George Made a Wish

It’s been a long time since I last posted – but take it from me, no news is good news!  George’s bloods have maintained really well over the past months with all our hospital visits being routine only.  He’s still enjoying going to school and his daily chemo and trips to theatre for spinal chemo are just part of our routine now.

George Rooza

This time last year Make a Wish Foundation confirmed they wanted to grant George a wish.  At the time we weren’t ready to accept their offer due to George still receiving very intense chemotherapy and still being too poorly.  The lovely volunteers from Make a Wish had come out to our house to chat to George about his wishes which included an ice cream off the ice cream van and to visit the local fire station….! the guys from Make a Wish giggled with us and said they often get this kind of request but really try to make it a once in a lifetime experience for the little ones.

They asked George some questions and through water parks, ice cream, santa, snow, Lego, slides, fire engines and aeroplanes, they came up with three wishes and left to speak to their head office about which one they could make work.  Not long after, we received a letter confirming they’d like to send George on an aeroplane to a sunny destination where he can go on water slides and eat ice cream to his hearts content.

George and his Make a Wish Memory Box

It was an emotional time and whilst still facing a few hurdles I don’t think any of us could really imagine being in a position to leave the country.  We postponed his wish until 2017 so that we could gauge what life in “maintenance” would be like for us.

And so here we are…. I opened the full itinerary this week from George’s Wish pack and had a little cry – firstly at just how personal and special they’ve made it, and secondly with relief.  Relief of how far we’ve come and that he’s so well, we’re actually comfortable with going!

I’ve had to scrape the kids off the ceiling this evening to get them to sleep as we head to Portugal tomorrow morning (if there are any thieves reading this, my house will occupied, I have eyes everywhere and we have a guard cockerpoo who will eat you for her breakfast).

  Georges Beads of Courage

I’ll be honest I’ve had moments of guilt at times, and even considered not sharing our positive news.  I felt like we shouldn’t be accepting this at all while George is functioning so well at the moment. But then I look at all his beads of courage, every one of them representing needles, anaesthetic, doses of chemotherapy, port access, hospital stays, steroids, scans, tests and more… groups of colours or shapes of beads that I remember are from the times that I never want to visit again – the ambulance, when the pain relief wasn’t working, when I sat in my living room questioning whether he could breathe properly, feeling scared and isolated and more recently the moment relapse was being investigated…. I can’t even put into words how that really felt.  What I can say though is it’s all more than anyone should have to endure in a lifetime, never mind a little boy in the space of a year.

So after all my baby has been through, he deserves this, we all do.  His Beads of Courage are going to continue to grow for another couple of years yet – so we’re off to make a little boy’s wish come true – and we will all enjoy every last minute… wouldn’t you?

 

Lis x

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

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

4 guys 400 miles
4 guys 400 miles

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

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

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

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

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

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

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

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

Stroll around Rixton Clay Pits
Stroll around Rixton Clay Pits

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

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

George starting school – a child on chemotherapy

George and his fluffy head
George and his fluffy head

George is starting school tomorrow…. i’ll just let that sink in.

I’ve been cracking on with life like I did when he was diagnosed with leukaemia and burying my head in the sand a little.  Everything’s going to be ok, everything’s fine… I can tell you now, this is going to go one of two ways, i’m either going to be hard faced dropping him off or i’m going to be in bits, with no in between.  Our only saving grace is the fact that he’s just doing an afternoon tomorrow so at least I won’t be in the morning drop off crowd waving him off with Oliver and Harriet.  The rest of the week builds up to a full day then next week, boom, full time education!

This is more than “oh no my baby is leaving me!”, “he’s too young” nerves.  It’s more like “my son is on chemotherapy AND starts school tomorrow” kind of thing… you know the feeling?  No you probably don’t.

I’ve got every faith that his new teacher has got this, she is completely lovely and supportive, the same as the school has been since I had to make the phone call to say “Oliver and Harriet won’t be in today, their little brother has cancer, we’re taking them to Alder Hey”  Now THAT was a shitty day.

No, tomorrow won’t be a shitty one, tomorrow is the next step, the beginning of George’s school life.  It will be slightly different to the other children’s, in that he’s going to spend another 3 years with a suppressed immune system to prevent the “bad cells” coming back.  He has daily chemotherapy, another weekly chemotherapy, blood tests and meetings with his consultant every fortnight and goes to theatre ever 12 weeks for a lumbar puncture and spinal chemotherapy.  Let’s just say, there’ll be no 100% attendance certificate coming his way!

George will be more at risk of infection, and anything like that will mean more “sleepovers” at Alder Hey for IV antibiotics and monitoring too.  He’s going to have to try to maintain a high level of hygiene (he’s 4!?), avoid contact sport because of Barry (his port) and his joints may get sore after physical activities.  Catching anything contagious is unavoidable but we know the school have been on the ball with reminding parents to keep their children off if they’re ill, I mean, puking, the trots, chicken pox – what more could we ask.

The three amigos
The three amigos

Despite all this, we’re looking forward to him getting involved in and enjoying as much of school life as possible, particularly friendship.  Whether he’s reading War and Peace by 6 years old, can do Pythagoras theorem or can sing like a canary… it’s not really what it’s all about in life really is it?  I’m just glad he’s getting to go to bleedin’ school and has a chance to be happy like the rest of the kids from nursery (we miss you Playdays!).

Don’t get me wrong i’ll still post proud as punch photos on Facebook etc when he can draw round his hand at age 12…. that’s because i’m his mum. But whether he’s meeting “age related expectations” at the end of the school year or not is not about to change anything.  We’ve met more than enough families whose children have been taken from them for us to appreciate all of our children just being here.

George and his dody
George and his dody

Since George was a baby and throughout his cancer treatment he’s still always had a dummy (dody we call it) for bed time and when he needed soothing.  He’d always had it, along with his precious scarf comforter.   It was particularly necessary when going through the chemo, needles, anaesthetic and when he has been in pain.

I’d been militant when Oliver and Harriet had dodies when they were little, fretting about their teeth, fretting them being “too big”, or being judged so theirs were banished at the earliest opportunity.  As you can imagine, I hadn’t really give two hoots about the shape of George’s teeth given at one point I worried that cancer might beat him… I certainly did not give a rat’s ass what other people might think.  Like I’ve said before, one of the positive things this awful diagnosis has brought with it, is a whole new perspective… and it’s liberating.

But! actual magical things happened at our house this week… with big boy’s school fast approaching George said he wanted to give his dodies to the baby fairies.  A little door appeared one night in his bedroom and he left his dodies sprinkled with fairy dust outside.  In the morning a fire boat toy had been left in return, a fire boat that George had always wanted!  How did they know?  So George, along with starting primary school has also given away his dodies and has only mentioned them since to tell the story about the fairy door in his bedroom.  The door is still there because the tooth fairy is going to need to get in one day.

So we’ve ironed three sets of uniform, and when I say we, I mean Damien has! well…. I went out buying it all! we’ve tried everything on, got water bottles and PE kits, lunch bags, new haircuts (nearly there George!) and it’ll be baths and an early night tonight.

All ready?
All ready?

On a final note, George has asked nearly every day can he go to school yet. He is totally not arsed!

The Familymoon in all its glory

First day at St Ives Bay
First day at St Ives Bay

The few weeks following becoming Mr and Mrs Rooza have become one of our all time favourite memories.  We’d organised two weeks “Familymoon” in Cornwall with George’s consultant haematologist’s permission.  This wasn’t something i’d ever envisaged being able to do during his intense treatment.

We usually camp but decided we’d make life a little easier not having pitch a tent etc by staying in a caravan.  We’d stayed at St Ives Bay Holiday Park last year with all our friends so knew it had everything we wanted plus this time, a sea view to wake up to in the morning.

View from our caravan
View from our caravan

We packed all of George’s chemotherapy and pain relief, high factor sun cream (you can have this prescribed by the Oncology department for anyone who may find that useful), we knew where the nearest paediatric unit was and then where the nearest Oncology unit was too.

Choosing to have “Barry”, the port under the skin, was proving it’s worth as we didn’t have to worry about keeping a line clean, away from sand, sea etc.  George was able to enjoy the beach as much as his brother and sister, we’re still finding sand in his ears now to prove it.  Another thing that was also really helpful was our pop up beach shelter, twenty quid of Amazon.  Sometimes all the running around would be just too much, so it was great for George to be able to crash out of the sun (or typically for the UK, was perfect to get under when it rained!).

The dune of doom
The dune of doom

Hayle Beach was as beautiful as we remembered, the kids enjoyed boarding down the dunes, building sandcastles and paddling in the shallows.  Picnics on the beach each day made saved us a fortune and a couple of beers whilst we were down there made the honeymoon with 3 kids a little more relaxing!

Oliver is less of a paddling in the shallows man, and more of a bodyboarding in the waves kind of guy.  Damien and Oliver boarded most days whilst I watched excitedly…. or maybe I sunbathed….

Oliver bodyboarding
Oliver bodyboarding

Obviously it poured down on a couple of days, we had to be reminded that this was not the Mediterranean cruise we booked.  Being surrounded by sunburnt Northerners wasn’t enough no, some classic Warrington rain was sent our way as a cursory reminder to appreciate the sunny days.

 

Harriet and "Catherine"
Harriet and “Catherine”

What we saved on eating sandy butties on the beach each day, we basically paid the arcades’ overheads for them to remain open until next season.  Harriet spent about fifteen quid “winning” her Catherine and Claire teddies which I suspect had been in the site’s gift shop since the names Catherine and Claire were trendy for young children.  Oliver spent most of his time being a lurker, waiting for some poor kid is robbed of their last 2p at the 2p machine… only to jump straight on and make a killing – and what shall we do with 48p’s worth of 2p’s? let’s put them all back in again!  Georgie was happy squirting water at duckies or just blatantly buying sweets with his spends and gorging on them.

 

Paradise Park
Paradise Park

On another grim weather day we donned our cagoules and hit the local bird of prey sanctuary, Paradise Park, and was pleasantly surprised.  It helps that Harriet absolutely loves birds.  We avoided taking George into the aviary where Oliver and Harriet fed little parakeet thingies, not only because it’s like a scene from “The Birds” and he’d probably freak out but just in case there was anything that would make him ill.  The kids met penguins, owls and there were even flamingos walking about – beats the seagulls as big as dogs that we were used to back at the campsite!

Kite flying
Kite flying

The children flew kites and the big boys enjoyed the surf on the very windy days.  Harriet would run like a maniac in the wind and George and I would cuddle up and appreciate our windbreak and beach tent.

We changed it up with some rock pooling at Godrevy on the first week, it wasn’t as successful as last year but just as much of an adventure.

Rockpooling
Rockpooling

Oliver and Harriet liked running around the rocks and coves while the tide was out and splashing in the clear pools while George would sit with his little net in a rockpool “fishing” like a gnome.  Some standard wave jumping as the tide came back in violently before we did the five minute drive back to our site for some tea.

One beautiful evening we walked up to the top of the dunes to watch the sunset with a picnic blanket and a bottle of champagne and glasses.  The sky was perfect, it was lovely and still and the ocean was calm.  We opened the bottle, let out a little cheer, sipped the froth from the chilled bubbly then promptly had to help Harriet squat in bushes while she went for a p*ss.  The kids ran around kicking sand at us, George screamed when he didn’t get his own way and Oliver went missing.  You can imagine…. but of course we smiled for the camera anyway and pretended it was hours of romantic bliss rather than the 7 minutes approx.

 

It wasn’t quite a Royal Carribean Cruise but we did manage to book ourselves on a Mermaid Pleasure Trip in Penzance.  The skipper was lovely, he let the children drive the boat, they pulled lobster pots, we saw seals at Seal Cove and got to see St Michaels Mount from the water.  What made the day extra special though was the small pod of dolphins that came swimming along side us… The guys on board put a device under the water with a speaker which allowed to listen to the sounds of the dolphins communicating, it was so special and absolutely made our day.

The skipper chatted to George and found out his love of the emergency services.  He kindly arranged for us to visit RNLI Penlee Lifeboat station in Newlyn a few days later for us to go aboard their Ivan Ellen lifeboat.  Coxwain Patch Harvey, was lovely, taking time to chat to the children about the boat, how it rights itself in 3 seconds if it ever overturns!? showing us the engine room and letting the children sit up at the bridge… it was humbling to learn how many of the local fishermen and people in the community run the lifeboat station voluntarily!? and are on call night and day in shifts… what amazing guys taking time out to help people, risking their own lives, so selfless.

We crabbed in Penzance too but spent most of our time seagull dodging and came away stinking of the bait.  Kids enjoyed catching seaweed though!

The second week of our holiday got even better when our good friends arrived with their children!  not only was it fresh faces for the kids to play with but there’s only so much of my crap Damo can listen to.  The kids were so happy to see each other and it was nice to have a wine buddy for after we’d hit the waves 🙂

There was more dune surfing, fits of laughter, beautiful sunsets, shooting stars and a day trip to Falmouth where we got to see the Red Arrows display! George spent most of it with his hands over his ears as usual.

The holiday was perfect and just what we needed, with the comfort of still being in the UK for George’s sake but still magical and memorable.

This evening George is in hospital with Daddy being checked as he’s spiked a temp for a second time since we’ve been back.  We’ve been in for a consultant appointment twice too to have his chemotherapy altered as his white blood count isn’t recovering quite as fast as we’d like.  The doctors aren’t concerned and feel he has a lingering virus (he’s had a bad cough for 3 weeks now) so have reduced his chemo to allow his own body to work it’s magic.

Georges wisps of hair
Georges wisps of hair

George’s next consultant appointment is on his first week at big boys school! I can’t believe we’re at this point already, it was something I couldn’t even compute not so long ago. His first day is going to be particularly poignant in this house, I’m sad he’s not going to be my little buddy at home any more, I’m worried for him like all the other parent’s will be for their babies… but he shouldn’t be having to undergo treatment for cancer, it’s not fair.

We’re hoping the next few years of maintenance will be kind to George and that we can continue to have more happy times as a family than difficult ones.  We’re made up we got out 2 weeks familymoon and for now we’re enjoying the last days of the holidays at home together around hospital trips and preparing for all three children going to school… looks like George might even have some wisps of hair for his first day too!

xx

 

THE garden!

The old garden
The old garden

In March we started fundraising for our garden project to help make life a little easier for us and the children whilst George is undergoing treatment for leukaemia.  I blogged about it back then, about how our old garden was a bit unkempt and swampy, some of the fences were on their way out and the space wasn’t really being made the most of.

The response was amazing, our target was blown out of the water

Looking down onto the old garden
Looking down onto the old garden

enabling us to buy the very best materials and add finishing touches we’d never imagined! All this was possible because of the love and generosity of our/George’s followers and supporters, friends and family.  Whether you took part in an event, a challenge, shared our story, donated time, people power or money, the garden has had a complete overhaul and we love every bit of it.

 

I’ve included as many pictures as I’ve built up over the weeks and will outline what your money and efforts have contributed towards.

Decking and grass all on one level
Decking and grass all on one level

The garden has been raised to the same level as the step from our house so we no longer have an issue with flooding.  Given the recent huge downpours it’s been great to not have to avoid going outside.  George also doesn’t struggle with access either now 🙂

Decking – love it, looks great, easy to clean, no difficult steps for George to negotiate when his medication gives him sore joints.

Some fence panels replaced to match others in places where they were falling through or rotting.

View of the park through the new gate
View of the park through the new gate

Newly installed stable-door-gate allowing easy access to the park behind us.  We now have the ability to watch the older children and make sure they are safe whilst George is in the garden.  It also keeps the local doggies out when the kids remember to close it!! I found a chocolate lab in my kitchen and it’s shitzu mate running circles around the garden last week.

We now have garden furniture! it’s been nice to sit outside in the milder weather whilst the kids have played.  There’s loads of room for the whole gang, comfortable and modular, so we can change the layout as necessary.

Al fresco dining in Woolston!
Al fresco dining in Woolston!

We also have a decent dining set, with cushions that is adjustable to seat 10 people if need be.  Al fresco dining all the way!

Our artificial grass is lush!  No mud, no dirt, no weeds, no mowing! The kids roll around on it and picnic on it… best investment.

Our pots, plants and flowers have come on wonderfully.  The kids enjoyed getting involved planting (as did my friend Kath who seems to be claiming all the glory for their beauty and success) and I’ve found it really therapeutic looking after them… call me Charlie Dimmock.  In fact. Don’t. Damien’s surprised they are still alive of course!

A scrap on the grass
A scrap on the grass

We’ve had lighting installed allowing us to enjoy the garden right into the night if we’re ever hosting or the kids are having a late one.  It looks pretty impressive in the dark, my Nanna would have said “it looks like bloody Blackpool illuminations out here!?”  All LED though so there won’t be a power cut across Woolston every time we switch them on.

Lighting up the tree
Lighting up the tree

I chose a funky grey and yellow awning and love it!  Not only does it protect George from the sun while he’s particularly sensitive during chemotherapy treatment, but it’s also waterproof so we’ve been able to sit out in the rain too.  Very handy since it rains about 80% of the time.  It’s like an extension to the house while it’s mild enough to leave the patio doors open at the moment.

 

We bought a few extras which have helped complete our new living space – a basketball hoop, chalkboard, swing ball (a nostalgic addition!), birdy feeders and we had a tap fitted outside which has mainly been used for water fights!

George under the awning
George under the awning

We’ve had a day at home today while George didn’t have much energy.  It’s likely I would have made do with the old garden and encouraged George outside but wouldn’t have lasted long.  Instead, we  had a nosey out of the gate when the big tractor came to cut the grass, George has watered the plants with the hose while I enjoyed a cup of tea on the outside sofa, then we read stories out there too.  Oliver came home from school and played basketball, then there was a mass “Power Rangers” brawl out on the grass when Daddy got home from work.  We all had tea Al Fresco – sausage,

Noisy tractor viewing
Noisy tractor viewing

mash and veg, not quite Nigella yet…

 

All these positive, wonderful times are possible now, whenever we want.  We’re excited to enjoy the rest of summer with friends who visit and just be able to chill on the tough days.

When the grass was first laid
When the grass was first laid

From the bottom of my heart thank you for helping bring a smile to our whole family’s faces, this garden has literally changed our lives for the better through the biggest challenge we’ve ever faced.

Lisa, Damien, Oliver, Harriet and George xxxxx

Swing ball with friends
Swing ball with friends

 

George’s latest chemo and Team Erin Cross

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

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

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

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

Erin Cross
Erin Cross

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

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

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

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

Oliver chilling
Oliver chilling

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

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

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

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

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

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

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

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

Lis x

Well deserved happy times

George under the awning
George under the awning

What a blinder of a week… to say it’s been refreshing is understatement following our week in hospital.  George was allowed home on Thursday just gone as he was able to eat a little more, drink and his temperature hadn’t crept up.  He has gradually become more energetic, his appetite is well and truly back and he’s functioning like a normal three year old (apart from walking and moving like a little old man).  It’s been so heart warming and we’ve appreciated every single minute of it.

 

The garden is just about finished… there’s just some work where the BBQ is going to be that needs finishing, there are some lights to go in and we need to attach a few more of the kid’s things to walls etc.  We’ve had a lovely few days in it since the weather has been glorious and have had the awning out too to protect George from the sun while his skin is more sensitive on chemotherapy.

Oliver and Harriet at Woolston Hub pool
Oliver and Harriet at Woolston Hub pool

I managed to take Oliver and Harriet swimming towards the back end of the week last week, we had lunch out and they’ve played out in the sunshine with friends.  Oliver even had a sleepover at his mates on Friday night, much to his delight.

 

Georgie putting out fires
Georgie putting out fires

George is really enjoying pretending to be a fireman with the garden hose – this is a novelty as we never used to have an outside tap.  He’s given the flowers a “drink of water” at least twice a day, luckily they’ve needed it!

George and Finly enjoying a Kinder Egg
George and Finly enjoying a Kinder Egg

We’ve had Finly from next door round for a play and our friends came round for a sneaky peak and a glass of wine or two with their children on Saturday night.  It was great to get out there with somewhere to sit and somewhere safe and clean for the kids to play.

 

Sunday we had more relaxing in the garden and then a BBQ at our neighbours.  George had a ball playing with his friend Casey.

kerryharriet
Kerry and Harriet

Harriet and her friend Kerry have decided they wanted to do something for George and for little girls suffering from the effects of chemotherapy by going for the chop and donating their hair to The Little Princess Trust.  Myself and Kerry’s mummy Zoe are very proud of the girls for such a selfless act at a young age.  If you’d like to support them you can do via this link.  We’ve actually had a few more recruits from the children’s school now hoping join in the big chop!  Thank you for being so thoughtful too Grace and Olivia (Wilson) – There will be another post to follow on the big day for all of the girls xx

We’ve been over to Alder Hey this morning for his bloods to be taken to see how we’re looking for his treatment continuing this week.  We had everything crossed as we didn’t want it delayed and further and just wanted him to be well enough, he seemed it on the outside anyway!

Theres our George!
Theres our George! smiling at Caseys house

So at 4pm we got the call saying everything great for treatment to continue, his neutrophils are 4.1 up from 0.4 which is a great recovery (that’s his white blood cells that fight infection) and his platelets are over 600.. they are his clotting cells and the lady on the phone said he has so much he could share some out!

This funky chicken also enjoyed playing with the hose!
This funky chicken also enjoyed playing with the hose!

We’re good to go, this Wednesday he’ll head in for 10am for his longest period on a drip for treatment so far – five and a half hours of chemotherapy and fluids.  We’re anticipating side-effects, I just hope that whatever they are, they’re not as painful as last weeks.

Following this treatment he’ll have a nurse coming to us at home for 4 consecutive days a week to administer more treatment through “Barry”.

Daddy and George this evening
Daddy and George this evening

Feeling a bit apprehensive for what lies ahead but glad this week is going ahead now, even if the side effects are potentially going to clash with his birthday next week 🙁  we’ll see though, he might surprise us.

 

 

Lis 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

 

 

Friendship, fate and the three musketeers

So I thought i’d be updating with how we got on today.  I’d been psyching myself up, friends had given me a “survival kit” for the car should #pukegate happen again (thank you for that! you know who you are x) and I’d organised for my friend Nic to come with us to hospital for moral support.  But, me being a tool and all, I completely misread George’s treatment plan and Day 9 Chemotherapy is actually tomorrow.

The little gnome
The little gnome

Over the last few glorious days Georgie and I managed to start planting up some hanging baskets and his gorgeous “Little Plot” box.  I’ll be honest, I haven’t got a clue what i’m doing, I literally watched a YouTube video to find out what to do with a hanging basket!

I made some plant purchases at one of my favourite places in Warrington, The Walton Lea Project.  It’s based in the pretty walled gardens at Walton Lea and you can find some absolute treasures there.  I love the fact that all their upcycling, crafts and flowers have all been lovingly worked on by adults with learning difficulties, mental health issues, early Alzheimers and mobility issues.  The Walton Lea Project is a charity providing supported employment.  George’s “Little Plot” was one of the gorgeous upcycling projects made from an old drawer, lovingly painted and lined.  It came with a little spade and some wild flower seeds and we even bought some little strawberry plants from them there, that George enjoyed planting in the sun.

Great helper
Great helper

I managed to nip into Homebase to buy the actual hanging basket stuff and to look for some containers for the garden (big unveil of the garden in another week or so!) and gathered I’d just ask a member of staff what I could put where.  There was a lady stood next to me while I was admiring a Jasmine plant that smelt beautiful and she commented on how lovely it was… I said i’d worry it wouldn’t survive in my hands, I don’t even know what to put in a hanging basket!  I told her our garden is going to be a complete blank canvas as we’re having it made over, she mentioned a few names of flowers and carried on with her day.

Further round, as I stressed while trying to get my shopping trolley over a hosepipe that was trailing across the walkway, the lady approached me again to tell me about a plant that would be great in containers in our garden.  I told her about George and the children, and why making the garden safe, easy to maintain and pretty meant so much to us now.  She stopped in her tracks and told me that she completely understood what we were going through, with a little break in her voice, that she had a garden for her son too.

Forget me nots
Forget me nots

Sadly, her son’s garden was full of Forget me Nots and Bleeding Hearts for she had lost her little boy to cancer.

I had a huge lump in my throat and just wanted to hug her, she was looking emotional too… It must have been fate for us both to be stood at the Jasmine plant at the same time.  I told her all about the wonderful people who’d rallied round to help us and to raise money for us as a family.  She said it had restored her faith in humanity.

I don’t know who the lady was, or her little boy’s name but I walked out with the Jasmine plant, Forget me Nots and Bleeding Hearts in my trolley, for our special garden and all the angels that I’ll tell my children about.

I must also add that George has been pretty chipper this week so far and has even been to Playdays!  the thoughtful girls there had organised for George to have his little graduation photo done just in case he isn’t well enough to attend later in the month.  I’ve not seen his photo but the photographer, Michelle Geritas was a cracker by all accounts and managed to take a few snaps of George and his best friends Casey and Seth.  How beautiful are they!?

So we’re off to a wonderful start this week, ready for tomorrow; armed with the survival it, the promise of a beautiful garden and as always the support of our amazing friends.

Lis x