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

A wobble during maintenance phase treatment for leukaemia

Feeling like the world is moving in Daycare

So a year to the day yesterday was the first day George was hospitalised in Warrington for low blood counts, a limp and fever.  Little did we know how our world was about to never be the same again.  A year on from the initial symptoms of leukaemia developing, we’re trying to live life to the fullest around George’s treatment and hospital admissions.

This time last week I was telling people how lucky we’ve been, apart from for scheduled visits and the odd temperature here and there, we’ve avoided staying over at Alder Hey and anything too concerning.  Today we’re sat waiting to be called to theatre following an overnight stay for an unscheduled investigative lumbar puncture and MRI.  Someone somewhere must have read my gloating Facebook posts of festive fun thought…woah… that’s enough Lis!

Yesterday morning George didn’t seem right when he got up, he was unsteady and said “the world is turning”.  I put it down to him getting up out of bed too fast which had made him dizzy.   He was holding the furniture in his bedroom to get to the bathroom and asked me to support him on the loo.  Afterwards he was fine and took himself downstairs to Oliver and Harriet for breakfast.  If I’m honest, I didnt think too much of it!

Damien had taken the day off for us to go out for breakfast, do some last minute Christmas shopping and finish the wrapping – a rare moment of just us two while the kids were in school.  He took them off on the school run and I lazed around making the most of my rare lie-in.  I just asked Damien to mention to George’s teachers that he’d had a dizzy spell.

George must have been in school for 15 minutes tops when the school office called to tell us he seems confused and is standing quite rigid.  Damien rushed back for him while I gathered our stuff and called Oncology Daycare at Alder Hey.  We were told to take him straight in and if there was any delay to call an ambulance.

The following few hours consisted of George being vacant, staring into the middle distance with dilated pupils even when a light was shone into them.  He was weak down his left side and didn’t seem to understand us when we spoke to him.  It probably lasted about 5 hours before he started to return to normal again.  The nurses and staff were lovely and supportive and kept a close eye on him throughout – we also got to chat to lots of our oncology friends as they passed through for their treatment before Christmas.

I recalled that the day previous I’d had a call from school saying George had bumped his head but there was no mark and he wasn’t upset.  Although George hadn’t been sick, the nurses considered him having delayed concussion and he was sent for for a CT scan.  That wasn’t a very positive experience… the motion of the moving bed down the brightly lit corridors sent George’s eyes rolling all over the place and he became distressed.  He cried and Mummy had to lie like Superwoman (literally!) on the bed holding his hands as he went through the CT machine.

By the afternoon, although George did look to be improving, the ANP looking after us said that they’d be happier if he stayed overnight to be monitored.  The CT had been inconclusive and were told it was likely he’d have to go to theatre this morning for an investigative lumbar puncture.  They will some spinal fluid under general to be tested for viruses and “nasties” i.e. cancer cells.  He’d already had Barry accessed for bloods to be cultured, we knew his blood counts were good, he didnt have a temperature and he’d provided a urine sample.  The hospital want an answer as to what has set him off in this way before they can relax.

Smith Brothers Champion Boxers at Alder Hey

Alder Hey has a real festive air about it at the moment, there are little Christmas trees everywhere, Santa and even some superhero characters knocking around bring smiles to the kids faces.  There were a group of brothers who are boxers who came round the Oncology unit to see all the children too…they were so friendly, nothing phased them.  Having been in a position where you’re scared to death of being around children with cancer, I think it’s an amazing thing to do coming here!  I have friends and family that have still never stepped foot in the place yet there they are.

George had a restless night, I’m shattered as I kept having visions of him chucking himself out of the bed (even though there are rails on it).  This morning he’s perky, chatty and reassuringly like himself.  He’s nil by mouth ready for theatre and asking for food constantly – it’s currently nearly twelve and we’ve not been called yet.  Daddy has returned from home and we’re being martyrs not eating for him either.

Karen, who was George’s nurse yesterday in Day Care, has already bobbed in to us in our room to see how he’s doing and was well impressed with how bright he is.

Daddy and Georgie enjoying some Youtube Lego videos

I had got into my head that if he was well this morning he probably wouldn’t go for the MRI.  I’m conscious he’s going to freak out in it and he has to lie perfectly still in the really loud machine for 15 minutes.  I’ve pushed for him to go under general anaesthetic whilst in there but there isn’t a slot available at the same time as his lumbar puncture when he’ll already be under.  I just thought with him being seemingly well today they wouldn’t put him through it.  However, it’s not the case, although he’s much more ‘with it’, he’s still slightly weak on one side and the doctor would prefer a more detailed image of his head and spine.

Fortunately for Oliver and Harriet, their Daddy has finished work for Christmas now so they’re getting some quality time with him while we’re back and to.  Thank you to everyone who keeps messaging offering to have them! I really appreciate your kindness.

We also appreciate the offers of visits, dog walkers, shopping and present wrapping!  but i’m keeping optimistic and am hoping these scans and tests are going to be clear and we’ll be sent on our way today.   If not, I will most definitely be in touch.

So for now we’re just watching shite YouTube videos and building Lego with George, desperately hungry but not wanting to eat for George’s sake but also a little through anxiety at the same time.  He’s saying he’ll be very brave for his MRI – he shouldn’t even have to know what one is, never mind be brave!

Feeling the need to remind myself what there is to be grateful for so here goes with today’s 5 glads!

  • Glad I finally got to meet a local family I’ve been speaking with online after their little one unfortunately became an oncology patient at Alder Hey recently.  We had a couple of mutual friends who’d put us in touch and realised last night we are neighbours on Ward 3B.  We chatted for hours last night, putting the world to rights.
  • I realise that without tough situations like what’s happening right now, I wouldn’t appreciate how many good friends and family members we have behind us.
  • Glad we got to bump into our friends Erin and Jack yesterday in Daycare and hear how well they’re doing and what lovely Christmases they have planned – something that months ago they couldn’t even think about.
  • Grateful for Alder Hey… and how there’s no messing about in this place, if there’s something a-brewing, there’s not waiting it out at home, they just keep going until they work out what it is or how they can try to fix it.
  • The nurses and support staff.  They go out of their way to chat, help, support and even make us laugh during our stay.
Off to theatre with a turkey

I’ll keep visualising wrapping presents with a glass of Baileys later… hope every one is having a lovely build up to Christmas and not complaining too much about traffic, shopping, wrapping, and their kids – treasure it all folks!  Update you all again soon x

ps. he’s just gone into theatre no problems with a member of theatre staff with a turkey on his head.. what more do you want?

 

 

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

 

 

A message from the Swashbuckle crew!

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

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

Our St George’s Day Toddle – Warrington

Me with the wonderful organisers, Helen and Sarah
Me with the wonderful organisers, Helen and Sarah

The photos say it all really – yesterday was awesome.  The day totally exceeded expectations on every level… the amount of lovely people who turned up, the amount of money raised, all the cute outfits, the glorious sunshine and what about all that CAKE!?  A huge well done to all our toddlers!

Hats off to Helen and Sarah (and their families!) for all the organising and pulling everything together.. and to the helpers on the bandstand!.

Harriet selling cakes
Harriet selling cakes

Thank you to those big girls and boys who were guilt-tripping people into buying the remaining cakes ha ha! especially my own Harriet who ran up to me holding a tray asking if i’d like a piece of rocky road before it melts “ooh don’t mind if I do”, picking it up thinking they were just trying to get rid of it and she then said 50p please!!  Not daft that one… and I had the indigestion to prove it.

George in his chariot
George in his chariot

Georgie, oh our brave knight George Rooza, really was like the King! he was a little overwhelmed at the beginning preferring to chill in his new chariot with a cake (who can blame him?) but was laughing and giggling by the end.  He really had a lovely day, we all did.

George and Daddy leading the toddle
George and Daddy leading the toddle

The sun shone brightly on us all for the whole day, I couldn’t believe our luck with the weather.  Especially now while i’m sat looking out at the rain today.  And well done me for keeping it together!  I was emotional in the morning before we went… a combination of nerves wondering whether people would show but also a little sadness for the reason the day was actually happening.  I wished it was just a St George’s Day toddle and wasn’t because my George is poorly.

Setting off, being at the front with our little boy  and walking through those beautiful gardens was also a bit of an emotional moment… knowing there were hundreds of people behind us, literally and figuratively.  There were people I hadn’t seen for years, people had brought their families and friends, old friends had travelled to be there, new friends had made the effort.  We met families that had read our story and battled cancer personally that just wanted to support us because they understood.  People came who saw the event on Twitter and Facebook… social media at its best.

The little Ramsdales - winners of the best fancy dress!
The little Ramsdales – winners of the best fancy dress!

I spotted a little green dragon on the walk that looked very cute so when asked who we thought was the winner of the “best dressed” the prize went to little Freddy! His sister Ffion made a fine knight in her home-made costume (love a home-made job!) too and their sleeping baby sister Marley was ever so cute as a little princess!  So well done to the Ramsdales, I hope you liked your prize.

Amazing turn out
Amazing turn out

It was amazing to get home yesterday and find that we’d hit the £5,000 target we set only 4 weeks ago to fund our garden makeover on GoFund Me! We worked out yesterday from our super organisers with their registration forms that from the toddle alone is predicted to have raised a mahoosive £4,000! some of that has already hit our GoFund Me account direct of the last few weeks and some families are still collecting… so you’ve collectively absolutely blown our target out the water!

We’re so shocked to have raised so much in such a short space of time and will be putting it to great use when work on the garden begins next weekend.  I will be blogging as the work on garden progresses so that you amazing people can see what the funds are going towards.

We hope the photographer from the Warrington Guardian shares the photos he took during the week, he was great at getting us altogether at the start, I’m sure that photo will be one for the memory box here.

Thank you x
Thank you x

We have a million thank yous to make! I tried my best on the day to talk to everyone but know we didn’t get round all of you… so from the bottom of my heart, our hearts! thank you each and every little pair of legs for toddling, big legs carrying babies, your sponsors, all the helpers and organisers, cake and flag purchasers, sharers on social media… Walton Gardens for allowing us to use the lawn and gardens, The Warrington Guardian, Wire FM and Heart Radio for raising awareness – what an amazing community we have.

I’ve already thought it’d be great to make this an annual St George’s day event! and before Helen and Sarah have a heart attack, maybe I could get more involved with the organising next time 🙂 It’s about time we got a little more patriotic and will give us another positive focus for the future.

Sleepy George on Daddy's shoulder
Even the King needs to nap

So what a wonderful way to end George’s “interim maintenance” phase of his treatment…it’s been a welcome break from the weekly theatre trips.  The next few months we anticipate being the hardest but we’ll take it in our stride as best we can.  George is going to be in hospital more often receiving chemotherapy into “Barry” his port for hours at a time, some nasty injections are on the way and more theatre trips under general anaesthetic.  We know it is eventually going to make him better and we know we have an amazing community behind us… so bring it on, we’re refreshed and we’re ready.

Lis x

Preschool and quiet sunny days…

This week George has managed to attend Playdays (his preschool) with the care and support of the fantastic staff there.

During this gentler phase of his treatment he’s managed to attend Playdays more than we’d ever anticipated.  He absolutely loves it, he loves his friends, the staff and we’re at the stage where we’re completely at ease with him attending (his health and energy levels permitting).  This wasn’t something I ever thought would be possible when he was first diagnosed with Leukaemia?!

We wanted to allow George to have as normal a childhood as possible regardless of his leukaemia treatment and although he is at risk in this setting more so than being at home, the positives completely outweigh the negatives in our opinion.   The positives being his about his mental health, developing social skills, maintaining his friendships and education preparing him for starting ‘big’ school in September (hopefully!).

We luckily already had a great relationship with the staff there and have also developed trust and even friendship with a lot of the parents, this is what has made all this possible for George.  So I want to say a huge thank you to the parents of George’s friends at Playdays for being so understanding of our situation and considerate.  I know some of you have been panicking yourselves.

Georgie feeding the birdies in the garden
Georgie feeding the birdies in the garden

Playdays have had the support from George’s Macmillan Nurse to ensure he is safe and the staff understand what they’re looking out for when he’s becoming symptomatic – I am always local and available for him at the drop of a hat too.

I think at first we were all a bit nervous of how it would work but things have gone really smoothly – Sharon and the girls recognised when George isn’t himself now and it’s not as scary as we all first thought when he is starting to go under.  I think we’ve had a couple of occasions where we’ve had to dash to hospital with a temperature during the day or where he’s just needed to go home as he’s burnt off all his energy.

The last few days he’s been so stubborn and has literally begged to go even though I can see he’s shattered.  Yesterday he was particularly quiet and I’d been wondering if he was coming down with something but I think he’s just not stopped on the days he’s been in preschool so is exhausted.

Today we’re having a quiet one and trying to allow Georgie to recharge his batteries ready for his St George’s Day toddle on Saturday at Walton Gardens.  He’s pottered about a little but has spent most of the time lay down resting.  He’s not eating quite as well as he was but it’s down to him having lots of ulcers in his mouth 🙁 this is common when you’re on chemotherapy, he doesn’t even complain about it.  He’s also had a nosebleed today which can be a sign of low platelets (again caused by chemo), George took himself off to the toilet and come walking back in holding a tissue to his nose saying “im just having a little nosebleed” …it stopped quite quickly and we’ll keep an eye on it.  He’s not phased by it one but.

These things aren’t so scary for us either now compared to how you feel about it in the early days of diagnosis.  It just becomes part of life now we know what we’re looking for and George just accepts it as normal for him.

Photo of Georgie and Mummy taken by Warrington Guardian
Photo of Georgie and Mummy taken by Warrington Guardian

We had a little more fame this week as our St George’s day Toddle has been featured in the Warrington Guardian It seems it’s going to have a great turn out with over 100 families saying they are attending.  There will be cakes, drinks and St George’s Day flags for sale while you enjoy getting involved with the toddle.  If you’re on Facebook you can view the event here and join the fun.

This event has been organised and sorted by my wonderful angels, Helen Dolce Lund and Sarah Poole who I can’t thank enough for making it happen.  Thank you also to all the people who are baking cakes and volunteering to run the cake sales, the toddle registration and helping guide the kiddies along the course.  I know my own Oliver and Harriet and some of their friends are going to be getting stuck in helping us out too 🙂

You can see how our fundraising is going here and also sponsor George himself if you want to.

So after a nice quiet day with the little man himself today, we’re going to collect the rabble from school shortly and see how they’ve got on on the Queen’s Birthday whilst dressed in red, white and blue… that was fun trying to sort out this morning amongst the building work going on upstairs and George sleeping in until 8.30am!  Then it’s drama class for Harriet tonight and we’d better think about baking something for Saturday.

I also know there’s a surprise at George’s preschool tomorrow that all the kids are going to love so hopefully he’ll be feeling up to it in the morning, even just for an hour or so.

Hope to see as many of you all on Saturday as possible, I will try my best to keep myself together xxx

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

Just another day in the life…

Ceiling leak
Drip, drip, drip

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

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

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

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

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

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

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

George asleep
Snoozing George today

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

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

Happy Facebook posting folks 😉

A confused hospital visit and happy times

It’s been a busy old week in our household, what with the school holidays and same hospital appointments to attend, visitors and a few late nights in a row for the kiddywinks.

Last week were told that due to an unusually low blood count results for George he was going to need an unscheduled bone marrow aspiration.  This was worrying us both a little, but had typically not told each other and just got on with things hoping for the best.

I was under the impression if George’s bloods had improved by Wednesday this week, he wouldn’t need the bone marrow aspiration, but the Doctor had prepared us and booked him in just in case.

Harriet and Olivia eaten ice lollies
Ice lolly time!

Wednesday came along, my lovely friend Andrea came and stayed at ours with Oliver and Harriet while I took George to Alder Hey.  He was super brave as usual with his blood test and got his smiley face plaster and off we went on our way.

The kids had a fab day playing with Olivia and Ray and by 4pm I couldn’t hold off any longer and called the hospital to see if his bloods were back.  Whoever it was said that his bloods were all great.  I was so made up I did a little running man dance on the spot!  It felt like a weight lifted knowing his bloods have recovered – panic over?

George showing Ray his fire engine
George showing Ray his fire engine

The reason for the panic for us with George is that his bloods behaved in the same way when he was diagnosed – everything was low.  Normally most children’s leukaemia diagnosis is picked up in a routine blood test where the lab can see something suspicious lurking (technical terms!), usually a large amount of white blood cells, and alert their doctor.  With George, his bloods stayed low and got lower and lower (including white blood cells) until a bone marrow aspiration was performed and they found leukaemia causing trouble.

So as you can imagine knowing George had been OFF chemotherapy, that normally knocks his bloods counts down, having a break for two weeks then finding his counts were still abnormally low, had raised concerns.  The bloods having risen I thought meant everything is okay after all.

We were told we still needed to go into Oncology Clinic at Alder Hey on the Friday because George needed to be checked over and prescribed his next dose of chemo.

An excited Harriet and Mummy at Little Mix!
An excited Harriet and Mummy at Little Mix!
Little Mixers
Little Mixers

Thursday night Mummy and Harriet had a gorgeous girly night with our friends by going to see Little Mix.  We got dressed up, had tea out in Manchester and donning glow stick bracelets and head gear we “Got Weird” It was Harriet’s first concert and it was ace.  Myself and my Little Mixer didn’t get home until 11.30pm so were absolutely shatttered… of course Hattybojangles was up at 7.15am full of beans on Friday morning <head in hands>

Cute, George stood on Olivers feet in clinic
Cute, George stood on Olivers feet in clinic

Damo had taken the day off work on the Friday and was meant to be doing the hospital run but ended up staying home with Harriet and a bad back while Oliver and I took George together for a change.  It was quite a novelty having big brother around to keep him occupied.  We also saw George’s favourite play worker who always makes him smile, Pip! who he laughs at asking why she has a cat’s name! (this is cute if you already know us… our cat is called Pip).

George being checked over by the Doctor at Alder Hey
George being checked over by the Doctor at Alder Hey

So I brazenly walk into the Doctors office once George had been weighed and had is heart rate checked to be asked if he had been nil by mouth?  errrr….. No?? Why? he’s not going to theatre?  so the doctor goes on to tell me that indeed theatre had been cancelled that afternoon so he wasn’t going, but they do still need to perform his bone marrow aspiration.  George had been on steroids that week and I learnt only on Friday that steroids affect blood counts… still learning.  But basically this means, he’s now in next Friday for bone marrow aspiration to see what’s going on as the steroids may have been elevating his counts.

He is due in on Friday for a lumbar puncture / spinal chemotherapy in theatre anyway, so they’re doing it at the same time.  This is the staying lay down for an hour after theatre day so wish us luck!!

We did take advantage of George not being neutropenic (very low infection fighting cells) and ventured out to Lymm Dam today which was nice – i’m not 100% on how cautious we need to be but we weren’t in a crowded place so gathered it would be good to get out while Nanny Jane and Grandad Tony were visiting for some fresh air.

It was lovely to see George actually doing some walking, peeping behind trees and playing, be it with the buggy nearby, as he’s not walked further than around our house really for the last few months.  I’m hoping to make the most of this lack of pain and being fairly well in himself before May is upon us and his intense treatment begins.

We even managed to go out for a meal with Nanny Jane and Grandad Tony!? usually we’d be avoiding crowded places like the plague but luckily found somewhere we could sit out of the way of everyone else in The Black Swan.  It was early so only a few other tables were taken… we all enjoyed the treat without the washing up 🙂

This has actually got me thinking, some lovely friends are organising a St George’s Day Fundraising Toddle for our garden project that we really want to attend in a couple of weeks but it’s going to be mad busy isn’t it!?  I’m probably going to have to put something out there on the Facebook Event to state, which I’d hope would be a given anyway, that anyone whose children have chicken pox (worst case) or contagious illnesses to please bear us in mind and maybe sit this one out.  Sniffles and colds aren’t so bad by the way, they’re unavoidable.  I’m going to speak to the hospital about to find out more too..

Board games and stories
Board games and stories
Aunty Shan and Harriet
Aunty Shan and Harriet

We also had a visit from Aunty Shannon, Nanna and Grandad Chris today which was nice… Aunty Shannon was climbed all over bless her.  Birthday snuggles all round for Aunty Shan who is 19 on Monday!?

So amongst George’s steroid induced sleepless nights, stubbornness, munchies and roid-rage… and apart from the bloods still being in the air, we’ve had a lovely week with friends and family.  Now these kids can get back to school and Playdays this week, I need a brew that’s at least room temperature!!

 

Fundraising for George’s Garden

Currently feeling very lucky with all our fantastic friends rallying together to help raise funds for making over our back garden.

With summer looming and not many options of places to go with a child with no immune system, we’d been asking for quotes to straighten our garden up.  We wanted to make better use of the space for George to get outside and open it up so that Oliver and Harriet can get onto the park behind within view of the garden.

We also needed to provide easily accessible space for George while his mobility is affected and install some kind of canopy to protect him from the sun (he will be much more sensitive to the sun during chemotherapy).

One of our lovely friends decided to set up a sponsored toddle waddle at Walton Gardens in Warrington for all the babies whose mummies attended my birth classes to raise money for the work on the garden.  This lovely lady has then inspired other friends to get involved with fundraising and donating time and labour to our new project.

Bridge abseil
Bridge abseil

So far we have George’s preschool organising a walk, some of my best friends (who are usually right wimps!) gorge walking and abseiling off a 90ft bridge! our Warrington friends tag-teaming to rip the old garden up and out and donating time and skills to build decking etc.. we’ve got a St George’s Day Toddle, a coffee morning at Warrington Collegiate and our very own children and their friends entering runs, races and more… I have a feeling this list is going to grow!

If you too want to get involved by running for George’s Garden or have your own fundraising idea, do let me know.  If you want to make a small donation directly you can do so via our GoFundMe page here.

Oliver and I will also be joining Team Georgie Roo entering GungHo Manchester – if you want to sponsor us, all donations are gratefully received via our GoFundMe page.

I just want to add that without all my friends behind me, keeping me positive even when things are tough, keeping me sane, I don’t know where i’d be – thank you each and every one of you who have taken the time to help us, contributed to this fund and encouraged me every step of the way.  I love you all very much x