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

 

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 🙂

 

Not for those with a weak stomach!

What a week… i’ve never known anything like it.

George waiting for his blood test
George waiting for his blood test

On Tuesday we headed into Alder Hey for George to have a blood test.  This was to make sure his counts were high enough to get started on the new “Delayed Intensification” phase.  We got a call later that day to confirm we needed to go in the following morning as planned as his counts were great.

Wednesday, Daddy took George into hospital first thing to get ready for theatre for spinal chemotherapy whilst I took Oliver and Harriet to school.  I then met them there just as they came out of 3B Daycare. having had his gripper inserted into his port already, and was heading to the theatre waiting room.  The nurses were very impressed with how calm George was as they put the needle into “Barry” – he is so unbelievably brave…

George was very excited to be able to ride the trike again however he had to be herded into a corner as it was quite busy in there this time and we don’t want to risk him catching any nasties.

Heading to theatre on foot
Heading to theatre on foot

He went into theatre with no fuss, with his usual lovely anaesthetist who was asking if she could have his Mummy’s autograph as she’d heard me on the radio! <cringe>  Georgie gave me a kiss goodbye and went off to theatre smiling.

We grabbed a coffee whilst he was under anaesthetic and then headed back just in time to be called to collect him again.  He came out and was happy still, staying lay flat asking for food and to watch TV as usual.  After a while, Damo decided he was going to head back to work as all was well and once George has had his observations done for a an hour or two, we can usually go home.

Feeling drowsy after theatre
Feeling drowsy after theatre

Unfortunately and typically! once Daddy had left and George was able to sit up, he started to complain of bad headaches and was crying.  This was new to us as he’d never experienced this before… he just kept lying back down saying he wanted to go home.  Kev, the ANP who was on that day, immediately prescribed morphine for him.  It took what felt like an eternity for the pharmacists to sort, when in reality it was probably no time at all.  I was pacing around with him crying in my arms as he didn’t want to be on the bed any longer.

Feeling poorly
Feeling poorly

I was starting to stress as it was hot, he was in pain and I’d also realised George’s buggy was in the car and he’d wheeled in on his trunki.  There was no way he was going to wheel back out and I now had all his meds, a trunky suitcase, my coat (it was stifling in there!), my bag and George to carry out.

Kev told us we weren’t going to be able to go home until George had stopped having headaches 🙁 a very disappointed Georgie was starting to get more distressed as was I.  The headaches were due to the chemotherapy he’d had injected into his spinal cord which travels into his cerebral fluid.

I was giving him a “cuggle” on my knee as he then puked all over himself and me 🙁 this is a side effect of the anaesthetic.  So he wasn’t having a good time of it all.  I had sick down my leg and in my slip-on shoe.  The pungent aroma of wotsits/fresh orange was radiating outwards from us and I was starting to wretch.

Feeling better in new Pjs
Feeling better in new Pjs

Luckily Mia’s mummy who was in the cubicle next to us grabbed us some paper towels while Debbie came and cleaned around us.  It was grim and I can still smell it now.  George fell asleep in my arms straight afterwards so I sat for a minute with him, then moved him onto the bed.  One of the lovely playworkers came over and sat with George while I cleaned myself up as much as I could and even managed to run in my squelchy shoe to the car for the buggy.

It was a huge relief knowing I wasn’t going to struggle out of the place and Pip, another lovely playworker, also grabbed George some brand new minion PJs to change into 🙂

Damo then had to come back out of work (in Manchester) to pick Oliver and Harriet up from school as we weren’t going to make it back in time.  My heart jumped when George started stirring and I was holding my breath waiting to see how he felt “please be ok, please be ok”, he sat up looking tiny with his dody in and said “it’s gone!? my head isn’t hurty!?  it’s magical!”

It’s magical…. could he melt your heart any more.  He literally threw his legs over the side of the bed and walked round to me for a hug.  Then he picked up his swabs (swab sticks to test for MRSA etc) that we’d already done and walked over to the nurse who had been looking after him to hand them over.

I’ve no idea what he was saying, but he was talking to her as he handed them over, again he looked so small, the nurse crouched down to him and put her hand on his shoulder and shot a little smile my way… well that was me gone then, I was in bits.  I’d managed to keep it together until then… I think it was relief.

All ready for Harriet's birthday
All ready for Harriet’s birthday

So we went home.  We had a class to get Oliver to and I needed to pick up Harriet’s birthday present and wrap everything.  I slept well that night.  Day 1 done…. only the remaining 8 weeks to go.

I’d like to say the following day was easier but it wasn’t.  We were up early for Harriet’s birthday, she was a giddy kipper and I had loads to remember… sweeties for school and all that. Daddy went to work and George and I dropped the older kids off.  I’d planned ahead with a spare set of clothes each in the trunki this time and also knew I’d take the buggy straight up with me so was feeling confident.

All was going well until about 15 minutes into the journey to Liverpool, just near the M57 where the motorway splits into three, at approximately 70mph with no sick bowl to hand, poor Georgie brought all his breakfast up.  He cried, I tried to reassure him whilst panicking he’d choke and trying to not kill us by watching the road ahead.  I had no idea where I could come off the motorway so decided we’d just plough on.

Of course, with no baby wipes in the car, there was not one parking space under cover so the car sat there in the blazing sun ALL DAY caked in puke.  I stripped George on the car park, he cried, I wretched, I cried, he wretched.  I had nothing to clean him up with (used all the wipes the day before!!) so he put his one clean outfit on, over the sick.

We were a sight for sore eyes when we walked in again.  The nurse directed us to the shower where we could get cleaned up and gear ourselves up the drip and an hours worth of IV chemo.  He carried on being sick for the time we were there and was prescribed anti-sickness drugs to take as well as his morphine.

Poorly boy :(
Poorly boy 🙁

He looked like crap and obviously felt like crap and it was sad sitting there knowing that it was this medicine causing him to feel this way.  It’s a horrible feeling that I wish I could take away.  But amongst all this, I received a really aptly timed picture from George’s preschool saying “Go George!” from all his little friends and teachers.  That day they’d had a Superheroes and Princesses walk for George… I shown him the picture and cried a little.

George's friends cheering him on
George’s friends cheering him on

Thank you everyone – not only for your walk, and the funds you’ve raised, but for that special moment in hospital when we both felt sad – you really lifted the mood.

The doctor decided to leave the gripper in “Barry” as he may have needed fluids the following day because of the vomiting.  Damo needed to come out of work again to look after Georgie so that I was able to collect Harriet up from school on her birthday (and Oliver of course).

The car was as you would imagine when I got back to it.  Thank you to the random stranger who gave me a packet of wipes from his boot… He copped for the whole story in the lift so probably felt obliged!

George was surprisingly much like his usual self once home, of course he always is once Daddy is around!  We then had classes to get the kids to again then Pizza Hut for tea with Oliver and Harriet’s Daddy.  Damo and Georgie stayed at home.

George enjoying time on the park with Fin
George enjoying time on the park with Fin

We had Friday off, when I had the pleasure of cleaning the dried vom out of the cracks of the car seat and also had our friends Dawn and Fin visiting during the day.  George had a little play on the park for 20 mins, so that was a nice change.  Harriet’s little friend Lola came to visit after school with her birthday present and with her mum Kath who I got to offload some of my stress to…

Harriet and Lola
Harriet and Lola

Yesterday, Saturday, George’s sickness had died down but he had to go back for an injection in his bum and have his gripper taken out.  I honestly couldn’t face another trip to Alder Hey and see him crying, which I knew he would, so I stayed with Oliver and Harriet and Daddy took George.  They had to wait around for an hour following the injection in case he became ill.

Isobel and Oliver making lunch
Isobel and Oliver making lunch

Meanwhile Oliver and Harriet enjoyed themselves at our friend’s house, the Appletons.  Thank you for looking after us Mrs A. George came home and was in a good mood and told me all about it before carrying on with his day.

So next week here we go, Week 2 looks slightly more promising without a theatre trip, I’m going to pack the entire house when we go and make sure we have sick bowls within easy reach in the car.  It’s a learning curve!

Latest beads
Latest beads

Here’s a little pic of him with his latest beads, he’s come so far and is still smiling 🙂

Lis x

The new phase and the new bedroom

Georgie in his new room
Georgie in his new room

It’s been a very busy week following the St George’s Day toddle last weekend – a day that we’ll never forget.  What I’m finding amazing is how, at such a difficult time for us as a family, we’re managing to have some of the most beautiful, positive moments.

A great example of this is the transformation of George’s bedroom that’s also been happening over the last week.

A secret bed pulls out for Mummy or Daddy
A secret bed pulls out for Mummy or Daddy

We’ve had kindness from all directions for that too with our good friends, Ryan and Simone Norris, donating towards George’s new bed along with The Mark Gorry Foundation.  This has made life so much easier as his new big boy’s bed has a second bed that pulls out from underneath!  it means that whoever is on duty that night (cough, cough Mummy) can sleep comfortably by George and let the other get a decent night’s kip.

This is going to be particularly important over the coming months as George might be more sickly and uncomfortable.

Grey walls and fire engines
Grey walls and fire engines

George’s Nanny Jane and Grandad Tony bought him a new bedding and curtain set – covered fire engines of course!

The team at North Cheshire Construction worked tirelessly in their spare time to rip out the old room, remove the old nasty artex ceiling, plaster, paint, wallpaper, install new sockets, switches, skirtings and more….

Hallelujah for storage!
Hallelujah for storage!

We feel blessed to have such wonderful people around us and are eternally grateful to everyone.

George’s “Interim Maintenance” phase of treatment is already drawing to an end this week and we’ll be moving into “Delayed Intensification” next week… yeah it’s as grim as it sounds.

A LEGO gift off the builders!!
A LEGO gift off the builders!!

I’d intentionally avoided looking closely at what this next phase is going to include as it’s renown for being harsh compared to the current phase.  This next 7-8 week phase is going to hopefully eradicate any remaining nasties that are hanging about, then the next 3 years or so of chemotherapy are to make sure it doesn’t come back! well that’s my understanding anyway…

Debbie being a bit crazy!
Debbie being a bit crazy!

Luckily for George we have nurses like crazy Debbie to keep us amused each visit though.. this was George yesterday having a blood test – I’m so proud of him, he just cracks on even when his nurse is a bit nuts 😉

Tomorrow we’re back at Oncology clinic at Alder Hey to have the chemo that he has at home adjusted and prescribed.

Next week we’ll be starting with a blood test on Tuesday then depending on his blood counts, we’re back Wednesday for theatre (spinal chemotherapy), Thursday he’ll start back on steroids and have another two kinds of chemo through a drip for an hour or so.  He gets Thursday off but we’re back on Friday for an injection in his bum that he’s had before… he doesn’t like it (who would!?) but I think that might the last one of those he needs for this phase thank goodness.

Amongst all the above he’ll still be having his daily chemo at home and his weekend medicine that he’s had since the beginning.

Lisa and Olivver
Me and my big boy

So approach with caution next week, it’s Week one of eight for this phase.  I’m anticipating less sleep all round, roid-rage, a few more tears (all round!) and the peperami monster might be back… at least we have a cosy new bedroom to keep him smiling and how lovely was the message from the Swashbuckle crew today!?

There’s more excitement happening this weekend with Oliver and I taking part in Gung Ho Manchester on Saturday morning with some of our lovely friends.  Our target for our garden has been met before we even managed to take part!? a testament to the support we obviously have out there!  I’ll still be updating on how we get on as Oliver’s really looking forward to doing his bit and embarrassing his Mum!

Lis x