2016 what a corker! One leukaemia diagnosis and a million amazing moments

Quick Update: I’ll keep it brief!

Jurgen Klopp popped in for a visit

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.

Tickles off our lovely nurse Mary

Thank you to our friends who as per usual picked me up, gave support, provided food and even offered Christmas dinner!

2016 has been a corker hasn’t it?  Certainly one we won’t forget in a hurry, and not all for negative reasons.  Yes childhood cancer suddenly became a huge part of our life, but we’ve watched George fight and Oliver and Harriet have filled us with pride. The positives have continued all year, our friends and community fundraised for our very special garden, George’s bedroom got a makeover and our situation made us appreciate our amazing friends, there was the wedding that no one knew they were attending, and our very special familymoon.  We gained Sugar-the-Poo and George started school.

We’ve met hundreds of new friends this year, gained an oncology family, have our new appreciation for life and a treasure each day as a gift.

Wishing all of our friends, family and followers a wonderful 2017, may it be filled with love and appreciation of the small things 🙂

Here’s one of our small things tonight!

Lis x

The Shitmas Tree | child on cancer treatment at Christmas

The Joshua Tree Christmas party
The Joshua Tree Christmas party

Maintenance Phase – December 2016

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…

Christmas Decs

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! 

Our tree of memories
Our tree of memories

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.

Complete with tacky lights!
Forever growing collection

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…

 

Christmassy fun
Christmassy fun

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.

Lis x

P.S.

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

Sugar without her uterus anymore
Sugar without her uterus anymore

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.

First day of school Mummy adventures Part II

Lisa Rooza
September 9, 2016

First morning without the kids vlog

Lisa Rooza
September 9, 2016

George starting school – a child on chemotherapy

George and his fluffy head
George and his fluffy head

George is starting school tomorrow…. i’ll just let that sink in.

I’ve been cracking on with life like I did when he was diagnosed with leukaemia and burying my head in the sand a little.  Everything’s going to be ok, everything’s fine… I can tell you now, this is going to go one of two ways, i’m either going to be hard faced dropping him off or i’m going to be in bits, with no in between.  Our only saving grace is the fact that he’s just doing an afternoon tomorrow so at least I won’t be in the morning drop off crowd waving him off with Oliver and Harriet.  The rest of the week builds up to a full day then next week, boom, full time education!

This is more than “oh no my baby is leaving me!”, “he’s too young” nerves.  It’s more like “my son is on chemotherapy AND starts school tomorrow” kind of thing… you know the feeling?  No you probably don’t.

I’ve got every faith that his new teacher has got this, she is completely lovely and supportive, the same as the school has been since I had to make the phone call to say “Oliver and Harriet won’t be in today, their little brother has cancer, we’re taking them to Alder Hey”  Now THAT was a shitty day.

No, tomorrow won’t be a shitty one, tomorrow is the next step, the beginning of George’s school life.  It will be slightly different to the other children’s, in that he’s going to spend another 3 years with a suppressed immune system to prevent the “bad cells” coming back.  He has daily chemotherapy, another weekly chemotherapy, blood tests and meetings with his consultant every fortnight and goes to theatre ever 12 weeks for a lumbar puncture and spinal chemotherapy.  Let’s just say, there’ll be no 100% attendance certificate coming his way!

George will be more at risk of infection, and anything like that will mean more “sleepovers” at Alder Hey for IV antibiotics and monitoring too.  He’s going to have to try to maintain a high level of hygiene (he’s 4!?), avoid contact sport because of Barry (his port) and his joints may get sore after physical activities.  Catching anything contagious is unavoidable but we know the school have been on the ball with reminding parents to keep their children off if they’re ill, I mean, puking, the trots, chicken pox – what more could we ask.

The three amigos
The three amigos

Despite all this, we’re looking forward to him getting involved in and enjoying as much of school life as possible, particularly friendship.  Whether he’s reading War and Peace by 6 years old, can do Pythagoras theorem or can sing like a canary… it’s not really what it’s all about in life really is it?  I’m just glad he’s getting to go to bleedin’ school and has a chance to be happy like the rest of the kids from nursery (we miss you Playdays!).

Don’t get me wrong i’ll still post proud as punch photos on Facebook etc when he can draw round his hand at age 12…. that’s because i’m his mum. But whether he’s meeting “age related expectations” at the end of the school year or not is not about to change anything.  We’ve met more than enough families whose children have been taken from them for us to appreciate all of our children just being here.

George and his dody
George and his dody

Since George was a baby and throughout his cancer treatment he’s still always had a dummy (dody we call it) for bed time and when he needed soothing.  He’d always had it, along with his precious scarf comforter.   It was particularly necessary when going through the chemo, needles, anaesthetic and when he has been in pain.

I’d been militant when Oliver and Harriet had dodies when they were little, fretting about their teeth, fretting them being “too big”, or being judged so theirs were banished at the earliest opportunity.  As you can imagine, I hadn’t really give two hoots about the shape of George’s teeth given at one point I worried that cancer might beat him… I certainly did not give a rat’s ass what other people might think.  Like I’ve said before, one of the positive things this awful diagnosis has brought with it, is a whole new perspective… and it’s liberating.

But! actual magical things happened at our house this week… with big boy’s school fast approaching George said he wanted to give his dodies to the baby fairies.  A little door appeared one night in his bedroom and he left his dodies sprinkled with fairy dust outside.  In the morning a fire boat toy had been left in return, a fire boat that George had always wanted!  How did they know?  So George, along with starting primary school has also given away his dodies and has only mentioned them since to tell the story about the fairy door in his bedroom.  The door is still there because the tooth fairy is going to need to get in one day.

So we’ve ironed three sets of uniform, and when I say we, I mean Damien has! well…. I went out buying it all! we’ve tried everything on, got water bottles and PE kits, lunch bags, new haircuts (nearly there George!) and it’ll be baths and an early night tonight.

All ready?
All ready?

On a final note, George has asked nearly every day can he go to school yet. He is totally not arsed!

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’s latest chemo and Team Erin Cross

Garden fun for Harriet and George
Garden fun for Harriet and George

With Wednesday’s five and a half hour treatment out of the way, we were pleasantly surprised that George returned home acting like his usual self – cheeky and wanting to play outside.  We’re still only a few days in from that treatment and know there’s still time that his counts can dip and he can get a temperature or any of the many other side effects.  Any initial sickness hasn’t happened though, just a tummy ache on Wednesday night – maybe the anti-sickness drugs did the trick?

Here is George and Harriet after George’s full day in hospital having chemotherapy on Wednesday this week.

Daddy did the hospital run that day and I stayed home with Oliver and Harriet to try to keep a bit of normality.  George was very brave having “Barry” accessed and just cracked on with his drip in all day.  He also bumped into Erin and her Daddy whilst in hospital and caught up on the latest fundraising to help get Erin to America for her life saving treatment to prepare her for a bone marrow transplant.  You may remember I posted early on when I started this blog about a family we met at The Joshua Tree when George was first diagnosed, that I’d felt relieved Damien had met another Dad he could chat to – sadly Erin has since relapsed and the family just found out their only hope for their little girl is to receive Car T Cell therapy to get her into a position to receive a bone marrow transplant.  On Wednesday I think the fundraising had only really just got into the swing of things and the £100,000 they needed seemed so far away.

Erin Cross
Erin Cross

Today, by the power of social media and the generosity of so many people, the target has been smashed and they are at almost £116,000.  I am elated.  For Erin, for her Mummy and Daddy, for all the people that love them and for all the people who donated – every one who donated is a hero in themselves.

Some people disagree with how much I put on my blog and social media, how much I share my thoughts and feelings about what our family are going through.  Without social media right now the outlook for Erin and children alike would not be such a positive one – this is because her family have put out there what is happening to their child, how they feel and opened up there hearts to anyone would listen.  I guarantee you would do the same if you had to walk in their shoes.  If anyone would like to add to their fund, as Erin’s trip to America for treatment is not likely to just be a one off, you can donate here.

George taking his oral chemo himself
George taking his oral chemo himself

George returned from hospital on Wednesday with a whole bag of goodies for the Macmillan nurses when they come to give him his daily chemo in “Barry” at home for the next four days.  George is also back on his mercaptopurine medicine (the one he calls his chocolate medicine) which is his chemotherapy we administer now for the next three years.  He also has anti-sickness and morphine to counter act the other side effects of cancer treatment.

Oliver chilling
Oliver chilling

We’ve been fortune enough over the past few days to enjoy some sun and high temperatures in the North West!  Our beautiful garden has been made the most of by all of us and the last few jobs are almost there.  The awning has been out in all it’s grey and yellow glory, protecting Georgie from the sun and protecting all of us from the odd rain shower – come on, it is Warrington after all.

This morning I noticed the wee George had in his potty looked a funny colour. We’d been told that bladder damage is a side effect of the Cyclophosphamide drug he’d had so had to take him straight in if there were any changes to his urine.

And so the comedy sketch of getting three reluctant kids dressed, a suitcase packed in case we were kept in and all out of the door as fast as possible began.  Luckily our volunteer from Home Start was here when I made the phone call to Alder Hey which meant she could at least prevent the kids from Homer-Simpson-strangling each other while I tried to get myself ready.

Olly and Imy’s Mummy, Nic, to the rescue again, where I dumped Oliver and Harriet on the door step and sped off with George.  I did have a pang in my chest en route and was a little upset for the older two children but was also thinking about these side effects for George and whether might lead to something serious.  However the kids had been made up with getting a play day with their friends and George had was happy to be going to hospital!?.

George and his nurse taking blood from Barry
George and his nurse

After having his obs taken, his pee tested and being checked over by Kev, the ANP who always makes George giggle, he was prescribed some antibiotics for a UTI (water infection) and had bloods taken to check if he needs a transfusion.  You can see him there in a photo casually perusing the Argos catalogue he likes to carry about with him!

We were allowed home by mid afternoon, though almost needed a snorkel or oars or something…. the storm that occurring in Liverpool was of apocalyptic measure.  The good old sperm whale (C4 Picasso) saw us through though and we made it back to collect the children and stayed to have a quick brew…. a quick brew that lasted about 4 hours that is when our friend also joined with her two!

Why say it in three words when you can say it 3000 though?  that’s my motto!

Lis x

A week’s stay and an injured minion

Poorly Georgie cuddles
Poorly Georgie cuddles

Damien didn’t get his one night out in while after all last Friday night 🙁 unfortunately, George developed a temperature so Daddy had to rush back to look after Oliver and Harriet while I took him off to Alder Hey.  Luckily, I’d just tucked into an absolute feast as our friends had come round for a few hours and Andrea had ordered a fat take away.  So fuelled up for the night, off Georgie and I went for another sleep over.

All the days are merging into one with a lot of to-ing and fro-ing and juggling of the kids, all I can tell you is that it’s been harder than ever.  No doubt about it, it’s been one of the biggest challenges I’ve ever faced, I don’t know about Damien (he’s in a relationship with me, I’m sure that’s not far off!).

It’s the staying strong while George is suffering – an afternoon here and a day there is all we’ve had to handle in the past of him being really unhappy so you sort of appreciate when he’s better and try to forget.  This time it’s been a gradual decline at home where I’d started fretting, then he’s spiked a temp and we’ve come in for IV antibiotics and pain relief for mucositis…George had ulcers and blisters running from his mouth through his digestive system to his bottom.  This is a side effect that 40% of people get who are receiving the same kind of chemo as George.

It was meant to be a relief for all of us coming in, pain relief for George and reassurance for us that he’s safe and things are being monitored.  Unfortunately things got worse for about 3 days…

At about 1am the night before last, after not sleeping for days and having hours of George crying in pain, begging for food that he couldn’t get in his mouth and him shouting at me “why are you not my friend any more?” and “I just want to make you happy!!”  I thought I was cracking up… I cried, I asked the nurse do they ever get parents just walking out saying they couldn’t do it any more?  Obviously, I was going nowhere, I just felt consumed by helplessness and selfishly wanted it all to go away.  I continued to try to comfort him and tell him Mummy will always be his friend and that I love him very much.

It was at that point that the staff changed his pain relief from Morphine to a Fentanyl.. I’m not sure what the difference is, it was just another option and we just wanted something to work for him.  So he has a little button we press when we feel he needs a little more… at one point it was whenever he coughed, yawned, sneezed or tried to drink/eat.  It turns out some of his irrational crazy shouting and crying was actually a side effect of the morphine as the constant crying settled slightly once he changed drugs.

On Sunday night one of my good friends offered to keep me company, though not being one who gives a sh*t about anything… she turned up in a MASSIVE Minion costume.  I’d like to say it went down great, and it did with all the other kids, but not really with our George.  Stepping into our room and doing a little dance was a step too far and we had to banish the Minion back to the corridor.

Andrea Davis you are an absolute legend!  The comical part of the story that will be passed down generations to come is that once the Minion when to get changed back into their every day clothes, she twisted funny on her leg and said she felt a snap :-/ Next thing is, sweating she’s hopping out of a disabled toilet, with a load of little kids stood outside waiting for the ‘Minion’ saying “I’ve just seen a Minion in there!?” quite obviously in agony dragging herself back to our room where I was trying to comfort a petrified George!

Andrea being wheeled off
Andrea being wheeled off

Poor Andrea, she meant well and made a lot of poorly little children very happy posing for photos, but I’ll never forget that day.  The nurses were great, gave her ice, pain relief and even a wheel chair!  Andrea’s dad and brother had to come from Manchester to rescue her <inserts crying laughing face>

Yesterday Daddy was on duty and had to deal with the gripper attached to Barry falling out (if you don’t know who Barry is, you need to keep up).  This meant freezing cold spray and pinning George down to insert a new one…. which missed…. so they had to do it again 🙁 poor Georgie and poor Daddy.

Bike ride to the beer garden
Bike ride to the beer garden

Meanwhile I managed another bike ride with Oliver and Harriet to a local beer garden for lunch with our friends Kath and Lola.  It was nice to just be normal for a bit, watch the kids make up dances and play football etc, even if I was functioning on about 4 hours sleep.  Last night I settled in early with a book and had a blood good night’s sleep.

George was up from 3am for Daddy but has made up for it today with a little nap.  Dare I say he has a twinkle back in his eye too… he’s say here now trying to eat one bean at a time (at 10.30pm!).  He’s actually been upright and wandering around a little so is definitely on the mend.

George and Theo
George and Theo

We also met little Theo from Warrington today who I may have mentioned on my FB Page or possibly personal page last week.  His family and friends are desperately raising the money in order for him to have Proton Beam therapy in the USA.  It’s an upsetting story where Theo was given 8 weeks to live before a surgeon offered to try removing it here at Alder Hey.  The surgery was successful but he now needs treatment like George but due to the nature of the cancer, it isn’t as straight forward for him – his safest option of treatment isn’t even available here in the UK.  You can read his story and/or donate if you want to here.

We spoke with the consultant this morning who has told us that George’s longer dose of chemo that was supposed to happen on Thursday has now been delayed until he is well enough to receive it.  Hopefully that will just be next week as we don’t want this phase dragging on.  George is still neutropenic (you should all be experts in this by now… low neutrophil count that fight the bad stuff) so it means he needs to stay temperature free and also not rely on the pain relief to drink before we go home.  Doctor is hoping Thursday we’ll be released back into the wild/

George and his Lego shuttle
George and his Lego shuttle

I’m home with Oliver and Harriet tomorrow so better get my thinking cap on for trying to have a nice day with them while we can.  Back here, thank God for Lego, my mad mate Andrea who’s been back for more tonight with Kurt to keep us company, the play workers as usual, the super supportive nurses and the very patient chef!

Lis x

George having a wander
George having a wander

 

George’s play doh egg

George is starting to come through his very sore ulcerated mouth and throat… he’s much better today compared to the last few days.  I’ll blog more about how it’s been over the weekend, just wanted everyone to see he’s ‘ok’ and dosed up on pain relief at home x

Week 2 of Delayed Intensification…

As you may have seen from the Chemo Day Inspiration video I posted, last week’s treatment went miles more smoothly than the previous week!

George’s day at hospital was actually a lovely one, with his friend Pip spending lots of time with him.  He particularly loved Zoomer the little Dinosaur – there’s something for his birthday list!

He had an afternoon playing and laughing and all went well with his treatment, he was super brave having Barry accessed for his medicine to “punch the bad cells!”.  We didn’t even really need his entire suitcase but at least we were prepared this time!.  The afternoon did drag on a little but luckily my good friend Nic was on hand to pick Oliver and Harriet up from school… huge thanks again lovely 🙂

Tickle time!
Tickle time!

We went to pick the kids up but decided since it was a beautiful night and the children were all happy, we’d sit out in the garden for a while.  George loves Nic to bits and constantly asks to visit the Cairns/Furby household to play with Nic, not the children 🙂

Unfortunately the following morning George was complaining of pains in his neck, I called the Oncology Daycare at Alder Hey and they asked us to come straight in.  So, suitcase in hand again, we were off down the M62.  This time I was a bit more worried as it wasn’t something we’d experienced before and George was literally holding his neck crying all the way there and shouting hurry Mummy!  All sorts was going through my mind as you can imagine…

Poorly Georgie :s
Poorly Georgie :s

We got there and Kev, the ANP, who is always fantastic with the kids, checked George over.  He said he could see some blood and swelling in his ear and that he thinks it’s an ear infection.  He prescribed antibiotics and was dosed up on morphine and we came back home again.

Yay!
Yay!

Over the weekend we’ve had the excitement of a skip arriving for the digging out of the back garden.  George loves vehicles and machinery so he loved watching the action! The garden is really coming along now – the decking is done and is already much easier for George to access.  The work for the artificial grass begins tomorrow plus the new fencing and gate arrives.

Andrea and George
Andrea and George

It was nice to see our friends Andrea, Olivia and Ray over the weekend and the older kids had a play out in the sunshine.  George was very interested in this “Diggerland” place Andrea was telling him about – we may try and visit if we can find a quiet day!

We also had Kath and Lola come over to help us get some planters and pots filled. I visited all the local plant nurseries and bought a load of plants I have no idea what to do with!  fingers crossed they just need soil and water!  Harriet is desperate to grow her own vegetables so I’m going to try to incorporate a mini-greenhouse somewhere.

Yesterday Georgie developed a chesty cough and has become quite congested, his temperature had started rising, so I thought we would be heading back to hospital.  He had a good morning today but was snoozey this afternoon – we’ve some Mummy cuddles and it hasn’t crept up further.  Think i’ll be in his room with him though tonight as he’s definitely not himself and I find it difficult to sleep away from him when he’s more unwell than usual.   I don’t know how we’ll ever go back to not checking on him all the time!

Sleepy boy today
Sleepy boy today
Shine brightly Lacey Mae x
Shine brightly Lacey Mae x

We’ve heard more sad news that another little lady from our Oncology ward passed yesterday, another family’s hearts broken.  I’m aching for them, 4 years old. Good night Lacey Mae xxx

Lis x