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?
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
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
In March we started fundraising for our garden project to help make life a little easier for us and the children whilst George is undergoing treatment for leukaemia. I blogged about it back then, about how our old garden was a bit unkempt and swampy, some of the fences were on their way out and the space wasn’t really being made the most of.
The response was amazing, our target was blown out of the water
enabling us to buy the very best materials and add finishing touches we’d never imagined! All this was possible because of the love and generosity of our/George’s followers and supporters, friends and family. Whether you took part in an event, a challenge, shared our story, donated time, people power or money, the garden has had a complete overhaul and we love every bit of it.
I’ve included as many pictures as I’ve built up over the weeks and will outline what your money and efforts have contributed towards.
The garden has been raised to the same level as the step from our house so we no longer have an issue with flooding. Given the recent huge downpours it’s been great to not have to avoid going outside. George also doesn’t struggle with access either now 🙂
Decking – love it, looks great, easy to clean, no difficult steps for George to negotiate when his medication gives him sore joints.
Some fence panels replaced to match others in places where they were falling through or rotting.
Newly installed stable-door-gate allowing easy access to the park behind us. We now have the ability to watch the older children and make sure they are safe whilst George is in the garden. It also keeps the local doggies out when the kids remember to close it!! I found a chocolate lab in my kitchen and it’s shitzu mate running circles around the garden last week.
We now have garden furniture! it’s been nice to sit outside in the milder weather whilst the kids have played. There’s loads of room for the whole gang, comfortable and modular, so we can change the layout as necessary.
We also have a decent dining set, with cushions that is adjustable to seat 10 people if need be. Al fresco dining all the way!
Our artificial grass is lush! No mud, no dirt, no weeds, no mowing! The kids roll around on it and picnic on it… best investment.
Our pots, plants and flowers have come on wonderfully. The kids enjoyed getting involved planting (as did my friend Kath who seems to be claiming all the glory for their beauty and success) and I’ve found it really therapeutic looking after them… call me Charlie Dimmock. In fact. Don’t. Damien’s surprised they are still alive of course!
We’ve had lighting installed allowing us to enjoy the garden right into the night if we’re ever hosting or the kids are having a late one. It looks pretty impressive in the dark, my Nanna would have said “it looks like bloody Blackpool illuminations out here!?” All LED though so there won’t be a power cut across Woolston every time we switch them on.
I chose a funky grey and yellow awning and love it! Not only does it protect George from the sun while he’s particularly sensitive during chemotherapy treatment, but it’s also waterproof so we’ve been able to sit out in the rain too. Very handy since it rains about 80% of the time. It’s like an extension to the house while it’s mild enough to leave the patio doors open at the moment.
We bought a few extras which have helped complete our new living space – a basketball hoop, chalkboard, swing ball (a nostalgic addition!), birdy feeders and we had a tap fitted outside which has mainly been used for water fights!
We’ve had a day at home today while George didn’t have much energy. It’s likely I would have made do with the old garden and encouraged George outside but wouldn’t have lasted long. Instead, we had a nosey out of the gate when the big tractor came to cut the grass, George has watered the plants with the hose while I enjoyed a cup of tea on the outside sofa, then we read stories out there too. Oliver came home from school and played basketball, then there was a mass “Power Rangers” brawl out on the grass when Daddy got home from work. We all had tea Al Fresco – sausage,
mash and veg, not quite Nigella yet…
All these positive, wonderful times are possible now, whenever we want. We’re excited to enjoy the rest of summer with friends who visit and just be able to chill on the tough days.
From the bottom of my heart thank you for helping bring a smile to our whole family’s faces, this garden has literally changed our lives for the better through the biggest challenge we’ve ever faced.
We recently found out about The Joshua Tree – a wonderful charity who support families affected by childhood cancer. They set up 10 years ago when their little boy, Joshua, was also diagnosed with Acute Lymphoblastic Leukaemia (like George).
So far they have provided us with emotional support through 1-2-1 visits at home and also invited us to their family days in Northwich, Cheshire. It was felt really beneficial to be around other families who are experiencing the same challenges as and no doubt emotions as us.
Oliver made a friend the same age as him who is now in the maintenance phase of his treatment. He’s a lovely boy who Oliver is looking forward to seeing again next time. It must be really comforting for Oliver to see his new friend leading a normal, happy life. I’ve felt Oliver has been particularly worried about George’s diagnosis.
Harriet was in her element being crafty, creating a Mother’s Day card for me and both the older children got stuck in baking too.
There was even a Lego Police Helicopter there that George homed straight in on. He loves Lego and the emergency services 🙂
I think Damien having the chance to chat to other Dad’s was really helpful. I love a good chat wherever I am but Damien’s not one to walk up to someone and start a conversation – the lovely Lynda from the Joshua Tree was great at introducing families to each other. I got talking to a few other mums whose children are also being cared for by Alder Hey so found out a few tips and about support groups I was previously unaware of.
All in all a lovely positive day out for all of us 🙂