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.

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

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

Sugar Poo
Sugar Poo

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

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

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

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

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

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

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

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

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

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

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

Chilling with Sugar
Chilling with Sugar

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

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

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

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

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

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

Puppy love
Puppy love

Brave girls and mad Hatters

A few months back Kerry, a lovely little friend of Harriet’s asked if she could get her hair cut to raise money for George.  Harriet jumped at the chance of doing some fundraising too and together with Kerry’s mummy, we started our little campaign.

George with Erin, happy in her Little Princess Trust wig
George with Erin, happy in her Little Princess Trust wig

It became obvious after a few days that there were more little girls in the school who also wanted to get involved and our team grew.  We’ve organised ourselves this week, finalised the details and confirmed we’re choosing The Little Princess Trust, the charity who create real hair wigs for children with cancer, to raise money for and to donate the hair to.

George and I met a lovely young lady at Alder Hey not so long ago called Erin, who also has Acute Lymphoblastic Leukaemia.  She had lost her waist length hair within weeks of diagnosis and had received a gorgeous real hair wig from The Little Princess Trust.  We’ve seen first hand what a difference it’s made to that little girl – imagine what it must be like as a ten year old girl losing all of your hair.  TLPT also help children who’ve lost their through other conditions, like alopecia.

Our team has grown and there are now FOURTEEN very brave girls from Woolston Community Primary School  going for the chop – at least 7 inches of hair is being cut from each person plus there are three big sisters/local friends and two Mums getting theirs cut too!  That’s EIGHTEEN altogether!?

Harriet and her Race for Life medal
Harriet and her Race for Life medal

The school community and George’s preschool have been amazing at pulling together for us as a family, raising money for us and causes close to our heart.  This selfless act by a large group of girls/ladies is yet another positive story to add to our ever growing collection.

 

The fundraising page can be found here – Thank you to everyone involved – our Harriet, Kerry Hennie, Olivia and Grace Wilson, Kira Linley, Rihanna Thorpe, Libby Naylor, Erin Osborne, Imogen Cairns, Isla Dale, Payton Chesters, Charlie Fletcher, Katie Rudge, Abigail Shaw, Bianka Toth, Becky Coates, Charlotte Isherwood, Sarah Bursill and Michaela Hewitt! The photo of you all together with your bobs and ponytails in hand in a couple of weeks is going to be an emotional one… Harriet has such a gorgeous group of friends.

One crazy-excited Harriet
One crazy-excited Harriet

Speaking of Harriet and gorgeousness, she’s messy, quirky and a bundle of energy ALL of the time, traits that I wouldn’t change for the world (ok maybe when i’m hungover….), she has a huge heart and spends most of her time in a fantasy world full of “pink fluffy unicorns dancing on rainbows” so she tells me.  She’s barking mad, feisty and when we talk about how her day has been, she can always tell you something amazing that happened.  Even if she found a stone, named it Fred and it’s now in a special box in her bedroom!

What do you want to be? A penguin.
What do you want to be? A penguin.

There are days when she’ll share something that’s made her sad.  Her favourite teacher is leaving and she’s quite emotional about it.  It’s been a tough year for my little girl and I feel Miss Taylor has supported her in school just by being there for her when she’s been most vulnerable.  I know Harriet loves her to bits I just want to say thank you for all that you’ve done make life a little easier for Harriet, I know she’ll never forget you and I hope you inspire my daughter to travel one day too x

Inside Out artwork by Harriet Whittaker
Inside Out artwork by Harriet Whittaker

Here is a piece of artwork Harriet created recently which I think says it all really, it’s up on our wall and is the reminder I need sometimes that I can’t be doing too bad a job of being a Mummy.

It says “It doesn’t matter what you look like on the outside, it’s what’s on the inside that counts”

She thought of that herself and says it’s for her Georgie.

I know some people sponsored Harriet the last time I circulated a fundraising page (which has been added to this campaign!) but if you didn’t, and would like to, you can do so here.

George is in Maintenance!

A treat to celebrate maintenance

Bring on the Maintenance!

Last week George had a blood test to check whether he was good to move into maintenance and we got the call on the same day to confirm all was well.

On Thursday we had an appointment with one of the Consultant Haematologists, Dr Keenan.  He checked George over as he has a little cough and some strange loss of pigment on his skin in patches on his tummy – we’re keeping an eye on this as it’s not something he’s come across before.  The main reason for the appointment was to officially move George into the “Maintenance” phase of his treatment.

Maintenance will run in cycles, but essentially is the remainder of the treatment for Acute Lymphoblastic Leukaemia – it’s working on preventing the return of the cancer cells.  Some of the chemotherapy that George will receive during this phase will be administered orally by us at home.  He’ll still need to go to hospital every fortnight to have blood tests and be seen by a doctor, the doctor can then prescribe the appropriate amount of chemo for the following fortnight and so on.

Nuts
Nuts

It doesn’t reach the nuts!

The chemotherapy George has at home (Mercaptopurine…. or chocolate medicine as he calls it!) does not reach his his nuts!  So the consultant had to give me a demo on checking his boys bits (on George this is btw!!) which we have to do on a weekly basis… any slight change in size, lumps, bumps or tenderness and we have to take him straight back to hospital.  Relapse in boys testes is more common than anywhere else.

Nor does it reach the brain!

The chocolate chemo medicine also doesn’t reach the brain so George will still be going to theatre every three months for the next three years to have intrathecal chemotherapy.  This is chemotherapy into his spinal cord via lumbar puncture so that it can treat the central nervous system where the other medicines don’t reach.  He’s been having this frequently up until the “break” he had, if you remember reading about him not being allowed to sit up after theatre earlier on when things were quite traumatic.

Everything covered

So we’re feeling pretty confident that everything is covered… a small number of leukaemia cells can survive everything that has been thrown at it up until now but this next few years will hopefully be wiping them out completely.  Relapse can happen at any point, but it is more likely to occur the year after the end of treatment – so 2019-2020!? we’ll never be free of the fear that it can return and will be living with the uncertainty for many years.

Wild
Kids being wild

Living!

Relapse doesn’t bear thinking about much further, we’re happy to be where we are right now.  The key word in the last paragraph for us is living – living life to the full because you don’t know what’s around the corner.  Cliche I know but it’s never meant more.

I asked Dr Keenan what the phase of treatment means for us a family now, and he basically told us go live our lives.  There are certain precautions we need to take, but that he, and the rest of the doctors, will do their utmost to allow our little boy lead as “normal” a life as possible.  I’m not usually a fan of “normal” but it’s sounding pretty good right now.

Barry, George’s port will still need a flush every month, we’ll still have theatre every few months, doctors appointments and blood tests fortnightly and will still be heading to Alder Hey with temperatures if George falls ill but this is what life is for us.

Where are we?
Where are we?

Maintenance Day 1 – LegoLand Windsor

So to kick the official first day of maintenance off on Friday, we took advantage of Oliver and Harriet being off school for Warrington Walking Day and visited LegoLand Windsor!  you all know what a fan of Lego our Georgie is, so he was in his element.

We arrived at Legoland and as directed spoke to Customer Care who gave us 5 QueBot passes to allow us to fast track through every ride.  It was fantastic… not only so that we could make the most of a good variety of rides for our all three of the kids but what a lovely touch by them? We knew this meant no standing around in queues with strangers where there’s the risk of George catching something contagious.

The kids were adamant they were going in the splash park regardless of it being pretty chilly when wet in the wind!  It’s for times like these we’re glad we have Barry the port and not a wiggly tube on the outside.

George and Daddy went off for a little Lego shopping later which gave us a chance to hit the faster (and wetter!) rides.  Oliver and Harriet loved it!

Day 2 – Family stay

Fire engine!
Fire engine!

We also had the pleasure of staying with family on the way there and back.  Thank you to Aaron and Dee for putting us up and putting up with us 🙂 we were outnumbered by little legs and survived!

We even got to visit cousin Teddy’s little school fete which happened to have the local fire service present and a FIRE ENGINE!?  could things get any better for Day 2 of Maintenance!  George predictably went straight back into his shell but what a lovely guy the fire fighter was, he persevered showing George the jaws of life, buttons to turn the flashing lights on etc.  and low and behold since we’ve been home he’s been chatting all about it.

Hold on tight

Oliver and Harriet and their little cousin Teddy got stuck in at the fete too, meeting the local police community support officers, playing games and eating lollipops.  We finished off our stay with a beautiful lunch on Saturday afternoon at a local village pub.  The kids ran wild in the sun, ate well, played on the swings, threw themselves down hills, chased each other, laughed and well….. lived.

The crew
The crew

We’re looking forward to the rest of summer 🙂

Keeping going one day at a time

Feeling hot sorting lego
Feeling hot sorting lego

This week has been a tough old week, the toughest so far in terms of George’s mood and well being.  It’s on a different level to the initial shock of your child being diagnosed with leukaemia.  No, this is a different kind of heart break, the kind you might experience when your child is feverish and not themselves, and that 24 hour bug seems to be going on forever and all you want for them is to be themselves again.  Only imagine they’re in so much pain they can’t talk, they can’t drink and you know they want a hug, but they keep pushing you away because they’re angry, they’re sad and you can’t take it away for them.

Then imagine that it’s not for 24 hours, you don’t know when it will end and you’re completely helpless.  That’s the kind of thing we’re talking about this week.  George has a temperature and mucositis, it’s causing ulcers and sores through his gastrointestinal tract from his mouth down to his bottom.  It’s even been affecting his tear ducts so his eyes are sore too.  Imagine those one or two ulcers you might have because you’re feeling a bit run down and times it by 100.  That’s how my baby boy is feeling.  He’s three and dealing with the probably a million times better than I ever would.

looking out onto the new garden
George and Seth looking out onto the new garden

He did pick up a little for a day on Thursday this week and enjoyed having his little mate round to play, Seth, which I’m really glad he had the pleasure of doing.  He was back for a couple of hours, chatting and playing normally. He misses his friends and he misses Playdays.

We’ve tried to appreciate the small ‘normal’ moments at home but have been back and to, to Alder Hey when I followed my gut out of sheer worry about him.  What I do need to point out is that this is a side effect of George’s treatment, not something rarely seen and it’s something the hospital know how to deal with.

Always time for Pip
Always time for Pip

There are things I could Google all day long about what Mucositis can lead to, but i’m just listening to the other parents who’ve helped their children through it and of course the doctors at Alder Hey.  “Barry” the port is in full swing and has currently got three or four extensions to it for fluids, IV antibiotics, paracetamol, saline and a PCA Pump for his morphine.  There’s a little button we can press for an additional boost of morphine prior to George attempting to drink and following him coughing…

This isn’t really something i’d prepared myself for, if I’m honest I was just expecting vomiting and sleepiness but I realise now I was naive and this is the sh*t people are talking about when they say how hard it is.

Bacon cupcakes!?
Bacon cupcakes!?

We’ve had lots of reasons to smile this week around George’s feeling dog rough.  I don’t think i’ve officially had to cook once due to all the little fairies who’ve delivered hot pots, bologneses, casseroles, bought us pizzas and invited us round for fajitas!  We’ve not been short on visitors to keep me sane during the long days i’ve been at my wits end, nor offers of support while we’ve been at hospital.  We even had a delivery from next door of bacon flavoured cupcakes just for George’s savoury tooth!  He has also enjoyed his little lego gifts from friends who’ve made his day – he’s been re-building his sea-plane and caravan in hospital over the past few days 🙂

But never mind the smile on Georgie-Roo’s face, can you imagine mine when 10 bottles of wine arrived in the post this week!?  Obviously i’m ready to neck the lot but have to bear in mind emergency dashes to hospital so we’ll gradually make our way through it bit by bit.  I could do with a button on a PCA for that too but maybe that’d be frowned upon in certain circles :-/

George rigged up to all his pain relief and meds today
George rigged up to all his pain relief and meds today

The wine helps but the community nurse has been a massive saviour when i’ve felt like i’m tipping over the edge with what is normal and what is not.  Plus support from other parents on some of the online groups for children in Oncology.

Oliver and Harriet have been amazing.  It’s a word I over-use I know “amazing” but seriously… they fight most of the time and drive me bonkers, but when push comes to shove and i’m flapping about, Oliver suddenly steps up to help and Harriet will quietly retreat.  I know this isn’t necessarily a positive, but i’m so proud of them… not because they’re the best at maths or brilliant at a particular sport but they’re so emotionally aware and mature in spite of everything.

So with our bank holiday weekend plans to add the finishing touches to our dream garden out of the window… Oliver and Harriet had a nice play with some of our neighbours children when all hell broke loose last night.  Poor Damo’s one chance to let his hair down and go out to watch rugby was scuppered with George’s temp reaching 38 degrees and me having to abandon ship and rush him to hospital.  The awning can wait until we actually need it when Georgie is home… and I can shop for any additional bits online when in hospital tomorrow with George if he’s sleeping.

George and Daddy Facetiming eating noodles
George and Daddy Facetiming eating noodles

Today, running on approximately 3 hours sleep and 1 round of toast, I’ve liaised with the electrician over lights in the garden and took Oliver and Harriet for a bike ride for treats from the shop.  We managed to geg in on a barbecue at our good friends The Appletons on the way home.   We’ve Facetimed Georgie and Daddy at hospital since we’ve got back and it was great to see George managing to swallow some noodles 🙂 he shown us his lego and now the kids are snuggled up watching X-Factor.

Blowing the cobwebs away with the kids
Blowing the cobwebs away with the kids

Totally appreciating my own bed for one night, can’t wait George is well enough to come home and we’re altogether again under one roof, hopefully that will be during the kids school holidays this week x

Not for those with a weak stomach!

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

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

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

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

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

Heading to theatre on foot
Heading to theatre on foot

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

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

Feeling drowsy after theatre
Feeling drowsy after theatre

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

Feeling poorly
Feeling poorly

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

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

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

Feeling better in new Pjs
Feeling better in new Pjs

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

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

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

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

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

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

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

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

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

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

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

Poorly boy :(
Poorly boy 🙁

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

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

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

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

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

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

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

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

Harriet and Lola
Harriet and Lola

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

Isobel and Oliver making lunch
Isobel and Oliver making lunch

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

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

Latest beads
Latest beads

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

Lis x

Typical Bank Holiday moisture in the air!

Time for some pinball
Time for some pinball

So the bank holiday weekend has been a bit of a wash-out, no surprise there with us doing Gung Ho and work beginning on the garden!

We went to George’s hospital appointment on Friday where he was taken off the chemo that we give him at home and prescribed some more morphine.  The ANP we saw was lovely and sat playing with George before checking him over.

The skies don't reflect the mood :)
The skies don’t reflect the mood 🙂

On Saturday, Oliver and his friend Isabelle, plus me and my friends Leanne and Ruth, took part in Gung Ho!  It was hilarious and hard work at the same time.  I did feel emotional at the start when the guy doing the countdown asked which charities people were running for…

Me and the big lad before the race
Me and the big lad

Oliver and Izzy pretty much ran ahead doing their own thing once we’d given them a peg up and over the highest wall with absolutely nothing to hold on to.  We meanwhile battled through these huge inflatable obstacles, being kicked and trodden on.  The highlight was probably as the heavens opened at the top of the 5-storey slide… and I don’t just mean it was bucketing down, that was already happening, I mean hailstone, freezing, rock hard hail.  So just imagine, with your mate who’s bricking it, stood 5 storeys up in the wind and hail then throwing yourself down this vertical drop and sliding straight through ice water.  I ended up like a turtle on its back hurtling arse-first with my eyes shut.

Post run happiness
Post run happiness

I’d like say it was exhilarating and I arose feeling empowered but i’d be lying!  it was bloody freezing, I was numb and feeling a bit on the damp side.  But we did it, we were triumphant!  Oliver and Isabelle were typically stood waiting at the end for us impatiently… asking why it took us so long!?

So I just want to thank everyone who’d sponsored us, and I wanted to give special recognition to little Noah Brown who is one of Oliver and Harriet’s good friends and also one of our neighbours – Noah sponsored Oliver out of his own money box.  So cute and caring.

Thank you also to Leanne, Ruth and Izzy for putting themselves through that for our cause, it means so much to us xx

The decking!
The decking!

The rain didn’t let up for the start of the work on our garden, the decking arrived on Friday and work began on Saturday.  The guys worked tirelessly over the weekend.. I’ve added a couple of shots for now but hope to do a full on before and after post in the future.

So this week, amongst the beginning of “Delayed Intensification” it’s also Harriet’s birthday.  George is due to be in hospital on a drip of chemotherapy that day so Damien and I are going to go with him but I am probably going to pick Oliver and Harriet up to take them out for tea.  Hopefully things will be different next year for her 🙁

We’re hoping tomorrow brings good news with George’s blood test so that we the next phase will continue from Wednesday.

I’m lucky to have regular support from Lynda from the Joshua Tree, she came to visit last week and listened for a while.  Lynda has been through all this herself with her own son who is now strapping lad in his teens.  It’s nice to be able to share my thoughts sometimes with someone who can completely relate.

I feel glad that we’re at this point and that another couple of months and we’ll be moving on to maintenance.  I know it’s the treatment that’s making things hard at the moment and not the cancer, things could be different.

So sick bowl at the ready, here we go

Lis x

Oliver – my unsung hero

Tea George?
Tea George?

Let me tell you a little about my eldest, Oliver.  Oliver tends to slip through the net when it comes to reporting the latest… he’s lost his cuteness for an arty photo and has really settled down after 9 years of wreaking havoc.  I feel this is the calm before the storm of the teenage years!

What?
What?

He’s always been an absolute pain in the arse, getting up to mischief and generally leaving a trail of destruction behind him.  He was the kid that knocked your toddler over in the soft play centre because he was running at a hundred miles an hour.  He’s the one that I’ve always held my breath over on parents evening because of his behaviour.    He’s the kid that sits tapping his pen just because it annoys you… he has an answer for everything, is sarcastic and is ALWAYS right.

These days he’s quicker than me in more ways than one! he’s still always “right” but now I find myself struggling to get my point across because his “negotiating” has left me dumbstruck.

Play time
Play time

Since his little brother was diagnosed with Leukaemia in January, it’s felt like Oliver matured overnight.  I felt sad for him to have to fear cancer in his little brother.  He became sensible and caring, traits i’d not really seen in him before if i’m completely honest.  It’s been a sharp life lesson for a young lad, teaching him what the real world can actually have in store – this is real and this what thousands of people deal with every day.  We know it’s shite, we wish it wasn’t our Georgie, but when we’re through this, think about what kind of young man Oliver will have become.

Drawing time
Drawing time

It can be p*ssing down and i’ll be struggling to get the shopping from the car and no sooner am I heading back to get George out, Oliver has already undone his car seat and is carrying him in the house.  He’ll say “let me get that Mum, you see to George” when he’s upset… he’ll automatically run to comfort George if he’s shouting for me and i’m in the middle of something.

I’ve chatted tonight with Oliver about the upcoming treatment George will be facing whilst George was in the room. I explained that this is the time that he could be sick, lose his hair and sometimes cry because he doesn’t feel well.  George heard this and said “I don’t know if i’ll be brave anymore, what if I cry?” and Oliver, the most beautiful big brother sat there and said “You’re the bravest person I know George, it’s ok to cry, it doean’t mean you’re not brave anymore… I cry sometimes too!”

Giggles
Giggles

How did this happen? whatever George wants, he knows his big brother has always got his back.

Before we reached our fundraising total for our garden, Oliver wanted get involved.  We entered GungHo Manchester with some good friends, not anticipating that we would in fact meet our target before the date even came round.  That date is tomorrow!  It’s an inflatable obstacle course on Heaton Park and it’s due to pour down.

Taxi for George
Taxi for George

If you hadn’t sponsored anyone yet and you don’t feel like doing so after reading the above, you have no heart 😉 If you feel you want to drop Oliver a few pennies, you can do so here if you want to… I’m aware most of our friends have already sponsored so just catching anyone that hadn’t got round to it yet!

Fundraising aside, I couldn’t be prouder of Oliver and all that he’s achieving in everything that he does.  He’s a bright lad and is the one i’m relying on to pay my care home fees… so he better keep it up!

Fingers crossed for no broken bones tomorrow!

Lis x

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!!