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

Neutrophils, Optimus Prime and a Character Award

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

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

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

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

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

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

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

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

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

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

 

 

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

Preschool and quiet sunny days…

This week George has managed to attend Playdays (his preschool) with the care and support of the fantastic staff there.

During this gentler phase of his treatment he’s managed to attend Playdays more than we’d ever anticipated.  He absolutely loves it, he loves his friends, the staff and we’re at the stage where we’re completely at ease with him attending (his health and energy levels permitting).  This wasn’t something I ever thought would be possible when he was first diagnosed with Leukaemia?!

We wanted to allow George to have as normal a childhood as possible regardless of his leukaemia treatment and although he is at risk in this setting more so than being at home, the positives completely outweigh the negatives in our opinion.   The positives being his about his mental health, developing social skills, maintaining his friendships and education preparing him for starting ‘big’ school in September (hopefully!).

We luckily already had a great relationship with the staff there and have also developed trust and even friendship with a lot of the parents, this is what has made all this possible for George.  So I want to say a huge thank you to the parents of George’s friends at Playdays for being so understanding of our situation and considerate.  I know some of you have been panicking yourselves.

Georgie feeding the birdies in the garden
Georgie feeding the birdies in the garden

Playdays have had the support from George’s Macmillan Nurse to ensure he is safe and the staff understand what they’re looking out for when he’s becoming symptomatic – I am always local and available for him at the drop of a hat too.

I think at first we were all a bit nervous of how it would work but things have gone really smoothly – Sharon and the girls recognised when George isn’t himself now and it’s not as scary as we all first thought when he is starting to go under.  I think we’ve had a couple of occasions where we’ve had to dash to hospital with a temperature during the day or where he’s just needed to go home as he’s burnt off all his energy.

The last few days he’s been so stubborn and has literally begged to go even though I can see he’s shattered.  Yesterday he was particularly quiet and I’d been wondering if he was coming down with something but I think he’s just not stopped on the days he’s been in preschool so is exhausted.

Today we’re having a quiet one and trying to allow Georgie to recharge his batteries ready for his St George’s Day toddle on Saturday at Walton Gardens.  He’s pottered about a little but has spent most of the time lay down resting.  He’s not eating quite as well as he was but it’s down to him having lots of ulcers in his mouth 🙁 this is common when you’re on chemotherapy, he doesn’t even complain about it.  He’s also had a nosebleed today which can be a sign of low platelets (again caused by chemo), George took himself off to the toilet and come walking back in holding a tissue to his nose saying “im just having a little nosebleed” …it stopped quite quickly and we’ll keep an eye on it.  He’s not phased by it one but.

These things aren’t so scary for us either now compared to how you feel about it in the early days of diagnosis.  It just becomes part of life now we know what we’re looking for and George just accepts it as normal for him.

Photo of Georgie and Mummy taken by Warrington Guardian
Photo of Georgie and Mummy taken by Warrington Guardian

We had a little more fame this week as our St George’s day Toddle has been featured in the Warrington Guardian It seems it’s going to have a great turn out with over 100 families saying they are attending.  There will be cakes, drinks and St George’s Day flags for sale while you enjoy getting involved with the toddle.  If you’re on Facebook you can view the event here and join the fun.

This event has been organised and sorted by my wonderful angels, Helen Dolce Lund and Sarah Poole who I can’t thank enough for making it happen.  Thank you also to all the people who are baking cakes and volunteering to run the cake sales, the toddle registration and helping guide the kiddies along the course.  I know my own Oliver and Harriet and some of their friends are going to be getting stuck in helping us out too 🙂

You can see how our fundraising is going here and also sponsor George himself if you want to.

So after a nice quiet day with the little man himself today, we’re going to collect the rabble from school shortly and see how they’ve got on on the Queen’s Birthday whilst dressed in red, white and blue… that was fun trying to sort out this morning amongst the building work going on upstairs and George sleeping in until 8.30am!  Then it’s drama class for Harriet tonight and we’d better think about baking something for Saturday.

I also know there’s a surprise at George’s preschool tomorrow that all the kids are going to love so hopefully he’ll be feeling up to it in the morning, even just for an hour or so.

Hope to see as many of you all on Saturday as possible, I will try my best to keep myself together xxx

Latest hospital visit and upcoming treatment

Georgie on his new trunki (thank you Ria!)
Georgie on his new trunki (thank you Ria!)

On Friday we had a really positive trip to Alder Hey as far as hospital trips have gone so far for George.  First off, the consultant felt that George’s blood test from the Wednesday was great, all his counts were up! so they decided they would hold off doing an unscheduled bone marrow aspiration and just stick to the lumbar puncture for spinal chemotherapy.

Going under general anaesthetic had always been one of the main stresses for George (and us!) as he would fight the gas mask thingy and cry until the anaesthetic took effect…then he’d wake up really distressed and have to stay lay flat (more like be pinned down!) as sitting up within an hour of having it can cause headaches from the chemotherapy.

So, first off, his new port was accessed by the lovely nurses who got it in straight away, he did cry a little but got over it very quickly and carried on playing on the ward.  He was also one of the first children to go to theatre so we didn’t have to wait around for ages whilst nil-by-mouth.

We waited in the inpatients theatre waiting room and George cycled round on a trike whilst waiting to be collected by his anaesthetist.  He chose Daddy to go in with him and Daddy said he fell asleep really peacefully as they could just insert anaesthetic with little fuss through “Barry” (the gripper on the port in his chest).

George just chilling after theatre
George just chilling after theatre

When George came to, he was really chilled and even laughing with the nurses in recovery whilst lying still with no problem.  We went back to 3B Daycare and the only time he became upset was when his feast arrived and he had chicken nuggets instead of chicken strips!?  Bloody King George?!

George savouring his first bite
George savouring his first bite

He soon got over it… and that first mouthful following nil by mouth since the night before looked like it really hit the spot 🙂

Whilst in Daycare I did pick up on a few of the other parents and nurses who looked upset.  It’s awful that this is becoming a familiar situation and I could only assume the worst.  Once home I saw online through some of the new friends we’ve met at Alder Hey that another beautiful young man has gained his wings.  Another family left devastated, another family that we only saw recently with their child smiling in bed on the same ward as George.  I feel sick with sadness for them and for Charlie, a courageous young man who has been taken too soon.

Again, its hit home, the situation can change overnight, we’re appreciating every moment with our family wherever we are.

We’re about to embark on the more intense part of George’s treatment, the doctor outlined what’s going on from the beginning of May.  It’s going to be hours of intravenous chemotherapy and a whole host of other drugs and fluids, it’s the more aggressive phase that we’ve been building up to.  We’re anticipating all the yucky side effects that he’s been experiencing so far are going to be more intense.  We know it’s probably going to be the most testing time but feel lucky to have access to this treatment, to these amazing doctors, a state of the art hospital and it’s all for FREE!!!  just imagine having to deal with all this with a bill at the end!? to think now that one of my main worries in the beginning was about him losing his hair seems ridiculous, but hey, you have some mad thoughts in those first few weeks.

Harriet and George bathtime
Harriet and George bathtime

In other news we found out George has got in at his big brother and sister’s school and starts in September – I completely forgot we were even finding out on Friday because of going to theatre.  That’s going to be whole other ball game with the Macmillan nurses having to visit school and everything… and something that I can’t even comprehend until we’re through the next few months.

We’re very excited about the upcoming St George’s Day toddle and everything appears to be coming together thanks to two lovely ladies who attended Daisy Birthing classes – Helen Dolce-Lund and Sarah Poole, you are absolute stars.  We’re hoping for good weather but being in the North West, it may be that we’ll be rocking our wellies rather than flip flops – we still anticipate a great St George’s day for the bravest George we know!

Next project for Mummy will be getting some birthday plans sorted for our little Harriet, who was also almost forgotten about (bad mummy!) until she asked for a party!? cue me thinking oh my god, when is it?? it’s only 2 weeks away!! still plenty of time….. <frantically Googling girls parties Warrington>

Have a lovely week folks, hope to see a lot of you on Saturday, I can feel myself choking up already xxx

Mummy & Harriet quality time

 

Harriet and I had a lovely Sunday at Dolly’s Haberdashery and Sewing School in Warrington a few weeks ago.  We needed some girly time she had been feeling a little bit overlooked lately.

Father Christmas had bought Harriet a sewing machine that unfortunately had remained in the box ever since it was unwrapped :-/ George’s diagnosis came just after Christmas so everything had been up in the air for all of us.  The box had become a wonderful place to pile clothes on top in the meantime.

I’d seen Dolly’s promoted on Facebook through friends and thought it’d be a nice idea for us to go together.  So we set off a few weeks ago and looked forward to a girl’s afternoon.

Linsey was very patient with a very giddy “enthusiastic” Harriet who’s alter ego had arrived too “Harret the Carrot”! I think i’ve laughed along with crazy Harret the Carrot a bit too often so she’s a regular visitor.

Harriet wanted to create an amazing dress or a hat, but as that was a little ambitious when we didnt even know how to thread a sewing machine, we settled on a nice bag instead.

Once Harriet stopped jumping ahead of herself and being cheeky, we learnt how to thread our machines and got on with our bags.  We were there for around an hour and a half which I thought was great value for money at £30 for the private class.

Us modelling our handmade bags
Our new bags and a giddy kipper

With our finished articles we swished down the street into Warrington Town Centre for a mooch around the shops.  Harriet spent her pennies on some trinkets which have subsequently been lost in the abyss of her bedroom, but she enjoyed carrying them in her bag for a while.

Armed with her new skills, Harriet has since been sewing little “Harret the Carrot” bags to order for her friends, they’re now in high demand!  she’s even had Nanny Jane posting fabric up from her shop for her.

Harriet’s learnt new skills and has had a great sense of achievement since with her orders – we will be back for more soon!