Leukaemia | Twelve months on | Back to work | child receiving chemotherapy

Sorry for the harsh titles of these blogs sometimes! I’m trying to use keywords so that other families with children with cancer can find us on Google if they’re looking for positive stories.

Latest hospital visit

We’re due an update as it’s been a while hasn’t it.  It’s been quiet as I’ve been a busy little bee and George’s is on top form considering, so we’ve not been in hospital for sickness, just routine appointments – go George!

We went into Oncology at Alder Hey earlier this week after school for George to have bloods taken which were then discussed at his appointment on Wednesday.  Barry (the port) was given a flush to prevent him clotting up, which was a good reflection of how well George has been – it’s usually accessed more regularly because he falls ill before it ever needs flushing.

The doctor mentioned this week that George’s neutrophils are quite high at the moment.  The average Joe’s neutrophils sit between 4 and 11 but George’s need to be around 1 so that the doctors know his bone marrow is suppressed.  His neuts are 3.8 right now so it’s a sign his bone marrow has started fighting something off (any virus or infection), or he needs his chemo dosage increasing.  We’ve got another two weeks to see what the next move is.

The vegetarian

Sugar the puppy has had her fur trimmed
No pictures of the kids, just the dog’s hair cut

What else is new… Sugar has had a hair cut…. oh and Harriet’s a vegetarian!  that news has come as no surprise to a few of my friends.  One day she just refused to eat “an actual chicken’s leg!?” as she put it.  She’s never had an issue with meat until now… now she’s guilt tripping us all over eating defenceless animals.  In her words “it’s like eating Sugar” – our pet dog.  I get her point.  To be fair to her, I admire the fact she’s made the choice herself, no one she knows is a veggie, she’s doing it purely because of how she feels.  She knows her own mind this one.

Giving up work whilst George received treatment

As you all know, I stopped teaching my antenatal classes a few weeks after George’s diagnosis.  This decision didn’t come easy, but it was the only way forward.  The classes could be quite emotionally demanding and I got to the point where I felt my ladies weren’t getting the best of me anymore.  Obviously they all thought I was completely mad still teaching whilst George had just been diagnosed with leukaemia…. maybe I was!   I just thought it might help to keep in a positive place.

Anyway, no regrets on that front, I was released from a restrictive contract and free from the monthly payments to the franchise.  I could relax and look after my children when they needed me the most.  It was during those periods when George was an inpatient, and we were juggling Oliver and Harriet too, I couldn’t imagine being in a place where I could consider working again – and I’d previously only worked 12 hours a week tops!.

Ready to get back to work whilst treatment continues

Twelve months or so later and I know that I’m ready to get back in the game….not ‘on’ the game… those days are behind me 😉  There’s approximately 2 and a half years of daily chemotherapy and theatre for spinal chemo every few months but now we have our routines in place, I feel like there’s a little opening for me to get some of myself back.  School are now well versed on what they’re looking out for, we know which friends we can rely on if we’re rushing to hospital and we understand the drill once we’re there.

Lisa Rooza stood at Hypnobirthing training
Proper Geek at the Hypnobirthing training

We all know I love a good chat, I also enjoy helping other people and given my 4 years experience working with pregnant ladies, things are pointing in the same direction.  I have had a chat with my friends in the local maternity services and the birthy world and found out that, you know what?  I can do something birthy myself!  I’m a qualified complementary therapist, and have now trained in a method of delivering antenatal workshops called Hypnobirthing.  I have now set up my own birth programme and called it Birth Geek.

Birth Geek

I have lots of ideas for Birth Geek, but for now am not going to bite off more than I can chew.  I’m running antenatal workshops on a Sunday in Warrington, Lymm and Knutsford and offering mobile pregnancy massage a few days a week while the children are in school.  I’ve loved getting my teeth into designing my own website… and final branding is almost there, do take a look.

Not lost the plot yet….

We rise by lifting others quote
that we do….

And so a new chapter is beginning, one I never envisaged even 6 months ago – working whilst my child is receiving treatment for cancer!? but look, anything’s possible.  I’m just going to keep mindful of keeping a good balance.  Given I’ve not been sectioned so far, something is obviously working for us!  Celebrating every small achievement, every milestone, taking nothing for granted and living life to the full is not about to change.

Lis x

The Shitmas Tree | child on cancer treatment at Christmas

The Joshua Tree Christmas party
The Joshua Tree Christmas party

Maintenance Phase – December 2016

We’ve had stints in hospital over the past few months, treatment is ongoing and George is doing really well at the moment.  Parents evening confirmed he’s shining as brightly as everyone else.  By the sounds of things, receiving daily chemotherapy doesn’t seem to be affecting school life for him too much other than his low immunity.

George goes into theatre under general anaestethic next week for spinal chemotherapy to be administered via lumbar puncture.  We were lucky in that the doctor allowed us to adjust his schedule to bring the procedure forward, otherwise he was booked in for this on December 28th…

Christmas Decs

Here’s a dull fact for you.  Since my remotely-stable adult life began, I’ve collected Christmas decorations from nice places I’ve visited.  I’ve got the baubles for the years the kids were born plus festive ornaments from various holidays and special places we’ve been.  I like to decorate the tree with the kids and tell them the stories behind each one.

Bear in mind I have the three children, and we all know how kids like a homemade decoration! be it a creepy looking Santa or Rudolph the red nosed turd with sticks in, it wouldn’t be Christmas without some indistinguishable handmade creations coming home from school.

Over the years, in a tangle of Christmas lights, I’ve told the deep and meaningful stories behind our mismatched decs, and cooed over the cute homemade creepy angels.  Then discreetly shoved them deep into the Christmas tree out of sight so not to clash with Christmas colour scheme. Ho ho ho!

The Shitmas Tree

Well this year, as we all know, is a very different Christmas for our family.  This year we had a sharp reminder how we should be embracing every dam minute with our children, and proudly displaying every ugly decoration they’ve lovingly created.  I’ve bought a little tree that sits in the window, proudly dressed in all the decorations the kids have ever made and all the baubles I’ve collected from our travels… the unique little tree tells a story in itself.  This year we have our Shitmas tree! 

Our tree of memories
Our tree of memories

Now I’m not saying the tree or it’s decs are shite.  The collective noun for lots of random things where I come from is ‘shit’.  “Get your shit together” “pick all that shit up off the floor”… and so our Shitmas tree has been born.

The L word

Life has thrown some huge challenges at us this year, it began unfolding last Christmas with George falling ill and subsequently being diagnosed with Leukaemia.  Followers of my blog from back in the beginning will have witnessed what a roller coaster it has been.

Like many people who receive a cancer diagnosis, battling through can be a huge awakening for many.  It’s understandable what a change the diagnosis makes to your outlook on life, at the end of the day, it feels like a second chance has been given.  Certainly for us with a childhood cancer diagnosis, our perspective has been completely altered – we know what real fear is and anything else just seems like nothing to really get in a tizz about.

I have come to realise that without life challenges, you never really know what you’re capable of – as an individual, or as a family unit.  Of course, never in a million years would I have wanted this lesson to have been learnt through my children’s suffering but alas, this is the card we were dealt.  Now I’m not going to get all philosophical on you, or worse still start posting crap memes, I just want to share what I’ve learnt about life in the past 12 months.

Lessons this year:

I’ve learnt that children are bloody resilient  I can tell you now George will be itching to get back to school with his friends following theatre next week.  I however will need to lie down afterwards!

I learnt that there are always people with a bigger struggle than me Every day i’m reminded that so far we’ve gotten off lightly.  Yes, in comparison to Gertrude and her child with a snotty nose, we have had it hard, but honestly things could be much more challenging.  We hear of, and follow, fellow oncology children whose treatment isn’t working, or where the bastard cancer has come back…. every couple of weeks there’s another.

I learnt what true friendship is.  It’s someone holding your hand walking around Sainsbury’s the day before Christmas Eve to make sure you have some kind of Christmas dinner.  It’s coming home from the oncology ward where your child is a patient to find your friends cleaning your house, your neighbours delivering Chinese food, and there’s a bottle of wine in a mop bucket.  It’s people travelling out of their way, when they have their own families, jobs to get to, just to come and see if you and your child are ok.  It’s company, chats and laughter in the face of adversity.  It’s knowing your other children are completely happy and well looked after in the hands of someone else.

I learnt that I’m doing a pretty good job of parenting. I manage to feed them, get them to school, encourage them and I try to make sure that their emotional well being is my priority – not having the latest technology, the most expensive trainers… but that stuff inside that you can’t pay for is looked after.  I learnt that it bothers my children more if I can’t collect them from school, or tuck them in bed at night more than anything else, because all they need is to feel loved.

I learnt what community spirit is.  Without the challenges we’ve faced this year, how would we have known what beautiful hearts we’re surrounded by in our local community.  It provides great comfort knowing we’re a part of it.

I learnt it’s best to hide some people’s profiles on social media rather than punching them in the face. Some people are shallow, some people are greedy, selfish, ignorant to the world… we can’t all be the same but we can ‘hide’ their profiles so not to be bombarded with their ‘shit’ day in day out.

I learnt that there are so many more kind people out there than mean people.  Seriously, it’s part of our culture to assume everyone else is an arse, however through experience, this is not the case.  Most people are decent.

I learnt that nurses do not get paid enough.  Comforting myself and my son in the middle of the night, so many thankless tasks and skilled procedures…. these people deserve to be the highest salaries in the country.

I learnt more about my (now) husband this year than in all the years previously added together.  And not in a bad way! Nothing like a testing time to bring you together with a new found respect for one another.

I learnt to smile and laugh with other parents on a children’s oncology ward.  Who’d have thought it?

Cancer doesn’t choose Everyone is equal.  There’s travelling families, families who don’t speak a word of English, families who clearly don’t have a pot to piss in and those who look like they’re shitting money – but none of it is relevant.

I learnt to be brave. Not much more I need to say about that.

Complete with tacky lights!
Forever growing collection

There’s more I could add but it’ starting to feel like i’m in therapy!

Get the tissues

So back to the Shitmas tree… given all of the above, as well as our decoration marking the year we became Mr & Mrs Rooza, the most poignant decorations for us to reflect on there are George’s Beads of Courage.  They loop the tree twice and are probably going to be double the length by next Christmas with the treatment that lies ahead.  I’ve also added a shooting star decoration which we’re calling the ‘wishing star’… it’s for all of our little oncology friends who are putting up their fight, who still have some tough times ahead and their families that are in our thoughts.

Proudly on the front of the tree are some Angel Wings.  These are to remind us of the children we’ve met, and their mummies and daddies who are without them this Christmas…

 

Christmassy fun
Christmassy fun

This year will be our best Christmas ever, we’re stronger, we appreciate the time we have together.  We’ll be eating whatever food we concoct without any meticulous planning, the kids will receive the gifts we can afford and keeping out of Alder Hey will be a bonus!  I will NOT being doing stress….

I hope you all have some form of Shitmas in your home this Christmas, if not a tree, I hope the sentiment is there anyway.

Lis x

P.S.

Just in case you were wondering if we all sing carols and hold hands of an evening now here’s a reality check –

Damien is currently sat stitching tinsel onto George’s Angel Fairy Ballerina costume and it’s 10pm, the night before it’s due in.

I won’t lie, as well as the shitmas tree I still have a 7ft Christmas tree in the other room with a <patronising tone> colour-scheme

Sugar without her uterus anymore
Sugar without her uterus anymore

The dog released it’s anal glands the other day after getting its head stuck in a plant pot holder and the house still smells of fish.

Sugar had her uterus removed yesterday and is walking around in a babygro to stop her chewing her stitches. It requires me to undo her arse buttons every time she needs to go to the toilet.  About a hundred times a day.

Merry Christmas one and all.

 

Note: I know a few of our friends follow All about Erin and helped fundraise for her to get to America for life-saving treatment.  We’re also supporting Jenson’s Journey, another little boy from Warrington who has leukaemia now after battling lymphoma over the last few years… so unfair, I know his family would appreciate your support – you can like his page here.