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

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

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

 

 

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

The Familymoon in all its glory

First day at St Ives Bay
First day at St Ives Bay

The few weeks following becoming Mr and Mrs Rooza have become one of our all time favourite memories.  We’d organised two weeks “Familymoon” in Cornwall with George’s consultant haematologist’s permission.  This wasn’t something i’d ever envisaged being able to do during his intense treatment.

We usually camp but decided we’d make life a little easier not having pitch a tent etc by staying in a caravan.  We’d stayed at St Ives Bay Holiday Park last year with all our friends so knew it had everything we wanted plus this time, a sea view to wake up to in the morning.

View from our caravan
View from our caravan

We packed all of George’s chemotherapy and pain relief, high factor sun cream (you can have this prescribed by the Oncology department for anyone who may find that useful), we knew where the nearest paediatric unit was and then where the nearest Oncology unit was too.

Choosing to have “Barry”, the port under the skin, was proving it’s worth as we didn’t have to worry about keeping a line clean, away from sand, sea etc.  George was able to enjoy the beach as much as his brother and sister, we’re still finding sand in his ears now to prove it.  Another thing that was also really helpful was our pop up beach shelter, twenty quid of Amazon.  Sometimes all the running around would be just too much, so it was great for George to be able to crash out of the sun (or typically for the UK, was perfect to get under when it rained!).

The dune of doom
The dune of doom

Hayle Beach was as beautiful as we remembered, the kids enjoyed boarding down the dunes, building sandcastles and paddling in the shallows.  Picnics on the beach each day made saved us a fortune and a couple of beers whilst we were down there made the honeymoon with 3 kids a little more relaxing!

Oliver is less of a paddling in the shallows man, and more of a bodyboarding in the waves kind of guy.  Damien and Oliver boarded most days whilst I watched excitedly…. or maybe I sunbathed….

Oliver bodyboarding
Oliver bodyboarding

Obviously it poured down on a couple of days, we had to be reminded that this was not the Mediterranean cruise we booked.  Being surrounded by sunburnt Northerners wasn’t enough no, some classic Warrington rain was sent our way as a cursory reminder to appreciate the sunny days.

 

Harriet and "Catherine"
Harriet and “Catherine”

What we saved on eating sandy butties on the beach each day, we basically paid the arcades’ overheads for them to remain open until next season.  Harriet spent about fifteen quid “winning” her Catherine and Claire teddies which I suspect had been in the site’s gift shop since the names Catherine and Claire were trendy for young children.  Oliver spent most of his time being a lurker, waiting for some poor kid is robbed of their last 2p at the 2p machine… only to jump straight on and make a killing – and what shall we do with 48p’s worth of 2p’s? let’s put them all back in again!  Georgie was happy squirting water at duckies or just blatantly buying sweets with his spends and gorging on them.

 

Paradise Park
Paradise Park

On another grim weather day we donned our cagoules and hit the local bird of prey sanctuary, Paradise Park, and was pleasantly surprised.  It helps that Harriet absolutely loves birds.  We avoided taking George into the aviary where Oliver and Harriet fed little parakeet thingies, not only because it’s like a scene from “The Birds” and he’d probably freak out but just in case there was anything that would make him ill.  The kids met penguins, owls and there were even flamingos walking about – beats the seagulls as big as dogs that we were used to back at the campsite!

Kite flying
Kite flying

The children flew kites and the big boys enjoyed the surf on the very windy days.  Harriet would run like a maniac in the wind and George and I would cuddle up and appreciate our windbreak and beach tent.

We changed it up with some rock pooling at Godrevy on the first week, it wasn’t as successful as last year but just as much of an adventure.

Rockpooling
Rockpooling

Oliver and Harriet liked running around the rocks and coves while the tide was out and splashing in the clear pools while George would sit with his little net in a rockpool “fishing” like a gnome.  Some standard wave jumping as the tide came back in violently before we did the five minute drive back to our site for some tea.

One beautiful evening we walked up to the top of the dunes to watch the sunset with a picnic blanket and a bottle of champagne and glasses.  The sky was perfect, it was lovely and still and the ocean was calm.  We opened the bottle, let out a little cheer, sipped the froth from the chilled bubbly then promptly had to help Harriet squat in bushes while she went for a p*ss.  The kids ran around kicking sand at us, George screamed when he didn’t get his own way and Oliver went missing.  You can imagine…. but of course we smiled for the camera anyway and pretended it was hours of romantic bliss rather than the 7 minutes approx.

 

It wasn’t quite a Royal Carribean Cruise but we did manage to book ourselves on a Mermaid Pleasure Trip in Penzance.  The skipper was lovely, he let the children drive the boat, they pulled lobster pots, we saw seals at Seal Cove and got to see St Michaels Mount from the water.  What made the day extra special though was the small pod of dolphins that came swimming along side us… The guys on board put a device under the water with a speaker which allowed to listen to the sounds of the dolphins communicating, it was so special and absolutely made our day.

The skipper chatted to George and found out his love of the emergency services.  He kindly arranged for us to visit RNLI Penlee Lifeboat station in Newlyn a few days later for us to go aboard their Ivan Ellen lifeboat.  Coxwain Patch Harvey, was lovely, taking time to chat to the children about the boat, how it rights itself in 3 seconds if it ever overturns!? showing us the engine room and letting the children sit up at the bridge… it was humbling to learn how many of the local fishermen and people in the community run the lifeboat station voluntarily!? and are on call night and day in shifts… what amazing guys taking time out to help people, risking their own lives, so selfless.

We crabbed in Penzance too but spent most of our time seagull dodging and came away stinking of the bait.  Kids enjoyed catching seaweed though!

The second week of our holiday got even better when our good friends arrived with their children!  not only was it fresh faces for the kids to play with but there’s only so much of my crap Damo can listen to.  The kids were so happy to see each other and it was nice to have a wine buddy for after we’d hit the waves 🙂

There was more dune surfing, fits of laughter, beautiful sunsets, shooting stars and a day trip to Falmouth where we got to see the Red Arrows display! George spent most of it with his hands over his ears as usual.

The holiday was perfect and just what we needed, with the comfort of still being in the UK for George’s sake but still magical and memorable.

This evening George is in hospital with Daddy being checked as he’s spiked a temp for a second time since we’ve been back.  We’ve been in for a consultant appointment twice too to have his chemotherapy altered as his white blood count isn’t recovering quite as fast as we’d like.  The doctors aren’t concerned and feel he has a lingering virus (he’s had a bad cough for 3 weeks now) so have reduced his chemo to allow his own body to work it’s magic.

Georges wisps of hair
Georges wisps of hair

George’s next consultant appointment is on his first week at big boys school! I can’t believe we’re at this point already, it was something I couldn’t even compute not so long ago. His first day is going to be particularly poignant in this house, I’m sad he’s not going to be my little buddy at home any more, I’m worried for him like all the other parent’s will be for their babies… but he shouldn’t be having to undergo treatment for cancer, it’s not fair.

We’re hoping the next few years of maintenance will be kind to George and that we can continue to have more happy times as a family than difficult ones.  We’re made up we got out 2 weeks familymoon and for now we’re enjoying the last days of the holidays at home together around hospital trips and preparing for all three children going to school… looks like George might even have some wisps of hair for his first day too!

xx

 

George is in Maintenance!

A treat to celebrate maintenance

Bring on the Maintenance!

Last week George had a blood test to check whether he was good to move into maintenance and we got the call on the same day to confirm all was well.

On Thursday we had an appointment with one of the Consultant Haematologists, Dr Keenan.  He checked George over as he has a little cough and some strange loss of pigment on his skin in patches on his tummy – we’re keeping an eye on this as it’s not something he’s come across before.  The main reason for the appointment was to officially move George into the “Maintenance” phase of his treatment.

Maintenance will run in cycles, but essentially is the remainder of the treatment for Acute Lymphoblastic Leukaemia – it’s working on preventing the return of the cancer cells.  Some of the chemotherapy that George will receive during this phase will be administered orally by us at home.  He’ll still need to go to hospital every fortnight to have blood tests and be seen by a doctor, the doctor can then prescribe the appropriate amount of chemo for the following fortnight and so on.

Nuts
Nuts

It doesn’t reach the nuts!

The chemotherapy George has at home (Mercaptopurine…. or chocolate medicine as he calls it!) does not reach his his nuts!  So the consultant had to give me a demo on checking his boys bits (on George this is btw!!) which we have to do on a weekly basis… any slight change in size, lumps, bumps or tenderness and we have to take him straight back to hospital.  Relapse in boys testes is more common than anywhere else.

Nor does it reach the brain!

The chocolate chemo medicine also doesn’t reach the brain so George will still be going to theatre every three months for the next three years to have intrathecal chemotherapy.  This is chemotherapy into his spinal cord via lumbar puncture so that it can treat the central nervous system where the other medicines don’t reach.  He’s been having this frequently up until the “break” he had, if you remember reading about him not being allowed to sit up after theatre earlier on when things were quite traumatic.

Everything covered

So we’re feeling pretty confident that everything is covered… a small number of leukaemia cells can survive everything that has been thrown at it up until now but this next few years will hopefully be wiping them out completely.  Relapse can happen at any point, but it is more likely to occur the year after the end of treatment – so 2019-2020!? we’ll never be free of the fear that it can return and will be living with the uncertainty for many years.

Wild
Kids being wild

Living!

Relapse doesn’t bear thinking about much further, we’re happy to be where we are right now.  The key word in the last paragraph for us is living – living life to the full because you don’t know what’s around the corner.  Cliche I know but it’s never meant more.

I asked Dr Keenan what the phase of treatment means for us a family now, and he basically told us go live our lives.  There are certain precautions we need to take, but that he, and the rest of the doctors, will do their utmost to allow our little boy lead as “normal” a life as possible.  I’m not usually a fan of “normal” but it’s sounding pretty good right now.

Barry, George’s port will still need a flush every month, we’ll still have theatre every few months, doctors appointments and blood tests fortnightly and will still be heading to Alder Hey with temperatures if George falls ill but this is what life is for us.

Where are we?
Where are we?

Maintenance Day 1 – LegoLand Windsor

So to kick the official first day of maintenance off on Friday, we took advantage of Oliver and Harriet being off school for Warrington Walking Day and visited LegoLand Windsor!  you all know what a fan of Lego our Georgie is, so he was in his element.

We arrived at Legoland and as directed spoke to Customer Care who gave us 5 QueBot passes to allow us to fast track through every ride.  It was fantastic… not only so that we could make the most of a good variety of rides for our all three of the kids but what a lovely touch by them? We knew this meant no standing around in queues with strangers where there’s the risk of George catching something contagious.

The kids were adamant they were going in the splash park regardless of it being pretty chilly when wet in the wind!  It’s for times like these we’re glad we have Barry the port and not a wiggly tube on the outside.

George and Daddy went off for a little Lego shopping later which gave us a chance to hit the faster (and wetter!) rides.  Oliver and Harriet loved it!

Day 2 – Family stay

Fire engine!
Fire engine!

We also had the pleasure of staying with family on the way there and back.  Thank you to Aaron and Dee for putting us up and putting up with us 🙂 we were outnumbered by little legs and survived!

We even got to visit cousin Teddy’s little school fete which happened to have the local fire service present and a FIRE ENGINE!?  could things get any better for Day 2 of Maintenance!  George predictably went straight back into his shell but what a lovely guy the fire fighter was, he persevered showing George the jaws of life, buttons to turn the flashing lights on etc.  and low and behold since we’ve been home he’s been chatting all about it.

Hold on tight

Oliver and Harriet and their little cousin Teddy got stuck in at the fete too, meeting the local police community support officers, playing games and eating lollipops.  We finished off our stay with a beautiful lunch on Saturday afternoon at a local village pub.  The kids ran wild in the sun, ate well, played on the swings, threw themselves down hills, chased each other, laughed and well….. lived.

The crew
The crew

We’re looking forward to the rest of summer 🙂

Strongest treatment out of the way and a new chapter beginning

Fighting fit
Fighting fit

This week was George’s final week of “Delayed Intensification” <fist pumps the air>  I’m breathing a sigh of relief that his treatment should never be as strong as it has been over the past couple of months.  Barry the port will never receive chemotherapy again… I’m sure of it.

Maintenance

We do need to keep Barry (the port) though as George will still be receiving oral chemotherapy for the next three years.  Access is still required for giving him blood transfusions if he needs them, taking blood for testing and giving him fluids/medication if he’s ill or experiencing bad side effects.  We will be going to Alder Hey every fortnight for a blood test followed by clinic the next day (also at Alder Hey!) for an appointment with a doctor to adjust the chemotherapy dose based on his blood test results.

George will still be going to theatre under general anaesthetic for spinal chemo and bone marrow aspirations every 12 weeks for the next three years too… so while this phase seems like nothing compared to the last 6 months, it’s a long slog.  This phase of treatment is to prevent relapse.

Who the hell is Barry?

Just a reminder of who Barry is for those who only joined us more recently.  The lovely nurses at Alder Hey encourage the children to name their line that’s inserted into their chest.  George being George couldn’t choose something cute and friendly sounding… without thinking he just said “he’s called Barry”.  He’d named a Shopkins toy he had “Barry” the day before whilst playing something silly with our friend Nic, he got a lot of laughs so that’s it now.  The nurses say they’re giving Barry a drink or a wash or some medicine.

Fundraising Heroes

Haynesy still in one piece!
Haynesy still in one piece!

This week Damo received a cheque for funds raised by his good friend Haynesy back in Norwich.  Haynesy successfully completed a biathlon 21st May, running 15 miles around Norwich followed by a 50 mile cycle from Trowse to Beccles in Norfolk and back.  We just want to say thank you for thinking of us and well done for completing it in great time! 5 hours 43 mins!

We know you and all of Damien’s friends down there have felt pretty helpless at times so we just wanted to assure you that you have made a difference – starting with Legoland this week!  George (and Damo’s) favourite pastime in a theme park!

We’ve also had many friends taking part in Pretty Muddy Cancer Research events over the past few weeks too, thank you to all of you who ran for George.  I know there have been at least 5 of you with Georgie Roo on your tops, I’m glad I wasn’t there as I’d have been an emotional wreck!  Just want you to know we appreciate it girls, we’re very proud x

Proud of Lady Harriet and friends

Harriet
Harriet

Speaking of being proud, myself and some of the other mums from school are in the process of organising a sponsored hair cut that our daughters have chosen to be a part of.  Harriet and her friends are going to be having at least 7 inches of their hair chopped off in order to send on to The Little Princess Trust.  Their hair will be made into real hair wigs for children who have lost their hair as a side effect of their cancer treatment, like George.

Any funds raised will also go to The Little Princess Trust to help pay to make the wigs.

George being the age he is, and being boy, has not had to suffer the same emotional trauma that young girls go through.  Bearing in mind this on top of everything else! the painful, uncomfortable treatment, the diagnosis and uncertainty – hair loss may seem small in the grand scheme of things, but for young girl (and boys really) it’s like their identity is taken away as well.

Given the amount of brave young ladies we’ve met since George started his treatment, we felt it would be the least we could do.  I think it will also help Harriet feel like she’s a part of something positive too 🙂 she’s so pleased that quite a few of her friends from school are joining her.

What’s next?

This week we have a blood test and a consultant appointment at Alder Hey to tell us what happens from here on in.  Maintenance officially begins on 1st July and we hope to spend the day celebrating with the children.

Graduating from preschool
Graduating from preschool

The little graduate

Tissues at the ready, I cried when Michelle, the photographer that works with Playdays, handed me this photograph.  I cried because of how beautiful it is, how she’d been so kind to have it put on a canvas.  It will always remind me of the fight my little boy was battling when it was taken.  His hair had started to fall out at this point and Michelle came along even took a few special photos of George with his friends too.

George is “graduating” from Playdays next month for another big phase of his life as he transitions into school.  We’ve got his graduation to look forward to, taster days at school and uniform to try on!  I can’t believe how quickly it has come around or that I’ll have THREE school age children by September.

I’m sad that this huge chunk of time has passed with so many hospital trips, treatment and worry when he should have developing like all the other little ones to prepare him for “big school”.

However, it feels right for him to be moving on with all the children he’s established friendships with, for his sanity and mine!  I know I have nothing to fear with his big brother and sister being around, he’s also got 15 friends from Playdays moving up with him who have known him right through all of his.  They accept him for who he is and treat him like everyone else 🙂 We’ll have the parents moving up with us too (thank God!), who have been there to give me a reassuring smile or hug at the Playdays door…plus the parents of children in the rest of the school who I’m lucky enough to call good friends.  We’ll just be sad to not be in the care of the wonderful staff who go that extra mile.

George is probably going to have hundreds of new big brothers and sisters looking out for him come September, we love the school and the teacher he has.  It’s a whole new chapter that he’ll  take in his stride just as well… and if not, we’ll adapt and wing it as we go along.

Lis x

 

Well deserved happy times

George under the awning
George under the awning

What a blinder of a week… to say it’s been refreshing is understatement following our week in hospital.  George was allowed home on Thursday just gone as he was able to eat a little more, drink and his temperature hadn’t crept up.  He has gradually become more energetic, his appetite is well and truly back and he’s functioning like a normal three year old (apart from walking and moving like a little old man).  It’s been so heart warming and we’ve appreciated every single minute of it.

 

The garden is just about finished… there’s just some work where the BBQ is going to be that needs finishing, there are some lights to go in and we need to attach a few more of the kid’s things to walls etc.  We’ve had a lovely few days in it since the weather has been glorious and have had the awning out too to protect George from the sun while his skin is more sensitive on chemotherapy.

Oliver and Harriet at Woolston Hub pool
Oliver and Harriet at Woolston Hub pool

I managed to take Oliver and Harriet swimming towards the back end of the week last week, we had lunch out and they’ve played out in the sunshine with friends.  Oliver even had a sleepover at his mates on Friday night, much to his delight.

 

Georgie putting out fires
Georgie putting out fires

George is really enjoying pretending to be a fireman with the garden hose – this is a novelty as we never used to have an outside tap.  He’s given the flowers a “drink of water” at least twice a day, luckily they’ve needed it!

George and Finly enjoying a Kinder Egg
George and Finly enjoying a Kinder Egg

We’ve had Finly from next door round for a play and our friends came round for a sneaky peak and a glass of wine or two with their children on Saturday night.  It was great to get out there with somewhere to sit and somewhere safe and clean for the kids to play.

 

Sunday we had more relaxing in the garden and then a BBQ at our neighbours.  George had a ball playing with his friend Casey.

kerryharriet
Kerry and Harriet

Harriet and her friend Kerry have decided they wanted to do something for George and for little girls suffering from the effects of chemotherapy by going for the chop and donating their hair to The Little Princess Trust.  Myself and Kerry’s mummy Zoe are very proud of the girls for such a selfless act at a young age.  If you’d like to support them you can do via this link.  We’ve actually had a few more recruits from the children’s school now hoping join in the big chop!  Thank you for being so thoughtful too Grace and Olivia (Wilson) – There will be another post to follow on the big day for all of the girls xx

We’ve been over to Alder Hey this morning for his bloods to be taken to see how we’re looking for his treatment continuing this week.  We had everything crossed as we didn’t want it delayed and further and just wanted him to be well enough, he seemed it on the outside anyway!

Theres our George!
Theres our George! smiling at Caseys house

So at 4pm we got the call saying everything great for treatment to continue, his neutrophils are 4.1 up from 0.4 which is a great recovery (that’s his white blood cells that fight infection) and his platelets are over 600.. they are his clotting cells and the lady on the phone said he has so much he could share some out!

This funky chicken also enjoyed playing with the hose!
This funky chicken also enjoyed playing with the hose!

We’re good to go, this Wednesday he’ll head in for 10am for his longest period on a drip for treatment so far – five and a half hours of chemotherapy and fluids.  We’re anticipating side-effects, I just hope that whatever they are, they’re not as painful as last weeks.

Following this treatment he’ll have a nurse coming to us at home for 4 consecutive days a week to administer more treatment through “Barry”.

Daddy and George this evening
Daddy and George this evening

Feeling a bit apprehensive for what lies ahead but glad this week is going ahead now, even if the side effects are potentially going to clash with his birthday next week 🙁  we’ll see though, he might surprise us.

 

 

Lis x

Keeping going one day at a time

Feeling hot sorting lego
Feeling hot sorting lego

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

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

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

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

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

Always time for Pip
Always time for Pip

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

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

Bacon cupcakes!?
Bacon cupcakes!?

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

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

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

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

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

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

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

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

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

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

Happy Harriet, Great Manchester Run and Georgie feeling blue

Well chuffed with her animal rubbers
Well chuffed with her animal rubbers

Myself and Harriet got out for the day for some much needed girly-time on Saturday.  We both had a lovely time and Harriet chose few little treats and spent some of her own pennies on stickers and paper.

Jenerics and their Georgie banner
Jenerics and their Georgie banner

We went into Warrington Town Centre to the “Around the World in 80 Traders” event to support Jenirics and have a cheeky Chinese lunch – delish!  We saw a familiar little smiling face on the stand on a banner – our Georgie.  It was a shame the rain poured but it wouldn’t feel like home without the torrential downpours would it?  Thank you so much to the Jenirics team for your support, you are an amazing family.

It was funny at the face painting lady, Harriet deciding what she’d like to be….a princess? a butterfly? a bunny rabbit? flowers with sparkles?  No.  A penguin.  I’m not sure the lady gets many requests for penguins.  Typical Harriet.

Penguin on a bucking bronco
Penguin on a bucking bronco

So painted as a penguin she rode the bucking bronco like you do.  We enjoyed watching some outdoor theatre and had a look round town for a new dress….realising our freshly painted penguin probably shouldn’t be trying pretty dresses on, we started to head home.

The penguin enjoying the rocky road
The penguin enjoying the rocky road

I remembered that a friend of ours has just opened their new little art cafe near home so just had to stop off for a milkshake and a decent coffee.  R’Teapot is a gorgeous little hideaway on Bruche Heath Gardens serving the best rocky road I have ever tasted!! i’m talking turkish delight and everything.  It’s cosy and welcoming and we’re looking forward to spending more time there over the coming weeks with friends.  Congratulations Nat and family for creating such a gem and following your dreams x

It was nice to get out away from home for some time my little girl, we both needed it.

Later on, Harriet and I “popped round” to one of our neighbours for a catch up and for Harriet to run amok with the kids.  I did my usual when I start telling a story and leave the house hours later having not even reached the conclusion!  Thank you for hosting Andrea and for the vino, the laughter was great medicine 🙂

Our runners Shannon and Nikki
Our runners Shannon and Nikki

On Sunday I went to watch my baby sister Shannon, and my lovely friend Nikki, take part in the Great Manchester Run.   They were both raising funds for our family and for charities that have helped us since George’s leukaemia diagnosis in January.  They both ran through the torrentials to an emotional finish where we were waiting for a big hug and then went for an obligatory cocktail in a nearby bar.  They’ve inspired me to do the run next year… I better get training!

Gollum
Gollum

I felt like i’ve hardly been at home this weekend, hats off to Daddy for sorting all three kids yesterday while I had a day off.  With being out and about and everything going on, I was shocked last night by the amount of hair George has now lost.  He’s gone from “Hitler” to “undercut” to “Gollum” to “toupee in a side wind” in the space of 48 hours.

The hair loss doesn’t mean he is getting more sick or anything, in fact he’s got less of the awful disease now than when he had a full head of hair at diagnosis… I think it just constantly reminds me what he’s going through when I look at him, so it has bothered me more than I expected.  The only thing that seems to be upsetting him about it is the fact that its in his mouth and eyes all the time.  He’s feeling too rough to care what he looks like.

Toupe in a side wind?
Toupe in a side wind? trying some spagetti

Today has been another emotional roller coaster – and it’s probably more me than Georgie.  He hasn’t been constantly crying like Friday, but his mouth ulcers are worse and the steroids are in full effect so is very hungry all the time.  He’s just not himself, he’s carried a mini sausage roll round with him all day that he was desperate to eat but just couldn’t chew 🙁 he’s been very quiet, lethargic and telling me his mouth is hurting.  He’s been on morphine all day and I had to call the community nurse at lunch time to come out because I was worrying about his breathing.  It seemed shallow and he’s got quiet a nasty cough, then I literally thought I had to call an ambulance during one of his coughing fits because he was going blue and seemed like he couldn’t breathe.

He cleared a big mucousy lump and got his breath back and the nurse came not long after.  Luckily my friend Nic was here (delivering an order of sausages for the little man) and Laura had popped round too to see if could manage some noodles.  The nurse did a thorough check, listened in, checked his pulse etc and felt his breathing was fine.  Now I’m questioning my sanity and whether i’m overreacting!

The nurses have said they are going to start making regular visits to check on us and answer any of my questions that I’m currently having to save up until the next hospital visit.  I had felt quite isolated being sent home with George initially, I mean on the medical front.  We can’t take him into a GPs surgery with a load of sick people and Alder Hey, amazing as it is, is a long way away and a very busy place when you have a concern or question.  Once George had started going back to preschool though and he wasn’t suffering too much, I felt ok.  It’s now that we’re in the midst of the intense phase, we need the nurses here, they’re such lovely people too, I instantly relax when they’re around.

The lovely Clare dropped a spag bol off earlier which helped immensely, I haven’t had time to do a food shop and haven’t left George’s side all day to cook anything.  So after a long day at work, Damo came home to a decent meal! I could’t pass it off as my own unfortunately as my trademark ‘burnt’ wasn’t one of the ingredients.  Thanks again Clare x

Smiling Georgie
Smiling Georgie

We had a couple of nice moments when George managed to play with Lego today, he was also very happy to have a snuggle with Daddy when he got home.  I managed to capture some of his smiles – he looks like his normal self with a cheeky grin 🙂

Hopefully we’ll get out to water some of our plants in the garden tomorrow, George loves doing that.  The guys have been here today installing a garden tap and putting the new fence posts and panels in.  It looks ace! Thursday the grass goes down and maybe at weekend we might get the canopy up.  We’re really looking forward to getting out there to enjoy it.

Another few days done, we’re not in hospital this week (fingers crossed!) and are just taking each day as it comes.  Hoping for a some more comfortable days for George x