George Made a Wish

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.

George Rooza

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.

George and his Make a Wish Memory Box

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).

  Georges Beads of Courage

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?

 

Lis x

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

A wobble during maintenance phase treatment for leukaemia

Feeling like the world is moving in Daycare

So a year to the day yesterday was the first day George was hospitalised in Warrington for low blood counts, a limp and fever.  Little did we know how our world was about to never be the same again.  A year on from the initial symptoms of leukaemia developing, we’re trying to live life to the fullest around George’s treatment and hospital admissions.

This time last week I was telling people how lucky we’ve been, apart from for scheduled visits and the odd temperature here and there, we’ve avoided staying over at Alder Hey and anything too concerning.  Today we’re sat waiting to be called to theatre following an overnight stay for an unscheduled investigative lumbar puncture and MRI.  Someone somewhere must have read my gloating Facebook posts of festive fun thought…woah… that’s enough Lis!

Yesterday morning George didn’t seem right when he got up, he was unsteady and said “the world is turning”.  I put it down to him getting up out of bed too fast which had made him dizzy.   He was holding the furniture in his bedroom to get to the bathroom and asked me to support him on the loo.  Afterwards he was fine and took himself downstairs to Oliver and Harriet for breakfast.  If I’m honest, I didnt think too much of it!

Damien had taken the day off for us to go out for breakfast, do some last minute Christmas shopping and finish the wrapping – a rare moment of just us two while the kids were in school.  He took them off on the school run and I lazed around making the most of my rare lie-in.  I just asked Damien to mention to George’s teachers that he’d had a dizzy spell.

George must have been in school for 15 minutes tops when the school office called to tell us he seems confused and is standing quite rigid.  Damien rushed back for him while I gathered our stuff and called Oncology Daycare at Alder Hey.  We were told to take him straight in and if there was any delay to call an ambulance.

The following few hours consisted of George being vacant, staring into the middle distance with dilated pupils even when a light was shone into them.  He was weak down his left side and didn’t seem to understand us when we spoke to him.  It probably lasted about 5 hours before he started to return to normal again.  The nurses and staff were lovely and supportive and kept a close eye on him throughout – we also got to chat to lots of our oncology friends as they passed through for their treatment before Christmas.

I recalled that the day previous I’d had a call from school saying George had bumped his head but there was no mark and he wasn’t upset.  Although George hadn’t been sick, the nurses considered him having delayed concussion and he was sent for for a CT scan.  That wasn’t a very positive experience… the motion of the moving bed down the brightly lit corridors sent George’s eyes rolling all over the place and he became distressed.  He cried and Mummy had to lie like Superwoman (literally!) on the bed holding his hands as he went through the CT machine.

By the afternoon, although George did look to be improving, the ANP looking after us said that they’d be happier if he stayed overnight to be monitored.  The CT had been inconclusive and were told it was likely he’d have to go to theatre this morning for an investigative lumbar puncture.  They will some spinal fluid under general to be tested for viruses and “nasties” i.e. cancer cells.  He’d already had Barry accessed for bloods to be cultured, we knew his blood counts were good, he didnt have a temperature and he’d provided a urine sample.  The hospital want an answer as to what has set him off in this way before they can relax.

Smith Brothers Champion Boxers at Alder Hey

Alder Hey has a real festive air about it at the moment, there are little Christmas trees everywhere, Santa and even some superhero characters knocking around bring smiles to the kids faces.  There were a group of brothers who are boxers who came round the Oncology unit to see all the children too…they were so friendly, nothing phased them.  Having been in a position where you’re scared to death of being around children with cancer, I think it’s an amazing thing to do coming here!  I have friends and family that have still never stepped foot in the place yet there they are.

George had a restless night, I’m shattered as I kept having visions of him chucking himself out of the bed (even though there are rails on it).  This morning he’s perky, chatty and reassuringly like himself.  He’s nil by mouth ready for theatre and asking for food constantly – it’s currently nearly twelve and we’ve not been called yet.  Daddy has returned from home and we’re being martyrs not eating for him either.

Karen, who was George’s nurse yesterday in Day Care, has already bobbed in to us in our room to see how he’s doing and was well impressed with how bright he is.

Daddy and Georgie enjoying some Youtube Lego videos

I had got into my head that if he was well this morning he probably wouldn’t go for the MRI.  I’m conscious he’s going to freak out in it and he has to lie perfectly still in the really loud machine for 15 minutes.  I’ve pushed for him to go under general anaesthetic whilst in there but there isn’t a slot available at the same time as his lumbar puncture when he’ll already be under.  I just thought with him being seemingly well today they wouldn’t put him through it.  However, it’s not the case, although he’s much more ‘with it’, he’s still slightly weak on one side and the doctor would prefer a more detailed image of his head and spine.

Fortunately for Oliver and Harriet, their Daddy has finished work for Christmas now so they’re getting some quality time with him while we’re back and to.  Thank you to everyone who keeps messaging offering to have them! I really appreciate your kindness.

We also appreciate the offers of visits, dog walkers, shopping and present wrapping!  but i’m keeping optimistic and am hoping these scans and tests are going to be clear and we’ll be sent on our way today.   If not, I will most definitely be in touch.

So for now we’re just watching shite YouTube videos and building Lego with George, desperately hungry but not wanting to eat for George’s sake but also a little through anxiety at the same time.  He’s saying he’ll be very brave for his MRI – he shouldn’t even have to know what one is, never mind be brave!

Feeling the need to remind myself what there is to be grateful for so here goes with today’s 5 glads!

  • Glad I finally got to meet a local family I’ve been speaking with online after their little one unfortunately became an oncology patient at Alder Hey recently.  We had a couple of mutual friends who’d put us in touch and realised last night we are neighbours on Ward 3B.  We chatted for hours last night, putting the world to rights.
  • I realise that without tough situations like what’s happening right now, I wouldn’t appreciate how many good friends and family members we have behind us.
  • Glad we got to bump into our friends Erin and Jack yesterday in Daycare and hear how well they’re doing and what lovely Christmases they have planned – something that months ago they couldn’t even think about.
  • Grateful for Alder Hey… and how there’s no messing about in this place, if there’s something a-brewing, there’s not waiting it out at home, they just keep going until they work out what it is or how they can try to fix it.
  • The nurses and support staff.  They go out of their way to chat, help, support and even make us laugh during our stay.
Off to theatre with a turkey

I’ll keep visualising wrapping presents with a glass of Baileys later… hope every one is having a lovely build up to Christmas and not complaining too much about traffic, shopping, wrapping, and their kids – treasure it all folks!  Update you all again soon x

ps. he’s just gone into theatre no problems with a member of theatre staff with a turkey on his head.. what more do you want?

 

 

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

Maintenance Phase: Doodle does Alder Hey, half term and who taught them these hymns!?

Dr Keenan checking Doodle over
Dr Keenan checking Doodle over

Last week George officially moved on to a part of maintenance that allows us to spend less time at the hospital.  We still have to visit just as much as he still needs his blood tests, but we don’t need to hang around as much for consultant appointments.  Appointments with the doctor are still fortnightly but we now have every other appointment over the phone.  We discuss George’s blood test results, how he’s been in himself and they then tell us what chemo dose to adjust to…. feels like a lot of responsibility but really, we’re writing on a document what the new dose is, and following that.  I believe this isn’t something that’s available to every family (before any oncology friends/followers wonder what’s going on!), it depends on diagnosis, treatment and the stage your little one is at, I’m also not sure it’s something that’s offered at every hospital either.

George’s “good” cells are doing well at the moment so Dr Keenan increased his chemotherapy dose again.  They need to be suppressed a little (with chemo) to make sure any leukaemia cells don’t have a chance to multiply.

Blood test with Debbie
Blood test with Debbie

Everything else is the same with treatment with regards to going to hospital when his temperature gets to 38 degrees, he still needs his port flushing monthly, has theatre every 12 weeks for spinal chemo and at the end of the day, if there’s anything we’re concerned about, we go back to fortnightly doctors assessments or drop everything and go if it’s serious!

It’s the end of the George’s first school term, Harriet’s first term in Year 4 and Oliver’s last ever school year in a primary school! Treatment and appointments have only really taken George out of school for a total of 2 days as we’ve managed to get him back in for a half day after his appointments.  There’s been a week’s worth of a medicine he had to take as there was a suspected chicken pox outbreak but other than that, he’s not been sent home ONCE since starting in reception… he’s not had any temperatures during school time (we’ve had a couple of weekend visits) so we couldn’t have hoped for a better start to big school for Georgie-Roo.

George and Doodle even got to have a mooch around pharmacy!
George and Doodle even got to have a mooch around pharmacy!

Just as we managed to get into the swing of juggling hospital visits, homework, spellings, reading, after school clubs and classes etc for all three kids, we had the pleasure of George’s class dog-teddy, Doodle, coming home for the weekend.  Those with kids who’ve experienced a class teddy before will understand what a joy that is!  And for added pressure, we were the first to have Doodle this year so had to set the precedent…. you’re supposed to record/photograph your weekend’s adventures, people take him on their holidays, he’s been to Lapland in previous years for God’s sake!  How were we going to make a weekend in pjs scratching our arses look like an educational adventure?!

Well…. we didn’t! but luckily for Doodle, he wasn’t due back in until the Wednesday and George was due at Alder Hey the same day.  So off we went badgering every member of staff we dealt with in Oncology for a photo.  Thank you to the lovely team for being so photogenic 🙂 you know you’ve made it in life when you feature in the Rooza blog 😉

Weighing in
Weighing in

It’s now half term and I won’t know what’s hit me with all three of the little loves around.  We’ve got lots to celebrate as all three of them are doing great at school… it’s also D-Day for the final high school submission for Oliver, who we now know passed a grammar school entrance exam – you think choosing a primary school is a challenge? wait til you’re up to high school choices with over-subscription, catchments and feeder schools to deal with <insert arrrggghhhh face here>.

We’re kicking off half term, leaving Daddy and Sugar behind to visit our cousins in St Albans and hopefully will hit the zoo.  Wish me luck for tomorrow on the M6 with a gang of kids whose current favourite pass time is worse than them all arguing! They sing out of tune HYMNS full pelt together!

Happy half term folks

Lis x

A 400 mile bike ride for George, fattening him up and chicken pox alert

4 guys 400 miles
4 guys 400 miles

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 Guardian and 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 Hey for 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.

Stroll around Rixton Clay Pits
Stroll around Rixton Clay Pits

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 hereon Twitter or Instagram get 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

Neutrophils, Optimus Prime and a Character Award

Applying numbing cream
Applying numbing cream
Just a quick one tonight to let everyone know that last Wednesday’s hospital trip was okay.  The blood counts that were concerning us have now really picked up, but to the point that they’re too high so the chemo has been increased hopefully just enough to get the counts to the ideal point.

George bowled us over with his courage and bravery from being nil by mouth, having “Barry” accessed with the gripper to going under general anaesthetic and coming round again without a tear.  I’ve got a Vlog to upload of that day which I’ll put up later in the week.

He had his numbing cream on before we left home and wasn’t allowed anything to eat while Oliver and Harriet sat eating their breakfasts.  Daddy took George to hospital while I gave Sugar and quick sprint around the park and took Oliver and Harriet to school.  I must be honest, I had another wobble on the way to hospital as there was a bloody ambulance on the M62 blue lighting all the way.  It took me back to 5th January this year when I had to follow the ambulance with my own son in it to Alder Hey the day before he was diagnosed.

I made it to the hospital just in time for George going into his consultant.  It was a relief to hear that his neutrophil count had picked up, they were just higher than the doctor would like this time so the chemo has been increased now to bring them down again.  The doctor was a little concerned at George’s weight loss as he’s lost 1.5kg in two weeks, that’s quite a lot for a little person.  It’s been put down to the fact that he’s started school and is much more active.  I have had a chat with his teacher since to double check he is actually eating his lunch which she assures me he is, he’s a great little eater.  The concern will be if he’s lost weight again, although I’m not sure what it means for him if he has… just another waiting game.

Gripper going in
Gripper going in
So following the clinic meeting with the consultant, we went through the motions that we’re all now prepared for.  Karyn, the lovely nurse who has never missed “Barry” with the gripper was on, so that was really straight forward and relaxed.  We were called to the theatre waiting room where George watched Toy Story on the TV then blew me a kiss goodbye, and off he went for his sleep and lumbar puncture for spinal chemotherapy.  He has this spinal chemo because the oral chemotherapy that we give him at home doesn’t reach the spinal cord and fluid around the brain.  Leukaemia cells can travel into the fluid that surrounds the spine and brain, so during the maintenance phase, he has to have this procedure via lumbar puncture every 12 weeks.

Laying flat for lunch
Laying flat for lunch
After his theatre trip, he was wheeled back up to the ward, staying lay flat as directed for about an hour.  He was absolutely ravenous so ate half of my butties before his own picnic arrived along with his special request of chocolate ice cream!  The kitchen really look after them.

George had been really looking forward to going to theatre because A. he got to have a sleep and B. he gets a present for being brave.  Mummy hadn’t been very organised so he got to choose which Transformer he wanted from his bed on my phone that day.  Thank you Amazon Prime, Optimus Prime arrived the next day 🙂

Optimus Prime
Optimus Prime
So all is good in the hood at the moment, we’re back at Alder Hey again on 5th October all being well, so we’d better get fattening George up in the meantime!

Georgie was straight back to school on Thursday and on Friday I had another little emotional moment, but for a lovely reason, he came out of school with a Character Award for Courage… for joining in with a dance lesson even though he wasn’t sure he’d like it!  Bless him, cracks me up.

What a character
What a character
Just another quick THANK YOU to our lovely neighbour Laura (not Ian, he can’t be arsed reading the blog..I’ll Vlog another time!), for having Sugar Poo over for doggy play dates with Teddy their sausage dog while we’re at Alder Hey.  You’re a star! x

 

 

You can relax now…… erm No!! – choice of language and childhood cancer

George looking very relaxed having a blood test
Laid back Larry having a blood test

Tomorrow, Wednesday 21st September 2016, will be George’s first trip to theatre for a lumbar puncture to give him spinal chemotherapy since he started big boy’s school.  He had to come out of school today to go to Alder Hey for a blood test in case he needs any blood transfusions before tomorrow’s procedure.

I’m sure if it was one of us adults going to theatre under general anaesthetic we’d probably be in bed for the week following, feeling sorry for ourselves.  Providing all goes to plan there’s no doubt that George will be back trotting into school on Thursday.  When I say trotting, I mean, whining for me to carry him in to school because his “legs hurt”, only to spend the day running and riding bikes around with his friends with no pain at all… funny that.

I’m not really nervous about the actual procedure as we all know the drill now, particularly George whose only thoughts are “will I get a present if I stay lying down afterwards?” (this is to prevent the chemotherapy reaching his brain and giving him severe headaches if you remember).  I’m more nervous about his blood test results and where they’re up to.

George has been on reduced chemotherapy for 5-6 weeks now because his neutrophil count isn’t where they want it to be, it’s still quite low.  Neutrophils fight infection and are “good” cells.  He had a bad cough, it reached its peak and has gone now but his neutrophils have still remained low.  He’s borderline severely neutropenic… not that you’d be able to tell by looking at him.  Reduced chemo is not what we want, shite as the side effects can be, we want to feel like he’s on a decent dose to prevent relapse, but then too much chemo is what is likely to knocking his neutrophil count down! you can see the issue here.

We know that relapse whilst on treatment would be quite rare, it’s when he comes off treatment after the 3 years that the chances of it returning increases – makes sense.

I read a lady’s angry rant on a FB support group for parents of children with cancer recently.  This lady was p*ssed off because her child has just finished treatment, and other non-cancer-parents keep saying things like “well at least it’s all over” and making references to being able to relax now.  No.  Folks, be mindful that coming off treatment, depending what type of cancer they’ve had, will be worse for that Mummy or Daddy (or person themselves!) than a lot of their experiences so far – and there will have been some baaaaaaad times believe me.  Yes, their child may no longer experiencing the side effects of chemo, but oh my god, relax!?  I’m sure it was completely innocent comment, people just don’t know what to say.

George still has years of chemotherapy treatment ahead of him.  We have this dodgy blood count which will probably just be nothing, but I’m constantly on pins, looking for a limp, fretting over a temp, worrying when he doesn’t feel like eating his tea or just looks slightly off colour.  The first thing that pops up into your mind is that the leukaemia is back.

George finishes his treatment in the Summer of 2019 all being well.  I hope that, if only the followers of my blog take something from this post, that will be a few more people who will be a little more mindful of the language used when speaking with the parent of a little survivor (or ANY cancer survivor for that matter).   Yes we’ll reach milestones, yes we may now have a new lease of life, we may view the world completely differently.  But we’re not all kicking back and chilling because our child has a full head of hair, or is attending school, or their last dose of chemo has been taken.  The constant fear of relapse is always in the back of our minds, whilst getting on with life, living it to it’s fullest with those we love.

The smug dog
The smug dog

On a lighter note, this week has been a week filled with having places to be and relaxed doggy walks… yeah it doesnt sound like me, the relaxed dog walks that is.  In reality, the dog is currently refusing to walk unless it has canine-company.  I’ve somehow ended up over-socialising my bloody dog as if that’s a thing!!  She already looks like me, now she can’t cope without mates like me!  So we’ve been practising going out without half the dogs in Warrington…  Look at her face on that photo, that’s what I’m dealing with.

Georgie hitching a lift with his big brother
Georgie hitching a lift with his big brother

Kids and school-wise we’ve had 3 lots of homework, we’ve got 3 lots of reading, 2 lots of spellings, basketball training, basketball matches, karate, swimming lessons, art and craft club and running club this week.  That’s around hospital twice for George, shopping and we’re about to start viewing high schools for Oliver… I’m doing my best at empowering the kids, teaching them right from wrong, teaching the dog not to jump up and nip anything that moves or drag its arse along the floor.

Suffice to say it’s Tuesday and the gin/wine/turps is calling me….

Lis x

It’s a bloody mongrel! – New puppy for a child in maintenance

Sugar Poo
Sugar Poo

As you may have already gathered, if you follow me on instagram or had the pleasure of watching my Vlog last week, we decided to get a puppy.  When I say we, I mean, Damien walked in from work to a lovely surprise a few weeks back!

I’ll be honest, I’m no expert when it comes to training a new puppy and the first night of her crying downstairs had me questioning whether I’d done the right thing.  The turd trodden through the house, the new aroma lingering around and our pussy cat, Pip, now residing upstairs had also contributed to me questioning my sanity.  Oh yeah, the three kids and regular hospital trips must also be considered.

Yes.  I admit it.  I know if it was anyone else, i’d be asking why!?

Pip relaxing out of the way of Sugar
Pip relaxing out of the way of Sugar

When George was diagnosed with leukaemia we were told new pets at that time were a no-no, as was travelling more than an hour’s radius away from Alder Hey Children’s Hospital, holidays, being around other children that could be carrying contagious illnesses and a whole host of other things that most other people take for granted.

Since then, we’ve watched in horror as our baby suffered the devastating side effects of cancer treatment.  We’ve comforted Oliver as he questioned whether the medicine was going to work for his little brother and Harriet as she cried for me whilst I left her to be at George’s bedside.

These days however, we’re in a completely different place.  George’s treatment has progressed well, he’s attending school and we’re now able to leave the area as long as we’ve let the hospital know – progress.  I asked George’s consultant as he entered the maintenance stage of his cancer treatment whether a new pet was still off limits.  The doctor felt that providing we’re practising good hygiene at home and the puppy is fully vaccinated then welcoming a new family member has more positives to offer than negatives for us.

Sugar coming home with a teary Oliver
Sugar coming home with a teary Oliver

The kids have always longed for a doggy… I decided the they deserved this, and the fact that I’m hanging around talking to myself on Vlogs, I took the them “just for a look” a few weeks ago at some puppies.  Obviously we came home with a fur ball on Oliver’s knee and wondered what the hell do I do with it now?!

“Sugar” as Oliver named her, is a Cockapoo – a cross between a Cocker Spaniel and a Toy Poodle or a “bloody mongrel” as one lovely lady kindly pointed out to me on the park at the weekend.  She doesn’t appear to be a curly-poo, more of a silky-poo and she’s definitely a clever-poo…. I’ve taken to adding poo on to everything Sugar orientated like a real-life mushy dog owner.

We chose this particular “breed” or “cross-breed” as Cockapoos are renowned for being great with children (v.important in this house!), are affectionate, not major barkers, are clever and don’t shed or drool a lot – perfect for a novice dog owner like me.

Chilling with Sugar
Chilling with Sugar

Oliver cried when I said we could have her.  My son, who I’ve hardly seen cry since he was a baby, cried!  Harriet speaks to Sugar in her own language and is completely besotted and George thinks he’s a dog too.

Sugar (poo) is perfectly timed for me as well… i’m not one to sit around watching Jezza or spending my life tidying, our house is a home, it’s clean, but I don’t want my gravestone to read “her house was really tidy”….. so now I have a new little friend to keep me company while the kids are in school and sometimes I’ll move things around in an attempt to do housework around puppy dates and walks.  She gets me out and about in all weathers when I wouldn’t have bothered before, getting a bit of exercise all the way to the pub on a Friday afternoon.  In all seriousness though, it’s refreshing getting out to blow the cobwebs away.

Harriet teaching Sugar to lie down
Harriet teaching Sugar to lie down

She’s already sorted her toileting out which is a major bonus with George around.  With the added bonus of the artificial grass, we can wash everything away and disinfect too.  She sleeps soundly at night, can sit, roll over and give her paw…. I think I’m a dog whisperer!

We’ve been to a Puppy Party – yes this exists! we’re going to training classes and we’ve met loads of new people (of course) out with their dogs on the park, it’s like a whole new social life.  Sugar seems really happy and settled in the mad house, she’s strangely soft towards George and loves to learn new things.  We’re looking forward to many happy memories and when I say she’s great company, I mean I’m still being watched on the toilet x

(I must note that our Consultant’s opinion on whether us as a family could take on a new pet is not a blanket decision for all oncology families.  If your child is receiving cancer treatment, please speak with your child’s doctor regarding new pets as everyone’s story, situation and treatment is different).

Puppy love
Puppy love

Positive times in hospital, friendships and hair cuts!

An hour after theatre
An hour after theatre

This week George was in Alder Hey Children’s Hospital for the first of his theatre trips of the Maintenance phase of his treatment.  He was in having intrathecal chemotherapy which is chemo via lumbar puncture into his spinal cord.  This is what he’ll have every 12 weeks for the next few years as part of his treatment for Acute Lymphoblastic Leukaemia.

I shared a video via our Facebook page of him playing and trotting around 3B Day Care whilst playing with his little aeroplane that he’d chosen from the “bravery box”.  He’d been nil by mouth since the night before and wasn’t able to have a drink, he’d been cool-as having Barry, his port, accessed, and was waiting at that point to be called to the theatre waiting room.  Had it been me waiting to go to theatre in his circumstances, I’d have probably had my head in my hands and no saliva left!

It was quite a poignant moment for us, given 6 months ago we’d only just learnt of George’s leukaemia diagnosis and knew little of what lay ahead.  All those times George would have completely had enough, crying and kicking off, but the poking and prodding had to continue.  The stress of administering anaesthetic , pre-meds to calm him, having to stay lay flat after theatre for an HOUR!… the lovely staff (and other parents) trying to reassure us that one day, he’d be ok with it and that they’d seen it all before.  I couldn’t ever believe that any of it would be “normal” as I avoided eye contact with people for fear of I, myself, having a melt down too…

Giggles waiting for theatre
Giggles waiting for theatre

Now look where we are, I know it’s not always going to be completely smooth but George is so happy to go to hospital.  Everyone knows who he is and shouts his name as they walk past while King George gives them the royal wave.  He knows the drill, he loves the nurses, he plays with their equipment and says he wants to be a doctor.

When George was first diagnosed there was another family on the ward with us whose daughter had also only recently been diagnosed with ALL (Acute Lymphoblastic Leukaemia).  Their little girl was experiencing some rough side effects and I remember talking to them and being so frightened about the future.  The thought of being in maintenance and things being more straightforward seemed ridiculous to even consider.

On Wednesday when George was in hospital for a blood test, we spoke to Piper and her mum, we were laughing, smiling and celebrating as they’ve also moved into maintenance…. I’m sure there was even some running man dancing.  I remember looking at people like us, just after George’s diagnosis, when things were hard, and thinking how could possibly be laughing!?  it’s funny how things change.

Nice gift to wake up to
Nice gift to wake up to

On Thursday, I also popped in to visit little Theo’s mummy, he has been in hospital, in isolation, for months so thought she might fancy a Costa.  I couldn’t stick around as I was waiting to be called to get George from recovery but his lovely Mummy passed me a gift for George’s birthday.  He enjoyed opening it once he’d come round, thank you so much Natalie – what a thoughtful gesture, he’s worn his George Pig top this weekend.

People reading this may remember Theo is a 2 year old from Warrington whose family and friends are fundraising to get him to the USA for treatment.  You can read more about this and/or donate here.

We were also sat with Erin (the little girl we’ve met who has benefit from a Little Princess Trust wig) on Wednesday and she was in theatre at the same time on Thursday too.  It was nice to chat with her mum and to hopefully be able offer her some comfort as we move forward as Erin was diagnosed more recently.  I told her about the 19 young girls from our children’s school and the locality, that her photo inspired to donate their hair to The Little Princess Trust.  Erin and her mum thinks it’s fantastic!

Some of the girls have already had their hair cut and are looking great 🙂 as is the fundraising! we’ve smashed the target and not even half of the girls have had their hair cut yet.  We have the local newspaper coming to photograph our little heroes all together this week once they’re done.  Harriet’s hair chop is this Tuesday, she can’t wait.

I overheard her in the bath with George earlier talking about how he’s lucky he doesn’t have to wash his hair at the moment.  She’s so lovely though, she told him not to worry though because it’s going to come back one day.  She also sat telling him that she’s having hers cut off for little girls like him this week.  Harriet she wants to make them feel happy again – my heart could burst with pride.

Oliver basketballAnother proud Mum moment was Saturday when l got to watch Oliver play in his first basketball match for The Eagles.  He was great, given he’d never played before, he charged straight in without hesitation amongst the opposition.  The other team had quite a few high level players but that didn’t phase him at all, he kept getting the ball and generally made the game more difficult for them.  It’s great he’s got something for himself that myself and his dad can take him out to. He was too cool for school not posing for a photo!

Taking his brother and sister out!
Taking his brother and sister out!

George was absolutely made up this week as well – Thank you to our lovely neighbours, the Tsangs, and their family for George’s really generous gift.  The family had done some fundraising through their business and all put in to buy George a battery operated digger, some big Lego storage containers in the shape of Lego of course and a fire engine tent.  He’s one very lucky boy to have you all as friends, as am I.

It’s the end of school year this week coming for Oliver and Harriet, a bit of an emotional one for Harriet as well with her teacher leaving.  We have George’s graduation tomorrow and a visit from George’s teacher.  I can’t believe we won’t have the comfort blanket of Playdays anymore 🙁 gifts for the teachers just don’t seem enough to signify how much they all mean to George and us as a family.  I’ve looked through George’s keyworker file that details his journey since he started there.  It’s really sad to see the photos from last year when he’s quite obviously poorly but we didn’t realise.  Then the photos as he changes throughout his cancer treatment, i’m so glad we kept up with attending preschool, I wouldn’t have felt as confident as I do now about him starting school without them.

Prepare for an emotional post as we get the kids sorted for school this coming September!

So we’ve got lots going on, we’re excited for what the summer will bring and feel elated to be able actually make plans to get away for a break in the UK.

Lis x