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.

George is in Maintenance!

A treat to celebrate maintenance

Bring on the Maintenance!

Last week George had a blood test to check whether he was good to move into maintenance and we got the call on the same day to confirm all was well.

On Thursday we had an appointment with one of the Consultant Haematologists, Dr Keenan.  He checked George over as he has a little cough and some strange loss of pigment on his skin in patches on his tummy – we’re keeping an eye on this as it’s not something he’s come across before.  The main reason for the appointment was to officially move George into the “Maintenance” phase of his treatment.

Maintenance will run in cycles, but essentially is the remainder of the treatment for Acute Lymphoblastic Leukaemia – it’s working on preventing the return of the cancer cells.  Some of the chemotherapy that George will receive during this phase will be administered orally by us at home.  He’ll still need to go to hospital every fortnight to have blood tests and be seen by a doctor, the doctor can then prescribe the appropriate amount of chemo for the following fortnight and so on.

Nuts
Nuts

It doesn’t reach the nuts!

The chemotherapy George has at home (Mercaptopurine…. or chocolate medicine as he calls it!) does not reach his his nuts!  So the consultant had to give me a demo on checking his boys bits (on George this is btw!!) which we have to do on a weekly basis… any slight change in size, lumps, bumps or tenderness and we have to take him straight back to hospital.  Relapse in boys testes is more common than anywhere else.

Nor does it reach the brain!

The chocolate chemo medicine also doesn’t reach the brain so George will still be going to theatre every three months for the next three years to have intrathecal chemotherapy.  This is chemotherapy into his spinal cord via lumbar puncture so that it can treat the central nervous system where the other medicines don’t reach.  He’s been having this frequently up until the “break” he had, if you remember reading about him not being allowed to sit up after theatre earlier on when things were quite traumatic.

Everything covered

So we’re feeling pretty confident that everything is covered… a small number of leukaemia cells can survive everything that has been thrown at it up until now but this next few years will hopefully be wiping them out completely.  Relapse can happen at any point, but it is more likely to occur the year after the end of treatment – so 2019-2020!? we’ll never be free of the fear that it can return and will be living with the uncertainty for many years.

Wild
Kids being wild

Living!

Relapse doesn’t bear thinking about much further, we’re happy to be where we are right now.  The key word in the last paragraph for us is living – living life to the full because you don’t know what’s around the corner.  Cliche I know but it’s never meant more.

I asked Dr Keenan what the phase of treatment means for us a family now, and he basically told us go live our lives.  There are certain precautions we need to take, but that he, and the rest of the doctors, will do their utmost to allow our little boy lead as “normal” a life as possible.  I’m not usually a fan of “normal” but it’s sounding pretty good right now.

Barry, George’s port will still need a flush every month, we’ll still have theatre every few months, doctors appointments and blood tests fortnightly and will still be heading to Alder Hey with temperatures if George falls ill but this is what life is for us.

Where are we?
Where are we?

Maintenance Day 1 – LegoLand Windsor

So to kick the official first day of maintenance off on Friday, we took advantage of Oliver and Harriet being off school for Warrington Walking Day and visited LegoLand Windsor!  you all know what a fan of Lego our Georgie is, so he was in his element.

We arrived at Legoland and as directed spoke to Customer Care who gave us 5 QueBot passes to allow us to fast track through every ride.  It was fantastic… not only so that we could make the most of a good variety of rides for our all three of the kids but what a lovely touch by them? We knew this meant no standing around in queues with strangers where there’s the risk of George catching something contagious.

The kids were adamant they were going in the splash park regardless of it being pretty chilly when wet in the wind!  It’s for times like these we’re glad we have Barry the port and not a wiggly tube on the outside.

George and Daddy went off for a little Lego shopping later which gave us a chance to hit the faster (and wetter!) rides.  Oliver and Harriet loved it!

Day 2 – Family stay

Fire engine!
Fire engine!

We also had the pleasure of staying with family on the way there and back.  Thank you to Aaron and Dee for putting us up and putting up with us 🙂 we were outnumbered by little legs and survived!

We even got to visit cousin Teddy’s little school fete which happened to have the local fire service present and a FIRE ENGINE!?  could things get any better for Day 2 of Maintenance!  George predictably went straight back into his shell but what a lovely guy the fire fighter was, he persevered showing George the jaws of life, buttons to turn the flashing lights on etc.  and low and behold since we’ve been home he’s been chatting all about it.

Hold on tight

Oliver and Harriet and their little cousin Teddy got stuck in at the fete too, meeting the local police community support officers, playing games and eating lollipops.  We finished off our stay with a beautiful lunch on Saturday afternoon at a local village pub.  The kids ran wild in the sun, ate well, played on the swings, threw themselves down hills, chased each other, laughed and well….. lived.

The crew
The crew

We’re looking forward to the rest of summer 🙂

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

 

THE garden!

The old garden
The old garden

In March we started fundraising for our garden project to help make life a little easier for us and the children whilst George is undergoing treatment for leukaemia.  I blogged about it back then, about how our old garden was a bit unkempt and swampy, some of the fences were on their way out and the space wasn’t really being made the most of.

The response was amazing, our target was blown out of the water

Looking down onto the old garden
Looking down onto the old garden

enabling us to buy the very best materials and add finishing touches we’d never imagined! All this was possible because of the love and generosity of our/George’s followers and supporters, friends and family.  Whether you took part in an event, a challenge, shared our story, donated time, people power or money, the garden has had a complete overhaul and we love every bit of it.

 

I’ve included as many pictures as I’ve built up over the weeks and will outline what your money and efforts have contributed towards.

Decking and grass all on one level
Decking and grass all on one level

The garden has been raised to the same level as the step from our house so we no longer have an issue with flooding.  Given the recent huge downpours it’s been great to not have to avoid going outside.  George also doesn’t struggle with access either now 🙂

Decking – love it, looks great, easy to clean, no difficult steps for George to negotiate when his medication gives him sore joints.

Some fence panels replaced to match others in places where they were falling through or rotting.

View of the park through the new gate
View of the park through the new gate

Newly installed stable-door-gate allowing easy access to the park behind us.  We now have the ability to watch the older children and make sure they are safe whilst George is in the garden.  It also keeps the local doggies out when the kids remember to close it!! I found a chocolate lab in my kitchen and it’s shitzu mate running circles around the garden last week.

We now have garden furniture! it’s been nice to sit outside in the milder weather whilst the kids have played.  There’s loads of room for the whole gang, comfortable and modular, so we can change the layout as necessary.

Al fresco dining in Woolston!
Al fresco dining in Woolston!

We also have a decent dining set, with cushions that is adjustable to seat 10 people if need be.  Al fresco dining all the way!

Our artificial grass is lush!  No mud, no dirt, no weeds, no mowing! The kids roll around on it and picnic on it… best investment.

Our pots, plants and flowers have come on wonderfully.  The kids enjoyed getting involved planting (as did my friend Kath who seems to be claiming all the glory for their beauty and success) and I’ve found it really therapeutic looking after them… call me Charlie Dimmock.  In fact. Don’t. Damien’s surprised they are still alive of course!

A scrap on the grass
A scrap on the grass

We’ve had lighting installed allowing us to enjoy the garden right into the night if we’re ever hosting or the kids are having a late one.  It looks pretty impressive in the dark, my Nanna would have said “it looks like bloody Blackpool illuminations out here!?”  All LED though so there won’t be a power cut across Woolston every time we switch them on.

Lighting up the tree
Lighting up the tree

I chose a funky grey and yellow awning and love it!  Not only does it protect George from the sun while he’s particularly sensitive during chemotherapy treatment, but it’s also waterproof so we’ve been able to sit out in the rain too.  Very handy since it rains about 80% of the time.  It’s like an extension to the house while it’s mild enough to leave the patio doors open at the moment.

 

We bought a few extras which have helped complete our new living space – a basketball hoop, chalkboard, swing ball (a nostalgic addition!), birdy feeders and we had a tap fitted outside which has mainly been used for water fights!

George under the awning
George under the awning

We’ve had a day at home today while George didn’t have much energy.  It’s likely I would have made do with the old garden and encouraged George outside but wouldn’t have lasted long.  Instead, we  had a nosey out of the gate when the big tractor came to cut the grass, George has watered the plants with the hose while I enjoyed a cup of tea on the outside sofa, then we read stories out there too.  Oliver came home from school and played basketball, then there was a mass “Power Rangers” brawl out on the grass when Daddy got home from work.  We all had tea Al Fresco – sausage,

Noisy tractor viewing
Noisy tractor viewing

mash and veg, not quite Nigella yet…

 

All these positive, wonderful times are possible now, whenever we want.  We’re excited to enjoy the rest of summer with friends who visit and just be able to chill on the tough days.

When the grass was first laid
When the grass was first laid

From the bottom of my heart thank you for helping bring a smile to our whole family’s faces, this garden has literally changed our lives for the better through the biggest challenge we’ve ever faced.

Lisa, Damien, Oliver, Harriet and George xxxxx

Swing ball with friends
Swing ball with friends

 

Stop the roller coaster, someone’s been sick!

Toy fights and George coming in for the kill with his sword
Toy fights and George coming in for the kill with his sword

It’s been another roller coaster of a week – one minute we’re rolling round laughing, toy fighting and forgetting it all for a moment, the next we’re back to worrying, juggling the kids and rushing to hospital.

The football has been on and I’ve enjoyed watching Daddy struggling to watch a complete match with the kids knocking about.  It’s been a comedy sketch of climbing all over him or digging out the noisiest toys known to man to blast out just when you’ve settled down.

Daddy the climbing frame
Daddy the climbing frame

Thursday was the first day of a different kind of chemo called Cyclophosphamide that George has for four consecutive days.  He had it for four days last week following his 5 and a half hour one.  We’ve felt really relieved this week for him to not really suffer many side effects as I’d really built myself up and was fearing watching him suffer with those ulcers again.

George with his friends at PlaydaysInstead George was so well that he even managed a few stints at Playdays this week.  As you can see by the smile on his face, he had a great time and we’re glad he’s still getting to see his friends during the final weeks of preschool before, dare I say it, big school in September!?  The couple of hours gave me some vital time to do a bit of shopping for his birthday this weekend and a I even managed to get out for lunch with my friend Paula for a much needed de-stress.

Cling filmed up
Cling filmed up

On Thursday I’d starting feeling anxious about the nurse coming to access “Barry” the port with the gripper to administer his chemotherapy.  One of the main problems we have, as I’ve said before, is ripping off the bloody adhesive tape that’s used to hold the numbing cream on for an hour.  I changed it up though, Blue Peter style, with cling film and a very still child, we managed to apply the cream and leave it there under the cling film to take effect.  Ta-dah! no painful peeling of tape an hour later and a much calmer Georgie.  He was sat there “King George” literally being fed grapes watching his favourite programs.

Straight after the gripper going in
Straight after the gripper going in

Our good friend Nic came to my rescue to help distract George and make him laugh while the nurse prepared everything.  Even when the needle missed first time and he had to have it done again he did great, mainly because Nic was there clowning around and getting him back on track when he’d started to get upset.

Later in the day I did have to deal with an exorcist scene where George full on puked 360 degrees.  I still can’t say I enjoyed cleaning the cottage cheese veg combo up even if I was satisfied it was at least on the laminate floor.  He just got himself a wipe, cleaned his face and carried on playing, leaving me with tears streaming from wretching, having to clean it in 2 minute intervals so I could recover.

We also had a visit from Lynda of The Joshua Tree this week who regularly pops by to catch up with us and check I’m not rocking in the corner.  It was good to talk about how we’re all doing emotionally, how George is doing and just having someone who understands exactly what you’re going through listen.  Linda had very kindly brought some well-received gifts for all three children, of course it was Lego for George!

The Joshua Tree has been a great source of support for us so it’s been lovely to hear a few friends have chosen them as their charity to raise money for recently – I know Anthea is definitely one of them!

Linda from The Joshua Tree visiting
Linda from The Joshua Tree visiting
Anyone for a song?
Anyone for a song?

 

Strange how things happen, we’d been trying to persuade George to get cycling for ages and had pretty much given up for now, accepting his little are probably just too sore now.  But I think with a combination of practising on a trike at nursery and pure defiance, here’s a picture of him bike riding to pick Harriet’s friend up the other day…. defiance because i’d said “you’re not going to be able to do it George” (Mother of the year!), so of course he had to prove me wrong.  Yes that’s a man sized helmet for his huge Rooza-cranium.

Cycling George
Cycling George

I had the pleasure of meeting the teacher that George is going to have when he starts in Reception this September.  I briefly popped in to the school office and ended up chatting to her about what to expect… the idea was to reassure her that she’s not going to be responsible for doing anything out of her remit, but just what to look out for.  I told her about his diagnosis and how everything came about, how hard it has been and the kindness of others even right up to this day and and she was in bits bless her.  I’m so glad we had that conversation though, it’s really filled me with confidence that we’re doing the right thing for him… she is such a lovely, caring woman, I don’t think I’d want anyone else!

Andrea and Anthea visiting
Andrea and Anthea visiting

My friends Andrea and Anthea visited last week too, forgot to say!  Here they are listing every item from the Argos that George wants for his birthday… my soul is already destroyed from months of this!  Thank God it’s tomorrow and lets hope he’s been listening when I’ve said “you know you’re not getting everything right?”.

This morning George’s temp had jumped up to 38.4 so I off I went just after 7am to A&E at Alder Hey.  His temperature went up to 39.6 and his blood pressure and heart rate were elevated.  After a load of messing about we managed to get up onto Daycare after 9am and George was kept in for observations and blood tests.  If his neutrophil count is 0.5 or below he’s classes as ‘severely neutropenic’ and so would have to be admitted for 48 hours which obviously with a certain birthday looming we could really do without.  George’s count is 0.7 so is borderline due to the chemotherapy he’s on… throughout the day his temp hasn’t dropped to within a normal range but after thorough assessment and plenty of pleading from George, Kev, his ANP, agreed for us to go home on Calpol until tomorrow at 7am.

Having a little snuggle with his brother
Having a little snuggle with his brother

I wish I could say he’s been back to his usual self but he’s not unfortunately.  He’s complaining of pains in his legs, his eyes hurt, he looks like a beetroot and has a speckled rash.  These are side effects of the chemo too so we’re just staying put at home for now.  I did make a bit of a frantic call to Oncology a little earlier as his temperature is now hitting 40 and we were wondering at what point it’s too high to stay here.  We’ve been told to just follow our instincts pretty much so we’re keeping an eye on his breathing and checking his hands and feet aren’t feeling cold – it’s going to be a long night!

You can bet your money we will be in Alder Hey tomorrow, he’s got through the night to get below 38 degrees!  It’ll be a good story to tell though and more reason to drag out his celebrations.

A present from all George's friends on the Oncology ward
A birthday present from all George’s friends on the Oncology ward

Just a few more thanks for more lovely gestures from our friends – thank you for the box of Lego to the lady who is a friend of Laura Linley, I didn’t catch your name but George was so excited to build a big aeroplane!  and thank you Rachel Groarke, your girls are so thoughtful to think of Georgie even when you’re on your own holiday! he loves his message from Bradley and Rory from Hafan Y Mor.

Tonight, I’ve been holding off writing George’s birthday card because I feel overwhelmed with emotion when trying to find the right words to say.  I want him to know how proud we are of him for keeping strong, how much we love him and how much better his birthday will be each year from now onward.  He’s had dealt with more crap than most adults have had in their entire life, yet he still bounces back smiling, resilient and gives us so much back.  Seriously, I’m welling up just typing it.

Then I realise he won’t give a shiney shite when he realises he hasn’t received every item from page 1475 of Argos onwards…

So for now, good night, hoping for a decent night’s sleep and a boy feeling much better for some 4th birthday celebrations.

Lis xx

 

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

A week’s stay and an injured minion

Poorly Georgie cuddles
Poorly Georgie cuddles

Damien didn’t get his one night out in while after all last Friday night 🙁 unfortunately, George developed a temperature so Daddy had to rush back to look after Oliver and Harriet while I took him off to Alder Hey.  Luckily, I’d just tucked into an absolute feast as our friends had come round for a few hours and Andrea had ordered a fat take away.  So fuelled up for the night, off Georgie and I went for another sleep over.

All the days are merging into one with a lot of to-ing and fro-ing and juggling of the kids, all I can tell you is that it’s been harder than ever.  No doubt about it, it’s been one of the biggest challenges I’ve ever faced, I don’t know about Damien (he’s in a relationship with me, I’m sure that’s not far off!).

It’s the staying strong while George is suffering – an afternoon here and a day there is all we’ve had to handle in the past of him being really unhappy so you sort of appreciate when he’s better and try to forget.  This time it’s been a gradual decline at home where I’d started fretting, then he’s spiked a temp and we’ve come in for IV antibiotics and pain relief for mucositis…George had ulcers and blisters running from his mouth through his digestive system to his bottom.  This is a side effect that 40% of people get who are receiving the same kind of chemo as George.

It was meant to be a relief for all of us coming in, pain relief for George and reassurance for us that he’s safe and things are being monitored.  Unfortunately things got worse for about 3 days…

At about 1am the night before last, after not sleeping for days and having hours of George crying in pain, begging for food that he couldn’t get in his mouth and him shouting at me “why are you not my friend any more?” and “I just want to make you happy!!”  I thought I was cracking up… I cried, I asked the nurse do they ever get parents just walking out saying they couldn’t do it any more?  Obviously, I was going nowhere, I just felt consumed by helplessness and selfishly wanted it all to go away.  I continued to try to comfort him and tell him Mummy will always be his friend and that I love him very much.

It was at that point that the staff changed his pain relief from Morphine to a Fentanyl.. I’m not sure what the difference is, it was just another option and we just wanted something to work for him.  So he has a little button we press when we feel he needs a little more… at one point it was whenever he coughed, yawned, sneezed or tried to drink/eat.  It turns out some of his irrational crazy shouting and crying was actually a side effect of the morphine as the constant crying settled slightly once he changed drugs.

On Sunday night one of my good friends offered to keep me company, though not being one who gives a sh*t about anything… she turned up in a MASSIVE Minion costume.  I’d like to say it went down great, and it did with all the other kids, but not really with our George.  Stepping into our room and doing a little dance was a step too far and we had to banish the Minion back to the corridor.

Andrea Davis you are an absolute legend!  The comical part of the story that will be passed down generations to come is that once the Minion when to get changed back into their every day clothes, she twisted funny on her leg and said she felt a snap :-/ Next thing is, sweating she’s hopping out of a disabled toilet, with a load of little kids stood outside waiting for the ‘Minion’ saying “I’ve just seen a Minion in there!?” quite obviously in agony dragging herself back to our room where I was trying to comfort a petrified George!

Andrea being wheeled off
Andrea being wheeled off

Poor Andrea, she meant well and made a lot of poorly little children very happy posing for photos, but I’ll never forget that day.  The nurses were great, gave her ice, pain relief and even a wheel chair!  Andrea’s dad and brother had to come from Manchester to rescue her <inserts crying laughing face>

Yesterday Daddy was on duty and had to deal with the gripper attached to Barry falling out (if you don’t know who Barry is, you need to keep up).  This meant freezing cold spray and pinning George down to insert a new one…. which missed…. so they had to do it again 🙁 poor Georgie and poor Daddy.

Bike ride to the beer garden
Bike ride to the beer garden

Meanwhile I managed another bike ride with Oliver and Harriet to a local beer garden for lunch with our friends Kath and Lola.  It was nice to just be normal for a bit, watch the kids make up dances and play football etc, even if I was functioning on about 4 hours sleep.  Last night I settled in early with a book and had a blood good night’s sleep.

George was up from 3am for Daddy but has made up for it today with a little nap.  Dare I say he has a twinkle back in his eye too… he’s say here now trying to eat one bean at a time (at 10.30pm!).  He’s actually been upright and wandering around a little so is definitely on the mend.

George and Theo
George and Theo

We also met little Theo from Warrington today who I may have mentioned on my FB Page or possibly personal page last week.  His family and friends are desperately raising the money in order for him to have Proton Beam therapy in the USA.  It’s an upsetting story where Theo was given 8 weeks to live before a surgeon offered to try removing it here at Alder Hey.  The surgery was successful but he now needs treatment like George but due to the nature of the cancer, it isn’t as straight forward for him – his safest option of treatment isn’t even available here in the UK.  You can read his story and/or donate if you want to here.

We spoke with the consultant this morning who has told us that George’s longer dose of chemo that was supposed to happen on Thursday has now been delayed until he is well enough to receive it.  Hopefully that will just be next week as we don’t want this phase dragging on.  George is still neutropenic (you should all be experts in this by now… low neutrophil count that fight the bad stuff) so it means he needs to stay temperature free and also not rely on the pain relief to drink before we go home.  Doctor is hoping Thursday we’ll be released back into the wild/

George and his Lego shuttle
George and his Lego shuttle

I’m home with Oliver and Harriet tomorrow so better get my thinking cap on for trying to have a nice day with them while we can.  Back here, thank God for Lego, my mad mate Andrea who’s been back for more tonight with Kurt to keep us company, the play workers as usual, the super supportive nurses and the very patient chef!

Lis x

George having a wander
George having a wander

 

Happy Harriet, Great Manchester Run and Georgie feeling blue

Well chuffed with her animal rubbers
Well chuffed with her animal rubbers

Myself and Harriet got out for the day for some much needed girly-time on Saturday.  We both had a lovely time and Harriet chose few little treats and spent some of her own pennies on stickers and paper.

Jenerics and their Georgie banner
Jenerics and their Georgie banner

We went into Warrington Town Centre to the “Around the World in 80 Traders” event to support Jenirics and have a cheeky Chinese lunch – delish!  We saw a familiar little smiling face on the stand on a banner – our Georgie.  It was a shame the rain poured but it wouldn’t feel like home without the torrential downpours would it?  Thank you so much to the Jenirics team for your support, you are an amazing family.

It was funny at the face painting lady, Harriet deciding what she’d like to be….a princess? a butterfly? a bunny rabbit? flowers with sparkles?  No.  A penguin.  I’m not sure the lady gets many requests for penguins.  Typical Harriet.

Penguin on a bucking bronco
Penguin on a bucking bronco

So painted as a penguin she rode the bucking bronco like you do.  We enjoyed watching some outdoor theatre and had a look round town for a new dress….realising our freshly painted penguin probably shouldn’t be trying pretty dresses on, we started to head home.

The penguin enjoying the rocky road
The penguin enjoying the rocky road

I remembered that a friend of ours has just opened their new little art cafe near home so just had to stop off for a milkshake and a decent coffee.  R’Teapot is a gorgeous little hideaway on Bruche Heath Gardens serving the best rocky road I have ever tasted!! i’m talking turkish delight and everything.  It’s cosy and welcoming and we’re looking forward to spending more time there over the coming weeks with friends.  Congratulations Nat and family for creating such a gem and following your dreams x

It was nice to get out away from home for some time my little girl, we both needed it.

Later on, Harriet and I “popped round” to one of our neighbours for a catch up and for Harriet to run amok with the kids.  I did my usual when I start telling a story and leave the house hours later having not even reached the conclusion!  Thank you for hosting Andrea and for the vino, the laughter was great medicine 🙂

Our runners Shannon and Nikki
Our runners Shannon and Nikki

On Sunday I went to watch my baby sister Shannon, and my lovely friend Nikki, take part in the Great Manchester Run.   They were both raising funds for our family and for charities that have helped us since George’s leukaemia diagnosis in January.  They both ran through the torrentials to an emotional finish where we were waiting for a big hug and then went for an obligatory cocktail in a nearby bar.  They’ve inspired me to do the run next year… I better get training!

Gollum
Gollum

I felt like i’ve hardly been at home this weekend, hats off to Daddy for sorting all three kids yesterday while I had a day off.  With being out and about and everything going on, I was shocked last night by the amount of hair George has now lost.  He’s gone from “Hitler” to “undercut” to “Gollum” to “toupee in a side wind” in the space of 48 hours.

The hair loss doesn’t mean he is getting more sick or anything, in fact he’s got less of the awful disease now than when he had a full head of hair at diagnosis… I think it just constantly reminds me what he’s going through when I look at him, so it has bothered me more than I expected.  The only thing that seems to be upsetting him about it is the fact that its in his mouth and eyes all the time.  He’s feeling too rough to care what he looks like.

Toupe in a side wind?
Toupe in a side wind? trying some spagetti

Today has been another emotional roller coaster – and it’s probably more me than Georgie.  He hasn’t been constantly crying like Friday, but his mouth ulcers are worse and the steroids are in full effect so is very hungry all the time.  He’s just not himself, he’s carried a mini sausage roll round with him all day that he was desperate to eat but just couldn’t chew 🙁 he’s been very quiet, lethargic and telling me his mouth is hurting.  He’s been on morphine all day and I had to call the community nurse at lunch time to come out because I was worrying about his breathing.  It seemed shallow and he’s got quiet a nasty cough, then I literally thought I had to call an ambulance during one of his coughing fits because he was going blue and seemed like he couldn’t breathe.

He cleared a big mucousy lump and got his breath back and the nurse came not long after.  Luckily my friend Nic was here (delivering an order of sausages for the little man) and Laura had popped round too to see if could manage some noodles.  The nurse did a thorough check, listened in, checked his pulse etc and felt his breathing was fine.  Now I’m questioning my sanity and whether i’m overreacting!

The nurses have said they are going to start making regular visits to check on us and answer any of my questions that I’m currently having to save up until the next hospital visit.  I had felt quite isolated being sent home with George initially, I mean on the medical front.  We can’t take him into a GPs surgery with a load of sick people and Alder Hey, amazing as it is, is a long way away and a very busy place when you have a concern or question.  Once George had started going back to preschool though and he wasn’t suffering too much, I felt ok.  It’s now that we’re in the midst of the intense phase, we need the nurses here, they’re such lovely people too, I instantly relax when they’re around.

The lovely Clare dropped a spag bol off earlier which helped immensely, I haven’t had time to do a food shop and haven’t left George’s side all day to cook anything.  So after a long day at work, Damo came home to a decent meal! I could’t pass it off as my own unfortunately as my trademark ‘burnt’ wasn’t one of the ingredients.  Thanks again Clare x

Smiling Georgie
Smiling Georgie

We had a couple of nice moments when George managed to play with Lego today, he was also very happy to have a snuggle with Daddy when he got home.  I managed to capture some of his smiles – he looks like his normal self with a cheeky grin 🙂

Hopefully we’ll get out to water some of our plants in the garden tomorrow, George loves doing that.  The guys have been here today installing a garden tap and putting the new fence posts and panels in.  It looks ace! Thursday the grass goes down and maybe at weekend we might get the canopy up.  We’re really looking forward to getting out there to enjoy it.

Another few days done, we’re not in hospital this week (fingers crossed!) and are just taking each day as it comes.  Hoping for a some more comfortable days for George x

Unscheduled “sleep overs” at Alder Hey

Do you know one of those morning when you think, have I got time to wash and dry my hair? nah! it’ll be alright until later.  Well that’s the day you can guarantee we’ll be heading to hospital.

George seemed a little sleepier than usual on Wednesday and by the time it got to school-pick-up o’clock he hit 38 degrees which means emergency dash to hospital.  A quick phone call to our friend Nic, and I knew the kids were sorted for someone to collect them while I figured out what was going to happen next.

This time heading down the M62, I was having to make calls (hands free!) to ensure everyone else was sorted.  The builders are mid-job on the garden and needed a bit of directing, I needed to cancel Oliver’s tutor (he’s preparing for an entrance exam…another story) and of course I was trying to get hold of Damo!

George in Oncology Day Care
George in Oncology Day Care

We arrived at Oncology Day Care and George was checked over by Debbie, weighed, blood pressure checked and pulse etc 🙂 he had a temperature and needed Barry the port accessing so that they could take blood for culturing and give him IV antibiotics if need be.  In my haste leaving the house I had completely forgotten to prepare “Barry” with numbing cream, which takes an hour to take effect 🙁

I started stressing about it knowing it what it meant for George having to have the port accessed immediately.  Rach, our Clic Sargeant social worker, came over just the right moment.  She reminded me how well I’d done getting to hospital, remembering everything else,  that we are in the right place now and not to second guess how George was going to react.

Inserting the line to the port didn’t go down too well with George and he screamed and cried while the nurse got on with it.  Debbie stayed with us to help hold him down thank goodness… she’s a bit of a comfort for me too as she will just say it as it is and keeps focused while I’m flapping and trying to reassure George.

Messing about with the bed control
Messing about with the bed control

Luckily George’s mood soon lifted when the bravery box came out and he chose himself a little steam roller toy.  We had to wait then to find out whether he was neutropenic (when you have a low neutrophil count, which is a kind of white blood cell that fights infection).  We know there was a chance he’d be neutropenic as he’s on his intense chemotherapy now which really knocks his counts down.  Normal counts are between 1.5 and 8.0 and George was 0.3 so were admitted for 48 hours.  Due to George having a snotty nose and bad cough too he’s had to be put into isolation too.

Once he had collected his things from home, Daddy arrived to take over for the night shift.  I headed back to collect Oliver and Harriet from their Daddy and take them home.  After a cuddle and once they were tucked up in bed, I grabbed myself some tea which consisted of a bag of salt and vinegar Hula Hoops and a glass of rose.

Our good friend Paula took Oliver and Harriet to school the next morning and heading down the motorway again I started to feel a bit emotional again.  That feeling came back that I had when he was first diagnosed.  When we first found out it was Leukaemia, we were back and to taking over from each other Damien and I and although I know this time it’s nothing sinister, it’s hard to shake off that feeling when he’s staying in.  Or worse, worrying he’s relapsing.

Si popped in to say heloo
Si popped in to say hello

Being in isolation wasn’t as lonely an experience as I first expected once I was back to taking over, yesterday we had a surprise visit from our friend Si 🙂 he happened to be making a delivery to the Oncology department at Alder Hey so came in to see us… he even brought Mummy a cup of tea which was much appreciated.

We’ve had Jo the play-worker come in to bring Georgie some paints and pictures.  We’ve had Neil and Alan the health care assistants bob in for a chat and to see how George is, two of the pharmacist girls saw us and came in saying “George Rooza? what are you doing in here!!?”, the chef came for a chat and knew what George wanted to eat before he even said it.  Pip, another Play Worker who George loves, stopped by to see George and ask if he wanted anything along with a volunteer.  So it was far from quiet with George’s nurse Laura checking on him too.

We were lucky that George’s temperature stayed down.  He was on 4 hourly observations and 6 hourly IV antibiotics plus an hour’s chemotherapy and his steroids started again – the hunger monster already seems to be making an appearance but at the same time his mouth is starting to feel sore from the chemo!

There was no Hula Hoops and wine last night for me as I dashed back home to pick the kids up and got sorted for Harriet’s birthday party – yes, you read correctly.  Thank you to Clare for shopping for half the stuff I needed whilst we were in hospital!

 

Harriet's party
Harriet’s party

Last night was hard.  Harriet’s birthday party was a success and luckily her Daddy took her back to ours while I drove back to swap over with Damo for the night shift and let Oliver give George a cuddle.

George wasn’t in a great place and cried a lot last night.  I had to wake him up to give him his steroids which didnt go well, not only did he spit half of it back at me he wailed that he wanted to go home which broke my heart.  He was unsettled all night and his 6 hourly IV antibiotics weren’t falling in sync with his 4 hourly observations at all.  This meant it was every couple of hours the nurses were back in checking his temperature and blood pressure or rigging “Barry” up to the beeping machine.  Every time he was disturbed he was upset again, asking for Daddy and home and I was up trying to comfort him.

Jo and Georgie
Jo and Georgie

So this morning we were both feeling very tired and grumpy with each other, George had also just been been pumped with chemotherapy so has more of an excuse for a bad mood than me.  It’s just hard coping with the upsets when you’re knackered yourself and now it seems the hair is going and it’s everywhere!  in his mouth, his eyes, food, the lot.  It doesn’t even matter in the scheme of things.

The doctors came in and told us the George has Rhinovirus and Enterovirus which are variants of a common cold, so satisfied they knew what was causing his temperature, allowed us to go home after his next dose of steroids and once some more blood was taken.  George also needed his gripper removed from Barry.

It felt like a lifetime waiting for the discharge papers and for the nurse to return with George constantly crying… luckily Rach, the Clic Sargeant social worker bobbed in again to see if we were ok.  She ran and picked George up a little gift and a book to help cheer him up.

After an embarrassing “where’s the car gone? oh there it is 5 floors below!” moment with Jo, the playworker who’d helped me out, off home we went, feeling relieved and ready for a lie down on our own sofa.  About half way home it dawned on me I had no door key to our house and Damien was at work in Manchester 🙁 🙁 our neighbour who has he spare said she was out but back in half an hour. So I stopped off for some lunch then pulled up on our drive feeling sorry for myself while George slept.

Once in George had predictably slept enough for now and was awake but groggy so any chance of a Nanna nap was out of the question.  He was relentless and nothing seemed to satisfy him and this has pretty much gone on for the rest of the day.  I tried to shut my eyes during an episode of Mr Bean when it dawned on me that I hadn’t come home with any steroids from the hospital and he was meant to take it twice a day for a week!

After our visit from our friend Si yesterday, he’d actually text again to say he was around, unaware that we’d now left.  Luckily I was able to organise with the hospital for him to collect George’s drugs.  What a massive weight lifted and help as I think another trip to Alder Hey would have tipped me over the edge.

The hair had a good innings
The hair had a good innings

Talking of being tipped over the edge, I chose my moment to have a full on cry in the middle of the school playground today.  I’d kept it together all day whilst on my own but I’d pushed myself to pick Oliver and Harriet up, after worrying I haven’t been around for them enough.  As soon as my friends asked if I was ok or offered a hug that was it, I’d gone.

Kath came back to ours whilst I was a bit broken, and I walked round like a zombie trying to make George happy without success whilst the other children just got on with playing.  He wanted to go to the park with the other kids, so we took him, but he cried for his scooter.  So Kath went back for the scooter but then wanted a football instead… we got the ball, he wanted to go on the slide, we let him on the slide, he cried to go home.  It was relentless and exhausting.

A little later Karen arrived and sorted some tea out for the kids while I comforted George.  He was now crying that his mouth hurt and his bottom hurt.  I dosed him up on morphine as he appears to have some mouth ulcers which are a side effect of his treatment…. so is his “stinging bum” as he calls it as the chemo strips away any fast reproducing cells in those places 🙁  So he’s crying about things I can’t do anything about and I’ve got Harriet opening birthday presents and i’ve not even had chance to look at them with her. What do you do?

Damien is since home from work and has been taking over when George allows him, the morphine has kicked in and I’ve had a moment of solitude driving to pick up a take away.  Small things.

I feel another long night ahead but at least there are more hands on deck and we’re in the comfort of home.  Although the hospital offers our baby the protection he needs in these weaker moments, when you’re in, there’s always stark reminder of children suffering so much more…. and parents too, you can see it and you can hear it.  We were only in for 2 nights and I’m a mess, we’ve got friends who’ve been in for weeks and some for months, it feels wrong to complain!

Just want to shout out and thank the stranger in the lift yesterday who hugged me after a 30 second conversation about our children who were staying in Alder Hey.  Also to Leanne, who is another Mummy on oncology whose daughter Leah was diagnosed a few weeks before George, our chats over the past few days have meant a lot.

Also thank you to our friends for popping in to see us or offering to at least, those who’ve helped and text and kept us afloat by just being there for Oliver and Harriet.  We couldn’t get through this without you x

We’ve got more lovely friends raising money for George and for charities that have supported us this weekend.  Good luck Haynesy, one of Damo’s best mates in Norwich who is doing a Biathlon – you can read more about his fundraising here.  Also to my little sister Shannon and my friends Nikki and Andrea who will be all taking part in the Manchester 10k on Sunday – I hope to be able to get there to cheer you on!

Here in Warrington, there’s an ‘Around the World in 80 Traders‘ event going on tomorrow where Jenerics will have stand supporting George’s fight against leukaemia… he is a very lucky boy to have so many people who love him 🙂