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

 

 

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

 

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

At diagnosis
At diagnosis

Well where do I start… eight months ago we were rocked by the news that our baby boy had cancer.  Nothing else mattered at the time but loving and supporting all three children through what was plainly the most difficult thing we’ve ever had to deal with.

It felt like the shittiest card to have been dealt but we got on with it.  We took each day as it came, each hospital visit, side effect from chemotherapy, emotional outburst from one of the kids and we held it together as best we could.

Our previous plans for a wedding and honeymoon paled into insignificance compared to this new turning our lives had taken.  Not only did it just not matter so much, but we blatantly couldn’t afford it with less income since I gave up work to be on hand for George’s (and Oliver and Harriet’s!) care.

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

Months passed, hard, emotional and testing as George’s treatment has been, we kept as positive as we could and decided to plan something fun for the kids on the day we had originally planned on marrying.  We didn’t want the day to come and go with sadness, plus we wanted to thank all of our friends and family who had been there for us through thick and thin.

The Black Swan in Rixton confirmed they would love to support and host “Roozafest” for us, they loved our idea and we set about planning the Fun Day, together with Stuart, the manager.  I was thinking the outdoors, bunting, cakes, bouncy castle for the kids and balloons, a bit of a fete vibe going on.

bouncy castle
bouncy castle

All of our guests were told to bake a cake and bring it along, we were having a “Bake Off” competition that the children were going to judge.  We had in mind that we’d probably do a speech and little toast to everyone at some point too.

The cakes
The cakes

I can’t remember the exact moment we decided to add in a sneaky surprise but I know it was before George’s birthday… he had a stint in hospital around the time and I’d started to wobble about the whole idea.  What if he was too ill!?

Don’t get me wrong there were times I worried about other things, the weather, guests not showing, upsetting people…. but then I had a word with myself, we had no control over those things, so I began enjoying organising bits and pieces around George’s treatment and everything going on at school for Oliver and Harriet.

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

The Black Swan, Rixton was out of this world for support, from the offset the manager, Stuart, took on most of the organising which left me free to concentrate on George’s hospital trips. I turned up the day before Roozafest frantic about the torrential downpours forecast and Stuart reassured me that they’d got a back up plan in the form of a marquee!  something they’d sorted out of the goodness of their hearts as we were planning on just using the field… all of the staff were super supportive and so discrete.

Laura Linley of Linleys Cake and Party shop, a mummy from the kid’s school and friend, helped sort balloons, bunting and was there to bounce ideas off… she also created our surprise bake off entry 😉

Guests arriving
Guests arriving

So on a rather wet 28th July, at 2pm, our guests began to arrive. Ian Zippy Lees entertained the children teaching circus skills for the first hour and then a bouncy castle arrived.  Harriet was barefoot in her gorgeous dress in the rain having the time of her life.

The kids took over the play area and the adults huddled under the shelters and in the marquee at times when it poured while the music played – thank you to DJ Lee Valentinekeeping us all on our feet and even rapping!?

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

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

I was suspiciously glamorous on the day thanks to my friend and hairdresser, Amy Scott, who took time out of her own diary to give me a trial and then put my hair up at the crack on the morning.  The girls at Akira in Padgate, who also helped make the build up to the day special, were so lovely! My nails and make up were perfect and had a great time coming in for a pampering.

Fizz!
Fizz!

So after welcoming most of our guests to the party and a couple of glasses of dutch courage later, our plans came together.  Stuart got everyone’s attention to gather in the marquee for Oliver was about to read a poem and announce the winner of the bake off.  Harriet and I nipped off without anyone noticing with my good friend, Kath, chief dress fastener, as I needed a quick costume change.

Kath bolted as soon as her job was done and I paced anxiously in my dress up in my room in the hotel with the windows open listening to Oliver’s voice over the PA system – emotional wasn’t the word and it felt even worse not being down there with him!  Harriet was happily skipping around the room on another planet while I necked a glass of prosecco and tried to fan some cool air from the open window.

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

Oliver’s poem had gone from a thank you poem, to announcing the winner of the “bake off” to “there’s just one thing I forgot to mention, we’ve got another cake that will grab your attention” cue the gorgeous wedding cake making an appearance and Oliver telling everyone they’re actually at a wedding.  I heard the roar of cheering and applause and had a little sob knowing this is it!

I must have walked out onto the landing of the hotel twice being impatient only to be told they’re not ready yet… I remember thinking Oliver finished his poem ages ago, what’s the hold up!?  What I didn’t realise was that The Black Swan had organised flowers, illuminated lighting and dressed the marquee while I was upstairs… they got our guests involved reorganising the place and making it pretty.

Big arrival
Big arrival

I walked downstairs and some of their lovely staff helped lift my dress off the grass to the start of the red carpet when our wedding song began “Tenerife Sea” by Ed Sheeran.  I had no saliva left at this point as Harriet marched in front with her beautiful flowers (courtesy of 2lips in Stockton Heath).  Our guests were all teary and smiling as I passed them and I got about half way and had to cry myself too… I’d made eye contact with too many people I cared about.  Damien, his best man Haynesy and the boys all looked dapper in their newly attached bow ties it suddenly felt about 100 degrees!

ceremony
ceremony

Rev Gwyn Parry was brilliant, the Order of Service he organised worked perfectly for us, incorporating our own vows and bringing the children into our prayer at the end – thank you so much for taking time out of your own schedule to make our day so special.

Group hug
Group hug

Following the ceremony there was obviously a lot of cheeky smiles, tears and long embraces.  The BBQ opened, the children were happy, the unpredictable weather became part of the fun and the bucking bronco arrived! – what else do you want at your wedding?!

The rest of the evening involved Mr Rooza’s speech, the first dance, a lot of laughter, fizz and feral kids.

Mr Rooza on the bronco
Mr Rooza on the bronco

Our wedding, because of the kind hearts of others, didn’t break the bank.  We could never have had a such a special, romantic and meaningful day even if we spent all the money in the world on it.  Thank you to all of those involved in making our day perfect, for organising, attending and wishing us well since…

Our first dance
Our first dance

Our son’s leukaemia diagnosis has brought us all closer, we’re grateful we are able to share such special moments with him and continue to live our lives to the fullest we can.  Thank you to the handful of friends who helped us pull this off, Oliver for your super confident reading, Harriet for being the barefoot free spirit you are and thank you Georgie for teaching us how to be brave and reminding us what love really is xx

 

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

Brave girls and mad Hatters

A few months back Kerry, a lovely little friend of Harriet’s asked if she could get her hair cut to raise money for George.  Harriet jumped at the chance of doing some fundraising too and together with Kerry’s mummy, we started our little campaign.

George with Erin, happy in her Little Princess Trust wig
George with Erin, happy in her Little Princess Trust wig

It became obvious after a few days that there were more little girls in the school who also wanted to get involved and our team grew.  We’ve organised ourselves this week, finalised the details and confirmed we’re choosing The Little Princess Trust, the charity who create real hair wigs for children with cancer, to raise money for and to donate the hair to.

George and I met a lovely young lady at Alder Hey not so long ago called Erin, who also has Acute Lymphoblastic Leukaemia.  She had lost her waist length hair within weeks of diagnosis and had received a gorgeous real hair wig from The Little Princess Trust.  We’ve seen first hand what a difference it’s made to that little girl – imagine what it must be like as a ten year old girl losing all of your hair.  TLPT also help children who’ve lost their through other conditions, like alopecia.

Our team has grown and there are now FOURTEEN very brave girls from Woolston Community Primary School  going for the chop – at least 7 inches of hair is being cut from each person plus there are three big sisters/local friends and two Mums getting theirs cut too!  That’s EIGHTEEN altogether!?

Harriet and her Race for Life medal
Harriet and her Race for Life medal

The school community and George’s preschool have been amazing at pulling together for us as a family, raising money for us and causes close to our heart.  This selfless act by a large group of girls/ladies is yet another positive story to add to our ever growing collection.

 

The fundraising page can be found here – Thank you to everyone involved – our Harriet, Kerry Hennie, Olivia and Grace Wilson, Kira Linley, Rihanna Thorpe, Libby Naylor, Erin Osborne, Imogen Cairns, Isla Dale, Payton Chesters, Charlie Fletcher, Katie Rudge, Abigail Shaw, Bianka Toth, Becky Coates, Charlotte Isherwood, Sarah Bursill and Michaela Hewitt! The photo of you all together with your bobs and ponytails in hand in a couple of weeks is going to be an emotional one… Harriet has such a gorgeous group of friends.

One crazy-excited Harriet
One crazy-excited Harriet

Speaking of Harriet and gorgeousness, she’s messy, quirky and a bundle of energy ALL of the time, traits that I wouldn’t change for the world (ok maybe when i’m hungover….), she has a huge heart and spends most of her time in a fantasy world full of “pink fluffy unicorns dancing on rainbows” so she tells me.  She’s barking mad, feisty and when we talk about how her day has been, she can always tell you something amazing that happened.  Even if she found a stone, named it Fred and it’s now in a special box in her bedroom!

What do you want to be? A penguin.
What do you want to be? A penguin.

There are days when she’ll share something that’s made her sad.  Her favourite teacher is leaving and she’s quite emotional about it.  It’s been a tough year for my little girl and I feel Miss Taylor has supported her in school just by being there for her when she’s been most vulnerable.  I know Harriet loves her to bits I just want to say thank you for all that you’ve done make life a little easier for Harriet, I know she’ll never forget you and I hope you inspire my daughter to travel one day too x

Inside Out artwork by Harriet Whittaker
Inside Out artwork by Harriet Whittaker

Here is a piece of artwork Harriet created recently which I think says it all really, it’s up on our wall and is the reminder I need sometimes that I can’t be doing too bad a job of being a Mummy.

It says “It doesn’t matter what you look like on the outside, it’s what’s on the inside that counts”

She thought of that herself and says it’s for her Georgie.

I know some people sponsored Harriet the last time I circulated a fundraising page (which has been added to this campaign!) but if you didn’t, and would like to, you can do so here.

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 🙂

Stop the roller coaster, someone’s been sick!

Toy fights and George coming in for the kill with his sword
Toy fights and George coming in for the kill with his sword

It’s been another roller coaster of a week – one minute we’re rolling round laughing, toy fighting and forgetting it all for a moment, the next we’re back to worrying, juggling the kids and rushing to hospital.

The football has been on and I’ve enjoyed watching Daddy struggling to watch a complete match with the kids knocking about.  It’s been a comedy sketch of climbing all over him or digging out the noisiest toys known to man to blast out just when you’ve settled down.

Daddy the climbing frame
Daddy the climbing frame

Thursday was the first day of a different kind of chemo called Cyclophosphamide that George has for four consecutive days.  He had it for four days last week following his 5 and a half hour one.  We’ve felt really relieved this week for him to not really suffer many side effects as I’d really built myself up and was fearing watching him suffer with those ulcers again.

George with his friends at PlaydaysInstead George was so well that he even managed a few stints at Playdays this week.  As you can see by the smile on his face, he had a great time and we’re glad he’s still getting to see his friends during the final weeks of preschool before, dare I say it, big school in September!?  The couple of hours gave me some vital time to do a bit of shopping for his birthday this weekend and a I even managed to get out for lunch with my friend Paula for a much needed de-stress.

Cling filmed up
Cling filmed up

On Thursday I’d starting feeling anxious about the nurse coming to access “Barry” the port with the gripper to administer his chemotherapy.  One of the main problems we have, as I’ve said before, is ripping off the bloody adhesive tape that’s used to hold the numbing cream on for an hour.  I changed it up though, Blue Peter style, with cling film and a very still child, we managed to apply the cream and leave it there under the cling film to take effect.  Ta-dah! no painful peeling of tape an hour later and a much calmer Georgie.  He was sat there “King George” literally being fed grapes watching his favourite programs.

Straight after the gripper going in
Straight after the gripper going in

Our good friend Nic came to my rescue to help distract George and make him laugh while the nurse prepared everything.  Even when the needle missed first time and he had to have it done again he did great, mainly because Nic was there clowning around and getting him back on track when he’d started to get upset.

Later in the day I did have to deal with an exorcist scene where George full on puked 360 degrees.  I still can’t say I enjoyed cleaning the cottage cheese veg combo up even if I was satisfied it was at least on the laminate floor.  He just got himself a wipe, cleaned his face and carried on playing, leaving me with tears streaming from wretching, having to clean it in 2 minute intervals so I could recover.

We also had a visit from Lynda of The Joshua Tree this week who regularly pops by to catch up with us and check I’m not rocking in the corner.  It was good to talk about how we’re all doing emotionally, how George is doing and just having someone who understands exactly what you’re going through listen.  Linda had very kindly brought some well-received gifts for all three children, of course it was Lego for George!

The Joshua Tree has been a great source of support for us so it’s been lovely to hear a few friends have chosen them as their charity to raise money for recently – I know Anthea is definitely one of them!

Linda from The Joshua Tree visiting
Linda from The Joshua Tree visiting
Anyone for a song?
Anyone for a song?

 

Strange how things happen, we’d been trying to persuade George to get cycling for ages and had pretty much given up for now, accepting his little are probably just too sore now.  But I think with a combination of practising on a trike at nursery and pure defiance, here’s a picture of him bike riding to pick Harriet’s friend up the other day…. defiance because i’d said “you’re not going to be able to do it George” (Mother of the year!), so of course he had to prove me wrong.  Yes that’s a man sized helmet for his huge Rooza-cranium.

Cycling George
Cycling George

I had the pleasure of meeting the teacher that George is going to have when he starts in Reception this September.  I briefly popped in to the school office and ended up chatting to her about what to expect… the idea was to reassure her that she’s not going to be responsible for doing anything out of her remit, but just what to look out for.  I told her about his diagnosis and how everything came about, how hard it has been and the kindness of others even right up to this day and and she was in bits bless her.  I’m so glad we had that conversation though, it’s really filled me with confidence that we’re doing the right thing for him… she is such a lovely, caring woman, I don’t think I’d want anyone else!

Andrea and Anthea visiting
Andrea and Anthea visiting

My friends Andrea and Anthea visited last week too, forgot to say!  Here they are listing every item from the Argos that George wants for his birthday… my soul is already destroyed from months of this!  Thank God it’s tomorrow and lets hope he’s been listening when I’ve said “you know you’re not getting everything right?”.

This morning George’s temp had jumped up to 38.4 so I off I went just after 7am to A&E at Alder Hey.  His temperature went up to 39.6 and his blood pressure and heart rate were elevated.  After a load of messing about we managed to get up onto Daycare after 9am and George was kept in for observations and blood tests.  If his neutrophil count is 0.5 or below he’s classes as ‘severely neutropenic’ and so would have to be admitted for 48 hours which obviously with a certain birthday looming we could really do without.  George’s count is 0.7 so is borderline due to the chemotherapy he’s on… throughout the day his temp hasn’t dropped to within a normal range but after thorough assessment and plenty of pleading from George, Kev, his ANP, agreed for us to go home on Calpol until tomorrow at 7am.

Having a little snuggle with his brother
Having a little snuggle with his brother

I wish I could say he’s been back to his usual self but he’s not unfortunately.  He’s complaining of pains in his legs, his eyes hurt, he looks like a beetroot and has a speckled rash.  These are side effects of the chemo too so we’re just staying put at home for now.  I did make a bit of a frantic call to Oncology a little earlier as his temperature is now hitting 40 and we were wondering at what point it’s too high to stay here.  We’ve been told to just follow our instincts pretty much so we’re keeping an eye on his breathing and checking his hands and feet aren’t feeling cold – it’s going to be a long night!

You can bet your money we will be in Alder Hey tomorrow, he’s got through the night to get below 38 degrees!  It’ll be a good story to tell though and more reason to drag out his celebrations.

A present from all George's friends on the Oncology ward
A birthday present from all George’s friends on the Oncology ward

Just a few more thanks for more lovely gestures from our friends – thank you for the box of Lego to the lady who is a friend of Laura Linley, I didn’t catch your name but George was so excited to build a big aeroplane!  and thank you Rachel Groarke, your girls are so thoughtful to think of Georgie even when you’re on your own holiday! he loves his message from Bradley and Rory from Hafan Y Mor.

Tonight, I’ve been holding off writing George’s birthday card because I feel overwhelmed with emotion when trying to find the right words to say.  I want him to know how proud we are of him for keeping strong, how much we love him and how much better his birthday will be each year from now onward.  He’s had dealt with more crap than most adults have had in their entire life, yet he still bounces back smiling, resilient and gives us so much back.  Seriously, I’m welling up just typing it.

Then I realise he won’t give a shiney shite when he realises he hasn’t received every item from page 1475 of Argos onwards…

So for now, good night, hoping for a decent night’s sleep and a boy feeling much better for some 4th birthday celebrations.

Lis xx

 

George’s latest chemo and Team Erin Cross

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

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

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

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

Erin Cross
Erin Cross

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

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

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

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

Oliver chilling
Oliver chilling

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

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

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

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

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

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

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

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

Lis x

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