The support for our family is still going strong this week! A team of the kindest (craziest!?) guys are spending three days cycling 400 miles to support a charity that hope to send our family to Lapland to visit Santa.
Rays of Sunshine grant wishes for youngsters suffering serious or life-limiting illnesses and have agreed to grant George a wish in the future to meet the real Father Christmas! Paul Wilson, Gary Cook, Rick Wright and Neil Stokes are setting off this Thursday along with their service driver, Lee Paterson and donating all funds raised to Rays of Sunshine.
The guys have spent the last few months training and raising funds to give to the charity, through injuries and illnesses themselves. I’m still finding it hard to accept everything people are willing to do for us!? We’re very proud of all them, as I’m sure their families are too.
Their efforts have also been featured in the Warrington Guardianand for those who also want to donate, you can visit their JustGiving page here. Unfortunately we won’t be visiting Santa this Christmas, as George’s journey through this only began in January this year. However with at least 3 and a half years of chemotherapy everything that goes with it in the treatment for leukaemia ahead of George, we will hopefully get to accept his wish in the near future.
We feel so lucky to be part of such a supportive community with selfless, caring people wanting to support us through every step of the way. Thank you so much to everyone involved and to all those have been by our sides since this all began.
Tomorrow is the next blood test, consultant appointment and chemo adjustment if necessary at Alder Heyfor George. It flies around doesn’t it! We’re hoping for a weight gain as George’s doctor was concerned with how much he’d lost over the last few weeks. He’s been stuffing his face this week though so I’d be surprised if he has lost any more.
We’re on chicken pox alert at school at the moment as another little one has come out with them, they’re not in George’s class but their sibling is, who hasn’t had them before either. The parents and the school have been fabulous and were well on the ball with it, informing me so that I could liaise with the hospital. The little boy’s Mummy even kept him off school worrying about George, when her son isn’t actually showing symptoms…. just another example of how caring people are. Following a chat with 3B Daycare at Alder Hey we were told that, at this stage, as long as George hasn’t had direct contact with a child with chicken pox, then we should all carry on as normal. At the end of the day chicken pox has a long incubation period of 7 – 21 days and everyone can’t start keeping their children off, nor should we keep George off as it could go on forever!
Chicken pox for a child with leukaemia can be serious due to being imuno-compromised whilst on chemotherapy. However, as long as we’re aware when it’s knocking about, we can keep an eye out for symptoms in George. George isn’t immune to chicken pox as he’s never had them and being in school, there’s a pretty good chance he’ll get them at some point. At the moment, if he came into contact with someone carrying them he’d have antibiotics to help him at home, then if he contracted them he’d be in hospital for around a week to be monitored and given medication. This is a risk we take with him being in school but are confident that it’s better for his all round well being, to be in a school environment, having the chance to develop friendships and grow up with his peers. At this point everyone around him is so well informed and attentive, we’re confident he’s in the right place.
So, if you follow us on the old social media, we’ve not had too bad a few weeks with some nice Autumnal walks with Sugar, viewing high schools for Oliver (argh!?) and cosy nights in with the kids. We have tomorrow’s hospital trip to get out of the way tomorrow hopefully with some positive news, then it’s Oliver’s 11th Birthday on Thursday as well as the lads starting their 400 mile ride. I’ll follow up the blog with news from tomorrow when I can, and if you don’t already follow us elsewhere then you can do on Facebook here, on Twitteror Instagramget on it! Sometimes it’s easier to share a quick photo or note of how we are at hospital than write War & Peace on here 🙂
Good luck to Paul, Gary, Neil and Rick! Don’t get too saddle-sore, thanks to Lee for being their service car driver, just as important for it all to happen, keep safe guys! x
The few weeks following becoming Mr and Mrs Rooza have become one of our all time favourite memories. We’d organised two weeks “Familymoon” in Cornwall with George’s consultant haematologist’s permission. This wasn’t something i’d ever envisaged being able to do during his intense treatment.
We usually camp but decided we’d make life a little easier not having pitch a tent etc by staying in a caravan. We’d stayed at St Ives Bay Holiday Park last year with all our friends so knew it had everything we wanted plus this time, a sea view to wake up to in the morning.
We packed all of George’s chemotherapy and pain relief, high factor sun cream (you can have this prescribed by the Oncology department for anyone who may find that useful), we knew where the nearest paediatric unit was and then where the nearest Oncology unit was too.
Choosing to have “Barry”, the port under the skin, was proving it’s worth as we didn’t have to worry about keeping a line clean, away from sand, sea etc. George was able to enjoy the beach as much as his brother and sister, we’re still finding sand in his ears now to prove it. Another thing that was also really helpful was our pop up beach shelter, twenty quid of Amazon. Sometimes all the running around would be just too much, so it was great for George to be able to crash out of the sun (or typically for the UK, was perfect to get under when it rained!).
Hayle Beach was as beautiful as we remembered, the kids enjoyed boarding down the dunes, building sandcastles and paddling in the shallows. Picnics on the beach each day made saved us a fortune and a couple of beers whilst we were down there made the honeymoon with 3 kids a little more relaxing!
Oliver is less of a paddling in the shallows man, and more of a bodyboarding in the waves kind of guy. Damien and Oliver boarded most days whilst I watched excitedly…. or maybe I sunbathed….
Obviously it poured down on a couple of days, we had to be reminded that this was not the Mediterranean cruise we booked. Being surrounded by sunburnt Northerners wasn’t enough no, some classic Warrington rain was sent our way as a cursory reminder to appreciate the sunny days.
What we saved on eating sandy butties on the beach each day, we basically paid the arcades’ overheads for them to remain open until next season. Harriet spent about fifteen quid “winning” her Catherine and Claire teddies which I suspect had been in the site’s gift shop since the names Catherine and Claire were trendy for young children. Oliver spent most of his time being a lurker, waiting for some poor kid is robbed of their last 2p at the 2p machine… only to jump straight on and make a killing – and what shall we do with 48p’s worth of 2p’s? let’s put them all back in again! Georgie was happy squirting water at duckies or just blatantly buying sweets with his spends and gorging on them.
On another grim weather day we donned our cagoules and hit the local bird of prey sanctuary, Paradise Park, and was pleasantly surprised. It helps that Harriet absolutely loves birds. We avoided taking George into the aviary where Oliver and Harriet fed little parakeet thingies, not only because it’s like a scene from “The Birds” and he’d probably freak out but just in case there was anything that would make him ill. The kids met penguins, owls and there were even flamingos walking about – beats the seagulls as big as dogs that we were used to back at the campsite!
The children flew kites and the big boys enjoyed the surf on the very windy days. Harriet would run like a maniac in the wind and George and I would cuddle up and appreciate our windbreak and beach tent.
We changed it up with some rock pooling at Godrevy on the first week, it wasn’t as successful as last year but just as much of an adventure.
Oliver and Harriet liked running around the rocks and coves while the tide was out and splashing in the clear pools while George would sit with his little net in a rockpool “fishing” like a gnome. Some standard wave jumping as the tide came back in violently before we did the five minute drive back to our site for some tea.
One beautiful evening we walked up to the top of the dunes to watch the sunset with a picnic blanket and a bottle of champagne and glasses. The sky was perfect, it was lovely and still and the ocean was calm. We opened the bottle, let out a little cheer, sipped the froth from the chilled bubbly then promptly had to help Harriet squat in bushes while she went for a p*ss. The kids ran around kicking sand at us, George screamed when he didn’t get his own way and Oliver went missing. You can imagine…. but of course we smiled for the camera anyway and pretended it was hours of romantic bliss rather than the 7 minutes approx.
It wasn’t quite a Royal Carribean Cruise but we did manage to book ourselves on a Mermaid Pleasure Trip in Penzance. The skipper was lovely, he let the children drive the boat, they pulled lobster pots, we saw seals at Seal Cove and got to see St Michaels Mount from the water. What made the day extra special though was the small pod of dolphins that came swimming along side us… The guys on board put a device under the water with a speaker which allowed to listen to the sounds of the dolphins communicating, it was so special and absolutely made our day.
The skipper chatted to George and found out his love of the emergency services. He kindly arranged for us to visit RNLI Penlee Lifeboat station in Newlyn a few days later for us to go aboard their Ivan Ellen lifeboat. Coxwain Patch Harvey, was lovely, taking time to chat to the children about the boat, how it rights itself in 3 seconds if it ever overturns!? showing us the engine room and letting the children sit up at the bridge… it was humbling to learn how many of the local fishermen and people in the community run the lifeboat station voluntarily!? and are on call night and day in shifts… what amazing guys taking time out to help people, risking their own lives, so selfless.
We crabbed in Penzance too but spent most of our time seagull dodging and came away stinking of the bait. Kids enjoyed catching seaweed though!
The second week of our holiday got even better when our good friends arrived with their children! not only was it fresh faces for the kids to play with but there’s only so much of my crap Damo can listen to. The kids were so happy to see each other and it was nice to have a wine buddy for after we’d hit the waves 🙂
There was more dune surfing, fits of laughter, beautiful sunsets, shooting stars and a day trip to Falmouth where we got to see the Red Arrows display! George spent most of it with his hands over his ears as usual.
The holiday was perfect and just what we needed, with the comfort of still being in the UK for George’s sake but still magical and memorable.
This evening George is in hospital with Daddy being checked as he’s spiked a temp for a second time since we’ve been back. We’ve been in for a consultant appointment twice too to have his chemotherapy altered as his white blood count isn’t recovering quite as fast as we’d like. The doctors aren’t concerned and feel he has a lingering virus (he’s had a bad cough for 3 weeks now) so have reduced his chemo to allow his own body to work it’s magic.
George’s next consultant appointment is on his first week at big boys school! I can’t believe we’re at this point already, it was something I couldn’t even compute not so long ago. His first day is going to be particularly poignant in this house, I’m sad he’s not going to be my little buddy at home any more, I’m worried for him like all the other parent’s will be for their babies… but he shouldn’t be having to undergo treatment for cancer, it’s not fair.
We’re hoping the next few years of maintenance will be kind to George and that we can continue to have more happy times as a family than difficult ones. We’re made up we got out 2 weeks familymoon and for now we’re enjoying the last days of the holidays at home together around hospital trips and preparing for all three children going to school… looks like George might even have some wisps of hair for his first day too!
Last week George had a blood test to check whether he was good to move into maintenance and we got the call on the same day to confirm all was well.
On Thursday we had an appointment with one of the Consultant Haematologists, Dr Keenan. He checked George over as he has a little cough and some strange loss of pigment on his skin in patches on his tummy – we’re keeping an eye on this as it’s not something he’s come across before. The main reason for the appointment was to officially move George into the “Maintenance” phase of his treatment.
Maintenance will run in cycles, but essentially is the remainder of the treatment for Acute Lymphoblastic Leukaemia – it’s working on preventing the return of the cancer cells. Some of the chemotherapy that George will receive during this phase will be administered orally by us at home. He’ll still need to go to hospital every fortnight to have blood tests and be seen by a doctor, the doctor can then prescribe the appropriate amount of chemo for the following fortnight and so on.
It doesn’t reach the nuts!
The chemotherapy George has at home (Mercaptopurine…. or chocolate medicine as he calls it!) does not reach his his nuts! So the consultant had to give me a demo on checking his boys bits (on George this is btw!!) which we have to do on a weekly basis… any slight change in size, lumps, bumps or tenderness and we have to take him straight back to hospital. Relapse in boys testes is more common than anywhere else.
Nor does it reach the brain!
The chocolate chemo medicine also doesn’t reach the brain so George will still be going to theatre every three months for the next three years to have intrathecal chemotherapy. This is chemotherapy into his spinal cord via lumbar puncture so that it can treat the central nervous system where the other medicines don’t reach. He’s been having this frequently up until the “break” he had, if you remember reading about him not being allowed to sit up after theatre earlier on when things were quite traumatic.
So we’re feeling pretty confident that everything is covered… a small number of leukaemia cells can survive everything that has been thrown at it up until now but this next few years will hopefully be wiping them out completely. Relapse can happen at any point, but it is more likely to occur the year after the end of treatment – so 2019-2020!? we’ll never be free of the fear that it can return and will be living with the uncertainty for many years.
Relapse doesn’t bear thinking about much further, we’re happy to be where we are right now. The key word in the last paragraph for us is living – living life to the full because you don’t know what’s around the corner. Cliche I know but it’s never meant more.
I asked Dr Keenan what the phase of treatment means for us a family now, and he basically told us go live our lives. There are certain precautions we need to take, but that he, and the rest of the doctors, will do their utmost to allow our little boy lead as “normal” a life as possible. I’m not usually a fan of “normal” but it’s sounding pretty good right now.
Barry, George’s port will still need a flush every month, we’ll still have theatre every few months, doctors appointments and blood tests fortnightly and will still be heading to Alder Hey with temperatures if George falls ill but this is what life is for us.
Maintenance Day 1 – LegoLand Windsor
So to kick the official first day of maintenance off on Friday, we took advantage of Oliver and Harriet being off school for Warrington Walking Day and visited LegoLand Windsor! you all know what a fan of Lego our Georgie is, so he was in his element.
We arrived at Legoland and as directed spoke to Customer Care who gave us 5 QueBot passes to allow us to fast track through every ride. It was fantastic… not only so that we could make the most of a good variety of rides for our all three of the kids but what a lovely touch by them? We knew this meant no standing around in queues with strangers where there’s the risk of George catching something contagious.
The kids were adamant they were going in the splash park regardless of it being pretty chilly when wet in the wind! It’s for times like these we’re glad we have Barry the port and not a wiggly tube on the outside.
George and Daddy went off for a little Lego shopping later which gave us a chance to hit the faster (and wetter!) rides. Oliver and Harriet loved it!
Day 2 – Family stay
We also had the pleasure of staying with family on the way there and back. Thank you to Aaron and Dee for putting us up and putting up with us 🙂 we were outnumbered by little legs and survived!
We even got to visit cousin Teddy’s little school fete which happened to have the local fire service present and a FIRE ENGINE!? could things get any better for Day 2 of Maintenance! George predictably went straight back into his shell but what a lovely guy the fire fighter was, he persevered showing George the jaws of life, buttons to turn the flashing lights on etc. and low and behold since we’ve been home he’s been chatting all about it.
Oliver and Harriet and their little cousin Teddy got stuck in at the fete too, meeting the local police community support officers, playing games and eating lollipops. We finished off our stay with a beautiful lunch on Saturday afternoon at a local village pub. The kids ran wild in the sun, ate well, played on the swings, threw themselves down hills, chased each other, laughed and well….. lived.
So I thought i’d be updating with how we got on today. I’d been psyching myself up, friends had given me a “survival kit” for the car should #pukegate happen again (thank you for that! you know who you are x) and I’d organised for my friend Nic to come with us to hospital for moral support. But, me being a tool and all, I completely misread George’s treatment plan and Day 9 Chemotherapy is actually tomorrow.
Over the last few glorious days Georgie and I managed to start planting up some hanging baskets and his gorgeous “Little Plot” box. I’ll be honest, I haven’t got a clue what i’m doing, I literally watched a YouTube video to find out what to do with a hanging basket!
I made some plant purchases at one of my favourite places in Warrington, The Walton Lea Project. It’s based in the pretty walled gardens at Walton Lea and you can find some absolute treasures there. I love the fact that all their upcycling, crafts and flowers have all been lovingly worked on by adults with learning difficulties, mental health issues, early Alzheimers and mobility issues. The Walton Lea Project is a charity providing supported employment. George’s “Little Plot” was one of the gorgeous upcycling projects made from an old drawer, lovingly painted and lined. It came with a little spade and some wild flower seeds and we even bought some little strawberry plants from them there, that George enjoyed planting in the sun.
I managed to nip into Homebase to buy the actual hanging basket stuff and to look for some containers for the garden (big unveil of the garden in another week or so!) and gathered I’d just ask a member of staff what I could put where. There was a lady stood next to me while I was admiring a Jasmine plant that smelt beautiful and she commented on how lovely it was… I said i’d worry it wouldn’t survive in my hands, I don’t even know what to put in a hanging basket! I told her our garden is going to be a complete blank canvas as we’re having it made over, she mentioned a few names of flowers and carried on with her day.
Further round, as I stressed while trying to get my shopping trolley over a hosepipe that was trailing across the walkway, the lady approached me again to tell me about a plant that would be great in containers in our garden. I told her about George and the children, and why making the garden safe, easy to maintain and pretty meant so much to us now. She stopped in her tracks and told me that she completely understood what we were going through, with a little break in her voice, that she had a garden for her son too.
Sadly, her son’s garden was full of Forget me Nots and Bleeding Hearts for she had lost her little boy to cancer.
I had a huge lump in my throat and just wanted to hug her, she was looking emotional too… It must have been fate for us both to be stood at the Jasmine plant at the same time. I told her all about the wonderful people who’d rallied round to help us and to raise money for us as a family. She said it had restored her faith in humanity.
I don’t know who the lady was, or her little boy’s name but I walked out with the Jasmine plant, Forget me Nots and Bleeding Hearts in my trolley, for our special garden and all the angels that I’ll tell my children about.
I must also add that George has been pretty chipper this week so far and has even been to Playdays! the thoughtful girls there had organised for George to have his little graduation photo done just in case he isn’t well enough to attend later in the month. I’ve not seen his photo but the photographer, Michelle Geritas was a cracker by all accounts and managed to take a few snaps of George and his best friends Casey and Seth. How beautiful are they!?
So we’re off to a wonderful start this week, ready for tomorrow; armed with the survival it, the promise of a beautiful garden and as always the support of our amazing friends.
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.
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.
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.
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.
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.
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.
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.
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.
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…
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.
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!
Here’s a little pic of him with his latest beads, he’s come so far and is still smiling 🙂
Let me tell you a little about my eldest, Oliver. Oliver tends to slip through the net when it comes to reporting the latest… he’s lost his cuteness for an arty photo and has really settled down after 9 years of wreaking havoc. I feel this is the calm before the storm of the teenage years!
He’s always been an absolute pain in the arse, getting up to mischief and generally leaving a trail of destruction behind him. He was the kid that knocked your toddler over in the soft play centre because he was running at a hundred miles an hour. He’s the one that I’ve always held my breath over on parents evening because of his behaviour. He’s the kid that sits tapping his pen just because it annoys you… he has an answer for everything, is sarcastic and is ALWAYS right.
These days he’s quicker than me in more ways than one! he’s still always “right” but now I find myself struggling to get my point across because his “negotiating” has left me dumbstruck.
Since his little brother was diagnosed with Leukaemia in January, it’s felt like Oliver matured overnight. I felt sad for him to have to fear cancer in his little brother. He became sensible and caring, traits i’d not really seen in him before if i’m completely honest. It’s been a sharp life lesson for a young lad, teaching him what the real world can actually have in store – this is real and this what thousands of people deal with every day. We know it’s shite, we wish it wasn’t our Georgie, but when we’re through this, think about what kind of young man Oliver will have become.
It can be p*ssing down and i’ll be struggling to get the shopping from the car and no sooner am I heading back to get George out, Oliver has already undone his car seat and is carrying him in the house. He’ll say “let me get that Mum, you see to George” when he’s upset… he’ll automatically run to comfort George if he’s shouting for me and i’m in the middle of something.
I’ve chatted tonight with Oliver about the upcoming treatment George will be facing whilst George was in the room. I explained that this is the time that he could be sick, lose his hair and sometimes cry because he doesn’t feel well. George heard this and said “I don’t know if i’ll be brave anymore, what if I cry?” and Oliver, the most beautiful big brother sat there and said “You’re the bravest person I know George, it’s ok to cry, it doean’t mean you’re not brave anymore… I cry sometimes too!”
How did this happen? whatever George wants, he knows his big brother has always got his back.
Before we reached our fundraising total for our garden, Oliver wanted get involved. We entered GungHo Manchester with some good friends, not anticipating that we would in fact meet our target before the date even came round. That date is tomorrow! It’s an inflatable obstacle course on Heaton Park and it’s due to pour down.
If you hadn’t sponsored anyone yet and you don’t feel like doing so after reading the above, you have no heart 😉 If you feel you want to drop Oliver a few pennies, you can do so hereif you want to… I’m aware most of our friends have already sponsored so just catching anyone that hadn’t got round to it yet!
Fundraising aside, I couldn’t be prouder of Oliver and all that he’s achieving in everything that he does. He’s a bright lad and is the one i’m relying on to pay my care home fees… so he better keep it up!
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!.
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.
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.
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.
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.
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.
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 Gardensfor allowing us to use the lawn and gardens, The Warrington Guardian, Wire FMandHeart Radiofor 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.
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.
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.
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.
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 🙂
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
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.
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?
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.
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>
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).
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..
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!!