Week 2 of Delayed Intensification…

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

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

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

Tickle time!
Tickle time!

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

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

Poorly Georgie :s
Poorly Georgie :s

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

Yay!
Yay!

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

Andrea and George
Andrea and George

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

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

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

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

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

Lis x

 

 

The new phase and the new bedroom

Georgie in his new room
Georgie in his new room

It’s been a very busy week following the St George’s Day toddle last weekend – a day that we’ll never forget.  What I’m finding amazing is how, at such a difficult time for us as a family, we’re managing to have some of the most beautiful, positive moments.

A great example of this is the transformation of George’s bedroom that’s also been happening over the last week.

A secret bed pulls out for Mummy or Daddy
A secret bed pulls out for Mummy or Daddy

We’ve had kindness from all directions for that too with our good friends, Ryan and Simone Norris, donating towards George’s new bed along with The Mark Gorry Foundation.  This has made life so much easier as his new big boy’s bed has a second bed that pulls out from underneath!  it means that whoever is on duty that night (cough, cough Mummy) can sleep comfortably by George and let the other get a decent night’s kip.

This is going to be particularly important over the coming months as George might be more sickly and uncomfortable.

Grey walls and fire engines
Grey walls and fire engines

George’s Nanny Jane and Grandad Tony bought him a new bedding and curtain set – covered fire engines of course!

The team at North Cheshire Construction worked tirelessly in their spare time to rip out the old room, remove the old nasty artex ceiling, plaster, paint, wallpaper, install new sockets, switches, skirtings and more….

Hallelujah for storage!
Hallelujah for storage!

We feel blessed to have such wonderful people around us and are eternally grateful to everyone.

George’s “Interim Maintenance” phase of treatment is already drawing to an end this week and we’ll be moving into “Delayed Intensification” next week… yeah it’s as grim as it sounds.

A LEGO gift off the builders!!
A LEGO gift off the builders!!

I’d intentionally avoided looking closely at what this next phase is going to include as it’s renown for being harsh compared to the current phase.  This next 7-8 week phase is going to hopefully eradicate any remaining nasties that are hanging about, then the next 3 years or so of chemotherapy are to make sure it doesn’t come back! well that’s my understanding anyway…

Debbie being a bit crazy!
Debbie being a bit crazy!

Luckily for George we have nurses like crazy Debbie to keep us amused each visit though.. this was George yesterday having a blood test – I’m so proud of him, he just cracks on even when his nurse is a bit nuts 😉

Tomorrow we’re back at Oncology clinic at Alder Hey to have the chemo that he has at home adjusted and prescribed.

Next week we’ll be starting with a blood test on Tuesday then depending on his blood counts, we’re back Wednesday for theatre (spinal chemotherapy), Thursday he’ll start back on steroids and have another two kinds of chemo through a drip for an hour or so.  He gets Thursday off but we’re back on Friday for an injection in his bum that he’s had before… he doesn’t like it (who would!?) but I think that might the last one of those he needs for this phase thank goodness.

Amongst all the above he’ll still be having his daily chemo at home and his weekend medicine that he’s had since the beginning.

Lisa and Olivver
Me and my big boy

So approach with caution next week, it’s Week one of eight for this phase.  I’m anticipating less sleep all round, roid-rage, a few more tears (all round!) and the peperami monster might be back… at least we have a cosy new bedroom to keep him smiling and how lovely was the message from the Swashbuckle crew today!?

There’s more excitement happening this weekend with Oliver and I taking part in Gung Ho Manchester on Saturday morning with some of our lovely friends.  Our target for our garden has been met before we even managed to take part!? a testament to the support we obviously have out there!  I’ll still be updating on how we get on as Oliver’s really looking forward to doing his bit and embarrassing his Mum!

Lis x

A message from the Swashbuckle crew!

We have one very kind friend for making this happen (thank you so much Carly!!), but also thank you to “Gem, Cook and Line” for such a special message for our George – you are all wonderful people at Cbeebies, it made me cry!

George was shy when he first watched it and covered is eyes peeping through his fingers, I think he was starstuck bless him xx

The fundraising abseil and gorge walk – Success!!

Today was an amazing day.  Myself and my beautiful friends walked up a gorge an abseiled off a 90ft bridge.  My friends had been raising money over the week to help us fund a project to makeover our garden for our children to enjoy.

Fun bus!
Fun bus!

The day started with sunshine and bacon butties at Sarah’s house and a drive in our fancy minibus courtesy of Beth.  We drove into the Peak District to meet Malc from Truth & Trust Adventure and headed to the gorge location.

Cheese in the waterproofs
Cheese in the waterproofs

We changed into our attractive wetsuits and waterproofs and set off feeling excited! well I was, I know some of the others were a little apprehensive.

A few of us took a dip and there were definitely more than a few bruises earned as we moved up through the gorge on the slippy rocks and waded through the freezing water! it was good fun 🙂  The highlight was most definitely Claire scaling the waterfall…she was rather vocal, lets say! and Carly bailed so many times that Malc started pointing out slippy rocks to her directly.

We got to a point where it was time to head back to dry and change as there was a bit of a drive ahead to get to Millers Dale Bridge at the Monsal Trail.  That was interesting, all 8 of us at the side of the road trying to remove waterproofs, wet clothes, wetsuits and underwear to change into dry things!

We parked at the next destination and ate our lunches, Kath being Kath had a surprise bottle of fizz up her sleeve and even mini glasses – call it dutch courage.  We ate our “buffet” and followed Malc to THE bridge.

Then I witnessed some of my closest friends, scared to death of heights and completely out of their comfort zone face their fears and take that step over the railings of a 90ft bridge.  I think we were all expecting to brick-it a little… may be some more than others… but I was in bits at times just watching my amazing friends, some of whom were frightened and in tears, challenge themselves.  For me, for my family and because YOU were kind enough to sponsor them.

Claire receiving a well earned hug from me x
Claire receiving a well earned hug from me x

There were some lovely moments down underneath the bridge reeling each other in and giving a great big hug for whoever needed it.

It has been a very emotional day in more ways than one, we’re all knackered and I can’t tell you how proud I am of everyone.

The icing on the cake on the way home, once we got some signal and 4G was that our fundraising amount had hit £2250! that’s an astonishing amount in such a short space of time…. and I owe it all to all the lovely friends and family who have donated so far, and the donations raised by my girlies – Dawn, Claire, Sarah, Yvonne, Beth, Carly and Kath, thank you for everything, I love you very much x

 

A bit off-piste…

Yesterday George had his appointment at Alder Hey for IV chemotherapy called Vincristine.  His port was accessed last week after a dash to hospital with a temperature and the gripper had been left in so we weren’t too nervous about further needles.

George looking out at a helicopter
Ooooohh
Whilst waiting in clinic we got to see a helicopter land on the helipad much to George’s delight.  Luckily we’re far enough away to not really see what’s going on with it’s poorly passenger.  He was amazed and it kept him entertained for a good 20 mins.

We were one of the last to be seen as we arrived later than usual as we needed to drop Oliver and Harriet off with friends (thank you to Ruth and Nic for helping again!).  We went through to the doctor a little later and George was on form dancing and playing, full of beans.

George had been off his chemo medication that we administer at home for two weeks while his bloods recovered, so I was expecting for the mercaptopurine (chocolate medicine as he calls it) to be prescribed again and continue.  The doctor explained that his recent blood tests hadn’t recovered as much as they’d like so he’d have to stay off that chemo again… she had also added George to the list for a bone marrow aspiration next week which wasn’t part of the plan.  He’ll be in for bloods tests again on Wednesday to see where they’re up to and check he’s well enough to go into theatre.

In the cosy coupe on the ward
In the cosy coupe on the ward
Anything that crops up that’s unexpected is always going to be worrying but i’m keeping positive for next Wednesday.

The doctor also listened in to George’s chest and felt she could hear something so prescribed some antibiotics as a precaution.  He does still have a cough but no temperature so we didn’t have to stay in and fingers crossed, whatever that is may be what is effecting his blood count.

Nurse removing George's gripper and dressing
Nurse removing George’s gripper and dressing
So the Easter school holidays have been interrupted a little more but this is the nature of treatment for childhood cancer.  We can’t plan or predict what’s going to happen next and unfortunately Oliver and Harriet are also getting the brunt of it.

George still had his IV chemotherapy (Vincristine) that day through his gripper that was attached to his port still from being in A&E the week before.  I don’t quite understand why he would still have that one but not the other!? His nurse was lovely and really took her time removing all the annoying layers of adhesive tape – tearing the tape off is what bothers George more than any needles!

His nurse had spoken to him when she took bloods earlier in the week about naming his gripper so that they can chat about it.  “Barry” was removed yesterday leaving George able to have a bath / shower this weekend – yay! (yes…Barry of all the names?!)

We also left with more steroids as another burst of those started yesterday…. so the little meat monster that’s up all night is due back anytime!

So we’ve gone slightly off piste now during his “gentle phase” of treatment, and although we didn’t quite get the news we were expecting from the doctor, i’m keeping focused on the fact that everything has gone fairly smoothly so far.

Bridge abseil
Bridge abseil
Tomorrow myself and seven friends are going to be gorge walking and abseiling off a 90ft bridge for George’s GoFundMe Garden Makeover… hoping to watch the girls face some fears and have a good laugh at the same time.  They are all wonderful friends who’ve been working hard to get sponsors over the past few days.  We’re already at a whopping £1655 which is a huge amount towards creating a special place for our family.

Thank you Sarah, Dawn, Claire, Yvonne, Beth, Carly and Kath for doing this – you are all very dear to me – and thank you to the many sponsors who’ve contributed so far.  I’m looking forward to sharing how we get on if i’m still in one piece by tomorrow night – come on girlies! it’s only 90ft, it’ll be a breeze!! 🙂

Lisa x

 

George’s play date at our neighbour’s

George had a lovely day visiting the Tsang family… our neighbours and friends next door 🙂  and what lucky boy receiving a Lucky Envelope for Chinese New Year too… I wonder what he’ll put that towards?