Leukaemia | Twelve months on | Back to work | child receiving chemotherapy

Sorry for the harsh titles of these blogs sometimes! I’m trying to use keywords so that other families with children with cancer can find us on Google if they’re looking for positive stories.

Latest hospital visit

We’re due an update as it’s been a while hasn’t it.  It’s been quiet as I’ve been a busy little bee and George’s is on top form considering, so we’ve not been in hospital for sickness, just routine appointments – go George!

We went into Oncology at Alder Hey earlier this week after school for George to have bloods taken which were then discussed at his appointment on Wednesday.  Barry (the port) was given a flush to prevent him clotting up, which was a good reflection of how well George has been – it’s usually accessed more regularly because he falls ill before it ever needs flushing.

The doctor mentioned this week that George’s neutrophils are quite high at the moment.  The average Joe’s neutrophils sit between 4 and 11 but George’s need to be around 1 so that the doctors know his bone marrow is suppressed.  His neuts are 3.8 right now so it’s a sign his bone marrow has started fighting something off (any virus or infection), or he needs his chemo dosage increasing.  We’ve got another two weeks to see what the next move is.

The vegetarian

Sugar the puppy has had her fur trimmed
No pictures of the kids, just the dog’s hair cut

What else is new… Sugar has had a hair cut…. oh and Harriet’s a vegetarian!  that news has come as no surprise to a few of my friends.  One day she just refused to eat “an actual chicken’s leg!?” as she put it.  She’s never had an issue with meat until now… now she’s guilt tripping us all over eating defenceless animals.  In her words “it’s like eating Sugar” – our pet dog.  I get her point.  To be fair to her, I admire the fact she’s made the choice herself, no one she knows is a veggie, she’s doing it purely because of how she feels.  She knows her own mind this one.

Giving up work whilst George received treatment

As you all know, I stopped teaching my antenatal classes a few weeks after George’s diagnosis.  This decision didn’t come easy, but it was the only way forward.  The classes could be quite emotionally demanding and I got to the point where I felt my ladies weren’t getting the best of me anymore.  Obviously they all thought I was completely mad still teaching whilst George had just been diagnosed with leukaemia…. maybe I was!   I just thought it might help to keep in a positive place.

Anyway, no regrets on that front, I was released from a restrictive contract and free from the monthly payments to the franchise.  I could relax and look after my children when they needed me the most.  It was during those periods when George was an inpatient, and we were juggling Oliver and Harriet too, I couldn’t imagine being in a place where I could consider working again – and I’d previously only worked 12 hours a week tops!.

Ready to get back to work whilst treatment continues

Twelve months or so later and I know that I’m ready to get back in the game….not ‘on’ the game… those days are behind me 😉  There’s approximately 2 and a half years of daily chemotherapy and theatre for spinal chemo every few months but now we have our routines in place, I feel like there’s a little opening for me to get some of myself back.  School are now well versed on what they’re looking out for, we know which friends we can rely on if we’re rushing to hospital and we understand the drill once we’re there.

Lisa Rooza stood at Hypnobirthing training
Proper Geek at the Hypnobirthing training

We all know I love a good chat, I also enjoy helping other people and given my 4 years experience working with pregnant ladies, things are pointing in the same direction.  I have had a chat with my friends in the local maternity services and the birthy world and found out that, you know what?  I can do something birthy myself!  I’m a qualified complementary therapist, and have now trained in a method of delivering antenatal workshops called Hypnobirthing.  I have now set up my own birth programme and called it Birth Geek.

Birth Geek

I have lots of ideas for Birth Geek, but for now am not going to bite off more than I can chew.  I’m running antenatal workshops on a Sunday in Warrington, Lymm and Knutsford and offering mobile pregnancy massage a few days a week while the children are in school.  I’ve loved getting my teeth into designing my own website… and final branding is almost there, do take a look.

Not lost the plot yet….

We rise by lifting others quote
that we do….

And so a new chapter is beginning, one I never envisaged even 6 months ago – working whilst my child is receiving treatment for cancer!? but look, anything’s possible.  I’m just going to keep mindful of keeping a good balance.  Given I’ve not been sectioned so far, something is obviously working for us!  Celebrating every small achievement, every milestone, taking nothing for granted and living life to the full is not about to change.

Lis x

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

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

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

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

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

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

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

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

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

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

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

The smug dog
The smug dog

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

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

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

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

Lis x

Positive times in hospital, friendships and hair cuts!

An hour after theatre
An hour after theatre

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

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

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

Giggles waiting for theatre
Giggles waiting for theatre

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lis x

George 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 🙂

Stop the roller coaster, someone’s been sick!

Toy fights and George coming in for the kill with his sword
Toy fights and George coming in for the kill with his sword

It’s been another roller coaster of a week – one minute we’re rolling round laughing, toy fighting and forgetting it all for a moment, the next we’re back to worrying, juggling the kids and rushing to hospital.

The football has been on and I’ve enjoyed watching Daddy struggling to watch a complete match with the kids knocking about.  It’s been a comedy sketch of climbing all over him or digging out the noisiest toys known to man to blast out just when you’ve settled down.

Daddy the climbing frame
Daddy the climbing frame

Thursday was the first day of a different kind of chemo called Cyclophosphamide that George has for four consecutive days.  He had it for four days last week following his 5 and a half hour one.  We’ve felt really relieved this week for him to not really suffer many side effects as I’d really built myself up and was fearing watching him suffer with those ulcers again.

George with his friends at PlaydaysInstead George was so well that he even managed a few stints at Playdays this week.  As you can see by the smile on his face, he had a great time and we’re glad he’s still getting to see his friends during the final weeks of preschool before, dare I say it, big school in September!?  The couple of hours gave me some vital time to do a bit of shopping for his birthday this weekend and a I even managed to get out for lunch with my friend Paula for a much needed de-stress.

Cling filmed up
Cling filmed up

On Thursday I’d starting feeling anxious about the nurse coming to access “Barry” the port with the gripper to administer his chemotherapy.  One of the main problems we have, as I’ve said before, is ripping off the bloody adhesive tape that’s used to hold the numbing cream on for an hour.  I changed it up though, Blue Peter style, with cling film and a very still child, we managed to apply the cream and leave it there under the cling film to take effect.  Ta-dah! no painful peeling of tape an hour later and a much calmer Georgie.  He was sat there “King George” literally being fed grapes watching his favourite programs.

Straight after the gripper going in
Straight after the gripper going in

Our good friend Nic came to my rescue to help distract George and make him laugh while the nurse prepared everything.  Even when the needle missed first time and he had to have it done again he did great, mainly because Nic was there clowning around and getting him back on track when he’d started to get upset.

Later in the day I did have to deal with an exorcist scene where George full on puked 360 degrees.  I still can’t say I enjoyed cleaning the cottage cheese veg combo up even if I was satisfied it was at least on the laminate floor.  He just got himself a wipe, cleaned his face and carried on playing, leaving me with tears streaming from wretching, having to clean it in 2 minute intervals so I could recover.

We also had a visit from Lynda of The Joshua Tree this week who regularly pops by to catch up with us and check I’m not rocking in the corner.  It was good to talk about how we’re all doing emotionally, how George is doing and just having someone who understands exactly what you’re going through listen.  Linda had very kindly brought some well-received gifts for all three children, of course it was Lego for George!

The Joshua Tree has been a great source of support for us so it’s been lovely to hear a few friends have chosen them as their charity to raise money for recently – I know Anthea is definitely one of them!

Linda from The Joshua Tree visiting
Linda from The Joshua Tree visiting
Anyone for a song?
Anyone for a song?

 

Strange how things happen, we’d been trying to persuade George to get cycling for ages and had pretty much given up for now, accepting his little are probably just too sore now.  But I think with a combination of practising on a trike at nursery and pure defiance, here’s a picture of him bike riding to pick Harriet’s friend up the other day…. defiance because i’d said “you’re not going to be able to do it George” (Mother of the year!), so of course he had to prove me wrong.  Yes that’s a man sized helmet for his huge Rooza-cranium.

Cycling George
Cycling George

I had the pleasure of meeting the teacher that George is going to have when he starts in Reception this September.  I briefly popped in to the school office and ended up chatting to her about what to expect… the idea was to reassure her that she’s not going to be responsible for doing anything out of her remit, but just what to look out for.  I told her about his diagnosis and how everything came about, how hard it has been and the kindness of others even right up to this day and and she was in bits bless her.  I’m so glad we had that conversation though, it’s really filled me with confidence that we’re doing the right thing for him… she is such a lovely, caring woman, I don’t think I’d want anyone else!

Andrea and Anthea visiting
Andrea and Anthea visiting

My friends Andrea and Anthea visited last week too, forgot to say!  Here they are listing every item from the Argos that George wants for his birthday… my soul is already destroyed from months of this!  Thank God it’s tomorrow and lets hope he’s been listening when I’ve said “you know you’re not getting everything right?”.

This morning George’s temp had jumped up to 38.4 so I off I went just after 7am to A&E at Alder Hey.  His temperature went up to 39.6 and his blood pressure and heart rate were elevated.  After a load of messing about we managed to get up onto Daycare after 9am and George was kept in for observations and blood tests.  If his neutrophil count is 0.5 or below he’s classes as ‘severely neutropenic’ and so would have to be admitted for 48 hours which obviously with a certain birthday looming we could really do without.  George’s count is 0.7 so is borderline due to the chemotherapy he’s on… throughout the day his temp hasn’t dropped to within a normal range but after thorough assessment and plenty of pleading from George, Kev, his ANP, agreed for us to go home on Calpol until tomorrow at 7am.

Having a little snuggle with his brother
Having a little snuggle with his brother

I wish I could say he’s been back to his usual self but he’s not unfortunately.  He’s complaining of pains in his legs, his eyes hurt, he looks like a beetroot and has a speckled rash.  These are side effects of the chemo too so we’re just staying put at home for now.  I did make a bit of a frantic call to Oncology a little earlier as his temperature is now hitting 40 and we were wondering at what point it’s too high to stay here.  We’ve been told to just follow our instincts pretty much so we’re keeping an eye on his breathing and checking his hands and feet aren’t feeling cold – it’s going to be a long night!

You can bet your money we will be in Alder Hey tomorrow, he’s got through the night to get below 38 degrees!  It’ll be a good story to tell though and more reason to drag out his celebrations.

A present from all George's friends on the Oncology ward
A birthday present from all George’s friends on the Oncology ward

Just a few more thanks for more lovely gestures from our friends – thank you for the box of Lego to the lady who is a friend of Laura Linley, I didn’t catch your name but George was so excited to build a big aeroplane!  and thank you Rachel Groarke, your girls are so thoughtful to think of Georgie even when you’re on your own holiday! he loves his message from Bradley and Rory from Hafan Y Mor.

Tonight, I’ve been holding off writing George’s birthday card because I feel overwhelmed with emotion when trying to find the right words to say.  I want him to know how proud we are of him for keeping strong, how much we love him and how much better his birthday will be each year from now onward.  He’s had dealt with more crap than most adults have had in their entire life, yet he still bounces back smiling, resilient and gives us so much back.  Seriously, I’m welling up just typing it.

Then I realise he won’t give a shiney shite when he realises he hasn’t received every item from page 1475 of Argos onwards…

So for now, good night, hoping for a decent night’s sleep and a boy feeling much better for some 4th birthday celebrations.

Lis xx

 

Not for those with a weak stomach!

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

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

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

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

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

Heading to theatre on foot
Heading to theatre on foot

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

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

Feeling drowsy after theatre
Feeling drowsy after theatre

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

Feeling poorly
Feeling poorly

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

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

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

Feeling better in new Pjs
Feeling better in new Pjs

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

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

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

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

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

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

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

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

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

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

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

Poorly boy :(
Poorly boy 🙁

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

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

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

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

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

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

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

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

Harriet and Lola
Harriet and Lola

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

Isobel and Oliver making lunch
Isobel and Oliver making lunch

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

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

Latest beads
Latest beads

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

Lis x

Reality check #TeamIsaac

Lisa Rooza
March 27, 2016

 

I’d already typed an essay about our escapades this week, moaning about the three attempts it took to get into George’s new port when George was poorly, moaning about the hospital having no beds and generally feeling sorry for myself because of him being under the weather.

But now everything has changed.  There was a lady who I didn’t know the name of, who had been the first person to hug me, hold me when I received the worst ever news.  I walked in from the doctor telling us George’s diagnosis and she automatically held out her arms because she knew what I was going through.  She told me she understood and I cried into her shoulder.  I knew she understood.  I’d sat watching her, her husband and their little boy, who quite obviously was undergoing treatment, all day and wondered how they could be carrying on with life so normally?.

I felt their little boy, Isaac, was probably about 18 months old and he sat chucking a yoghurt spoon on the floor every time his dad picked it up.  They laughed and chatted and watched CBeebies together.  They were the first people I thought of when we’ve returned to Alder Hey since and I’ve seen other newly diagnosed families sat around in a trance.  I’ve wanted to be that inspirational family to someone else – and it’s bloody hard sometimes!

I saw this family a couple of weeks ago across the Oncology day unit and the Mummy waved and beamed a knowing smile over to me.  If I’m honest, I wanted to run over and thank her but could see she was chatting with other families.

Last night I read devastating news.  That lovely family’s gorgeous baby boy has gained his wings and his fight is over.  Isaac had Acute Lymphoblastic Leukaemia like George.  This disease is vile.

A lit candle
A light for baby Isaac

Suddenly the moaning I was going to share has paled into insignificance… because it’s my moaning at the end of the day, not Georges, he’s happy, he’s forgotten about the shite I’m worrying about and crucially he’s tucked up in bed with us.

Claire and Gaz, you inspired me to be strong from the start of our baby’s diagnosis, I wish I could give you some of that back right now. My heart is breaking for you.

I know that the family had recently been helped by the Anthony Nolan Trust with help to find a matching stem cell donor for little Isaac.  If you’re thinking you want to go one step further in helping children overcome this awful disease, have a look into donating stem cells.  Georgie could be one of those children one day.

Gratitude in all shapes and sizes

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

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

SSmiling wildly outside Lidl
Yay for my day out!

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

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

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

Over-filled shopping trolley
Balancing act

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

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

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

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

Mollie and her fairy door
Mollie and her fairy door

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

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

 

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

Harriet holding a pile of fabric
Harriet and her new fabrics

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

Lisa Karen and Kath pulling silly faces
Weirdos

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

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

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

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

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

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

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

Sunset over Woolston
Sunset in Woolston

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

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

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

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

 

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