I’ve learnt about life in the past 12 months.

Lessons this year:

I’ve learnt that children are bloody resilient  I can tell you now George will be itching to get back to school with his friends following theatre next week.  I however will need to lie down afterwards!

I learnt that there are always people with a bigger struggle than me Every day i’m reminded that so far we’ve gotten off lightly.  Yes, in comparison to Gertrude and her child with a snotty nose, we have had it hard, but honestly things could be much more challenging.  We hear of, and follow, fellow oncology children whose treatment isn’t working, or where the bastard cancer has come back…. every couple of weeks there’s another.

I learnt what true friendship is.  It’s someone holding your hand walking around Sainsbury’s the day before Christmas Eve to make sure you have some kind of Christmas dinner.  It’s coming home from the oncology ward where your child is a patient to find your friends cleaning your house, your neighbours delivering Chinese food, and there’s a bottle of wine in a mop bucket.  It’s people travelling out of their way, when they have their own families, jobs to get to, just to come and see if you and your child are ok.  It’s company, chats and laughter in the face of adversity.  It’s knowing your other children are completely happy and well looked after in the hands of someone else.

I learnt that I’m doing a pretty good job of parenting. I manage to feed them, get them to school, encourage them and I try to make sure that their emotional well being is my priority – not having the latest technology, the most expensive trainers… but that stuff inside that you can’t pay for is looked after.  I learnt that it bothers my children more if I can’t collect them from school, or tuck them in bed at night more than anything else, because all they need is to feel loved.

I learnt what community spirit is.  Without the challenges we’ve faced this year, how would we have known what beautiful hearts we’re surrounded by in our local community.  It provides great comfort knowing we’re a part of it.

I learnt it’s best to hide some people’s profiles on social media rather than punching them in the face. Some people are shallow, some people are greedy, selfish, ignorant to the world… we can’t all be the same but we can ‘hide’ their profiles so not to be bombarded with their ‘shit’ day in day out.

I learnt that there are so many more kind people out there than mean people.  Seriously, it’s part of our culture to assume everyone else is an arse, however through experience, this is not the case.  Most people are decent.

I learnt that nurses do not get paid enough.  Comforting myself and my son in the middle of the night, so many thankless tasks and skilled procedures…. these people deserve to be the highest salaries in the country.

I learnt more about my (now) husband this year than in all the years previously added together.  And not in a bad way! Nothing like a testing time to bring you together with a new found respect for one another.

I learnt to smile and laugh with other parents on a children’s oncology ward.  Who’d have thought it?

Cancer doesn’t choose Everyone is equal.  There’s travelling families, families who don’t speak a word of English, families who clearly don’t have a pot to piss in and those who look like they’re shitting money – but none of it is relevant.

I learnt to be brave. Not much more I need to say about that.

Complete with tacky lights!
Forever growing collection

There’s more I could add but it’ starting to feel like i’m in therapy!

Get the tissues

So back to the Shitmas tree… given all of the above, as well as our decoration marking the year we became Mr & Mrs Rooza, the most poignant decorations for us to reflect on there are George’s Beads of Courage.  They loop the tree twice and are probably going to be double the length by next Christmas with the treatment that lies ahead.  I’ve also added a shooting star decoration which we’re calling the ‘wishing star’… it’s for all of our little oncology friends who are putting up their fight, who still have some tough times ahead and their families that are in our thoughts.

Proudly on the front of the tree are some Angel Wings.  These are to remind us of the children we’ve met, and their mummies and daddies who are without them this Christmas…

 

Christmassy fun
Christmassy fun

This year will be our best Christmas ever, we’re stronger, we appreciate the time we have together.  We’ll be eating whatever food we concoct without any meticulous planning, the kids will receive the gifts we can afford and keeping out of Alder Hey will be a bonus!  I will NOT being doing stress….

I hope you all have some form of Shitmas in your home this Christmas, if not a tree, I hope the sentiment is there anyway.

Lis x

P.S.

Just in case you were wondering if we all sing carols and hold hands of an evening now here’s a reality check –

Damien is currently sat stitching tinsel onto George’s Angel Fairy Ballerina costume and it’s 10pm, the night before it’s due in.

I won’t lie, as well as the shitmas tree I still have a 7ft Christmas tree in the other room with a <patronising tone> colour-scheme

Sugar without her uterus anymore
Sugar without her uterus anymore

The dog released it’s anal glands the other day after getting its head stuck in a plant pot holder and the house still smells of fish.

Sugar had her uterus removed yesterday and is walking around in a babygro to stop her chewing her stitches. It requires me to undo her arse buttons every time she needs to go to the toilet.  About a hundred times a day.

Merry Christmas one and all.

 

Note: I know a few of our friends follow All about Erin and helped fundraise for her to get to America for life-saving treatment.  We’re also supporting Jenson’s Journey, another little boy from Warrington who has leukaemia now after battling lymphoma over the last few years… so unfair, I know his family would appreciate your support – you can like his page here.

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

Positive times in hospital, friendships and hair cuts!

An hour after theatre
An hour after theatre

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

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

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

Giggles waiting for theatre
Giggles waiting for theatre

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lis x

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

Just another day in the life…

Ceiling leak
Drip, drip, drip

Today we awoke to a flood in the kitchen, water dripping from the lights and an ant infestation…. but with life being the way it is at the moment, I’m not really arsed!  not that these things aren’t a pain or an inconvenience but what used to send me into a frenzy of dramatic Facebook statuses, now seems irrelevant and petty.

Instead I put a pan under the dripping water, turned the boiler off, text our builder, chucked down some ant poison then headed off to drop the kids at school and get George to his appointment at Alder Hey.

George and his Beads of Courage
George and his Beads of Courage

I feel liberated! Since George’s diagnosis, it’s like I’ve had a virtual smack in the face – I feel like I’ve found out how to appreciate life and not let the little things get me down.  To be fair, I’ve always been fairly mindful and not someone who’d post statuses moaning about minor ailments… and if this is an awakening for anyone out there, you thank me later 😉  I’m finding myself rolling my eyes at people’s melodramatic Facebook statuses even more so – don’t lie that you’ve never done it!

A few days ago George was able to toddle around at Lymm Dam and eat in a quiet restaurant with our family – something we used to take for granted.  Today he’s slept for the majority of the day, when he’s been awake he’s cried and he’s shivered.  It’s been a beautiful day outside and he’s missing it, he’s felt sad and tired.  Some days I’ve questioned whether we’re doing the right thing raising money for our garden but it’s on days like today it feels completely right.

George's Beads of Courage
George’s Beads of Courage so far

Yesterday I cringed through an interview with Wire FM about what our family is going through, but found that when it came to thanking everyone who has supported us I became choked up!  funny how you cope talking through the terrible stuff, but I haven’t pre-programmed myself to keep it together when it comes to people’s generosity.  It’s like when you’re keeping it together and then someone says the dreaded “are you alright?” and receive full on waterworks.  I haven’t listened to myself in the interview and don’t plan to either.  Though I’ve been told I sound like a proper Manc, so it’s can’t be that bad 😉

George asleep
Snoozing George today

Poorly as George has been and potentially will be in the future, I know there are children we’ve met whose battle is tougher today, I’ve seen them in Alder Hey and I’ve met their mummies and daddies.  I know there will be parents who might receive that devastating diagnosis we did 14 weeks ago, bad news about their child’s condition, or will be at their bedside watching their little ones in pain…

We have a little boy who’s doing well considering, a leak that’s getting fixed and a pile of dead ants to vacuum up…. things aren’t so bad.

Happy Facebook posting folks 😉

A confused hospital visit and happy times

It’s been a busy old week in our household, what with the school holidays and same hospital appointments to attend, visitors and a few late nights in a row for the kiddywinks.

Last week were told that due to an unusually low blood count results for George he was going to need an unscheduled bone marrow aspiration.  This was worrying us both a little, but had typically not told each other and just got on with things hoping for the best.

I was under the impression if George’s bloods had improved by Wednesday this week, he wouldn’t need the bone marrow aspiration, but the Doctor had prepared us and booked him in just in case.

Harriet and Olivia eaten ice lollies
Ice lolly time!

Wednesday came along, my lovely friend Andrea came and stayed at ours with Oliver and Harriet while I took George to Alder Hey.  He was super brave as usual with his blood test and got his smiley face plaster and off we went on our way.

The kids had a fab day playing with Olivia and Ray and by 4pm I couldn’t hold off any longer and called the hospital to see if his bloods were back.  Whoever it was said that his bloods were all great.  I was so made up I did a little running man dance on the spot!  It felt like a weight lifted knowing his bloods have recovered – panic over?

George showing Ray his fire engine
George showing Ray his fire engine

The reason for the panic for us with George is that his bloods behaved in the same way when he was diagnosed – everything was low.  Normally most children’s leukaemia diagnosis is picked up in a routine blood test where the lab can see something suspicious lurking (technical terms!), usually a large amount of white blood cells, and alert their doctor.  With George, his bloods stayed low and got lower and lower (including white blood cells) until a bone marrow aspiration was performed and they found leukaemia causing trouble.

So as you can imagine knowing George had been OFF chemotherapy, that normally knocks his bloods counts down, having a break for two weeks then finding his counts were still abnormally low, had raised concerns.  The bloods having risen I thought meant everything is okay after all.

We were told we still needed to go into Oncology Clinic at Alder Hey on the Friday because George needed to be checked over and prescribed his next dose of chemo.

An excited Harriet and Mummy at Little Mix!
An excited Harriet and Mummy at Little Mix!
Little Mixers
Little Mixers

Thursday night Mummy and Harriet had a gorgeous girly night with our friends by going to see Little Mix.  We got dressed up, had tea out in Manchester and donning glow stick bracelets and head gear we “Got Weird” It was Harriet’s first concert and it was ace.  Myself and my Little Mixer didn’t get home until 11.30pm so were absolutely shatttered… of course Hattybojangles was up at 7.15am full of beans on Friday morning <head in hands>

Cute, George stood on Olivers feet in clinic
Cute, George stood on Olivers feet in clinic

Damo had taken the day off work on the Friday and was meant to be doing the hospital run but ended up staying home with Harriet and a bad back while Oliver and I took George together for a change.  It was quite a novelty having big brother around to keep him occupied.  We also saw George’s favourite play worker who always makes him smile, Pip! who he laughs at asking why she has a cat’s name! (this is cute if you already know us… our cat is called Pip).

George being checked over by the Doctor at Alder Hey
George being checked over by the Doctor at Alder Hey

So I brazenly walk into the Doctors office once George had been weighed and had is heart rate checked to be asked if he had been nil by mouth?  errrr….. No?? Why? he’s not going to theatre?  so the doctor goes on to tell me that indeed theatre had been cancelled that afternoon so he wasn’t going, but they do still need to perform his bone marrow aspiration.  George had been on steroids that week and I learnt only on Friday that steroids affect blood counts… still learning.  But basically this means, he’s now in next Friday for bone marrow aspiration to see what’s going on as the steroids may have been elevating his counts.

He is due in on Friday for a lumbar puncture / spinal chemotherapy in theatre anyway, so they’re doing it at the same time.  This is the staying lay down for an hour after theatre day so wish us luck!!

We did take advantage of George not being neutropenic (very low infection fighting cells) and ventured out to Lymm Dam today which was nice – i’m not 100% on how cautious we need to be but we weren’t in a crowded place so gathered it would be good to get out while Nanny Jane and Grandad Tony were visiting for some fresh air.

It was lovely to see George actually doing some walking, peeping behind trees and playing, be it with the buggy nearby, as he’s not walked further than around our house really for the last few months.  I’m hoping to make the most of this lack of pain and being fairly well in himself before May is upon us and his intense treatment begins.

We even managed to go out for a meal with Nanny Jane and Grandad Tony!? usually we’d be avoiding crowded places like the plague but luckily found somewhere we could sit out of the way of everyone else in The Black Swan.  It was early so only a few other tables were taken… we all enjoyed the treat without the washing up 🙂

This has actually got me thinking, some lovely friends are organising a St George’s Day Fundraising Toddle for our garden project that we really want to attend in a couple of weeks but it’s going to be mad busy isn’t it!?  I’m probably going to have to put something out there on the Facebook Event to state, which I’d hope would be a given anyway, that anyone whose children have chicken pox (worst case) or contagious illnesses to please bear us in mind and maybe sit this one out.  Sniffles and colds aren’t so bad by the way, they’re unavoidable.  I’m going to speak to the hospital about to find out more too..

Board games and stories
Board games and stories
Aunty Shan and Harriet
Aunty Shan and Harriet

We also had a visit from Aunty Shannon, Nanna and Grandad Chris today which was nice… Aunty Shannon was climbed all over bless her.  Birthday snuggles all round for Aunty Shan who is 19 on Monday!?

So amongst George’s steroid induced sleepless nights, stubbornness, munchies and roid-rage… and apart from the bloods still being in the air, we’ve had a lovely week with friends and family.  Now these kids can get back to school and Playdays this week, I need a brew that’s at least room temperature!!

 

Nine weeks in following George’s leukaemia diagnosis

Harriet smiling
Cheeky chops

Harriet had coped really well in the first few weeks of George’s diagnosis as she had been revelling in explaining exactly what leukaemia / cancer is… I kid you not.  She liked to draw a bone with healthy cells inside the bone marrow and then coloured over with another pen showing what cancer does when it takes over.  She’d then go on to show what chemotherapy and steroids will do to help George and that losing his hair is all part of killing off the bad cells.  She’s amazing!

Oliver became a little quieter on the matter and would randomly ask for statistics and percentages of cures and relapse – typical Oliver!

More recently Harriet seemed to become more emotional, having huge tantrums and flying off the handle at the smallest of things – more so than her average meltdown ratio.  I, in turn, started worrying I wouldn’t have enough “being strong” to stretch.   Although a lot of this behaviour is to be expected, I admit I’d not prepared myself emotionally to deal with it.  I’ve been focusing on physically cracking on with day to day life and making sure I was well informed on George’s leukaemia treatment.  It’s harder than you think trying to get through a day making sure everyone has eaten, is clean and dressed and is where they need to be on time when you’ve learnt that a child has cancer.  And that’s just simply functioning!

Oliver holding a teddy bear out to George
Oliver being a top big brother

On an emotional level, Oliver and Harriet I felt had drawn the short straw, they needed lots of attention and weren’t necessarily receiving it.  Oliver had started to pick up on my heightened stress and was taking it upon himself to deal with Harriet saying things like “do you not think mum has enough to deal with Harriet?!” He had started becoming quite protective of me.  He suddenly grew up overnight for all the wrong reasons.

I had realised that whenever we’ve had visitors it’s always  been about George, of course it has, people want to see how he is.  I’d be giving our latest visitors the low down on his treatment and Harriet would be interrupting to show a cartwheel, a picture or getting overly giddy and putting on baby voices.  I can hear myself now telling her to go and get on with something else while i’m talking or to stop interrupting – it’s heartbreaking to think how that must have made her feel.

Since then though, and on a more positive note, the last few weeks we seem to have made some progress following a family session with Psychological Services at Alder Hey and some counselling.  It felt good to gain an understanding of what the kids’ interpretation of things are and how completely normal their behaviour is given the circumstances. We learnt coping stategies and talked about ways for the children to share their feelings.  I think the psychologist needed a psychologist herself by the time I finished “offloading” the life story too… ha ha! (I was one to one at that point!).

Both Damien and I have since been making a concious effort to give that extra bit of time and patience with all three children.  Harriet is her Mother’s daughter and we’ve both benefited from taking a few deep breaths before reacting to a situation.

Lisa holding glowsticks
Raving at Clubbercise

Harriet has helped us create some Chores Lists whereby each of the children are allowed a friend round for tea if they get their jobs done in a week – she’s loved controlling that and bossing everyone about.  It’s win-win for us with Oliver emptying bins and the dishwasher and Harriet hoovering.  Even Damien and I have jobs and rules to adhere to like “No mobile phones at the table”, “7pm is boardgame with kids time” and “make time for yourself once a week”… I’m not sure Damo would appreciate my time being a girly weekend in Tenerife once a week (nor would the bank!) so i’ve just gone to Clubbercise this week – highly recommended for burning calories through laughter and dancing without rhythm in the dark!

We’re only 9 weeks in to this and we’re not about to get too complacent with over 3 year’s treatment ahead.  With the meltdowns reducing, the kids friends’ coming for tea next week and a calmer, happier atmosphere at home, it’s safe to say, we’re in a much better place than we were.  Here’s to the next 9 weeks! and to the mums at hospital that hugged me through tears when you didnt even know me, you were right, it does get easier xxx

 

picknmix-Fridays

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