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