It’s been a long time since I last posted – but take it from me, no news is good news! George’s bloods have maintained really well over the past months with all our hospital visits being routine only. He’s still enjoying going to school and his daily chemo and trips to theatre for spinal chemo are just part of our routine now.
This time last year Make a Wish Foundation confirmed they wanted to grant George a wish. At the time we weren’t ready to accept their offer due to George still receiving very intense chemotherapy and still being too poorly. The lovely volunteers from Make a Wish had come out to our house to chat to George about his wishes which included an ice cream off the ice cream van and to visit the local fire station….! the guys from Make a Wish giggled with us and said they often get this kind of request but really try to make it a once in a lifetime experience for the little ones.
They asked George some questions and through water parks, ice cream, santa, snow, Lego, slides, fire engines and aeroplanes, they came up with three wishes and left to speak to their head office about which one they could make work. Not long after, we received a letter confirming they’d like to send George on an aeroplane to a sunny destination where he can go on water slides and eat ice cream to his hearts content.
It was an emotional time and whilst still facing a few hurdles I don’t think any of us could really imagine being in a position to leave the country. We postponed his wish until 2017 so that we could gauge what life in “maintenance” would be like for us.
And so here we are…. I opened the full itinerary this week from George’s Wish pack and had a little cry – firstly at just how personal and special they’ve made it, and secondly with relief. Relief of how far we’ve come and that he’s so well, we’re actually comfortable with going!
I’ve had to scrape the kids off the ceiling this evening to get them to sleep as we head to Portugal tomorrow morning (if there are any thieves reading this, my house will occupied, I have eyes everywhere and we have a guard cockerpoo who will eat you for her breakfast).
I’ll be honest I’ve had moments of guilt at times, and even considered not sharing our positive news. I felt like we shouldn’t be accepting this at all while George is functioning so well at the moment. But then I look at all his beads of courage, every one of them representing needles, anaesthetic, doses of chemotherapy, port access, hospital stays, steroids, scans, tests and more… groups of colours or shapes of beads that I remember are from the times that I never want to visit again – the ambulance, when the pain relief wasn’t working, when I sat in my living room questioning whether he could breathe properly, feeling scared and isolated and more recently the moment relapse was being investigated…. I can’t even put into words how that really felt. What I can say though is it’s all more than anyone should have to endure in a lifetime, never mind a little boy in the space of a year.
So after all my baby has been through, he deserves this, we all do. His Beads of Courage are going to continue to grow for another couple of years yet – so we’re off to make a little boy’s wish come true – and we will all enjoy every last minute… wouldn’t you?
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.
Thank you to our friends who as per usual picked me up, gave support, provided food and even offered Christmas dinner!
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.
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.
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.
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?
We’ve had stints in hospital over the past few months, treatment is ongoing and George is doing really well at the moment. Parents evening confirmed he’s shining as brightly as everyone else. By the sounds of things, receiving daily chemotherapy doesn’t seem to be affecting school life for him too much other than his low immunity.
George goes into theatre under general anaestethic next week for spinal chemotherapy to be administered via lumbar puncture. We were lucky in that the doctor allowed us to adjust his schedule to bring the procedure forward, otherwise he was booked in for this on December 28th…
Here’s a dull fact for you. Since my remotely-stable adult life began, I’ve collected Christmas decorations from nice places I’ve visited. I’ve got the baubles for the years the kids were born plus festive ornaments from various holidays and special places we’ve been. I like to decorate the tree with the kids and tell them the stories behind each one.
Bear in mind I have the three children, and we all know how kids like a homemade decoration! be it a creepy looking Santa or Rudolph the red nosed turd with sticks in, it wouldn’t be Christmas without some indistinguishable handmade creations coming home from school.
Over the years, in a tangle of Christmas lights, I’ve told the deep and meaningful stories behind our mismatched decs, and cooed over the cute homemade creepy angels. Then discreetly shoved them deep into the Christmas tree out of sight so not to clash with Christmas colour scheme. Ho ho ho!
The Shitmas Tree
Well this year, as we all know, is a very different Christmas for our family. This year we had a sharp reminder how we should be embracing every dam minute with our children, and proudly displaying every ugly decoration they’ve lovingly created. I’ve bought a little tree that sits in the window, proudly dressed in all the decorations the kids have ever made and all the baubles I’ve collected from our travels… the unique little tree tells a story in itself. This year we have our Shitmas tree!
Now I’m not saying the tree or it’s decs are shite. The collective noun for lots of random things where I come from is ‘shit’. “Get your shit together” “pick all that shit up off the floor”… and so our Shitmas tree has been born.
The L word
Life has thrown some huge challenges at us this year, it began unfolding last Christmas with George falling ill and subsequently being diagnosed with Leukaemia. Followers of my blog from back in the beginning will have witnessed what a roller coaster it has been.
Like many people who receive a cancer diagnosis, battling through can be a huge awakening for many. It’s understandable what a change the diagnosis makes to your outlook on life, at the end of the day, it feels like a second chance has been given. Certainly for us with a childhood cancer diagnosis, our perspective has been completely altered – we know what real fear is and anything else just seems like nothing to really get in a tizz about.
I have come to realise that without life challenges, you never really know what you’re capable of – as an individual, or as a family unit. Of course, never in a million years would I have wanted this lesson to have been learnt through my children’s suffering but alas, this is the card we were dealt. Now I’m not going to get all philosophical on you, or worse still start posting crap memes, I just want to share what I’ve learnt about life in the past 12 months.
Lessons this year:
I’ve learnt that children are bloody resilient I can tell you now George will be itching to get back to school with his friends following theatre next week. I however will need to lie down afterwards!
I learnt that there are always people with a bigger struggle than me Every day i’m reminded that so far we’ve gotten off lightly. Yes, in comparison to Gertrude and her child with a snotty nose, we have had it hard, but honestly things could be much more challenging. We hear of, and follow, fellow oncology children whose treatment isn’t working, or where the bastard cancer has come back…. every couple of weeks there’s another.
I learnt what true friendship is. It’s someone holding your hand walking around Sainsbury’s the day before Christmas Eve to make sure you have some kind of Christmas dinner. It’s coming home from the oncology ward where your child is a patient to find your friends cleaning your house, your neighbours delivering Chinese food, and there’s a bottle of wine in a mop bucket. It’s people travelling out of their way, when they have their own families, jobs to get to, just to come and see if you and your child are ok. It’s company, chats and laughter in the face of adversity. It’s knowing your other children are completely happy and well looked after in the hands of someone else.
I learnt that I’m doing a pretty good job of parenting. I manage to feed them, get them to school, encourage them and I try to make sure that their emotional well being is my priority – not having the latest technology, the most expensive trainers… but that stuff inside that you can’t pay for is looked after. I learnt that it bothers my children more if I can’t collect them from school, or tuck them in bed at night more than anything else, because all they need is to feel loved.
I learnt what community spirit is. Without the challenges we’ve faced this year, how would we have known what beautiful hearts we’re surrounded by in our local community. It provides great comfort knowing we’re a part of it.
I learnt it’s best to hide some people’s profiles on social media rather than punching them in the face. Some people are shallow, some people are greedy, selfish, ignorant to the world… we can’t all be the same but we can ‘hide’ their profiles so not to be bombarded with their ‘shit’ day in day out.
I learnt that there are so many more kind people out there than mean people. Seriously, it’s part of our culture to assume everyone else is an arse, however through experience, this is not the case. Most people are decent.
I learnt that nurses do not get paid enough. Comforting myself and my son in the middle of the night, so many thankless tasks and skilled procedures…. these people deserve to be the highest salaries in the country.
I learnt more about my (now) husband this year than in all the years previously added together. And not in a bad way! Nothing like a testing time to bring you together with a new found respect for one another.
I learnt to smile and laugh with other parents on a children’s oncology ward. Who’d have thought it?
Cancer doesn’t choose Everyone is equal. There’s travelling families, families who don’t speak a word of English, families who clearly don’t have a pot to piss in and those who look like they’re shitting money – but none of it is relevant.
I learnt to be brave. Not much more I need to say about that.
There’s more I could add but it’ starting to feel like i’m in therapy!
Get the tissues
So back to the Shitmas tree… given all of the above, as well as our decoration marking the year we became Mr & Mrs Rooza, the most poignant decorations for us to reflect on there are George’s Beads of Courage. They loop the tree twice and are probably going to be double the length by next Christmas with the treatment that lies ahead. I’ve also added a shooting star decoration which we’re calling the ‘wishing star’… it’s for all of our little oncology friends who are putting up their fight, who still have some tough times ahead and their families that are in our thoughts.
Proudly on the front of the tree are some Angel Wings. These are to remind us of the children we’ve met, and their mummies and daddies who are without them this Christmas…
This year will be our best Christmas ever, we’re stronger, we appreciate the time we have together. We’ll be eating whatever food we concoct without any meticulous planning, the kids will receive the gifts we can afford and keeping out of Alder Hey will be a bonus! I will NOT being doing stress….
I hope you all have some form of Shitmas in your home this Christmas, if not a tree, I hope the sentiment is there anyway.
Just in case you were wondering if we all sing carols and hold hands of an evening now here’s a reality check –
Damien is currently sat stitching tinsel onto George’s Angel Fairy Ballerina costume and it’s 10pm, the night before it’s due in.
I won’t lie, as well as the shitmas tree I still have a 7ft Christmas tree in the other room with a <patronising tone> colour-scheme
The dog released it’s anal glands the other day after getting its head stuck in a plant pot holder and the house still smells of fish.
Sugar had her uterus removed yesterday and is walking around in a babygro to stop her chewing her stitches. It requires me to undo her arse buttons every time she needs to go to the toilet. About a hundred times a day.
Merry Christmas one and all.
Note: I know a few of our friends follow All about Erin and helped fundraise for her to get to America for life-saving treatment. We’re also supporting Jenson’s Journey, another little boy from Warrington who has leukaemia now after battling lymphoma over the last few years… so unfair, I know his family would appreciate your support – you can like his page here.
Last week George officially moved on to a part of maintenance that allows us to spend less time at the hospital. We still have to visit just as much as he still needs his blood tests, but we don’t need to hang around as much for consultant appointments. Appointments with the doctor are still fortnightly but we now have every other appointment over the phone. We discuss George’s blood test results, how he’s been in himself and they then tell us what chemo dose to adjust to…. feels like a lot of responsibility but really, we’re writing on a document what the new dose is, and following that. I believe this isn’t something that’s available to every family (before any oncology friends/followers wonder what’s going on!), it depends on diagnosis, treatment and the stage your little one is at, I’m also not sure it’s something that’s offered at every hospital either.
George’s “good” cells are doing well at the moment so Dr Keenan increased his chemotherapy dose again. They need to be suppressed a little (with chemo) to make sure any leukaemia cells don’t have a chance to multiply.
Everything else is the same with treatment with regards to going to hospital when his temperature gets to 38 degrees, he still needs his port flushing monthly, has theatre every 12 weeks for spinal chemo and at the end of the day, if there’s anything we’re concerned about, we go back to fortnightly doctors assessments or drop everything and go if it’s serious!
It’s the end of the George’s first school term, Harriet’s first term in Year 4 and Oliver’s last ever school year in a primary school! Treatment and appointments have only really taken George out of school for a total of 2 days as we’ve managed to get him back in for a half day after his appointments. There’s been a week’s worth of a medicine he had to take as there was a suspected chicken pox outbreak but other than that, he’s not been sent home ONCE since starting in reception… he’s not had any temperatures during school time (we’ve had a couple of weekend visits) so we couldn’t have hoped for a better start to big school for Georgie-Roo.
Just as we managed to get into the swing of juggling hospital visits, homework, spellings, reading, after school clubs and classes etc for all three kids, we had the pleasure of George’s class dog-teddy, Doodle, coming home for the weekend. Those with kids who’ve experienced a class teddy before will understand what a joy that is! And for added pressure, we were the first to have Doodle this year so had to set the precedent…. you’re supposed to record/photograph your weekend’s adventures, people take him on their holidays, he’s been to Lapland in previous years for God’s sake! How were we going to make a weekend in pjs scratching our arses look like an educational adventure?!
Well…. we didn’t! but luckily for Doodle, he wasn’t due back in until the Wednesday and George was due at Alder Hey the same day. So off we went badgering every member of staff we dealt with in Oncology for a photo. Thank you to the lovely team for being so photogenic 🙂 you know you’ve made it in life when you feature in the Rooza blog 😉
It’s now half term and I won’t know what’s hit me with all three of the little loves around. We’ve got lots to celebrate as all three of them are doing great at school… it’s also D-Day for the final high school submission for Oliver, who we now know passed a grammar school entrance exam – you think choosing a primary school is a challenge? wait til you’re up to high school choices with over-subscription, catchments and feeder schools to deal with <insert arrrggghhhh face here>.
We’re kicking off half term, leaving Daddy and Sugar behind to visit our cousins in St Albans and hopefully will hit the zoo. Wish me luck for tomorrow on the M6 with a gang of kids whose current favourite pass time is worse than them all arguing! They sing out of tune HYMNS full pelt together!
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
Just a quick one tonight to let everyone know that last Wednesday’s hospital trip was okay. The blood counts that were concerning us have now really picked up, but to the point that they’re too high so the chemo has been increased hopefully just enough to get the counts to the ideal point.
George bowled us over with his courage and bravery from being nil by mouth, having “Barry” accessed with the gripper to going under general anaesthetic and coming round again without a tear. I’ve got a Vlog to upload of that day which I’ll put up later in the week.
He had his numbing cream on before we left home and wasn’t allowed anything to eat while Oliver and Harriet sat eating their breakfasts. Daddy took George to hospital while I gave Sugar and quick sprint around the park and took Oliver and Harriet to school. I must be honest, I had another wobble on the way to hospital as there was a bloody ambulance on the M62 blue lighting all the way. It took me back to 5th January this year when I had to follow the ambulance with my own son in it to Alder Hey the day before he was diagnosed.
I made it to the hospital just in time for George going into his consultant. It was a relief to hear that his neutrophil count had picked up, they were just higher than the doctor would like this time so the chemo has been increased now to bring them down again. The doctor was a little concerned at George’s weight loss as he’s lost 1.5kg in two weeks, that’s quite a lot for a little person. It’s been put down to the fact that he’s started school and is much more active. I have had a chat with his teacher since to double check he is actually eating his lunch which she assures me he is, he’s a great little eater. The concern will be if he’s lost weight again, although I’m not sure what it means for him if he has… just another waiting game.
So following the clinic meeting with the consultant, we went through the motions that we’re all now prepared for. Karyn, the lovely nurse who has never missed “Barry” with the gripper was on, so that was really straight forward and relaxed. We were called to the theatre waiting room where George watched Toy Story on the TV then blew me a kiss goodbye, and off he went for his sleep and lumbar puncture for spinal chemotherapy. He has this spinal chemo because the oral chemotherapy that we give him at home doesn’t reach the spinal cord and fluid around the brain. Leukaemia cells can travel into the fluid that surrounds the spine and brain, so during the maintenance phase, he has to have this procedure via lumbar puncture every 12 weeks.
After his theatre trip, he was wheeled back up to the ward, staying lay flat as directed for about an hour. He was absolutely ravenous so ate half of my butties before his own picnic arrived along with his special request of chocolate ice cream! The kitchen really look after them.
George had been really looking forward to going to theatre because A. he got to have a sleep and B. he gets a present for being brave. Mummy hadn’t been very organised so he got to choose which Transformer he wanted from his bed on my phone that day. Thank you Amazon Prime, Optimus Prime arrived the next day 🙂
So all is good in the hood at the moment, we’re back at Alder Hey again on 5th October all being well, so we’d better get fattening George up in the meantime!
Georgie was straight back to school on Thursday and on Friday I had another little emotional moment, but for a lovely reason, he came out of school with a Character Award for Courage… for joining in with a dance lesson even though he wasn’t sure he’d like it! Bless him, cracks me up.
Just another quick THANK YOU to our lovely neighbour Laura (not Ian, he can’t be arsed reading the blog..I’ll Vlog another time!), for having Sugar Poo over for doggy play dates with Teddy their sausage dog while we’re at Alder Hey. You’re a star! x
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!
Well where do I start… eight months ago we were rocked by the news that our baby boy had cancer. Nothing else mattered at the time but loving and supporting all three children through what was plainly the most difficult thing we’ve ever had to deal with.
It felt like the shittiest card to have been dealt but we got on with it. We took each day as it came, each hospital visit, side effect from chemotherapy, emotional outburst from one of the kids and we held it together as best we could.
Our previous plans for a wedding and honeymoon paled into insignificance compared to this new turning our lives had taken. Not only did it just not matter so much, but we blatantly couldn’t afford it with less income since I gave up work to be on hand for George’s (and Oliver and Harriet’s!) care.
Months passed, hard, emotional and testing as George’s treatment has been, we kept as positive as we could and decided to plan something fun for the kids on the day we had originally planned on marrying. We didn’t want the day to come and go with sadness, plus we wanted to thank all of our friends and family who had been there for us through thick and thin.
The Black Swan in Rixton confirmed they would love to support and host “Roozafest” for us, they loved our idea and we set about planning the Fun Day, together with Stuart, the manager. I was thinking the outdoors, bunting, cakes, bouncy castle for the kids and balloons, a bit of a fete vibe going on.
All of our guests were told to bake a cake and bring it along, we were having a “Bake Off” competition that the children were going to judge. We had in mind that we’d probably do a speech and little toast to everyone at some point too.
I can’t remember the exact moment we decided to add in a sneaky surprise but I know it was before George’s birthday… he had a stint in hospital around the time and I’d started to wobble about the whole idea. What if he was too ill!?
Don’t get me wrong there were times I worried about other things, the weather, guests not showing, upsetting people…. but then I had a word with myself, we had no control over those things, so I began enjoying organising bits and pieces around George’s treatment and everything going on at school for Oliver and Harriet.
The Black Swan, Rixton was out of this world for support, from the offset the manager, Stuart, took on most of the organising which left me free to concentrate on George’s hospital trips. I turned up the day before Roozafest frantic about the torrential downpours forecast and Stuart reassured me that they’d got a back up plan in the form of a marquee! something they’d sorted out of the goodness of their hearts as we were planning on just using the field… all of the staff were super supportive and so discrete.
Laura Linley of Linleys Cake and Party shop, a mummy from the kid’s school and friend, helped sort balloons, bunting and was there to bounce ideas off… she also created our surprise bake off entry 😉
So on a rather wet 28th July, at 2pm, our guests began to arrive. Ian Zippy Lees entertained the children teaching circus skills for the first hour and then a bouncy castle arrived. Harriet was barefoot in her gorgeous dress in the rain having the time of her life.
The kids took over the play area and the adults huddled under the shelters and in the marquee at times when it poured while the music played – thank you to DJ Lee Valentine, keeping us all on our feet and even rapping!?
The ever supportive Lynda of the Joshua Treecharity arrived with her brother, the Rev Gwyn Parry and his wife to mingle and enjoy the day with us.
I was suspiciously glamorous on the day thanks to my friend and hairdresser, Amy Scott, who took time out of her own diary to give me a trial and then put my hair up at the crack on the morning. The girls at Akira in Padgate, who also helped make the build up to the day special, were so lovely! My nails and make up were perfect and had a great time coming in for a pampering.
So after welcoming most of our guests to the party and a couple of glasses of dutch courage later, our plans came together. Stuart got everyone’s attention to gather in the marquee for Oliver was about to read a poem and announce the winner of the bake off. Harriet and I nipped off without anyone noticing with my good friend, Kath, chief dress fastener, as I needed a quick costume change.
Kath bolted as soon as her job was done and I paced anxiously in my dress up in my room in the hotel with the windows open listening to Oliver’s voice over the PA system – emotional wasn’t the word and it felt even worse not being down there with him! Harriet was happily skipping around the room on another planet while I necked a glass of prosecco and tried to fan some cool air from the open window.
Oliver’s poem had gone from a thank you poem, to announcing the winner of the “bake off” to “there’s just one thing I forgot to mention, we’ve got another cake that will grab your attention” cue the gorgeous wedding cake making an appearance and Oliver telling everyone they’re actually at a wedding. I heard the roar of cheering and applause and had a little sob knowing this is it!
I must have walked out onto the landing of the hotel twice being impatient only to be told they’re not ready yet… I remember thinking Oliver finished his poem ages ago, what’s the hold up!? What I didn’t realise was that The Black Swan had organised flowers, illuminated lighting and dressed the marquee while I was upstairs… they got our guests involved reorganising the place and making it pretty.
I walked downstairs and some of their lovely staff helped lift my dress off the grass to the start of the red carpet when our wedding song began “Tenerife Sea” by Ed Sheeran. I had no saliva left at this point as Harriet marched in front with her beautiful flowers (courtesy of 2lips in Stockton Heath). Our guests were all teary and smiling as I passed them and I got about half way and had to cry myself too… I’d made eye contact with too many people I cared about. Damien, his best man Haynesy and the boys all looked dapper in their newly attached bow ties it suddenly felt about 100 degrees!
Rev Gwyn Parry was brilliant, the Order of Service he organised worked perfectly for us, incorporating our own vows and bringing the children into our prayer at the end – thank you so much for taking time out of your own schedule to make our day so special.
Following the ceremony there was obviously a lot of cheeky smiles, tears and long embraces. The BBQ opened, the children were happy, the unpredictable weather became part of the fun and the bucking bronco arrived! – what else do you want at your wedding?!
The rest of the evening involved Mr Rooza’s speech, the first dance, a lot of laughter, fizz and feral kids.
Our wedding, because of the kind hearts of others, didn’t break the bank. We could never have had a such a special, romantic and meaningful day even if we spent all the money in the world on it. Thank you to all of those involved in making our day perfect, for organising, attending and wishing us well since…
Our son’s leukaemia diagnosis has brought us all closer, we’re grateful we are able to share such special moments with him and continue to live our lives to the fullest we can. Thank you to the handful of friends who helped us pull this off, Oliver for your super confident reading, Harriet for being the barefoot free spirit you are and thank you Georgie for teaching us how to be brave and reminding us what love really is xx
This week George was in Alder Hey Children’s Hospital for the first of his theatre trips of the Maintenance phase of his treatment. He was in having intrathecal chemotherapy which is chemo via lumbar puncture into his spinal cord. This is what he’ll have every 12 weeks for the next few years as part of his treatment for Acute Lymphoblastic Leukaemia.
I shared a video via our Facebook page of him playing and trotting around 3B Day Care whilst playing with his little aeroplane that he’d chosen from the “bravery box”. He’d been nil by mouth since the night before and wasn’t able to have a drink, he’d been cool-as having Barry, his port, accessed, and was waiting at that point to be called to the theatre waiting room. Had it been me waiting to go to theatre in his circumstances, I’d have probably had my head in my hands and no saliva left!
It was quite a poignant moment for us, given 6 months ago we’d only just learnt of George’s leukaemia diagnosis and knew little of what lay ahead. All those times George would have completely had enough, crying and kicking off, but the poking and prodding had to continue. The stress of administering anaesthetic , pre-meds to calm him, having to stay lay flat after theatre for an HOUR!… the lovely staff (and other parents) trying to reassure us that one day, he’d be ok with it and that they’d seen it all before. I couldn’t ever believe that any of it would be “normal” as I avoided eye contact with people for fear of I, myself, having a melt down too…
Now look where we are, I know it’s not always going to be completely smooth but George is so happy to go to hospital. Everyone knows who he is and shouts his name as they walk past while King George gives them the royal wave. He knows the drill, he loves the nurses, he plays with their equipment and says he wants to be a doctor.
When George was first diagnosed there was another family on the ward with us whose daughter had also only recently been diagnosed with ALL (Acute Lymphoblastic Leukaemia). Their little girl was experiencing some rough side effects and I remember talking to them and being so frightened about the future. The thought of being in maintenance and things being more straightforward seemed ridiculous to even consider.
On Wednesday when George was in hospital for a blood test, we spoke to Piper and her mum, we were laughing, smiling and celebrating as they’ve also moved into maintenance…. I’m sure there was even some running man dancing. I remember looking at people like us, just after George’s diagnosis, when things were hard, and thinking how could possibly be laughing!? it’s funny how things change.
On Thursday, I also popped in to visit little Theo’s mummy, he has been in hospital, in isolation, for months so thought she might fancy a Costa. I couldn’t stick around as I was waiting to be called to get George from recovery but his lovely Mummy passed me a gift for George’s birthday. He enjoyed opening it once he’d come round, thank you so much Natalie – what a thoughtful gesture, he’s worn his George Pig top this weekend.
We were also sat with Erin (the little girl we’ve met who has benefit from a Little Princess Trust wig) on Wednesday and she was in theatre at the same time on Thursday too. It was nice to chat with her mum and to hopefully be able offer her some comfort as we move forward as Erin was diagnosed more recently. I told her about the 19 young girls from our children’s school and the locality, that her photo inspired to donate their hair to The Little Princess Trust. Erin and her mum thinks it’s fantastic!
Some of the girls have already had their hair cut and are looking great 🙂 as is the fundraising! we’ve smashed the target and not even half of the girls have had their hair cut yet. We have the local newspaper coming to photograph our little heroes all together this week once they’re done. Harriet’s hair chop is this Tuesday, she can’t wait.
I overheard her in the bath with George earlier talking about how he’s lucky he doesn’t have to wash his hair at the moment. She’s so lovely though, she told him not to worry though because it’s going to come back one day. She also sat telling him that she’s having hers cut off for little girls like him this week. Harriet she wants to make them feel happy again – my heart could burst with pride.
Another proud Mum moment was Saturday when l got to watch Oliver play in his first basketball match for The Eagles. He was great, given he’d never played before, he charged straight in without hesitation amongst the opposition. The other team had quite a few high level players but that didn’t phase him at all, he kept getting the ball and generally made the game more difficult for them. It’s great he’s got something for himself that myself and his dad can take him out to. He was too cool for school not posing for a photo!
George was absolutely made up this week as well – Thank you to our lovely neighbours, the Tsangs, and their family for George’s really generous gift. The family had done some fundraising through their business and all put in to buy George a battery operated digger, some big Lego storage containers in the shape of Lego of course and a fire engine tent. He’s one very lucky boy to have you all as friends, as am I.
It’s the end of school year this week coming for Oliver and Harriet, a bit of an emotional one for Harriet as well with her teacher leaving. We have George’s graduation tomorrow and a visit from George’s teacher. I can’t believe we won’t have the comfort blanket of Playdays anymore 🙁 gifts for the teachers just don’t seem enough to signify how much they all mean to George and us as a family. I’ve looked through George’s keyworker file that details his journey since he started there. It’s really sad to see the photos from last year when he’s quite obviously poorly but we didn’t realise. Then the photos as he changes throughout his cancer treatment, i’m so glad we kept up with attending preschool, I wouldn’t have felt as confident as I do now about him starting school without them.
Prepare for an emotional post as we get the kids sorted for school this coming September!
So we’ve got lots going on, we’re excited for what the summer will bring and feel elated to be able actually make plans to get away for a break in the UK.