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 ūüôĀ 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 ūüôĀ 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

 

Latest hospital visit and upcoming treatment

Georgie on his new trunki (thank you Ria!)
Georgie on his new trunki (thank you Ria!)

On Friday¬†we had a really positive trip to¬†Alder Hey as far as hospital trips have gone so far for George. ¬†First off, the consultant felt that George’s blood test from the Wednesday was great, all his counts were up! so they decided they would hold off doing an unscheduled¬†bone marrow aspiration and just stick to the lumbar puncture for spinal chemotherapy.

Going under general anaesthetic had always been one of the main stresses¬†for George (and us!) as he would fight the gas mask thingy and cry until the anaesthetic took effect…then he’d wake up really distressed and have to stay lay flat (more like be pinned down!) as sitting up within an hour of having it can cause headaches from the chemotherapy.

So, first off, his new port was accessed by the lovely nurses who got it in straight away, he did cry a little but got over it very quickly and carried on playing on the ward. ¬†He was also one of the first children to go to theatre so we didn’t have to wait around for ages whilst nil-by-mouth.

We waited in the inpatients theatre waiting room and George cycled round on a trike whilst waiting to be collected by his anaesthetist. ¬†He chose Daddy to go in with him and Daddy said he fell asleep really peacefully as they could just insert anaesthetic with little fuss through “Barry” (the gripper on the port in his chest).

George just chilling after theatre
George just chilling after theatre

When George came to, he was really chilled and even laughing with the nurses in recovery whilst lying still with no problem.  We went back to 3B Daycare and the only time he became upset was when his feast arrived and he had chicken nuggets instead of chicken strips!?  Bloody King George?!

George savouring his first bite
George savouring his first bite

He soon got over it… and that first mouthful following nil by mouth since the night before looked like it really hit the spot ūüôā

Whilst in Daycare I did pick up on a few of the other parents and nurses who looked upset. ¬†It’s awful that this is becoming a familiar situation and I could only assume the worst. ¬†Once¬†home I saw online through some of the new friends¬†we’ve met at Alder Hey that another beautiful young man has gained his wings. ¬†Another family left devastated, another family that we only saw recently with their child smiling in bed on the same ward as George. ¬†I feel sick with sadness for them and for Charlie, a courageous young man who has been taken too soon.

Again,¬†its hit home, the¬†situation can change overnight, we’re appreciating¬†every moment with our family wherever we are.

We’re about to embark on the more intense part of George’s treatment, the doctor outlined what’s going on from the beginning of May. ¬†It’s going to be hours of intravenous chemotherapy and a whole host of other drugs and fluids, it’s the more¬†aggressive phase that we’ve been building up to. ¬†We’re anticipating all the yucky side effects that he’s been experiencing so far are going to be more intense. ¬†We know it’s probably going to be the most testing time but feel lucky to have access to this treatment, to these amazing doctors, a state of the art hospital and it’s all¬†for FREE!!! ¬†just imagine having to deal with all this with a bill at the end!? to think now that one of my main worries in the beginning was about him losing his hair seems ridiculous, but hey, you have some mad thoughts in those first few weeks.

Harriet and George bathtime
Harriet and George bathtime

In other news we found out George has got in at his big brother and sister’s school and starts in September – I completely forgot we were even finding out on Friday because of going to theatre. ¬†That’s going to be whole other ball game with the Macmillan nurses having to visit school and everything… and something that I can’t even comprehend until we’re through the next few months.

We’re very excited about the upcoming St George’s Day toddle and everything appears to be coming together thanks to two lovely ladies who attended Daisy Birthing¬†classes – Helen Dolce-Lund and Sarah Poole, you are absolute stars. ¬†We’re hoping for good weather but being in the North West, it may be that we’ll be rocking our wellies rather than flip flops – we still anticipate a great St George’s¬†day for the bravest George we know!

Next project for Mummy will be getting some birthday plans sorted for our little Harriet, who was also almost forgotten about (bad mummy!) until she asked for a party!? cue me thinking oh my god, when is it?? it’s only 2 weeks away!! still plenty of time….. <frantically Googling girls parties Warrington>

Have a lovely week folks, hope to see a lot of you on Saturday, I can feel myself choking up already xxx

Just another day in the life…

Ceiling leak
Drip, drip, drip

Today we awoke to a flood in the kitchen, water dripping from the lights and an ant infestation…. but with life being the way it is at the moment, I’m not really arsed! ¬†not that these things aren’t a pain or an inconvenience but what used to send me into a frenzy of dramatic¬†Facebook statuses, now seems irrelevant¬†and petty.

Instead I put a pan under the dripping water, turned the boiler off, text our builder, chucked down some ant poison then headed off to drop the kids at school and get George to his appointment at Alder Hey.

George and his Beads of Courage
George and his Beads of Courage

I feel liberated! Since George’s diagnosis, it’s like I’ve had a virtual smack in the face – I feel like I’ve found out how¬†to appreciate life and not let the little things get me down. ¬†To be fair, I’ve always been fairly mindful and not someone who’d post statuses moaning about minor ailments… and if this is an awakening for anyone out there, you thank me later ūüėČ ¬†I’m finding myself rolling my eyes at people’s melodramatic¬†Facebook statuses even more so – don’t lie that you’ve never done it!

A¬†few days ago George¬†was able to toddle around at Lymm Dam and eat in a quiet restaurant with our family – something we used to take for granted. ¬†Today he’s¬†slept for the majority of the day, when he’s been awake he’s cried and he’s shivered. ¬†It’s been a beautiful day outside and he’s missing it, he’s felt sad and tired. ¬†Some days I’ve¬†questioned whether we’re doing the right thing raising money for our garden but it’s on days like today it feels completely right.

George's Beads of Courage
George’s Beads of Courage so far

Yesterday I cringed through an interview with Wire FM about what our family is going through, but found that when it came to thanking everyone who has supported us I became choked up! ¬†funny how you cope talking through the terrible stuff, but I haven’t pre-programmed myself to keep it together when it comes to¬†people’s generosity. ¬†It’s like when you’re keeping it together and then someone says the dreaded “are you alright?” and receive full on¬†waterworks. ¬†I haven’t listened to myself in the interview and don’t plan to either. ¬†Though I’ve been told I sound like a proper Manc, so it’s can’t be that bad ūüėČ

George asleep
Snoozing George today

Poorly as George has been and potentially will be in the future, I know there are children we’ve met whose battle is tougher today, I’ve seen them in Alder Hey and I’ve met their mummies and daddies. ¬†I know there will be¬†parents who might¬†receive that devastating diagnosis we did 14 weeks ago, bad news about their child’s condition, or¬†will be at their bedside watching their little ones¬†in pain…

We have a little boy who’s doing well considering, a leak that’s getting fixed and a pile of dead ants to vacuum up…. things aren’t so bad.

Happy Facebook posting folks ūüėČ

Gratitude in all shapes and sizes

So the last few¬†weeks have¬†been busy in our household, I thought i’d be sat at twitching since I’ve finished work but I’ve come to appreciate what amazing friends we have and difficult as some days may feel, there are always brighter moments ahead.

Here’s my list of what I’ve felt grateful for in chronological order –

SSmiling wildly outside Lidl
Yay for my day out!

1.¬†I’ll start with the silliest one, ¬†forget the brave cancer-fighting 3 year old, it’s my first solo trip to¬†Lidl in a long time! ¬†I headed to my supermarket of choice in great anticipation the other week. ¬†I was slightly disappointed firstly, when¬†I realised I had to park in a non-parent bay and walk an extra 10ft to the store, then, to my horror, I’d forgot my trolley pound and had no change… this is a nightmare situation in a Lidl / Aldi type store. ¬†Have you ever asked the¬†militant check out staff for change??

I bought loads of veg I have no idea what to do with because it was cheap and a million kiwis for 12p, then browsed the shovel / tuppaware / clothing in transparent pvc bags aisle, for things I must need.  With my undersized trolley over-packed with interesting veg and not one meal amongst it all, I ploughed on.  With one draped over the top to avoid a kiwi avalanche and shin injuries from the extra metal rack on the lower part of the trolled, I headed for the joy of the checkout queue.

I did the usual obligatory letting a bloke behind me with a pint of milk jump the queue, then the old lady with a loaf, then a woman and a baby with small basket and hold on a minute…? eff you to the next person, i’m avoiding eye contact.

Over-filled shopping trolley
Balancing act

Then, thinking I could stealth pack because I was child free, made the mistake of opening the two bags for life to fit perfectly in the trolley. ¬†Only my shopping didnt fit perfectly did it? and the checkout guy was on a mission to prove his worth to Lidl. ¬†So I ended up running back and to to the bloody packing shelf area with the odd cauli, multi pack of crisps and clinking bottles of, errr, “water” whilst desperately avoiding eye contact with Mrs One-bag-of-Sugar behind me.

I weaved my metre high shopping load back out of the store, smashing into some seasonal bedding plants en route and denting my own car on arrival.  I was satisfied with my first lone shop and grateful that it could have been ten times worse with a 3 year old with no immune system Рroll on next week! might go mad and hit Aldi.

Simone Mollie and George
George having the tour of Mollie’s new room

2.¬†The next day having bought a load shopping that should really be eaten fresh, George and I set off for our friend’s Simone and Mollie’s for lunch. ¬†Mollie had moved to a new house so it was exciting to get the grand tour and see Mollie-Moo’s gorgeous new bedroom, complete with her very own fairy door!

Mollie and her fairy door
Mollie and her fairy door

Mollie’s Mummy, Simone, looked after us with tea, juice and biscuits and also treated us to lunch whilst I waffled and the kids embedded play doh into the new furniture.

The new house was proper posh and George is already mithering to visit again soon Рyou can see just how much here!

 

3.¬†George received¬†a parcel containing something he’d wished for the following day! ¬†You can read more about his beloved pink sleeping bag with fire engines on here. ¬†But what also arrived of Uncle Paul and Aunty Amanda was this beautiful story of the¬†Hare who lost her Hair¬†a highly recommended and emotional read for normalising hair loss and treatment for childhood cancer, or any cancer for that matter! it would be a good book for children who’s parents will be receiving cancer treatment too. ¬†I plan on officially reviewing the book in due course so keep your eyes peeled.

Harriet holding a pile of fabric
Harriet and her new fabrics

4.¬†As a treat for Harriet we’ve been to a sewing class and she’s been enjoying sewing since, so it was lovely to receive a nice treat in the post of Nanny Jane last week. Harriet received some new fabrics to practice with – the new range of bags will soon be in stock so watch this space!

Lisa Karen and Kath pulling silly faces
Weirdos

5. Mummy managed an impromptu tea out with some of the girlies at The Black Swan in Hollins Green, Warrington for food and wine.  It was just what the doctor ordered to offload a little and have a catch up.

6.¬†Daddy had a little break last week too and went to the dirty pub with his Daddy mates… the lush rolled in at a rocking 8pm sozzled and fell into bed snoring, that’s pretty much the end of that story, but at least he got out for a few hours!

George and Seth enjoying ice lollies
George and Seth in the sunshine

7.¬†Georgie then got another play date the following day to allow Daddy to suffer in silence (and also cook us a full Sunday roast!). He¬†visited another one of his bestest friends, Seth! ¬†They enjoyed ice lollies in the Spring sunshine and played beautifully all afternoon. ¬†I think they only paused for drinks and biscuits then disappeared again. ¬†It’s wonderful how he’s still managing to keep up with his little friends (of course while Mummy also gets to drink brews and chats).

8.¬†I had the pleasure of¬†witnessing my Oliver dressed as Monet explaining Impressionism in his school play this week. ¬†I was a very proud mummy waving eagerly to him as he coolly smirked and just raised one palm to me…as in “alright mum, chill”…

9.¬†We were grateful to receive a donation towards¬†George’s new bed from some of our lovely friends (you know who your are) the Mark Gorry Foundation. ¬†George is currently sleeping in his cot bed and whilst is fine for him for now, it’s not ideal when either Mummy or Daddy are sleeping in the same room. ¬†I dread to think how many nights we’ve spent in the foetal position squidged in with him so that the other can get a full night’s kip! ¬†we certainly both have the back ache to prove it! ¬†MGF heard our story and sent us some pennies to help us get a single bed with a pull-out bed underneath. ¬†This is going to make such a difference to all of us, we can’t thank them enough.

The Mark Gorry Foundation, I remember for the “Love your Balls” campaign, after a close friend of mine had the pleasure of working with Mark. ¬†She helped raise awareness for the cause following his death¬†from testicular cancer. ¬†MGF‘s¬†goal is to improve the understanding of the disease and raise awareness of the signs and symptoms of Testicular Cancer. ¬†We’re very lucky that their fundraising helps any families who are affected by any type of cancer.

Sunset over Woolston
Sunset in Woolston

10.¬†Not one to miss the bigger picture, I’ve really been appreciating the Spring in the air! <cue Damien’s eyes rolling> the sunsets have been breathtaking, and god i’ve missed the mild weather! ¬†I didnt realise just how much I must have been hibernating since George’s Leukaemia diagnosis.

I love the sound of the birds in the morning and looking out over Woolston Eyes Nature Reserve behind us when I open the curtains. ¬†The Spring flowers emerging where i’ve chucked old “dead” daffodil pots from last year¬†in the back and even the amorous wood pigeons that the cat chases… ¬†it’s¬†time we start getting outdoors more when Georgie can!

11.¬†Good old parents evening!¬†Nothing like a parents evening gloat… all positive and both doing great… more importantly¬†Oliver and Harriet’s schooling doesnt seem to have been¬†affected¬†by their sometimes turbulent home life. ¬†Thank you again¬†to our lovely friends who have helped us out so much by dropping them off and picking them up at the drop of a hat.

12. I’ve kept everyone up to date with his treatment, but this little boy’s strength is unbelievable. ¬†Even George’s¬†doctor was surprised over how well he was doing at his appointment on Friday. ¬†He was in theatre for around 2 hours and away from us for 3, he came around from anaesthetic calm and even though he was allowed sit up if he wanted, he refused saying he didnt want a head ache. ¬†This is a far cry from the initial weeks of upset. ¬†I can’t believe how resilient he is, how patient he is or how brave he is. ¬†He’s doing so much better than I ever expected.

 

So it was meant to be TEN¬†things to be grateful for, but I like to be different ūüôā¬† Harriet has got her friend visiting this week as she’s been keeping up with her little jobs with minimal meltdowns – here’s to another couple of weeks of positivity xx