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

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

Brave girls and mad Hatters

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

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

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

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

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

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

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

 

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

One crazy-excited Harriet
One crazy-excited Harriet

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

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

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

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

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

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

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

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

Strongest treatment out of the way and a new chapter beginning

Fighting fit
Fighting fit

This week was George’s final week of “Delayed Intensification” <fist pumps the air>  I’m breathing a sigh of relief that his treatment should never be as strong as it has been over the past couple of months.  Barry the port will never receive chemotherapy again… I’m sure of it.

Maintenance

We do need to keep Barry (the port) though as George will still be receiving oral chemotherapy for the next three years.  Access is still required for giving him blood transfusions if he needs them, taking blood for testing and giving him fluids/medication if he’s ill or experiencing bad side effects.  We will be going to Alder Hey every fortnight for a blood test followed by clinic the next day (also at Alder Hey!) for an appointment with a doctor to adjust the chemotherapy dose based on his blood test results.

George will still be going to theatre under general anaesthetic for spinal chemo and bone marrow aspirations every 12 weeks for the next three years too… so while this phase seems like nothing compared to the last 6 months, it’s a long slog.  This phase of treatment is to prevent relapse.

Who the hell is Barry?

Just a reminder of who Barry is for those who only joined us more recently.  The lovely nurses at Alder Hey encourage the children to name their line that’s inserted into their chest.  George being George couldn’t choose something cute and friendly sounding… without thinking he just said “he’s called Barry”.  He’d named a Shopkins toy he had “Barry” the day before whilst playing something silly with our friend Nic, he got a lot of laughs so that’s it now.  The nurses say they’re giving Barry a drink or a wash or some medicine.

Fundraising Heroes

Haynesy still in one piece!
Haynesy still in one piece!

This week Damo received a cheque for funds raised by his good friend Haynesy back in Norwich.  Haynesy successfully completed a biathlon 21st May, running 15 miles around Norwich followed by a 50 mile cycle from Trowse to Beccles in Norfolk and back.  We just want to say thank you for thinking of us and well done for completing it in great time! 5 hours 43 mins!

We know you and all of Damien’s friends down there have felt pretty helpless at times so we just wanted to assure you that you have made a difference – starting with Legoland this week!  George (and Damo’s) favourite pastime in a theme park!

We’ve also had many friends taking part in Pretty Muddy Cancer Research events over the past few weeks too, thank you to all of you who ran for George.  I know there have been at least 5 of you with Georgie Roo on your tops, I’m glad I wasn’t there as I’d have been an emotional wreck!  Just want you to know we appreciate it girls, we’re very proud x

Proud of Lady Harriet and friends

Harriet
Harriet

Speaking of being proud, myself and some of the other mums from school are in the process of organising a sponsored hair cut that our daughters have chosen to be a part of.  Harriet and her friends are going to be having at least 7 inches of their hair chopped off in order to send on to The Little Princess Trust.  Their hair will be made into real hair wigs for children who have lost their hair as a side effect of their cancer treatment, like George.

Any funds raised will also go to The Little Princess Trust to help pay to make the wigs.

George being the age he is, and being boy, has not had to suffer the same emotional trauma that young girls go through.  Bearing in mind this on top of everything else! the painful, uncomfortable treatment, the diagnosis and uncertainty – hair loss may seem small in the grand scheme of things, but for young girl (and boys really) it’s like their identity is taken away as well.

Given the amount of brave young ladies we’ve met since George started his treatment, we felt it would be the least we could do.  I think it will also help Harriet feel like she’s a part of something positive too 🙂 she’s so pleased that quite a few of her friends from school are joining her.

What’s next?

This week we have a blood test and a consultant appointment at Alder Hey to tell us what happens from here on in.  Maintenance officially begins on 1st July and we hope to spend the day celebrating with the children.

Graduating from preschool
Graduating from preschool

The little graduate

Tissues at the ready, I cried when Michelle, the photographer that works with Playdays, handed me this photograph.  I cried because of how beautiful it is, how she’d been so kind to have it put on a canvas.  It will always remind me of the fight my little boy was battling when it was taken.  His hair had started to fall out at this point and Michelle came along even took a few special photos of George with his friends too.

George is “graduating” from Playdays next month for another big phase of his life as he transitions into school.  We’ve got his graduation to look forward to, taster days at school and uniform to try on!  I can’t believe how quickly it has come around or that I’ll have THREE school age children by September.

I’m sad that this huge chunk of time has passed with so many hospital trips, treatment and worry when he should have developing like all the other little ones to prepare him for “big school”.

However, it feels right for him to be moving on with all the children he’s established friendships with, for his sanity and mine!  I know I have nothing to fear with his big brother and sister being around, he’s also got 15 friends from Playdays moving up with him who have known him right through all of his.  They accept him for who he is and treat him like everyone else 🙂 We’ll have the parents moving up with us too (thank God!), who have been there to give me a reassuring smile or hug at the Playdays door…plus the parents of children in the rest of the school who I’m lucky enough to call good friends.  We’ll just be sad to not be in the care of the wonderful staff who go that extra mile.

George is probably going to have hundreds of new big brothers and sisters looking out for him come September, we love the school and the teacher he has.  It’s a whole new chapter that he’ll  take in his stride just as well… and if not, we’ll adapt and wing it as we go along.

Lis x

 

George’s latest chemo and Team Erin Cross

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

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

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

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

Erin Cross
Erin Cross

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

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

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

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

Oliver chilling
Oliver chilling

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

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

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

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

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

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

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

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

Lis x

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

Typical Bank Holiday moisture in the air!

Time for some pinball
Time for some pinball

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

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

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

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

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

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

Post run happiness
Post run happiness

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

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

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

The decking!
The decking!

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

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

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

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

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

So sick bowl at the ready, here we go

Lis x

Oliver – my unsung hero

Tea George?
Tea George?

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

What?
What?

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

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

Play time
Play time

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

Drawing time
Drawing time

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

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

Giggles
Giggles

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

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

Taxi for George
Taxi for George

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

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

Fingers crossed for no broken bones tomorrow!

Lis x

The new phase and the new bedroom

Georgie in his new room
Georgie in his new room

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

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

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

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

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

Grey walls and fire engines
Grey walls and fire engines

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

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

Hallelujah for storage!
Hallelujah for storage!

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

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

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

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

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

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

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

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

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

Lisa and Olivver
Me and my big boy

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

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

Lis x

Our St George’s Day Toddle – Warrington

Me with the wonderful organisers, Helen and Sarah
Me with the wonderful organisers, Helen and Sarah

The photos say it all really – yesterday was awesome.  The day totally exceeded expectations on every level… the amount of lovely people who turned up, the amount of money raised, all the cute outfits, the glorious sunshine and what about all that CAKE!?  A huge well done to all our toddlers!

Hats off to Helen and Sarah (and their families!) for all the organising and pulling everything together.. and to the helpers on the bandstand!.

Harriet selling cakes
Harriet selling cakes

Thank you to those big girls and boys who were guilt-tripping people into buying the remaining cakes ha ha! especially my own Harriet who ran up to me holding a tray asking if i’d like a piece of rocky road before it melts “ooh don’t mind if I do”, picking it up thinking they were just trying to get rid of it and she then said 50p please!!  Not daft that one… and I had the indigestion to prove it.

George in his chariot
George in his chariot

Georgie, oh our brave knight George Rooza, really was like the King! he was a little overwhelmed at the beginning preferring to chill in his new chariot with a cake (who can blame him?) but was laughing and giggling by the end.  He really had a lovely day, we all did.

George and Daddy leading the toddle
George and Daddy leading the toddle

The sun shone brightly on us all for the whole day, I couldn’t believe our luck with the weather.  Especially now while i’m sat looking out at the rain today.  And well done me for keeping it together!  I was emotional in the morning before we went… a combination of nerves wondering whether people would show but also a little sadness for the reason the day was actually happening.  I wished it was just a St George’s Day toddle and wasn’t because my George is poorly.

Setting off, being at the front with our little boy  and walking through those beautiful gardens was also a bit of an emotional moment… knowing there were hundreds of people behind us, literally and figuratively.  There were people I hadn’t seen for years, people had brought their families and friends, old friends had travelled to be there, new friends had made the effort.  We met families that had read our story and battled cancer personally that just wanted to support us because they understood.  People came who saw the event on Twitter and Facebook… social media at its best.

The little Ramsdales - winners of the best fancy dress!
The little Ramsdales – winners of the best fancy dress!

I spotted a little green dragon on the walk that looked very cute so when asked who we thought was the winner of the “best dressed” the prize went to little Freddy! His sister Ffion made a fine knight in her home-made costume (love a home-made job!) too and their sleeping baby sister Marley was ever so cute as a little princess!  So well done to the Ramsdales, I hope you liked your prize.

Amazing turn out
Amazing turn out

It was amazing to get home yesterday and find that we’d hit the £5,000 target we set only 4 weeks ago to fund our garden makeover on GoFund Me! We worked out yesterday from our super organisers with their registration forms that from the toddle alone is predicted to have raised a mahoosive £4,000! some of that has already hit our GoFund Me account direct of the last few weeks and some families are still collecting… so you’ve collectively absolutely blown our target out the water!

We’re so shocked to have raised so much in such a short space of time and will be putting it to great use when work on the garden begins next weekend.  I will be blogging as the work on garden progresses so that you amazing people can see what the funds are going towards.

We hope the photographer from the Warrington Guardian shares the photos he took during the week, he was great at getting us altogether at the start, I’m sure that photo will be one for the memory box here.

Thank you x
Thank you x

We have a million thank yous to make! I tried my best on the day to talk to everyone but know we didn’t get round all of you… so from the bottom of my heart, our hearts! thank you each and every little pair of legs for toddling, big legs carrying babies, your sponsors, all the helpers and organisers, cake and flag purchasers, sharers on social media… Walton Gardens for allowing us to use the lawn and gardens, The Warrington Guardian, Wire FM and Heart Radio for raising awareness – what an amazing community we have.

I’ve already thought it’d be great to make this an annual St George’s day event! and before Helen and Sarah have a heart attack, maybe I could get more involved with the organising next time 🙂 It’s about time we got a little more patriotic and will give us another positive focus for the future.

Sleepy George on Daddy's shoulder
Even the King needs to nap

So what a wonderful way to end George’s “interim maintenance” phase of his treatment…it’s been a welcome break from the weekly theatre trips.  The next few months we anticipate being the hardest but we’ll take it in our stride as best we can.  George is going to be in hospital more often receiving chemotherapy into “Barry” his port for hours at a time, some nasty injections are on the way and more theatre trips under general anaesthetic.  We know it is eventually going to make him better and we know we have an amazing community behind us… so bring it on, we’re refreshed and we’re ready.

Lis x