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.

Neutrophils, Optimus Prime and a Character Award

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

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

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

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

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

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

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

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

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

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

 

 

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 🙂

Happy Harriet, Great Manchester Run and Georgie feeling blue

Well chuffed with her animal rubbers
Well chuffed with her animal rubbers

Myself and Harriet got out for the day for some much needed girly-time on Saturday.  We both had a lovely time and Harriet chose few little treats and spent some of her own pennies on stickers and paper.

Jenerics and their Georgie banner
Jenerics and their Georgie banner

We went into Warrington Town Centre to the “Around the World in 80 Traders” event to support Jenirics and have a cheeky Chinese lunch – delish!  We saw a familiar little smiling face on the stand on a banner – our Georgie.  It was a shame the rain poured but it wouldn’t feel like home without the torrential downpours would it?  Thank you so much to the Jenirics team for your support, you are an amazing family.

It was funny at the face painting lady, Harriet deciding what she’d like to be….a princess? a butterfly? a bunny rabbit? flowers with sparkles?  No.  A penguin.  I’m not sure the lady gets many requests for penguins.  Typical Harriet.

Penguin on a bucking bronco
Penguin on a bucking bronco

So painted as a penguin she rode the bucking bronco like you do.  We enjoyed watching some outdoor theatre and had a look round town for a new dress….realising our freshly painted penguin probably shouldn’t be trying pretty dresses on, we started to head home.

The penguin enjoying the rocky road
The penguin enjoying the rocky road

I remembered that a friend of ours has just opened their new little art cafe near home so just had to stop off for a milkshake and a decent coffee.  R’Teapot is a gorgeous little hideaway on Bruche Heath Gardens serving the best rocky road I have ever tasted!! i’m talking turkish delight and everything.  It’s cosy and welcoming and we’re looking forward to spending more time there over the coming weeks with friends.  Congratulations Nat and family for creating such a gem and following your dreams x

It was nice to get out away from home for some time my little girl, we both needed it.

Later on, Harriet and I “popped round” to one of our neighbours for a catch up and for Harriet to run amok with the kids.  I did my usual when I start telling a story and leave the house hours later having not even reached the conclusion!  Thank you for hosting Andrea and for the vino, the laughter was great medicine 🙂

Our runners Shannon and Nikki
Our runners Shannon and Nikki

On Sunday I went to watch my baby sister Shannon, and my lovely friend Nikki, take part in the Great Manchester Run.   They were both raising funds for our family and for charities that have helped us since George’s leukaemia diagnosis in January.  They both ran through the torrentials to an emotional finish where we were waiting for a big hug and then went for an obligatory cocktail in a nearby bar.  They’ve inspired me to do the run next year… I better get training!

Gollum
Gollum

I felt like i’ve hardly been at home this weekend, hats off to Daddy for sorting all three kids yesterday while I had a day off.  With being out and about and everything going on, I was shocked last night by the amount of hair George has now lost.  He’s gone from “Hitler” to “undercut” to “Gollum” to “toupee in a side wind” in the space of 48 hours.

The hair loss doesn’t mean he is getting more sick or anything, in fact he’s got less of the awful disease now than when he had a full head of hair at diagnosis… I think it just constantly reminds me what he’s going through when I look at him, so it has bothered me more than I expected.  The only thing that seems to be upsetting him about it is the fact that its in his mouth and eyes all the time.  He’s feeling too rough to care what he looks like.

Toupe in a side wind?
Toupe in a side wind? trying some spagetti

Today has been another emotional roller coaster – and it’s probably more me than Georgie.  He hasn’t been constantly crying like Friday, but his mouth ulcers are worse and the steroids are in full effect so is very hungry all the time.  He’s just not himself, he’s carried a mini sausage roll round with him all day that he was desperate to eat but just couldn’t chew 🙁 he’s been very quiet, lethargic and telling me his mouth is hurting.  He’s been on morphine all day and I had to call the community nurse at lunch time to come out because I was worrying about his breathing.  It seemed shallow and he’s got quiet a nasty cough, then I literally thought I had to call an ambulance during one of his coughing fits because he was going blue and seemed like he couldn’t breathe.

He cleared a big mucousy lump and got his breath back and the nurse came not long after.  Luckily my friend Nic was here (delivering an order of sausages for the little man) and Laura had popped round too to see if could manage some noodles.  The nurse did a thorough check, listened in, checked his pulse etc and felt his breathing was fine.  Now I’m questioning my sanity and whether i’m overreacting!

The nurses have said they are going to start making regular visits to check on us and answer any of my questions that I’m currently having to save up until the next hospital visit.  I had felt quite isolated being sent home with George initially, I mean on the medical front.  We can’t take him into a GPs surgery with a load of sick people and Alder Hey, amazing as it is, is a long way away and a very busy place when you have a concern or question.  Once George had started going back to preschool though and he wasn’t suffering too much, I felt ok.  It’s now that we’re in the midst of the intense phase, we need the nurses here, they’re such lovely people too, I instantly relax when they’re around.

The lovely Clare dropped a spag bol off earlier which helped immensely, I haven’t had time to do a food shop and haven’t left George’s side all day to cook anything.  So after a long day at work, Damo came home to a decent meal! I could’t pass it off as my own unfortunately as my trademark ‘burnt’ wasn’t one of the ingredients.  Thanks again Clare x

Smiling Georgie
Smiling Georgie

We had a couple of nice moments when George managed to play with Lego today, he was also very happy to have a snuggle with Daddy when he got home.  I managed to capture some of his smiles – he looks like his normal self with a cheeky grin 🙂

Hopefully we’ll get out to water some of our plants in the garden tomorrow, George loves doing that.  The guys have been here today installing a garden tap and putting the new fence posts and panels in.  It looks ace! Thursday the grass goes down and maybe at weekend we might get the canopy up.  We’re really looking forward to getting out there to enjoy it.

Another few days done, we’re not in hospital this week (fingers crossed!) and are just taking each day as it comes.  Hoping for a some more comfortable days for George x

Week 2 of Delayed Intensification…

As you may have seen from the Chemo Day Inspiration video I posted, last week’s treatment went miles more smoothly than the previous week!

George’s day at hospital was actually a lovely one, with his friend Pip spending lots of time with him.  He particularly loved Zoomer the little Dinosaur – there’s something for his birthday list!

He had an afternoon playing and laughing and all went well with his treatment, he was super brave having Barry accessed for his medicine to “punch the bad cells!”.  We didn’t even really need his entire suitcase but at least we were prepared this time!.  The afternoon did drag on a little but luckily my good friend Nic was on hand to pick Oliver and Harriet up from school… huge thanks again lovely 🙂

Tickle time!
Tickle time!

We went to pick the kids up but decided since it was a beautiful night and the children were all happy, we’d sit out in the garden for a while.  George loves Nic to bits and constantly asks to visit the Cairns/Furby household to play with Nic, not the children 🙂

Unfortunately the following morning George was complaining of pains in his neck, I called the Oncology Daycare at Alder Hey and they asked us to come straight in.  So, suitcase in hand again, we were off down the M62.  This time I was a bit more worried as it wasn’t something we’d experienced before and George was literally holding his neck crying all the way there and shouting hurry Mummy!  All sorts was going through my mind as you can imagine…

Poorly Georgie :s
Poorly Georgie :s

We got there and Kev, the ANP, who is always fantastic with the kids, checked George over.  He said he could see some blood and swelling in his ear and that he thinks it’s an ear infection.  He prescribed antibiotics and was dosed up on morphine and we came back home again.

Yay!
Yay!

Over the weekend we’ve had the excitement of a skip arriving for the digging out of the back garden.  George loves vehicles and machinery so he loved watching the action! The garden is really coming along now – the decking is done and is already much easier for George to access.  The work for the artificial grass begins tomorrow plus the new fencing and gate arrives.

Andrea and George
Andrea and George

It was nice to see our friends Andrea, Olivia and Ray over the weekend and the older kids had a play out in the sunshine.  George was very interested in this “Diggerland” place Andrea was telling him about – we may try and visit if we can find a quiet day!

We also had Kath and Lola come over to help us get some planters and pots filled. I visited all the local plant nurseries and bought a load of plants I have no idea what to do with!  fingers crossed they just need soil and water!  Harriet is desperate to grow her own vegetables so I’m going to try to incorporate a mini-greenhouse somewhere.

Yesterday Georgie developed a chesty cough and has become quite congested, his temperature had started rising, so I thought we would be heading back to hospital.  He had a good morning today but was snoozey this afternoon – we’ve some Mummy cuddles and it hasn’t crept up further.  Think i’ll be in his room with him though tonight as he’s definitely not himself and I find it difficult to sleep away from him when he’s more unwell than usual.   I don’t know how we’ll ever go back to not checking on him all the time!

Sleepy boy today
Sleepy boy today
Shine brightly Lacey Mae x
Shine brightly Lacey Mae x

We’ve heard more sad news that another little lady from our Oncology ward passed yesterday, another family’s hearts broken.  I’m aching for them, 4 years old. Good night Lacey Mae xxx

Lis x

 

 

Chemo Day inspiration

The new phase and the new bedroom

Georgie in his new room
Georgie in his new room

It’s been a very busy week following the St George’s Day toddle last weekend – a day that we’ll never forget.  What I’m finding amazing is how, at such a difficult time for us as a family, we’re managing to have some of the most beautiful, positive moments.

A great example of this is the transformation of George’s bedroom that’s also been happening over the last week.

A secret bed pulls out for Mummy or Daddy
A secret bed pulls out for Mummy or Daddy

We’ve had kindness from all directions for that too with our good friends, Ryan and Simone Norris, donating towards George’s new bed along with The Mark Gorry Foundation.  This has made life so much easier as his new big boy’s bed has a second bed that pulls out from underneath!  it means that whoever is on duty that night (cough, cough Mummy) can sleep comfortably by George and let the other get a decent night’s kip.

This is going to be particularly important over the coming months as George might be more sickly and uncomfortable.

Grey walls and fire engines
Grey walls and fire engines

George’s Nanny Jane and Grandad Tony bought him a new bedding and curtain set – covered fire engines of course!

The team at North Cheshire Construction worked tirelessly in their spare time to rip out the old room, remove the old nasty artex ceiling, plaster, paint, wallpaper, install new sockets, switches, skirtings and more….

Hallelujah for storage!
Hallelujah for storage!

We feel blessed to have such wonderful people around us and are eternally grateful to everyone.

George’s “Interim Maintenance” phase of treatment is already drawing to an end this week and we’ll be moving into “Delayed Intensification” next week… yeah it’s as grim as it sounds.

A LEGO gift off the builders!!
A LEGO gift off the builders!!

I’d intentionally avoided looking closely at what this next phase is going to include as it’s renown for being harsh compared to the current phase.  This next 7-8 week phase is going to hopefully eradicate any remaining nasties that are hanging about, then the next 3 years or so of chemotherapy are to make sure it doesn’t come back! well that’s my understanding anyway…

Debbie being a bit crazy!
Debbie being a bit crazy!

Luckily for George we have nurses like crazy Debbie to keep us amused each visit though.. this was George yesterday having a blood test – I’m so proud of him, he just cracks on even when his nurse is a bit nuts 😉

Tomorrow we’re back at Oncology clinic at Alder Hey to have the chemo that he has at home adjusted and prescribed.

Next week we’ll be starting with a blood test on Tuesday then depending on his blood counts, we’re back Wednesday for theatre (spinal chemotherapy), Thursday he’ll start back on steroids and have another two kinds of chemo through a drip for an hour or so.  He gets Thursday off but we’re back on Friday for an injection in his bum that he’s had before… he doesn’t like it (who would!?) but I think that might the last one of those he needs for this phase thank goodness.

Amongst all the above he’ll still be having his daily chemo at home and his weekend medicine that he’s had since the beginning.

Lisa and Olivver
Me and my big boy

So approach with caution next week, it’s Week one of eight for this phase.  I’m anticipating less sleep all round, roid-rage, a few more tears (all round!) and the peperami monster might be back… at least we have a cosy new bedroom to keep him smiling and how lovely was the message from the Swashbuckle crew today!?

There’s more excitement happening this weekend with Oliver and I taking part in Gung Ho Manchester on Saturday morning with some of our lovely friends.  Our target for our garden has been met before we even managed to take part!? a testament to the support we obviously have out there!  I’ll still be updating on how we get on as Oliver’s really looking forward to doing his bit and embarrassing his Mum!

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!!

 

When I say ‘Tu’ you say ‘Pac’!

Lisa Rooza
March 22, 2016

Soooo… this is what George and Daddy get up to while Mummy is out!

 

Another little dream come true…

Lisa Rooza
March 14, 2016

For those that viewed the “When Nanny Jane came to visit” video, you’ll have all heard how George would really like a pink sleeping bag with fire engines on for when he goes camping – not much of a challenge hey?

Well those little fairies have been hard at work again!! Pink, fire engines and even Paw Patrol no less.  Thank you once again to the very lovely, thoughtful people did this 🙂 you know who you are x