C is for Cleo

Local Mum Jane Park is blogging for us about her beautiful and brave daughter Cleo who was recently diagnosed with brain cancer

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May 2018
You must have heard ‘cancer’ referred to as ‘The Big C’. Well, it’s not. C is for Cleo.

I am going to attempt a blog in Cleo’s honour. I’ll have to tell you some of the grim bits. I must remember to fill it up with the lovely bits too. It’ll be sporadic, depending on my mood. Cleo has been diagnosed with cancer, and so inevitably some (ok, a lot) of this is going to bang on about its myriad horrors. What this has done to Cleo and to us, her family. But, in writing about it, I also hope to preserve some of the glories of my girl, my Cleo.

Alright. Here goes.

Monday 12th March 2018. Cleo is meant to have her violin Grade 1 exam today. She has been a tad reluctant to practice in the preceding few weeks. We’ve tried cajoling, bribing, being nice, being firm, to no avail. Today her school rings us up, again, to express their ongoing worries about her. Her violin teacher said she couldn’t even hold up her violin today in her lesson. Ok, Ok, we’ll postpone her exam. And yes, I’ll try and make her an appointment with the GP (don’t hold out much hope of getting one before the end of April though! we’ll see…)

Tues 13th March 2018. A typical morning in our busy home as we all try to get out of the house in one piece and deliver everyone on time to the right places. Ella asks when her piano lesson is today; hmm, I haven’t had the email from her teacher…  phone says ‘no storage space left’, oh FFS, that explains it! I delete a load of nonsense to make room for more emails while I phone the doctor’s surgery at 8am sharp- to my surprise they can fit Cleo in today. Has Oscar filled in his reading record? Why is he wearing his sister’s blouse- go and find your own shirt, boy, and some socks! Where am I meant to be today? Oh great, I’ve got a 9am visit at a school the Opposite End of the Known Universe… when is Cleo’s doctor’s appointment again?! You still Ok taking her? Alex grunts assent as he tosses a rolled-up ball of socks over to Oscar- ‘come on, boy, get them on’. And so forth. I brush Cleo’s tatty mane- bed hair- she grumbles at me. It’s just all so… typical. Apart from the doctor’s appointment. I hope we’re not wasting their time. She’s fine, for god’s sake- she’s just tired, have you been in a Y5 classroom recently?! The things they’re asked to do, it’s insane. No wonder she’s shattered.

I get to my school (late), have the meeting (it draaaaaags onnnnnn) and check my work phone when I get back to the car. My next school (irate) has been ringing to see when I’ll get there. It’s at the Opposite End of the Opposite End of the Universe – god, I hate being late, makes me feel guilty. I call and assure the school administrator that I’ll be there in ten (honest!). Better check how Cleo got on. Text message from Alex along the lines of ‘doc referred to paediatrician, going there now, don’t come, it’ll be fine’. Shit. I’d better go. Sorry, irate school, when I said ‘there in ten’ I meant ‘my daughter’s popping over to the hospital because they’re a bit worried about her. I’ll be in touch…’

(I never went back.)

What’s going on? Palpable confusion and unease. Alex and I spoke to the paediatrician about the reasons why we’d eventually brought Cleo to the GP.  I felt we were plucking what might be problems from the air- she’s a bit tired, she’s a bit wobbly coming down the stairs sometimes, she’s fallen asleep at school., she doesn’t want to go out to play any more, her appetite hasn’t been so great, once or twice she’s been sick seemingly out of nowhere and then she’s been completely fine… I hated it, I felt we were bordering on pathologising our daughter. But also, the more we described what we’d been seeing in recent weeks, the more uneasy I felt. Evidently the seemingly disparate set of concerns that we were describing were enough to raise alarms. Today I learned the word ‘papilloedema’- a swelling behind the eye.  That’s what the paediatrician didn’t like the look of. They don’t just come out of nowhere… I felt the level of concern rise again. Still in her school uniform, her coat and bag waiting for her on her peg, Cleo was admitted to the children’s ward.

Thurs 15th March 2018. Cleo had an MRI scan today- not much fun, but she handles it; she is amazing, as always. Of course she is- that’s just Cleo. I haven’t told you about my girl yet- I’ve been wallowing in the horrors of these short days’ events. That’s a bit bloody selfish- but then I am hoping to process some of this pain through writing about it so… I guess I can forgive myself at least a little bit. Sorry Cleo.

Cleo is nine. She’s funny, beautiful, kind. Those adjectives are nowhere near enough. She’s super special- everyone who meets her falls in love. She loves to climb everything and anything- she would climb fresh air, I am sure of it. She is just a lovely little human being and we completely adore her. She is my sunshine. That’s our song, me and Cleo- ‘You Are My Sunshine’. I can’t sing the last lines any more.

Today was the day we found out our Cleo has a brain tumour. To my lay person’s eye, what Alex and I saw on the slides from the MRI looked huge- the doctor wouldn’t commit to agreeing or not, but, my god, I’m not stupid, it’s… it’s everywhere! What the fuck is that?! Not that that’s what I said. There was no outward expression of anything, to begin with. After the doctor left us alone for a few minutes to take in what we’d just been told, our first reaction was silence, tears and holding each other tight. Then the swears came. Bloody hell. This can’t happen.

Within the hour Cleo and I were being ‘blue-lighted’ through the rush hour traffic over to Birmingham Children’s Hospital. She liked that- the way the sea of cars parted in really funny ways as people didn’t quite know what to do to get out of our way. The blue flashing lights, the siren… I’ll take a picture, sweets- wait until you tell your classmates!

Yeah… Cleo never went back to school.

Look- I’ll spare you every detail of our journey since then. Oscar missed his birthday party (16th March) because Cleo had to have another MRI in advance of a biopsy (23rd March), which she endured and bounced back from with incredible ease. Of course she did- this is Cleo we’re talking about. Nothing knocks her down- she is made of fortitude and loveliness! We acquired a Visiting Hat and balloons spelling her real name, ‘Olec’ (Princess Olec Woollybum, to give her her full moniker). Her class sent a card with pictures each child had drawn for her- they included llamas, violins, cats, pigeons and chicken nuggets, which gives you a fine insight into the wild and wonderful workings of our little girl. She came home- a blissful couple of weeks, suspended in not-knowing, but also… knowing. We ‘knew’, or rather, we feared. Very, very much.

Nights were the worst. Through the day, just getting by, maintaining ‘normality’ for Ella and Osca r, that provided a most welcome and non-conscious distraction. We were just busy, so…. no time for thinking. At night, when tired and less able to control what slips into your mind, that’s when I went to some very dark places. Howling, painful, hideous places, where I became sure we were going to lose her, and then reasoned my way out of it again. I feared sleep, because when my eyes closed, that’s when Pandora’s Box fell open.

Tues 10th April 2018. Much of what happened today must stay private between Alex and I. I’m happy to share that we learned another terrifying set of words today- ‘anaplastic astrocytoma’. We had to make phone calls to eager, hopeful family members that no one should ever have to make.

Cleo has cancer. It’s a battle we will all fight with every inch of our souls, knowing that we’re not going to win it. I sob as I type and I grit my teeth and carry on typing, because the real essence of what might be useful about this post is finally here! We knew absolutely nothing about brain tumours before. We knew nothing. And now we know. And we want everyone to know.

The Brain Tumour Charity https://www.thebraintumourcharity.org/ is filled with information and the most fantastic resources. They’re accessible and honest without being overwhelmingly scary. They run a campaign called HeadSmart, relating to the early diagnosis of brain tumours. I have taken the following from their website…

“Symptoms of brain tumours vary from child to child. Symptoms can also depend on exactly where in the brain the tumour is and can often mimic those of other, relatively minor childhood illnesses.

The presence of a symptom does not necessarily mean that your child has a brain tumour.

Common brain tumour symptoms in children include:

Persistent vomiting/feelings of nausea (over a two week period)

Recurring headache (over a four week period, particularly on waking)

Abnormal eye movements

Fits or seizures

Behaviour change

Abnormal balance/walking/co-ordination

Blurred/double vision

Abnormal head position (such as a head tilt)

Delayed or arrested puberty (puberty that doesn’t start or starts, but doesn’t progress as expected)

The Brain Tumour Charity advises that, if your child has one or more of the above, you should take them to see a GP, explaining your worries about a brain tumour being present. If they have two or more, ask for an urgent referral.”

Our Cleo presented with just a few from the list. Had we known about the symptoms of a brain tumour there is a high likelihood that we would have taken her to the GP a month sooner. But, let’s not go there.

You can get further info and interactive activities from https://www.headsmart.org.uk Please have a look, and spread the word, won’t you?

You are my sunshine, my only sunshine. You make me happy when skies are grey. You’ll never know, dear, how much I love you… xxx

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