2016 what a corker! One leukaemia diagnosis and a million amazing moments

Quick Update: I’ll keep it brief!

Jurgen Klopp popped in for a visit

George is fine… great in fact! after a few scary days in Alder Hey, he was back to his old self, his MRI was clear and we’ve had Christmas at home.  Just wanted to thank my wonderful little sister, Shannon, for coming to the rescue wrapping the last of the kids presents while we were in hospital.  Thank you for also holding my hand around Tesco at stupid o’clock the night before Christmas Eve on your one day off over the whole festive period.

Tickles off our lovely nurse Mary

Thank you to our friends who as per usual picked me up, gave support, provided food and even offered Christmas dinner!

2016 has been a corker hasn’t it?  Certainly one we won’t forget in a hurry, and not all for negative reasons.  Yes childhood cancer suddenly became a huge part of our life, but we’ve watched George fight and Oliver and Harriet have filled us with pride. The positives have continued all year, our friends and community fundraised for our very special garden, George’s bedroom got a makeover and our situation made us appreciate our amazing friends, there was the wedding that no one knew they were attending, and our very special familymoon.  We gained Sugar-the-Poo and George started school.

We’ve met hundreds of new friends this year, gained an oncology family, have our new appreciation for life and a treasure each day as a gift.

Wishing all of our friends, family and followers a wonderful 2017, may it be filled with love and appreciation of the small things 🙂

Here’s one of our small things tonight!

Lis x

Neutrophils, Optimus Prime and a Character Award

Applying numbing cream
Applying numbing cream
Just a quick one tonight to let everyone know that last Wednesday’s hospital trip was okay.  The blood counts that were concerning us have now really picked up, but to the point that they’re too high so the chemo has been increased hopefully just enough to get the counts to the ideal point.

George bowled us over with his courage and bravery from being nil by mouth, having “Barry” accessed with the gripper to going under general anaesthetic and coming round again without a tear.  I’ve got a Vlog to upload of that day which I’ll put up later in the week.

He had his numbing cream on before we left home and wasn’t allowed anything to eat while Oliver and Harriet sat eating their breakfasts.  Daddy took George to hospital while I gave Sugar and quick sprint around the park and took Oliver and Harriet to school.  I must be honest, I had another wobble on the way to hospital as there was a bloody ambulance on the M62 blue lighting all the way.  It took me back to 5th January this year when I had to follow the ambulance with my own son in it to Alder Hey the day before he was diagnosed.

I made it to the hospital just in time for George going into his consultant.  It was a relief to hear that his neutrophil count had picked up, they were just higher than the doctor would like this time so the chemo has been increased now to bring them down again.  The doctor was a little concerned at George’s weight loss as he’s lost 1.5kg in two weeks, that’s quite a lot for a little person.  It’s been put down to the fact that he’s started school and is much more active.  I have had a chat with his teacher since to double check he is actually eating his lunch which she assures me he is, he’s a great little eater.  The concern will be if he’s lost weight again, although I’m not sure what it means for him if he has… just another waiting game.

Gripper going in
Gripper going in
So following the clinic meeting with the consultant, we went through the motions that we’re all now prepared for.  Karyn, the lovely nurse who has never missed “Barry” with the gripper was on, so that was really straight forward and relaxed.  We were called to the theatre waiting room where George watched Toy Story on the TV then blew me a kiss goodbye, and off he went for his sleep and lumbar puncture for spinal chemotherapy.  He has this spinal chemo because the oral chemotherapy that we give him at home doesn’t reach the spinal cord and fluid around the brain.  Leukaemia cells can travel into the fluid that surrounds the spine and brain, so during the maintenance phase, he has to have this procedure via lumbar puncture every 12 weeks.

Laying flat for lunch
Laying flat for lunch
After his theatre trip, he was wheeled back up to the ward, staying lay flat as directed for about an hour.  He was absolutely ravenous so ate half of my butties before his own picnic arrived along with his special request of chocolate ice cream!  The kitchen really look after them.

George had been really looking forward to going to theatre because A. he got to have a sleep and B. he gets a present for being brave.  Mummy hadn’t been very organised so he got to choose which Transformer he wanted from his bed on my phone that day.  Thank you Amazon Prime, Optimus Prime arrived the next day 🙂

Optimus Prime
Optimus Prime
So all is good in the hood at the moment, we’re back at Alder Hey again on 5th October all being well, so we’d better get fattening George up in the meantime!

Georgie was straight back to school on Thursday and on Friday I had another little emotional moment, but for a lovely reason, he came out of school with a Character Award for Courage… for joining in with a dance lesson even though he wasn’t sure he’d like it!  Bless him, cracks me up.

What a character
What a character
Just another quick THANK YOU to our lovely neighbour Laura (not Ian, he can’t be arsed reading the blog..I’ll Vlog another time!), for having Sugar Poo over for doggy play dates with Teddy their sausage dog while we’re at Alder Hey.  You’re a star! x

 

 

George starting school – a child on chemotherapy

George and his fluffy head
George and his fluffy head

George is starting school tomorrow…. i’ll just let that sink in.

I’ve been cracking on with life like I did when he was diagnosed with leukaemia and burying my head in the sand a little.  Everything’s going to be ok, everything’s fine… I can tell you now, this is going to go one of two ways, i’m either going to be hard faced dropping him off or i’m going to be in bits, with no in between.  Our only saving grace is the fact that he’s just doing an afternoon tomorrow so at least I won’t be in the morning drop off crowd waving him off with Oliver and Harriet.  The rest of the week builds up to a full day then next week, boom, full time education!

This is more than “oh no my baby is leaving me!”, “he’s too young” nerves.  It’s more like “my son is on chemotherapy AND starts school tomorrow” kind of thing… you know the feeling?  No you probably don’t.

I’ve got every faith that his new teacher has got this, she is completely lovely and supportive, the same as the school has been since I had to make the phone call to say “Oliver and Harriet won’t be in today, their little brother has cancer, we’re taking them to Alder Hey”  Now THAT was a shitty day.

No, tomorrow won’t be a shitty one, tomorrow is the next step, the beginning of George’s school life.  It will be slightly different to the other children’s, in that he’s going to spend another 3 years with a suppressed immune system to prevent the “bad cells” coming back.  He has daily chemotherapy, another weekly chemotherapy, blood tests and meetings with his consultant every fortnight and goes to theatre ever 12 weeks for a lumbar puncture and spinal chemotherapy.  Let’s just say, there’ll be no 100% attendance certificate coming his way!

George will be more at risk of infection, and anything like that will mean more “sleepovers” at Alder Hey for IV antibiotics and monitoring too.  He’s going to have to try to maintain a high level of hygiene (he’s 4!?), avoid contact sport because of Barry (his port) and his joints may get sore after physical activities.  Catching anything contagious is unavoidable but we know the school have been on the ball with reminding parents to keep their children off if they’re ill, I mean, puking, the trots, chicken pox – what more could we ask.

The three amigos
The three amigos

Despite all this, we’re looking forward to him getting involved in and enjoying as much of school life as possible, particularly friendship.  Whether he’s reading War and Peace by 6 years old, can do Pythagoras theorem or can sing like a canary… it’s not really what it’s all about in life really is it?  I’m just glad he’s getting to go to bleedin’ school and has a chance to be happy like the rest of the kids from nursery (we miss you Playdays!).

Don’t get me wrong i’ll still post proud as punch photos on Facebook etc when he can draw round his hand at age 12…. that’s because i’m his mum. But whether he’s meeting “age related expectations” at the end of the school year or not is not about to change anything.  We’ve met more than enough families whose children have been taken from them for us to appreciate all of our children just being here.

George and his dody
George and his dody

Since George was a baby and throughout his cancer treatment he’s still always had a dummy (dody we call it) for bed time and when he needed soothing.  He’d always had it, along with his precious scarf comforter.   It was particularly necessary when going through the chemo, needles, anaesthetic and when he has been in pain.

I’d been militant when Oliver and Harriet had dodies when they were little, fretting about their teeth, fretting them being “too big”, or being judged so theirs were banished at the earliest opportunity.  As you can imagine, I hadn’t really give two hoots about the shape of George’s teeth given at one point I worried that cancer might beat him… I certainly did not give a rat’s ass what other people might think.  Like I’ve said before, one of the positive things this awful diagnosis has brought with it, is a whole new perspective… and it’s liberating.

But! actual magical things happened at our house this week… with big boy’s school fast approaching George said he wanted to give his dodies to the baby fairies.  A little door appeared one night in his bedroom and he left his dodies sprinkled with fairy dust outside.  In the morning a fire boat toy had been left in return, a fire boat that George had always wanted!  How did they know?  So George, along with starting primary school has also given away his dodies and has only mentioned them since to tell the story about the fairy door in his bedroom.  The door is still there because the tooth fairy is going to need to get in one day.

So we’ve ironed three sets of uniform, and when I say we, I mean Damien has! well…. I went out buying it all! we’ve tried everything on, got water bottles and PE kits, lunch bags, new haircuts (nearly there George!) and it’ll be baths and an early night tonight.

All ready?
All ready?

On a final note, George has asked nearly every day can he go to school yet. He is totally not arsed!

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

 

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

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

Week 2 of Delayed Intensification…

As you may have seen from the Chemo Day Inspiration video I posted, last week’s treatment went miles more smoothly than the previous week!

George’s day at hospital was actually a lovely one, with his friend Pip spending lots of time with him.  He particularly loved Zoomer the little Dinosaur – there’s something for his birthday list!

He had an afternoon playing and laughing and all went well with his treatment, he was super brave having Barry accessed for his medicine to “punch the bad cells!”.  We didn’t even really need his entire suitcase but at least we were prepared this time!.  The afternoon did drag on a little but luckily my good friend Nic was on hand to pick Oliver and Harriet up from school… huge thanks again lovely 🙂

Tickle time!
Tickle time!

We went to pick the kids up but decided since it was a beautiful night and the children were all happy, we’d sit out in the garden for a while.  George loves Nic to bits and constantly asks to visit the Cairns/Furby household to play with Nic, not the children 🙂

Unfortunately the following morning George was complaining of pains in his neck, I called the Oncology Daycare at Alder Hey and they asked us to come straight in.  So, suitcase in hand again, we were off down the M62.  This time I was a bit more worried as it wasn’t something we’d experienced before and George was literally holding his neck crying all the way there and shouting hurry Mummy!  All sorts was going through my mind as you can imagine…

Poorly Georgie :s
Poorly Georgie :s

We got there and Kev, the ANP, who is always fantastic with the kids, checked George over.  He said he could see some blood and swelling in his ear and that he thinks it’s an ear infection.  He prescribed antibiotics and was dosed up on morphine and we came back home again.

Yay!
Yay!

Over the weekend we’ve had the excitement of a skip arriving for the digging out of the back garden.  George loves vehicles and machinery so he loved watching the action! The garden is really coming along now – the decking is done and is already much easier for George to access.  The work for the artificial grass begins tomorrow plus the new fencing and gate arrives.

Andrea and George
Andrea and George

It was nice to see our friends Andrea, Olivia and Ray over the weekend and the older kids had a play out in the sunshine.  George was very interested in this “Diggerland” place Andrea was telling him about – we may try and visit if we can find a quiet day!

We also had Kath and Lola come over to help us get some planters and pots filled. I visited all the local plant nurseries and bought a load of plants I have no idea what to do with!  fingers crossed they just need soil and water!  Harriet is desperate to grow her own vegetables so I’m going to try to incorporate a mini-greenhouse somewhere.

Yesterday Georgie developed a chesty cough and has become quite congested, his temperature had started rising, so I thought we would be heading back to hospital.  He had a good morning today but was snoozey this afternoon – we’ve some Mummy cuddles and it hasn’t crept up further.  Think i’ll be in his room with him though tonight as he’s definitely not himself and I find it difficult to sleep away from him when he’s more unwell than usual.   I don’t know how we’ll ever go back to not checking on him all the time!

Sleepy boy today
Sleepy boy today
Shine brightly Lacey Mae x
Shine brightly Lacey Mae x

We’ve heard more sad news that another little lady from our Oncology ward passed yesterday, another family’s hearts broken.  I’m aching for them, 4 years old. Good night Lacey Mae xxx

Lis x

 

 

Typical Bank Holiday moisture in the air!

Time for some pinball
Time for some pinball

So the bank holiday weekend has been a bit of a wash-out, no surprise there with us doing Gung Ho and work beginning on the garden!

We went to George’s hospital appointment on Friday where he was taken off the chemo that we give him at home and prescribed some more morphine.  The ANP we saw was lovely and sat playing with George before checking him over.

The skies don't reflect the mood :)
The skies don’t reflect the mood 🙂

On Saturday, Oliver and his friend Isabelle, plus me and my friends Leanne and Ruth, took part in Gung Ho!  It was hilarious and hard work at the same time.  I did feel emotional at the start when the guy doing the countdown asked which charities people were running for…

Me and the big lad before the race
Me and the big lad

Oliver and Izzy pretty much ran ahead doing their own thing once we’d given them a peg up and over the highest wall with absolutely nothing to hold on to.  We meanwhile battled through these huge inflatable obstacles, being kicked and trodden on.  The highlight was probably as the heavens opened at the top of the 5-storey slide… and I don’t just mean it was bucketing down, that was already happening, I mean hailstone, freezing, rock hard hail.  So just imagine, with your mate who’s bricking it, stood 5 storeys up in the wind and hail then throwing yourself down this vertical drop and sliding straight through ice water.  I ended up like a turtle on its back hurtling arse-first with my eyes shut.

Post run happiness
Post run happiness

I’d like say it was exhilarating and I arose feeling empowered but i’d be lying!  it was bloody freezing, I was numb and feeling a bit on the damp side.  But we did it, we were triumphant!  Oliver and Isabelle were typically stood waiting at the end for us impatiently… asking why it took us so long!?

So I just want to thank everyone who’d sponsored us, and I wanted to give special recognition to little Noah Brown who is one of Oliver and Harriet’s good friends and also one of our neighbours – Noah sponsored Oliver out of his own money box.  So cute and caring.

Thank you also to Leanne, Ruth and Izzy for putting themselves through that for our cause, it means so much to us xx

The decking!
The decking!

The rain didn’t let up for the start of the work on our garden, the decking arrived on Friday and work began on Saturday.  The guys worked tirelessly over the weekend.. I’ve added a couple of shots for now but hope to do a full on before and after post in the future.

So this week, amongst the beginning of “Delayed Intensification” it’s also Harriet’s birthday.  George is due to be in hospital on a drip of chemotherapy that day so Damien and I are going to go with him but I am probably going to pick Oliver and Harriet up to take them out for tea.  Hopefully things will be different next year for her 🙁

We’re hoping tomorrow brings good news with George’s blood test so that we the next phase will continue from Wednesday.

I’m lucky to have regular support from Lynda from the Joshua Tree, she came to visit last week and listened for a while.  Lynda has been through all this herself with her own son who is now strapping lad in his teens.  It’s nice to be able to share my thoughts sometimes with someone who can completely relate.

I feel glad that we’re at this point and that another couple of months and we’ll be moving on to maintenance.  I know it’s the treatment that’s making things hard at the moment and not the cancer, things could be different.

So sick bowl at the ready, here we go

Lis x

Oliver – my unsung hero

Tea George?
Tea George?

Let me tell you a little about my eldest, Oliver.  Oliver tends to slip through the net when it comes to reporting the latest… he’s lost his cuteness for an arty photo and has really settled down after 9 years of wreaking havoc.  I feel this is the calm before the storm of the teenage years!

What?
What?

He’s always been an absolute pain in the arse, getting up to mischief and generally leaving a trail of destruction behind him.  He was the kid that knocked your toddler over in the soft play centre because he was running at a hundred miles an hour.  He’s the one that I’ve always held my breath over on parents evening because of his behaviour.    He’s the kid that sits tapping his pen just because it annoys you… he has an answer for everything, is sarcastic and is ALWAYS right.

These days he’s quicker than me in more ways than one! he’s still always “right” but now I find myself struggling to get my point across because his “negotiating” has left me dumbstruck.

Play time
Play time

Since his little brother was diagnosed with Leukaemia in January, it’s felt like Oliver matured overnight.  I felt sad for him to have to fear cancer in his little brother.  He became sensible and caring, traits i’d not really seen in him before if i’m completely honest.  It’s been a sharp life lesson for a young lad, teaching him what the real world can actually have in store – this is real and this what thousands of people deal with every day.  We know it’s shite, we wish it wasn’t our Georgie, but when we’re through this, think about what kind of young man Oliver will have become.

Drawing time
Drawing time

It can be p*ssing down and i’ll be struggling to get the shopping from the car and no sooner am I heading back to get George out, Oliver has already undone his car seat and is carrying him in the house.  He’ll say “let me get that Mum, you see to George” when he’s upset… he’ll automatically run to comfort George if he’s shouting for me and i’m in the middle of something.

I’ve chatted tonight with Oliver about the upcoming treatment George will be facing whilst George was in the room. I explained that this is the time that he could be sick, lose his hair and sometimes cry because he doesn’t feel well.  George heard this and said “I don’t know if i’ll be brave anymore, what if I cry?” and Oliver, the most beautiful big brother sat there and said “You’re the bravest person I know George, it’s ok to cry, it doean’t mean you’re not brave anymore… I cry sometimes too!”

Giggles
Giggles

How did this happen? whatever George wants, he knows his big brother has always got his back.

Before we reached our fundraising total for our garden, Oliver wanted get involved.  We entered GungHo Manchester with some good friends, not anticipating that we would in fact meet our target before the date even came round.  That date is tomorrow!  It’s an inflatable obstacle course on Heaton Park and it’s due to pour down.

Taxi for George
Taxi for George

If you hadn’t sponsored anyone yet and you don’t feel like doing so after reading the above, you have no heart 😉 If you feel you want to drop Oliver a few pennies, you can do so here if you want to… I’m aware most of our friends have already sponsored so just catching anyone that hadn’t got round to it yet!

Fundraising aside, I couldn’t be prouder of Oliver and all that he’s achieving in everything that he does.  He’s a bright lad and is the one i’m relying on to pay my care home fees… so he better keep it up!

Fingers crossed for no broken bones tomorrow!

Lis x