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

 

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

Well deserved happy times

George under the awning
George under the awning

What a blinder of a week… to say it’s been refreshing is understatement following our week in hospital.  George was allowed home on Thursday just gone as he was able to eat a little more, drink and his temperature hadn’t crept up.  He has gradually become more energetic, his appetite is well and truly back and he’s functioning like a normal three year old (apart from walking and moving like a little old man).  It’s been so heart warming and we’ve appreciated every single minute of it.

 

The garden is just about finished… there’s just some work where the BBQ is going to be that needs finishing, there are some lights to go in and we need to attach a few more of the kid’s things to walls etc.  We’ve had a lovely few days in it since the weather has been glorious and have had the awning out too to protect George from the sun while his skin is more sensitive on chemotherapy.

Oliver and Harriet at Woolston Hub pool
Oliver and Harriet at Woolston Hub pool

I managed to take Oliver and Harriet swimming towards the back end of the week last week, we had lunch out and they’ve played out in the sunshine with friends.  Oliver even had a sleepover at his mates on Friday night, much to his delight.

 

Georgie putting out fires
Georgie putting out fires

George is really enjoying pretending to be a fireman with the garden hose – this is a novelty as we never used to have an outside tap.  He’s given the flowers a “drink of water” at least twice a day, luckily they’ve needed it!

George and Finly enjoying a Kinder Egg
George and Finly enjoying a Kinder Egg

We’ve had Finly from next door round for a play and our friends came round for a sneaky peak and a glass of wine or two with their children on Saturday night.  It was great to get out there with somewhere to sit and somewhere safe and clean for the kids to play.

 

Sunday we had more relaxing in the garden and then a BBQ at our neighbours.  George had a ball playing with his friend Casey.

kerryharriet
Kerry and Harriet

Harriet and her friend Kerry have decided they wanted to do something for George and for little girls suffering from the effects of chemotherapy by going for the chop and donating their hair to The Little Princess Trust.  Myself and Kerry’s mummy Zoe are very proud of the girls for such a selfless act at a young age.  If you’d like to support them you can do via this link.  We’ve actually had a few more recruits from the children’s school now hoping join in the big chop!  Thank you for being so thoughtful too Grace and Olivia (Wilson) – There will be another post to follow on the big day for all of the girls xx

We’ve been over to Alder Hey this morning for his bloods to be taken to see how we’re looking for his treatment continuing this week.  We had everything crossed as we didn’t want it delayed and further and just wanted him to be well enough, he seemed it on the outside anyway!

Theres our George!
Theres our George! smiling at Caseys house

So at 4pm we got the call saying everything great for treatment to continue, his neutrophils are 4.1 up from 0.4 which is a great recovery (that’s his white blood cells that fight infection) and his platelets are over 600.. they are his clotting cells and the lady on the phone said he has so much he could share some out!

This funky chicken also enjoyed playing with the hose!
This funky chicken also enjoyed playing with the hose!

We’re good to go, this Wednesday he’ll head in for 10am for his longest period on a drip for treatment so far – five and a half hours of chemotherapy and fluids.  We’re anticipating side-effects, I just hope that whatever they are, they’re not as painful as last weeks.

Following this treatment he’ll have a nurse coming to us at home for 4 consecutive days a week to administer more treatment through “Barry”.

Daddy and George this evening
Daddy and George this evening

Feeling a bit apprehensive for what lies ahead but glad this week is going ahead now, even if the side effects are potentially going to clash with his birthday next week 🙁  we’ll see though, he might surprise us.

 

 

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

 

Keeping going one day at a time

Feeling hot sorting lego
Feeling hot sorting lego

This week has been a tough old week, the toughest so far in terms of George’s mood and well being.  It’s on a different level to the initial shock of your child being diagnosed with leukaemia.  No, this is a different kind of heart break, the kind you might experience when your child is feverish and not themselves, and that 24 hour bug seems to be going on forever and all you want for them is to be themselves again.  Only imagine they’re in so much pain they can’t talk, they can’t drink and you know they want a hug, but they keep pushing you away because they’re angry, they’re sad and you can’t take it away for them.

Then imagine that it’s not for 24 hours, you don’t know when it will end and you’re completely helpless.  That’s the kind of thing we’re talking about this week.  George has a temperature and mucositis, it’s causing ulcers and sores through his gastrointestinal tract from his mouth down to his bottom.  It’s even been affecting his tear ducts so his eyes are sore too.  Imagine those one or two ulcers you might have because you’re feeling a bit run down and times it by 100.  That’s how my baby boy is feeling.  He’s three and dealing with the probably a million times better than I ever would.

looking out onto the new garden
George and Seth looking out onto the new garden

He did pick up a little for a day on Thursday this week and enjoyed having his little mate round to play, Seth, which I’m really glad he had the pleasure of doing.  He was back for a couple of hours, chatting and playing normally. He misses his friends and he misses Playdays.

We’ve tried to appreciate the small ‘normal’ moments at home but have been back and to, to Alder Hey when I followed my gut out of sheer worry about him.  What I do need to point out is that this is a side effect of George’s treatment, not something rarely seen and it’s something the hospital know how to deal with.

Always time for Pip
Always time for Pip

There are things I could Google all day long about what Mucositis can lead to, but i’m just listening to the other parents who’ve helped their children through it and of course the doctors at Alder Hey.  “Barry” the port is in full swing and has currently got three or four extensions to it for fluids, IV antibiotics, paracetamol, saline and a PCA Pump for his morphine.  There’s a little button we can press for an additional boost of morphine prior to George attempting to drink and following him coughing…

This isn’t really something i’d prepared myself for, if I’m honest I was just expecting vomiting and sleepiness but I realise now I was naive and this is the sh*t people are talking about when they say how hard it is.

Bacon cupcakes!?
Bacon cupcakes!?

We’ve had lots of reasons to smile this week around George’s feeling dog rough.  I don’t think i’ve officially had to cook once due to all the little fairies who’ve delivered hot pots, bologneses, casseroles, bought us pizzas and invited us round for fajitas!  We’ve not been short on visitors to keep me sane during the long days i’ve been at my wits end, nor offers of support while we’ve been at hospital.  We even had a delivery from next door of bacon flavoured cupcakes just for George’s savoury tooth!  He has also enjoyed his little lego gifts from friends who’ve made his day – he’s been re-building his sea-plane and caravan in hospital over the past few days 🙂

But never mind the smile on Georgie-Roo’s face, can you imagine mine when 10 bottles of wine arrived in the post this week!?  Obviously i’m ready to neck the lot but have to bear in mind emergency dashes to hospital so we’ll gradually make our way through it bit by bit.  I could do with a button on a PCA for that too but maybe that’d be frowned upon in certain circles :-/

George rigged up to all his pain relief and meds today
George rigged up to all his pain relief and meds today

The wine helps but the community nurse has been a massive saviour when i’ve felt like i’m tipping over the edge with what is normal and what is not.  Plus support from other parents on some of the online groups for children in Oncology.

Oliver and Harriet have been amazing.  It’s a word I over-use I know “amazing” but seriously… they fight most of the time and drive me bonkers, but when push comes to shove and i’m flapping about, Oliver suddenly steps up to help and Harriet will quietly retreat.  I know this isn’t necessarily a positive, but i’m so proud of them… not because they’re the best at maths or brilliant at a particular sport but they’re so emotionally aware and mature in spite of everything.

So with our bank holiday weekend plans to add the finishing touches to our dream garden out of the window… Oliver and Harriet had a nice play with some of our neighbours children when all hell broke loose last night.  Poor Damo’s one chance to let his hair down and go out to watch rugby was scuppered with George’s temp reaching 38 degrees and me having to abandon ship and rush him to hospital.  The awning can wait until we actually need it when Georgie is home… and I can shop for any additional bits online when in hospital tomorrow with George if he’s sleeping.

George and Daddy Facetiming eating noodles
George and Daddy Facetiming eating noodles

Today, running on approximately 3 hours sleep and 1 round of toast, I’ve liaised with the electrician over lights in the garden and took Oliver and Harriet for a bike ride for treats from the shop.  We managed to geg in on a barbecue at our good friends The Appletons on the way home.   We’ve Facetimed Georgie and Daddy at hospital since we’ve got back and it was great to see George managing to swallow some noodles 🙂 he shown us his lego and now the kids are snuggled up watching X-Factor.

Blowing the cobwebs away with the kids
Blowing the cobwebs away with the kids

Totally appreciating my own bed for one night, can’t wait George is well enough to come home and we’re altogether again under one roof, hopefully that will be during the kids school holidays this week x

George’s play doh egg

George is starting to come through his very sore ulcerated mouth and throat… he’s much better today compared to the last few days.  I’ll blog more about how it’s been over the weekend, just wanted everyone to see he’s ‘ok’ and dosed up on pain relief at home 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 🙂

 

Friendship, fate and the three musketeers

So I thought i’d be updating with how we got on today.  I’d been psyching myself up, friends had given me a “survival kit” for the car should #pukegate happen again (thank you for that! you know who you are x) and I’d organised for my friend Nic to come with us to hospital for moral support.  But, me being a tool and all, I completely misread George’s treatment plan and Day 9 Chemotherapy is actually tomorrow.

The little gnome
The little gnome

Over the last few glorious days Georgie and I managed to start planting up some hanging baskets and his gorgeous “Little Plot” box.  I’ll be honest, I haven’t got a clue what i’m doing, I literally watched a YouTube video to find out what to do with a hanging basket!

I made some plant purchases at one of my favourite places in Warrington, The Walton Lea Project.  It’s based in the pretty walled gardens at Walton Lea and you can find some absolute treasures there.  I love the fact that all their upcycling, crafts and flowers have all been lovingly worked on by adults with learning difficulties, mental health issues, early Alzheimers and mobility issues.  The Walton Lea Project is a charity providing supported employment.  George’s “Little Plot” was one of the gorgeous upcycling projects made from an old drawer, lovingly painted and lined.  It came with a little spade and some wild flower seeds and we even bought some little strawberry plants from them there, that George enjoyed planting in the sun.

Great helper
Great helper

I managed to nip into Homebase to buy the actual hanging basket stuff and to look for some containers for the garden (big unveil of the garden in another week or so!) and gathered I’d just ask a member of staff what I could put where.  There was a lady stood next to me while I was admiring a Jasmine plant that smelt beautiful and she commented on how lovely it was… I said i’d worry it wouldn’t survive in my hands, I don’t even know what to put in a hanging basket!  I told her our garden is going to be a complete blank canvas as we’re having it made over, she mentioned a few names of flowers and carried on with her day.

Further round, as I stressed while trying to get my shopping trolley over a hosepipe that was trailing across the walkway, the lady approached me again to tell me about a plant that would be great in containers in our garden.  I told her about George and the children, and why making the garden safe, easy to maintain and pretty meant so much to us now.  She stopped in her tracks and told me that she completely understood what we were going through, with a little break in her voice, that she had a garden for her son too.

Forget me nots
Forget me nots

Sadly, her son’s garden was full of Forget me Nots and Bleeding Hearts for she had lost her little boy to cancer.

I had a huge lump in my throat and just wanted to hug her, she was looking emotional too… It must have been fate for us both to be stood at the Jasmine plant at the same time.  I told her all about the wonderful people who’d rallied round to help us and to raise money for us as a family.  She said it had restored her faith in humanity.

I don’t know who the lady was, or her little boy’s name but I walked out with the Jasmine plant, Forget me Nots and Bleeding Hearts in my trolley, for our special garden and all the angels that I’ll tell my children about.

I must also add that George has been pretty chipper this week so far and has even been to Playdays!  the thoughtful girls there had organised for George to have his little graduation photo done just in case he isn’t well enough to attend later in the month.  I’ve not seen his photo but the photographer, Michelle Geritas was a cracker by all accounts and managed to take a few snaps of George and his best friends Casey and Seth.  How beautiful are they!?

So we’re off to a wonderful start this week, ready for tomorrow; armed with the survival it, the promise of a beautiful garden and as always the support of our amazing friends.

Lis x

 

 

A message from the Swashbuckle crew!

We have one very kind friend for making this happen (thank you so much Carly!!), but also thank you to “Gem, Cook and Line” for such a special message for our George – you are all wonderful people at Cbeebies, it made me cry!

George was shy when he first watched it and covered is eyes peeping through his fingers, I think he was starstuck bless him xx

The fundraising abseil and gorge walk – Success!!

Today was an amazing day.  Myself and my beautiful friends walked up a gorge an abseiled off a 90ft bridge.  My friends had been raising money over the week to help us fund a project to makeover our garden for our children to enjoy.

Fun bus!
Fun bus!

The day started with sunshine and bacon butties at Sarah’s house and a drive in our fancy minibus courtesy of Beth.  We drove into the Peak District to meet Malc from Truth & Trust Adventure and headed to the gorge location.

Cheese in the waterproofs
Cheese in the waterproofs

We changed into our attractive wetsuits and waterproofs and set off feeling excited! well I was, I know some of the others were a little apprehensive.

A few of us took a dip and there were definitely more than a few bruises earned as we moved up through the gorge on the slippy rocks and waded through the freezing water! it was good fun 🙂  The highlight was most definitely Claire scaling the waterfall…she was rather vocal, lets say! and Carly bailed so many times that Malc started pointing out slippy rocks to her directly.

We got to a point where it was time to head back to dry and change as there was a bit of a drive ahead to get to Millers Dale Bridge at the Monsal Trail.  That was interesting, all 8 of us at the side of the road trying to remove waterproofs, wet clothes, wetsuits and underwear to change into dry things!

We parked at the next destination and ate our lunches, Kath being Kath had a surprise bottle of fizz up her sleeve and even mini glasses – call it dutch courage.  We ate our “buffet” and followed Malc to THE bridge.

Then I witnessed some of my closest friends, scared to death of heights and completely out of their comfort zone face their fears and take that step over the railings of a 90ft bridge.  I think we were all expecting to brick-it a little… may be some more than others… but I was in bits at times just watching my amazing friends, some of whom were frightened and in tears, challenge themselves.  For me, for my family and because YOU were kind enough to sponsor them.

Claire receiving a well earned hug from me x
Claire receiving a well earned hug from me x

There were some lovely moments down underneath the bridge reeling each other in and giving a great big hug for whoever needed it.

It has been a very emotional day in more ways than one, we’re all knackered and I can’t tell you how proud I am of everyone.

The icing on the cake on the way home, once we got some signal and 4G was that our fundraising amount had hit £2250! that’s an astonishing amount in such a short space of time…. and I owe it all to all the lovely friends and family who have donated so far, and the donations raised by my girlies – Dawn, Claire, Sarah, Yvonne, Beth, Carly and Kath, thank you for everything, I love you very much x