Family life with a child on cancer treatment – Maintenance

A new kind of normal

I’ve had a few people highlight that I haven’t posted in a while, asking after us and how George’s chemotherapy is going, so thought I’d give an update.

The children watching the penguins
The children watching the penguins

Things are normal – our new normal anyway, hence the radio silence.  If you do keep up via the Facebook page or on Twitter you’ll have seen the little life updates from Instagram or when I’ve tagged us in Alder Hey.

We enjoyed our trip down south to visit family in the last school holidays and I survived the “beautiful” singing all the way in the car by the kids.  Whipsnade Zoo was great and it was lovely to spend some time with our family there.  The drive home wasn’t so enjoyable late at night trying to navigate alone.  The kids were sleeping and I was diverted off the M6 TWICE back to Warrington!  Anyway, I lived to tell the tale…

Temperature spike during maintenance

George having his obs done
George having his obs done

The following couple of days we were in and out of Alder Hey as George was poorly.  He’d spiked temperatures and needed intravenous antibiotics through his port, plus the usual blood tests and cultures, snot samples and all that.  Imagine someone sticking a tube up your nose to suck out the snot!  The tests came back showing he had 3 viruses that may linger but the hospital were happy he should be able to fight them off with the white blood count/neutrophils he had.  He’s gradually improved since then and thankfully he was over it by the time he was back in school.

Back to school

We’ve been back at school for a couple of weeks now and had Halloween and Bonfire night in between.  We managed to host our usual Halloween party, that got messy and then hid indoors on the 5th November with Sugar the poo away from the noisy fireworks.

Oliver cross country running
Oliver cross country running

George had a couple of emotional days after the first week back crying in school and crying at the gates saying he just wants to go home with Mummy.  Broke my heart…. but we both sucked it up.  The teachers were as lovely as usual encouraging him and talking about what lovely plans they had that day.  The school office called me as soon as I got home to tell me he’d settled so I didn’t spend the day fretting.

Oliver ran for his school in cross country at Walton Gardens last week and has been enjoying playing basketball.  Harriet’s being graded for her first karate belt next week.  She’s still spending some of her time as her alter ego “The Carrot” or pointing her finger up off her forehead pretending to be a unicorn quite a lot.  I must say the finger doesn’t look like a unicorn horn, it looks more like something else that’s a little unsettling as she trots around the playground.  She is also enjoying signing choir (that’s signing and singing!) and will be involved in a few choirs over the Christmas time.  We’re not sick of the Christmas songs already, honest.

Harriet in her Gi at Karate
Harriet in her Gi at Karate

Christmas play

Damien and I were really pleased with the big reveal of what George is lined up to be in his first school Christmas performance.  One for the family album, that he tells me he chose himself – none other than a Christmas Angel Ballerina!  complete with wings and a tutu.  He’s going to look beautiful!!

Telephone maintenance

We had our first telephone maintenance appointment last week which felt bizarre.  We’d gone in to Oncology Daycare at Alder Hey on the Monday for George to have his gripper removed, as he’d been in with temperatures a couple of times over the previous days.  It had been left in in case it needed accessing again to save him having to keep having the needle into Barry (the port).  While we were there George had his bloods taken so that the Doctor could decide what dose of chemo he should change to if need be on the Wednesday.

The call was pretty straight forward apart from me flapping a little over what numbers go where on the sheet.  Ultimately his dose had stayed the same anyway but I had to mark down the information correctly to prove we’re not morons (or pretend we’re not!) and keep on telephone maintenance! no pressure.

We’re back for more blood tests next Wednesday and George will be going in to be checked over the by the doctor again.

Losing the plot

Walkies Sugar Poo!
Walkies Sugar Poo!

I feel like I’m going a little bit crazy at home now all three kids are in school most of the time.  The dog has more walks than most of the dogs on the street added together! half the dog walkers on the park know my life story and I don’t even know their names.  I must spend a fortune on cake and lunching out because I can’t stand my only purpose being housework and the weekly shop.  I know! I know! I shouldn’t complain, I know i’m lucky to be in this position, but I don’t do “nothing” very well.  I’m angry with myself for not throwing myself into decorating and cooking wonderful meals like a good little wife but it’s dull, and it’s not me.

Before anyone starts – I’m already volunteering at school, getting more involved with the PTA and have been quietly setting up a little business in the background.

The anniversary of when I think George’s health started deteriorating last year is upon us already… it was November 2015 when he first started with temperatures and was having antibiotics for tonsilitis – which is quite common in patients who end up being diagnosed with leukaemia.  I can’t believe how affected I am by the thought of Christmas approaching.  Oh I will be trying my very best to enjoy every last second this year! it’s just hard to not reflect on being in Warrington Hospital last year, and all that we / he went through in the build up to his diagnosis.

Things have been seriously shit since last November, the worst thing our family has ever experienced!  From the amount of time the children were passed from pillar to post and how poorly George was from the side effects of his treatment.  I thought that getting to this point with his treatment working, him being well, his hair growing back, him attending school… no wheelchair, no impaired sight, memory loss or any other problems… the fact that he has started to actually read real words in his little school books and he’s a flippin’ fairy ballerina in the sodding Christmas play! I thought I’d be doing the bloody conga into that school playground!  But I’m not.  I just feel scared it will come back.

The unicorn
The unicorn

It’s not the most positive paragraph to end on for now, the way I feel is going to be fairly common amongst parents in my position and I do keep reminding myself that the chances of relapse are pretty low.  For now, I’m going to continue distracting myself, by mithering my friends for brews, eating cake and walking the dog that has a better social life than me.  If all else fails you might find me trotting around like a mythical creature with a finger-horn or taking on the alter ego of a root vegetable.

Lis x

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

 

Hello – starting with George’s Leukaemia diagnosis

George lay on his front smiling

Well, well, well…. I always wanted to write a blog but never imagined in a million years it would be this that gave me a kick up the arse to start it.  Just over 6 weeks ago my 3 year old son, George, was diagnosed with Acute Lymphoblastic Leukaemia.

George’s journey began before Christmas 2015 following a bout of tonsilitis which he seemed to be taking AGES to recover from.  Around 4 weeks after his course of antibitotics had finished, a few things had gradually been noticeable that led me to book a GP appointment – it was nothing major at the time, George has “third child syndrome” where it takes quite a lot for me to take action.  He’d been off his food, had stopped running around with his older brother and sister and generally looked a bit pastey… It was only that he’d developed a limp that made me actually call the doctors.

Luckily for us, our local GP in Warrington was well on the ball and immediately referred us to paediatrics at Warrington Hospital.  It was Christmas and the staff were fab with us, we had a visit from some of the Warrington Wolves players and Father Christmas had visited every day!George_WarringtonWolves

After a couple of weeks of various antibiotics, around 15 Doctors (it was the Christmas period!), Xrays, ultrasounds and an MRI!, a lady Doctor at Warrington put her foot down and managed to get George transferred to Alder Hey Childrens Hospital.

I can’t tell you how emotional I was following the ambulance blue-lighting down the M62, not dangerously I may add! it just always seemed to be on the horizon.  We arrived and were instantly put at ease, with a full explanation of what was going on, why we were in Oncology and would we like a cup of tea 🙂

I was still thinking, “look at all these poor children with cancer” at first, and worried how i’d cope speaking to anyone… since at this stage I just felt sorry for everyone else!? We knew George was going for a Bone Marrow Aspiration the next morning to rule out any thing nasty as far as we knew.  So far, George’s bloods weren’t presenting like someone with cancer, hence being in Warrington Hospital for so long.

George was first on the list to go down to theatre the next morning, so there wasnt much waiting around.   That hour he was in for, felt like the longest hour of my life…. that is until we had to wait for the results, then it was the real deal in terms of being on the edge of your seat – im talking no saliva left, sitting upright like meerkats, waiting for someone, anyone, to give us news.

I cant even remember the exact time, but whenever our Doctor came over to us, she looked as shocked as us and apologised saying “i’m sorry but it is!” I remember saying “it is what!?” and she said “it’s Leukaemia”.  I think I let out a bit of a yelp and Damien wept.  We were led out of the ward then to a side room where I stared at some cups of water wondering whether they were for us or not and listened to the doctor’s voice… but not really listening.  Strange how you respond in these situations.

We were told our baby had Acute Lymphoblastic Leukaemia.  He has cancer.  As upsetting as it was to hear, I hung on the fact that ALL is apparently the most treatable form and has a high cure rate.  That’s all I needed to hear.

georgieWe’re 6 weeks in now, and we’ve learnt so much.  Things about ourselves, our relationships with family and friends, things about childhood cancer and our other two children. Sometimes I feel like my 10 year old, Oliver, is more like 20 these days – he carries George around (cue the “He ain’t Heavy” music) when he needs help and hugs me when I look upset.  My daughter, Harriet, mad as a box of frogs as she is, is keeping everyone up to date on George’s treatment, behaviour and draws diagrams of bones with good cells and bad cells in.

As much has our lives have been thrown into turmoil, I have strange feeling of being complete at the same time.  George, once he’s through this, will be stronger, as will we.  We have challenges and no doubt more tough battles ahead but bring it on, George will take it all in his stride with the strength of his family and friends behind him x