Updates

Our progress towards raising our 2m target

George and the Giant Pledge
George and the Giant Pledge
Today I ventured out of the house and into Redhill for what feels like the first time in ages. It goes without saying, we've been firmly sticking to the lockdown #3 rules relying on home deliveries and only going to our local common two minutes away or Woody out for his daily run as exercise but it's funny how somewhere so familiar can feel so novel and strange.

I left the house as Alex's new meds were ready to collect and we want to start him on them this Monday. I know it's not as big as the medicine haul we took home on this day in 2017 when George finally left The Royal Marsden - Sutton having finished his first ever round of chemo...and nothing will compare to all the drugs, dressings and medical equipment we accumulated over the course of the year of his cancer treatment (as you can see from this pic taken on Jan the 16th in 2018), but the start of Alex's epilepsy meds still feels significant!

Thankfully the shops were super quiet and I drenched myself in hand sanitiser every step of the way as the last thing we need is to bring more chaos with covid into our house at the moment! (I can't remember if we ever said but Woody's plasma he donated for the covid trial came back as not having enough antibody levels their test could detect which doesn't necessarily mean he didn't have the virus but equally his body isn't showing enough levels of antibodies to show that he did 🀷🏼)

Either way a yummy brunch and a slow day where the boys alphabetised their Match Attax cards made for the mellow Saturday we all needed (aside from when Leicester City Football Club scored their two goals in tonight's game where Woody and the boys could be heard by all of our neighbours!) Yes we let Alex and George stay up as one late night isn't going to hurt them, plus after a day of lazing around and a few weeks where we've gone to ground it felt like the perfect way to spend our evening.

Between us we've got this.

#thebigpush
#aimhighstaypositive
#giantpledge

Donate or join the Giant Pledge team with your own fundraising event in 2021 at https://giantpledge.com/team

Buy one of our 'Tackle Childhood Cancer' tees or pick up your superhero cape in honour of the doctors, nurses and super brave cancer kids at http://giantpledge.com/shop

Sing along & share our charity 'Do a Big Poo' song, https://youtu.be/U3iOmhIIc_s or buy it here, https://giantpledge.com/buy

Follow us on Facebook: https://www.facebook.com/georgeandthegiantpledge
On Twitter: https://twitter.com/giantpledge
And on Instagram: https://instagram.com/giantpledge

Or for help with any event you may be thinking of email Lydia.Clark2@rmh.nhs.uk and cc us at GeorgeandtheGiantPledge@gmail.com
George and the Giant Pledge
George and the Giant Pledge
I know I said it last week but I really couldn't be more grateful that it's finally the weekend! Woody's birthday yesterday was a great distraction to what's otherwise been a wobbly few weeks with the boy's medical shenanigans still hanging over us, plus the added joy of juggling homeschooling and work being the final straw to truly test all of us.

There's nothing like sitting in a fairy lit polytunnel to give you a different perspective as well as making for a fun covid lockdown alternative! For those of you that asked it wasn't the warmest of evenings but that's probably because, having set it up in the dark, we couldn't for love nor money get the cover to get any closer than 30cms away from the ground! (It's either faulty or we were doing something wrong?!) That said we wrapped up warm and, despite the constant ankle nipping breeze, we had a lovely cocooned evening and stayed out last night thanks to the heater we had in there with us! (If you wanted to see what we bought you can find it here, https://www.aosom.co.uk/item/outsunny-walk-in-greenhouse-poly-tunnel-green-house-steel-frame-in-l-size-transparent~01-0471.html not that we're sure we'd recommend this exact one but I'm sure there are others that would work perfectly out there!)

If only you could throw fairy lights and a heater at any situation to make it feel better! Yes tonight's photos look so similar to any other lockdown day, starting with Joe Wicks The Body Coach and various activities throughout the day. But today I emailed colleagues and clients to let them know I'm going to take some time out to focus on the kids and down tools for personal reasons.

In short ever since things flared up with the boy's just after Christmas, despite desperately trying to stay on track and keep a lid on my anxiety and all of my challenging feelings, this week I finally cracked as recent events have taken me right back to a place it's taken me 3 years to move on from when I was signed off on long term sick leave following George's original diagnosis and cancer treatment.

It's not always easy to admit that you're struggling but truth be told, even if everything is resolved in the next few weeks with the boys and turns out 100% tickety boo as we're all so desperately hoping it will, I need to get myself back into a better place too. I'm lucky to work for a company that's so generous and have a team and clients that are so understanding as I'm painfully aware not everybody is in the same position. But at the end of the day we each have our own thresholds and can be the only true custodians of our own capacity barometer ...it comes to a point where we can't ignore where we're at no matter what our circumstances are as the consequences could be dangerous.

To that point, if for whatever reason you're also really struggling I just hope you can also find your way to navigate through the challenges you're currently facing. Sending love to you all as things really aren't easy for anyone at the moment and sharing helpful numbers again for anyone that might need them at the moment.

Between us we've got this.

#thebigpush
#aimhighstaypositive
#giantpledge

Donate or join The Giant Pledge team with your own fundraising event in 2021 at https://giantpledge.com/team

Buy one of our 'Tackle Childhood Cancer' tees or pick up your superhero cape in honour of the doctors, nurses and super brave cancer kids at http://giantpledge.com/shop

Sing along & share our charity 'Do a Big Poo' song, https://youtu.be/U3iOmhIIc_s or buy it here, https://giantpledge.com/buy

Follow us on Facebook: https://www.facebook.com/georgeandthegiantpledge
On Twitter: https://twitter.com/giantpledge
And on Instagram: https://instagram.com/giantpledge

Or for help with any event you may be thinking of email Lydia.Clark2@rmh.nhs.uk and cc us at GeorgeandtheGiantPledge@gmail.com
George and the Giant Pledge
George and the Giant Pledge
I'm lucky to have had a lovely birthday today having being spoiled by Vicki and the boys starting with breakfast in bed, being given some lovely presents... including an interesting tiramisu at lunch for pudding! Obviously we still had the joys of homeschooling to manage much to George's disgust as he kept saying it should have been cancelled as it's Daddy's Birthday (nice try George!)

I still managed to get out for my Jog 40 event to help raise funds for The Giant Pledge - in fact I've already finished the 40 mile target but will keep running 5km a day until at least the end of January, see more at https://www.justgiving.com/fundraising/giantpledgejog40 Often when I run I find my mind wandering either flashing forward or reflecting on past events. Today seemed to be birthday themed including everything from eating dinner with Vicki and the boys at Wagamamas last year having just dislocated my shoulder, through to my birthday at The Marsden with our family while we were in for George's first ever week of chemo...we needed no excuse to try and find or create a fun and positive distraction and atmosphere that weekend. It's so sad to think that, due to covid, only one parent and no visitors are allowed into hospitals to support children with cancer now. The impact really does put so much strain on families that are already massively struggling.

Talking of distractions I have to admit Vicki and the boys did a good job of making the most of today despite the fact the three of them were working and didn't so much as leave the house all day! Vicki tell's me she'd seen adverts for garden pods you can hire for special occasions but decided to go out on a limb and bought a gardener's transparent polytunnel instead and threw our Christmas fairy lights, garden furniture and electric heater in it as a far cheaper alternative! ...you should have seen us all trying to set it up in the dark after she'd finished work!

So tonight Vicki and I sat outside enjoying a tasty takeaway we'd got from our friends at Cullenders Parkside. For a moment there we forgot about covid and all of our boys current medical shenanigans.

Between us we've got this.

#thebigpush
#aimhighstaypositive
#giantpledge

Donate or join the Giant Pledge team with your own fundraising event in 2020 at https://giantpledge.com/team

Buy one of our 'Tackle Childhood Cancer' tees or pick up your superhero cape in honour of the doctors, nurses and super brave cancer kids at http://giantpledge.com/shop

Sing along & share our charity 'Do a Big Poo' song, https://youtu.be/U3iOmhIIc_s or buy it here, https://giantpledge.com/buy

Follow us on Facebook: https://www.facebook.com/georgeandthegiantpledge
On Twitter: https://twitter.com/giantpledge
And on Instagram: https://instagram.com/giantpledge

Or for help with any event you may be thinking of email Lydia.Clark2@rmh.nhs.uk and cc us at GeorgeandtheGiantPledge@gmail.com
George and the Giant Pledge
George and the Giant Pledge
After a lengthy debate between Woody and I as to who was best placed to teach George about fronted adverbials vs who should sit in with Alex during his MRI scan today, I can tell you my C in GCSE English left me in the seat at East Surrey Hospital! ...let's just say we should all play to our strengths which became apparent yet again when we were making Woody Tiramisu for his birthday tomorrow 😬

Not known for my skills in the kitchen, with Woody always doing most of the cooking, the moment I realised I was grinding in pepper by mistake vs picking up the salt to add a mere pinch as per the recipe, I'm not sure any of us should eat the pudding we created for him as that wasn't the last of my overtired errors whilst making it πŸ€¦πŸΌβ€β™€οΈ

As for Alex every blink, every breath, even every lip movement and extended sigh had me on edge! I sat in the room down by his feet while he was having his MRI scan today and watched with pride as he took it in his stride and did unbelievably well! That said, even though it looked as though he didn't move a muscle, with his head in a frame wedged in with extra foam to restrict any movement, they still had to do a number of the imaging sequences again due to blurring from ever such tiny movements...you can imagine my thought's about George managing this for an hour and a half next week 😳

Obviously they needed him super still, not least because they wanted to get clear views of the middle of his brain (the Hypothalamus) which, as you can see from this diagram we found on the internet, controls many of our 'automatic' brain functions including temperature, hunger, fatigue, sleep, thirst and hormone regulation. It can be one of the many areas responsible for epilepsy and where Alex's consultant suspects his are most likely happening (albeit they can be anywhere in the brain hence the detailed MRI today) Isn't it amazing these scans can be used to help see exactly where the seizures are taking place!

They also cannulated him and added contrast to his bloodstream which improves the visibility of intricate structural images picking up inflammation, tumours, blood vessels, blood supply etc. much like they do at the Marsden for George's cancer scans. To that point, I'm not sure what was more traumatic for Alex...being cannulated and laying super still for an hour in the MRI scanner or coming home and jumping straight into a Biology lesson learning all about giving birth and the reproductive system (I came into the room just as they were talking about the mother's waters breaking πŸ˜‚) Joking aside at least we had a giggle about this today vs the super sad pictures of four-year-old George in 2017 during his first ever round of chemotherapy on this equivalent day πŸ˜”

Between us we've got this.

#thebigpush
#aimhighstaypositive
#giantpledge

Donate or join the Giant Pledge team with your own fundraising event in 2020 at https://giantpledge.com/team

Buy one of our 'Tackle Childhood Cancer' tees or pick up your superhero cape in honour of the doctors, nurses and super brave cancer kids at http://giantpledge.com/shop

Sing along & share our charity 'Do a Big Poo' song, https://youtu.be/U3iOmhIIc_s or buy it here, https://giantpledge.com/buy

Follow us on Facebook: https://www.facebook.com/georgeandthegiantpledge
On Twitter: https://twitter.com/giantpledge
And on Instagram: https://instagram.com/giantpledge

Or for help with any event you may be thinking of email Lydia.Clark2@rmh.nhs.uk and cc us at GeorgeandtheGiantPledge@gmail.com
George and the Giant Pledge
George and the Giant Pledge
Today I found it hard to believe it's only Tuesday as tonight we're both sat here shattered after just our second day with both the boys homeschooling again 😳 To be fair we've got a few other things on our minds not helping us sleep at night so I guess there's no real surprise there. Yes things are looking far more promising for George with him having had a clear PET scan on new year's eve, but that doesn't stop things playing on our minds and we just want these other scans out of the way to be 100% certain we've got nothing to worry about with this new lump as we're sure you can understand.

Ironically it was on this day way back in 1931 Professor James Ewing, who discovered the malignant bone tumour that later became known as #ewingsarcoma (having first written about it in 1921), featured on the front cover of Time Magazine...don't ask us why we find that so fascinating πŸ€“ Although one thing that's fairly shocking is how little the treatments have moved on to beat this rare and aggressive cancerous disease albeit we're now 100 years on...! (Remember the newest chemotherapy drug George was given in his front line treatment was from the 1980's with the oldest, Vincristine, from 1963!)

The other anniversary today was the first time our Giant Pledge 'Do a Big Poo' song was ever sung by the then Marsden Music Therapist! Those of you that have followed our blog for a while may remember he offered to sing George an impromptu song and we jokingly asked him to sing George's poo out πŸ’© (He couldn't have the fourth of his chemotherapy drugs, Vincristine, at the time as it was too toxic for his body unless they could be sure it would pass through him).

To date the charity single we went on to have professionally recorded at the Youtube Studio's, with the help of YouTube vloggers Niki and Sammy and CBBC producer Mykel Dunn, has now had 1 million views on YouTube - truly astonishing! Why not have another listen here, https://www.youtube.com/watch?v=U3iOmhIIc_s

As for the rest of our day, someone was desperate for some attention today! (Yes that's George at my desk and then on the floor pretending to be asleep having waited for so long for me to spend some time with him πŸ€¦πŸΌβ€β™€οΈ) But now it's time for Woody and I to nod off as tomorrow it's Alex's turn in the MRI scanner to help refine his exact type of epilepsy following his recent diagnosis.

Between us we've got this.

#thebigpush
#aimhighstaypositive
#giantpledge

Donate or join the Giant Pledge team with your own fundraising event in 2020 at https://giantpledge.com/team

Buy one of our 'Tackle Childhood Cancer' tees or pick up your superhero cape in honour of the doctors, nurses and super brave cancer kids at http://giantpledge.com/shop

Sing along & share our charity 'Do a Big Poo' song, https://youtu.be/U3iOmhIIc_s or buy it here, https://giantpledge.com/buy

Follow us on Facebook: https://www.facebook.com/georgeandthegiantpledge
On Twitter: https://twitter.com/giantpledge
And on Instagram: https://instagram.com/giantpledge

Or for help with any event you may be thinking of email Lydia.Clark2@rmh.nhs.uk and cc us at GeorgeandtheGiantPledge@gmail.com
George and the Giant Pledge
George and the Giant Pledge
Well that was a bit of a shock to the system with both our boys now back homeschooling. Alex may have started last week but George had a few more days reprieve. It wasn't long before the tensions with tech, printers and disagreements started with George not being a massive fan of homeschooling but we all got through it 😳 Being that he missed so much of his formative years when he was off for his cancer treatment we'd love him not to fall behind any more but it's a fine line between that and not stressing the kids out as it's just not worth it!

It was like having a long lost friend come and join us in our living room having Joe Wicks The Body Coach back on our screen. Alex's timetable means he's already online before 9 so this morning it was just Woody and George but it certainly got their heart beats going. We're now all spread out in different rooms in the house with Alex being far more self sufficient with his new school's live lesson set up vs George who still needs constant hand holding with help from either one of us so needless to say it was a challenge to not be massively distracted today.

I say that not only because of lots of interruptions while trying to work from home but also because we had a gastro appointment for George and his St George's Hospital team to help manage another of his ongoing cancer left overs / complications from his treatment (which thankfully got moved to a telephone appointment!) We also spent time longing for our phones to ring with a revised date for his MRI scan at The Marsden. Not long after lunch they came up trumps calling to let us know they've managed to bring it forward from his routine pre booked scan to check for relapse on the 9th of Feb through to the 22nd of Jan! (Even if this one is a gamble as it's not with a general anaesthetic so we've just got to hope he can lay still🀞)

Yes we still have to wait until Friday week which feels like a lifetime away, but it's an improvement nonetheless and we're massively grateful to the team for sorting it out. All that ultimately matters is getting 100% clarification that this new lump on his back isn't anything to worry about πŸ™ (The MRI in itself won't be able to tell us that but we'll get the first true view of what, if anything, is also going on under his skin and further clarity on what it is in fact we're dealing with!) Either way my head felt like it wanted to explode by the end of the day and I'm sure I'm not alone in feeling stressed as we've all got so much more on our already pretty full plates thanks to the coronavirus 😫

Between us we've got this.

#thebigpush
#aimhighstaypositive
#giantpledge

Donate or join the Giant Pledge team with your own fundraising event in 2020 at https://giantpledge.com/team

Buy one of our 'Tackle Childhood Cancer' tees or pick up your superhero cape in honour of the doctors, nurses and super brave cancer kids at http://giantpledge.com/shop

Sing along & share our charity 'Do a Big Poo' song, https://youtu.be/U3iOmhIIc_s or buy it here, https://giantpledge.com/buy

Follow us on Facebook: https://www.facebook.com/georgeandthegiantpledge
On Twitter: https://twitter.com/giantpledge
And on Instagram: https://instagram.com/giantpledge

Or for help with any event you may be thinking of email Lydia.Clark2@rmh.nhs.uk and cc us at GeorgeandtheGiantPledge@gmail.com
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