Shhh don’t tell the guests – the surprise wedding!

At diagnosis
At diagnosis

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.

Ian Zippy Lees entertaining the kids
Ian Zippy Lees entertaining the kids

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.

bouncy castle
bouncy castle

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.

The cakes
The cakes

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.

Before the cat was out of the bag
Before the cat was out of the bag

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 😉

Guests arriving
Guests arriving

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 Valentinekeeping us all on our feet and even rapping!?

The ever supportive Lynda of the Joshua Tree charity arrived with her brother, the Rev Gwyn Parry and his wife to mingle and enjoy the day with us.

Amy prepping me in the morning
Amy prepping me in the morning

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.

Fizz!
Fizz!

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.

Harriet and I waiting to be called
Harriet and I waiting to be called

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.

Big arrival
Big arrival

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!

ceremony
ceremony

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.

Group hug
Group hug

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.

Mr Rooza on the bronco
Mr Rooza on the bronco

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 first dance
Our first dance

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

 

George is in Maintenance!

A treat to celebrate maintenance

Bring on the Maintenance!

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.

Nuts
Nuts

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.

Everything covered

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.

Wild
Kids being wild

Living!

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.

Where are we?
Where are we?

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

Fire engine!
Fire engine!

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.

Hold on tight

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.

The crew
The crew

We’re looking forward to the rest of summer 🙂

Keeping going one day at a time

Feeling hot sorting lego
Feeling hot sorting lego

This week has been a tough old week, the toughest so far in terms of George’s mood and well being.  It’s on a different level to the initial shock of your child being diagnosed with leukaemia.  No, this is a different kind of heart break, the kind you might experience when your child is feverish and not themselves, and that 24 hour bug seems to be going on forever and all you want for them is to be themselves again.  Only imagine they’re in so much pain they can’t talk, they can’t drink and you know they want a hug, but they keep pushing you away because they’re angry, they’re sad and you can’t take it away for them.

Then imagine that it’s not for 24 hours, you don’t know when it will end and you’re completely helpless.  That’s the kind of thing we’re talking about this week.  George has a temperature and mucositis, it’s causing ulcers and sores through his gastrointestinal tract from his mouth down to his bottom.  It’s even been affecting his tear ducts so his eyes are sore too.  Imagine those one or two ulcers you might have because you’re feeling a bit run down and times it by 100.  That’s how my baby boy is feeling.  He’s three and dealing with the probably a million times better than I ever would.

looking out onto the new garden
George and Seth looking out onto the new garden

He did pick up a little for a day on Thursday this week and enjoyed having his little mate round to play, Seth, which I’m really glad he had the pleasure of doing.  He was back for a couple of hours, chatting and playing normally. He misses his friends and he misses Playdays.

We’ve tried to appreciate the small ‘normal’ moments at home but have been back and to, to Alder Hey when I followed my gut out of sheer worry about him.  What I do need to point out is that this is a side effect of George’s treatment, not something rarely seen and it’s something the hospital know how to deal with.

Always time for Pip
Always time for Pip

There are things I could Google all day long about what Mucositis can lead to, but i’m just listening to the other parents who’ve helped their children through it and of course the doctors at Alder Hey.  “Barry” the port is in full swing and has currently got three or four extensions to it for fluids, IV antibiotics, paracetamol, saline and a PCA Pump for his morphine.  There’s a little button we can press for an additional boost of morphine prior to George attempting to drink and following him coughing…

This isn’t really something i’d prepared myself for, if I’m honest I was just expecting vomiting and sleepiness but I realise now I was naive and this is the sh*t people are talking about when they say how hard it is.

Bacon cupcakes!?
Bacon cupcakes!?

We’ve had lots of reasons to smile this week around George’s feeling dog rough.  I don’t think i’ve officially had to cook once due to all the little fairies who’ve delivered hot pots, bologneses, casseroles, bought us pizzas and invited us round for fajitas!  We’ve not been short on visitors to keep me sane during the long days i’ve been at my wits end, nor offers of support while we’ve been at hospital.  We even had a delivery from next door of bacon flavoured cupcakes just for George’s savoury tooth!  He has also enjoyed his little lego gifts from friends who’ve made his day – he’s been re-building his sea-plane and caravan in hospital over the past few days 🙂

But never mind the smile on Georgie-Roo’s face, can you imagine mine when 10 bottles of wine arrived in the post this week!?  Obviously i’m ready to neck the lot but have to bear in mind emergency dashes to hospital so we’ll gradually make our way through it bit by bit.  I could do with a button on a PCA for that too but maybe that’d be frowned upon in certain circles :-/

George rigged up to all his pain relief and meds today
George rigged up to all his pain relief and meds today

The wine helps but the community nurse has been a massive saviour when i’ve felt like i’m tipping over the edge with what is normal and what is not.  Plus support from other parents on some of the online groups for children in Oncology.

Oliver and Harriet have been amazing.  It’s a word I over-use I know “amazing” but seriously… they fight most of the time and drive me bonkers, but when push comes to shove and i’m flapping about, Oliver suddenly steps up to help and Harriet will quietly retreat.  I know this isn’t necessarily a positive, but i’m so proud of them… not because they’re the best at maths or brilliant at a particular sport but they’re so emotionally aware and mature in spite of everything.

So with our bank holiday weekend plans to add the finishing touches to our dream garden out of the window… Oliver and Harriet had a nice play with some of our neighbours children when all hell broke loose last night.  Poor Damo’s one chance to let his hair down and go out to watch rugby was scuppered with George’s temp reaching 38 degrees and me having to abandon ship and rush him to hospital.  The awning can wait until we actually need it when Georgie is home… and I can shop for any additional bits online when in hospital tomorrow with George if he’s sleeping.

George and Daddy Facetiming eating noodles
George and Daddy Facetiming eating noodles

Today, running on approximately 3 hours sleep and 1 round of toast, I’ve liaised with the electrician over lights in the garden and took Oliver and Harriet for a bike ride for treats from the shop.  We managed to geg in on a barbecue at our good friends The Appletons on the way home.   We’ve Facetimed Georgie and Daddy at hospital since we’ve got back and it was great to see George managing to swallow some noodles 🙂 he shown us his lego and now the kids are snuggled up watching X-Factor.

Blowing the cobwebs away with the kids
Blowing the cobwebs away with the kids

Totally appreciating my own bed for one night, can’t wait George is well enough to come home and we’re altogether again under one roof, hopefully that will be during the kids school holidays this week x

Friendship, fate and the three musketeers

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.

The little gnome
The little gnome

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.

Great helper
Great helper

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.

Forget me nots
Forget me nots

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.

Lis x

 

 

Oliver – my unsung hero

Tea George?
Tea George?

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!

What?
What?

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.

Play time
Play time

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.

Drawing time
Drawing time

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!”

Giggles
Giggles

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.

Taxi for George
Taxi for George

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 here if 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!

Fingers crossed for no broken bones tomorrow!

Lis x

A message from the Swashbuckle crew!

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

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

Reality check #TeamIsaac

Lisa Rooza
March 27, 2016

 

I’d already typed an essay about our escapades this week, moaning about the three attempts it took to get into George’s new port when George was poorly, moaning about the hospital having no beds and generally feeling sorry for myself because of him being under the weather.

But now everything has changed.  There was a lady who I didn’t know the name of, who had been the first person to hug me, hold me when I received the worst ever news.  I walked in from the doctor telling us George’s diagnosis and she automatically held out her arms because she knew what I was going through.  She told me she understood and I cried into her shoulder.  I knew she understood.  I’d sat watching her, her husband and their little boy, who quite obviously was undergoing treatment, all day and wondered how they could be carrying on with life so normally?.

I felt their little boy, Isaac, was probably about 18 months old and he sat chucking a yoghurt spoon on the floor every time his dad picked it up.  They laughed and chatted and watched CBeebies together.  They were the first people I thought of when we’ve returned to Alder Hey since and I’ve seen other newly diagnosed families sat around in a trance.  I’ve wanted to be that inspirational family to someone else – and it’s bloody hard sometimes!

I saw this family a couple of weeks ago across the Oncology day unit and the Mummy waved and beamed a knowing smile over to me.  If I’m honest, I wanted to run over and thank her but could see she was chatting with other families.

Last night I read devastating news.  That lovely family’s gorgeous baby boy has gained his wings and his fight is over.  Isaac had Acute Lymphoblastic Leukaemia like George.  This disease is vile.

A lit candle
A light for baby Isaac

Suddenly the moaning I was going to share has paled into insignificance… because it’s my moaning at the end of the day, not Georges, he’s happy, he’s forgotten about the shite I’m worrying about and crucially he’s tucked up in bed with us.

Claire and Gaz, you inspired me to be strong from the start of our baby’s diagnosis, I wish I could give you some of that back right now. My heart is breaking for you.

I know that the family had recently been helped by the Anthony Nolan Trust with help to find a matching stem cell donor for little Isaac.  If you’re thinking you want to go one step further in helping children overcome this awful disease, have a look into donating stem cells.  Georgie could be one of those children one day.