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

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

Joshua Tree Family Day – Feb 2016

We recently found out about The Joshua Tree – a wonderful charity who support families affected by childhood cancer.  They set up 10 years ago when their little boy, Joshua, was also diagnosed with Acute Lymphoblastic Leukaemia (like George).

So far they have provided us with emotional support through 1-2-1 visits at home and also invited us to their family days in Northwich, Cheshire.  It was felt really beneficial to be around other families who are experiencing the same challenges as and no doubt emotions as us.

Oliver made a friend the same age as him who is now in the maintenance phase of his treatment.  He’s a lovely boy who Oliver is looking forward to seeing again next time.  It must be really comforting for Oliver to see his new friend leading a normal, happy life.  I’ve felt Oliver has been particularly worried about George’s diagnosis.

Harriet and Oliver in aprons giving a thumbs up for baking
Harriet and Oliver ready to bake

Harriet was in her element being crafty, creating a Mother’s Day card for me and both the older children got stuck in baking too.

There was even a Lego Police Helicopter there that George homed straight in on.  He loves Lego and the emergency services 🙂

I think Damien having the chance to chat to other Dad’s was really helpful.  I love a good chat wherever I am but Damien’s not one to walk up to someone and start a conversation – the lovely Lynda from the Joshua Tree was great at introducing families to each other.  I got talking to a few other mums whose children are also being cared for by Alder Hey so found out a few tips and about support groups I was previously unaware of.

All in all a lovely positive day out for all of us 🙂