Stop the roller coaster, someone’s been sick!

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

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

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

Daddy the climbing frame
Daddy the climbing frame

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

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

Cling filmed up
Cling filmed up

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

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

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

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

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

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

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

 

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

Cycling George
Cycling George

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

Andrea and Anthea visiting
Andrea and Anthea visiting

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

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

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

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

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

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

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

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

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

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

Lis xx

 

George’s latest chemo and Team Erin Cross

Garden fun for Harriet and George
Garden fun for Harriet and George

With Wednesday’s five and a half hour treatment out of the way, we were pleasantly surprised that George returned home acting like his usual self – cheeky and wanting to play outside.  We’re still only a few days in from that treatment and know there’s still time that his counts can dip and he can get a temperature or any of the many other side effects.  Any initial sickness hasn’t happened though, just a tummy ache on Wednesday night – maybe the anti-sickness drugs did the trick?

Here is George and Harriet after George’s full day in hospital having chemotherapy on Wednesday this week.

Daddy did the hospital run that day and I stayed home with Oliver and Harriet to try to keep a bit of normality.  George was very brave having “Barry” accessed and just cracked on with his drip in all day.  He also bumped into Erin and her Daddy whilst in hospital and caught up on the latest fundraising to help get Erin to America for her life saving treatment to prepare her for a bone marrow transplant.  You may remember I posted early on when I started this blog about a family we met at The Joshua Tree when George was first diagnosed, that I’d felt relieved Damien had met another Dad he could chat to – sadly Erin has since relapsed and the family just found out their only hope for their little girl is to receive Car T Cell therapy to get her into a position to receive a bone marrow transplant.  On Wednesday I think the fundraising had only really just got into the swing of things and the £100,000 they needed seemed so far away.

Erin Cross
Erin Cross

Today, by the power of social media and the generosity of so many people, the target has been smashed and they are at almost £116,000.  I am elated.  For Erin, for her Mummy and Daddy, for all the people that love them and for all the people who donated – every one who donated is a hero in themselves.

Some people disagree with how much I put on my blog and social media, how much I share my thoughts and feelings about what our family are going through.  Without social media right now the outlook for Erin and children alike would not be such a positive one – this is because her family have put out there what is happening to their child, how they feel and opened up there hearts to anyone would listen.  I guarantee you would do the same if you had to walk in their shoes.  If anyone would like to add to their fund, as Erin’s trip to America for treatment is not likely to just be a one off, you can donate here.

George taking his oral chemo himself
George taking his oral chemo himself

George returned from hospital on Wednesday with a whole bag of goodies for the Macmillan nurses when they come to give him his daily chemo in “Barry” at home for the next four days.  George is also back on his mercaptopurine medicine (the one he calls his chocolate medicine) which is his chemotherapy we administer now for the next three years.  He also has anti-sickness and morphine to counter act the other side effects of cancer treatment.

Oliver chilling
Oliver chilling

We’ve been fortune enough over the past few days to enjoy some sun and high temperatures in the North West!  Our beautiful garden has been made the most of by all of us and the last few jobs are almost there.  The awning has been out in all it’s grey and yellow glory, protecting Georgie from the sun and protecting all of us from the odd rain shower – come on, it is Warrington after all.

This morning I noticed the wee George had in his potty looked a funny colour. We’d been told that bladder damage is a side effect of the Cyclophosphamide drug he’d had so had to take him straight in if there were any changes to his urine.

And so the comedy sketch of getting three reluctant kids dressed, a suitcase packed in case we were kept in and all out of the door as fast as possible began.  Luckily our volunteer from Home Start was here when I made the phone call to Alder Hey which meant she could at least prevent the kids from Homer-Simpson-strangling each other while I tried to get myself ready.

Olly and Imy’s Mummy, Nic, to the rescue again, where I dumped Oliver and Harriet on the door step and sped off with George.  I did have a pang in my chest en route and was a little upset for the older two children but was also thinking about these side effects for George and whether might lead to something serious.  However the kids had been made up with getting a play day with their friends and George had was happy to be going to hospital!?.

George and his nurse taking blood from Barry
George and his nurse

After having his obs taken, his pee tested and being checked over by Kev, the ANP who always makes George giggle, he was prescribed some antibiotics for a UTI (water infection) and had bloods taken to check if he needs a transfusion.  You can see him there in a photo casually perusing the Argos catalogue he likes to carry about with him!

We were allowed home by mid afternoon, though almost needed a snorkel or oars or something…. the storm that occurring in Liverpool was of apocalyptic measure.  The good old sperm whale (C4 Picasso) saw us through though and we made it back to collect the children and stayed to have a quick brew…. a quick brew that lasted about 4 hours that is when our friend also joined with her two!

Why say it in three words when you can say it 3000 though?  that’s my motto!

Lis x

A week’s stay and an injured minion

Poorly Georgie cuddles
Poorly Georgie cuddles

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

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

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

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

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

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

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

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

Andrea being wheeled off
Andrea being wheeled off

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

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

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

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

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

George and Theo
George and Theo

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

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

George and his Lego shuttle
George and his Lego shuttle

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

Lis x

George having a wander
George having a wander

 

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 🙂

 

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

 

 

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 🙂

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

Alder Hey Oncology – Phase 3 Week 3 of treatment for Acute Lymphoblastic Leukaemia

So after a lovely few weeks off visiting Oncology at Alder Hey, George went to clinic in a great mood. It’s like the weeks off leave him totally refreshed so we’re grateful for the gentle phase of treatment.

Oliver had got off to a bit of a rocky start in the morning when he appeared pastey looking and complaining of stomach pains. NOT what we needed. Given it was only mentioned when it was time to leave for school and not for the whole time he’d played a computer game – off to school I booted him, with some reassurance i’d come and get him if need be and gave the office a heads up.

George had been being nil by mouth since the night before because he was going to theatre. Oliver and Harriet bless them have to eat their breakfasts like Ninjas in order to not get rumbled by Georgie Roo. It was only by the time it was about 1 – 2pm in the day he was starting to say he was hungry so he didn’t do too badly. We don’t torture him, so also don’t eat… which is not the cleverest idea! By 11am i’d already started flagging, the sneaky Actimel i’d necked in the car wasnt cutting it anymore so it was caffeine all the way!

It was great to hear George had put on 100g as they’ve been keeping a close eye on his weight loss. If he drops much further they’ll be thinking of inserting a feeding tube. Bizarrely, I’ve felt like as soon there’s a feeding tube in, he’ll suddenly look ill… and how are we going to get his salamis down it??

George holding playdoh
George made me a cauliflower whilst waiting

We met with George’s Doctor, Helen, who was really surprised to see him get out of his pushchair, playing with a plastic tea set and offering us all a brew and toy cake (the irony). She felt he looked really well and was even more impressed with what looks like a full head of hair! we know he’s lost loads as we keep finding it everywhere (can’t blame the cat all the time) but overall, you don’t look at him and think he’s bald. She said about 1 in 100 children don’t lose their hair but not to get too comfortable as the treatment in the next phase in May is much more aggressive.

That’s another thing George has not quite fell in line with, his bloods at diagnosis weren’t actually showing he had leukaemia like most other children’s. There were only 2 other cases in the whole year last year – he’s a little marvel.

Dr Helen Campbell did say that they are having to take him off his chemotherapy medicine (Mercaptopurine and Methotrexate – the ones we give at home) for a couple of weeks as his blood results are too low. This is all part of normal treatment I believe, they make adjustments based on how his body is responding. They’ll do another blood test and once his bloods recover, he’ll go back on the chemo.

We had a good old chat about the central line and what kind would be best for George. We were torn between the options as one will mean no more needles but it can’t ever get wet (think baths, showers, swimming, paddling in summer) and the other means it’s accessed with a needle but he’d be able to do most things that involve water. After the debate, we went for the port under the skin. We know its the ripping the adhesive tape off, squeezing his arm, the tourniquet, being woken in the middle of the night that’s contributed to the traumatic experiences with cannulas – It’s not necessarily the needle itself.  We chose the Portacath option.

George crossing fingers
George trying to do “fingers crossed” that he’s next!

George needs this central line as the next phase of treatment involves more intravenous medication and regular access to bloods etc. We’re looking forward to getting May and June out of the way.

After hours of going back and liaising with different medical professionals, we found a surgeon available who was available to insert his portacath and give him his spinal chemo too. It just meant we were on an emergency list rather than a scheduled one which meant some more waiting. I ended up leaving the hospital at 2.15pm to head to collect Oliver and Harriet from school… still nil by mouth but wired on caffeine (I did go straight to Subway for all those people who are about to text me).

bag and pink sleeping bag
Bag packed and not forgetting the pink sleeping bag!!

George had been given a pre-med before surgery today for the first time to save the anxiety he had with the anaesthetic mask and it worked a treat! he was flat out for the anaesthetic and went off with no problem. While he was down the nurses told Damo that George was going to have to stay overnight for pain relief – something we hadn’t anticipated, the pain or the overnight stay. So I drove to get the kids, nipped home, packed a bag, grabbed the pink sleeping bag and drove back down the M62 AGAIN.  It feels like I could get to Alder Hey with my eyes shut these days! (not recommended).

Oliver, Harriet and I arrived again and George was still in theatre – the waiting is absolutely awful, i’ll admit. But sadly I needed to get in and out of the place as Oliver was flagging and obviously we don’t want to be passing anything on to all the already poorly children.

We’d got all the way back to Warrington, been for a KFC (couldn’t be arsed cooking) and gone home again and George was STILL in theatre. Poor Daddy 🙁 he was in for about two and a half hours. He was still quite drowsy when he came to and just asked “What’s this?” about

George asleep with dressing on neck
Flat out and high on morphine following portacath insertion

the dressing on his neck and chest. He didn’t mention it again!  he had something to eat and went back to sleep.

Oliver went straight to bed without eating last night with his sick bowl/the mixing bowl and said the “unhealthy food is making me gag”, I’m a great mother aren’t I?

This morning George has just been waiting on having his cannula out, he’d needed it in case he needed a blood transfusion and then he’s ready to go. Daddy just sent me this photo, he looks like a Gallagher – both the Oasis type and the Shameless type.  He assures me he’s not grumpy, just concentrating on the tv.

George in a pushchair
George ready to go home

Mummy is looking forward to cuddles with Georgie this morning and maybe i’ll let Daddy have a little snooze…

Alder Hey Oncology visit Phase 3 Week 1

Friday 4th March  2016 was Day 1 of George’s third phase of treatment.  Mummy was very brave and even got a sticker herself for taking George to Alder Hey without Daddy!

The plan was that George was just having an injection of chemotherapy with a “butterfly injection” but unfortunately they felt George’s veins were too bruised from previous cannulas 🙁 This meant the magic cream was out in abundance covering all his available veins… It takes an hour to work – an hour of me sweating and fretting that is.

We were then seen by the doctor who checked George over and prescribed his chemotherapy and steroids for the next week.  The conversation about a permanent line was had again to avoid all these additional needles and upset for George. The doctor said she is looking at getting him in in 2 weeks but we’ll see about that.  There seems to be mixed opinions between the doctors as to when he should have his central line fitted (we need to work out the pros and cons to the different kinds of line he could have).

George was pretty put out whilst sorting the cannula, he was literally shakeing on my knee crying “is it nearly done yet!?” I can’t stand it either but know it’s necessary at this point. to be honest, it’s the ripping the plastic stuff off his skin that he’s crying about.

The IV team at Alder Hey did a marvellous job and got it in first time so easily, they’re amazing! As soon as it was in, he sat looking at it in his skin like a hard man… Saying its “all done now, can I have a sticker?” bless him.  Mummy got a sticker too for being brave 🙂

Back out of the room he just got on with playing with toys and wasn’t phased when the nurses came to give him his chemotherapy. That was done whilst he played and chatted and then we were free to go!! At 3pm – 5 hours later!

I was too late to pick Oliver and Harriet up from school as it’s a half an hour drive at least from Liverpool to Warrington.  Luckily we have the support lots of our local friends who jumped in and collected them – much to the kids’ excitement as it meant they got a quick play with their friends.