Local Mum Jane Park is blogging for us about her beautiful and brave daughter Cleo who was recently diagnosed with brain cancer
Lost and found
The first day of Spring has passed; I wanted us to get here so much. True to form, my psyche has been singing to me – it has lurked for a while, but now it is looping around in my head. The end of Act III of La Bohème, set in Winter, where the protagonists Mimi, a florist, and the rather jealous poet Rodolfo sing about parting, then decide to wait and stay together until Spring comes: ‘Ci lascerem alla stagion dei fior!‘ (we’ll part when the flowers bloom). It’s made all the more poignant because, by this point in the opera, we’ve fallen in love with all the characters, not least because of their flaws. While the lovers consider the unbearableness of parting, the other couple in the piece (Marcello and Musetta) are simultaneously pelting one another with a full-blooded, insult-peppered separation of their own. It’s poignant, funny and thoroughly human. And it’s all about parting in Spring.
Sunshine beamed into Cleo’s room yesterday, where she has now taken up almost permanent residence. It was glorious to have the windows open. I felt heartened when a humongous bee drifted into her room; gladder still when the buzzing beast glided back out from whence it came. Later in the afternoon, confident that Cleo was safe and comfortable, I briefly went outside and found myself resentfully cursing all the signs of Spring. Thankfully, I have maintained my skill at batting away unhelpful thoughts; thoughts such as her never again being able to go out to see the blossom, or look for catkins, or pick daffodils, or forage together for the first fresh dandelion leaves of the season to feed her guinea piggy. Unhelpful. Bat, bat, bat. The problem is, to be able to push them away, you have to have noticed them, and by then the thoughts have already left their wretched shadow on your heart.
There have been moments this week and last where the sense around us was that we were losing Cleo. She was slipping away from us. And then… somehow… she found us again. Incredible girl! Long, long periods without communication, of sleep without words, then… a squeeze of our hand… the raising of a finger… the slow blink of her eyes to say ‘yes’. A few mouthfuls of food, a few sips of water and a fleeting smile, sustaining both Cleo and us. Occasionally, words.
We spend long periods every day keeping our beloved girl comfortable, warm and safe. When her baby brother snoozes, we gently insert him into his sister’s arms, where he sleeps blissfully in her warmth. Making sure she has all her medicine, dressing her, chatting to her, putting CBBC on for her to watch, finding something she might like and be able to eat – often through a syringe, these days, as chewing and swallowing is not so easy. I gladly attend to every need – a mother’s privilege. She trusts us to care for her, just as she always has. Though it is truly intense, emotionally and physically wearing, it’s an honour to do this for her.
There are bits and pieces of medical equipment all around Cleo’s bedroom, but I squirrel them largely out of sight. This is her room, a child’s safe space, and I want it to stay that way as best we can. Here’s her view:
From left to right: a photo of Cleo with one of her besties, in better times. A tile Cleo designed and painted; a shiny pink Eiffel Tower (what else?!) from our trip to Paris last November. A pineapple picture frame with a print reading “You are a Magical Goddess Unicorn Queen”. A llama, a chocolate bunny, some emergency medicine in case of seizures – I sanction that being in view because we need to know where is it, should we need it. A bookmark; her ‘Most Courageous Pupil’ award from school. Poems and cards from dear friends, a photo of toddler Ella with Cleo as a baby. A strange stone with seaweed poking out of it that she found at the beach. Pickle, her little fuzzy toy that she’s so fond of. Balloons spelling out ‘OLEC’ (a nod to her true Royal identity; HRH Princess Olec Woollybum). Symbols of love, affection, warmth, humour and good times.
I’m fighting with a pull to write about the horrors of our life as it really is, but, as with that delightful scene from La Bohème, it’s all so much more complex than a simple dichotomy of good and bad can express. There’s pain in feeding Cleo with a syringe; elation when she enjoys a drink of apple juice and looks at you with her giant blue eyes. Doing a happy dance when she eats something. Such sadness when her sister asks her a question and gets long seconds of empty silence in return… then, a characteristic eye-roll; Ella mutters sardonically: “so rude”. The kind of banter only a loving sister can get away with. Oscar hasn’t quite worked out how best to cuddle Cleo goodnight. Just all so confusing and difficult to understand.
Cleo is safely at home with us. She’s lovely and comfy in her own room, where we all camp out through the day. When we’re feeling strong, we find ways to take her out and breathe in the springtime air with us. We successfully challenge the sense that it’s otherwise time to climb into our bunker, bed down and huddle away until it is all over. No. Not yet. This girl has much more living to do.
Sleeping tonight
I’m sleeping in Cleo’s room tonight. I hear her soft snore, like a cat’s purr. It brings memories of sleepovers in the living room to mind; watching a mutually acceptable movie all together, snuggled under duvets strewn across the floor. The nagging sense that I should be getting them all to sleep at some point but, what the heck, this is fun! Picking up bits of lost popcorn for days later. The children may not remember such times consciously, but experiences such as these are internalized as happiness, abandon; as love.
I’m sleeping in Cleo’s room tonight because I’m worried about her. My precious. She’s sleeping gently now, as she always has done. It’s lovely, rhythmical, comforting. Beautiful child.
I’m sleeping in Cleo’s room tonight. She’s not been right today, or yesterday. We can see and feel her decline. There’s a change in the family atmosphere. We’re silently hysterical, searching for glimpses of something daft to lighten the mood and sustain us. We’re on a kind of lockdown. It’s our time now, our time with our girl, our sister, our daughter, our baby, our child.
I’m sleeping in Cleo’s room tonight; I’m breathing her in so that part of me is formed from her breath. We’re so lucky to have her, to have the whole gang. At times when I wobble, I stop and think of all my children. I hear them chatter and banter and gurgle (perhaps just one of them gurgles) and I hold on to the sense of there being a future. Of vitality, potential and energy.
I’m sleeping in Cleo’s room tonight, beside her, and because of that, I am the most fortunate person alive.
Onwards
What an honour. I mean, what an absolute joy it is to spend time with this child. It always has been; I haven’t developed a sudden appreciation for her. She’s been a most marvellous creature since her entry into the world. Long adored.
She keeps going. I’ve no idea how she manages to still be ‘Cleo’. Her marvellous quirks, her dry take-downs of her brother (Oscar; Tristan is as-yet immune), her warm affection. Her ‘alright, you’ve got me’ side-smile. I know her so well.
All change
‘Team Cleo’ had a rough week last week. The clinical trial is finished with. When it came down to a choice of having a drug pumped into your child’s arm that just isn’t going to make the blindest bit of difference to their quality of existence and going for Cake and Tea, there was no longer any question. The cake and tea tasted great; the cuddles which accompanied were soft and warm. We tried, so hard, but the latest and last ever MRI scan told us no, no more. Enough.
I feel a huge amount of frustrated regret about leaving the clinical study, but it is the right thing. We furtively hoped, almost beyond reason, but this was not the ‘magic bullet’ that makes sensationalist headlines and sticks in people’s minds as offering a curative possibility. We have long said that we wanted Cleo’s experiences of having a brain tumour to have a meaningful impact, to contribute whatever we could, so giving something constructive through research felt like the right thing to do. But when time is unequivocally confirmed as being short, spending it richly well is the most important thing. A non-essential day a week in hospital became too costly.
We made the decision to tell the children where all this is heading. We had to give them the chance to notice and appreciate and begin to process and understand. I thought, with all my professional training and the preparatory thinking I’d done about what needed to be said and how to say it, that I was just about ready now to steer this conversation. That I’d hold it together and offer some maternal wisdom and clear-minded emotional support to my children (later dissolving into a glass of wine or three once they’d all gone to bed). The reality was that, in the moment, having gathered Ella and Oscar together, I crumbled into tearful pieces. Alex stepped forward with a gentle, child-sensitive, in-the-moment delivery of something so big and so grave but so kind and warm that I just listened in awe. His words said all that was needed while also keeping the children safe. He is a wonderful man.
They’ve been ok since, Ella and Oz, amazing individuals that they are. After giving them the news we all went out for dinner and then the cinema. It was almost normal. They know the door is open to answer any questions they have, any time. I’m not going to betray the privacy of their relationships with Cleo any further, only to say that the way in which the goodnight hugs at bedtime have been held, just a little longer, has been noticed. Oscar bought Cleo a new cactus. She named him Cedric. I adore this bunch.
Just the same
The last few days have been blissful. Steroids and luck have meant Cleo has felt well, so we have capitalised. Nothing elaborate, just good quality fun happy time spent with friends and family. It’s been as close to ‘typical’, for us, as we could get. Totally glorious and sustaining. It’s been a relief to get together and be in the company of people who simply know us, who we can swear heartily with about the total unfair bloody awfulness of it all, who notice the tear that escapes and don’t probe for explanation, or offer undesired advice. And to drink beer and laugh, talk about how they’ve grown, about music; anecdotes.
Sitting around the table having breakfast together; Daddy’s homemade bread with multicoloured dippy eggs from our friend’s happy chickens (as well as the inevitable bowls of sugary hoop cereals). I breathe it all in, try to take photographs with my eyes. Remember this, remember this.
Moments
I slept beside Cleo again last night, in case she needs anything through the night. It was completely lovely. Listening to her breathe, feeling her warmth. She rolls over, slowly opens her eyes, finds me there and smiles a smile of love, safety, gladness, before closing her eyes and dozing again. She entwines her fingers with mine and we both sleep contentedly. Early in the morning, I wake first and watch her as she snoozes while I breastfeed her baby brother. Her flawless cream skin, freckles sprinkled across her dainty nose and raspberry-sorbet cheeks. Long, long lashes. She’s divinely pretty.
Looking at photos from a year or so ago I reflect on how much Cleo’s grown up, physically. Her face and body have begun the process of at-first subtle change, but she is undoubtedly on the way to becoming a marvellous young woman. An automatic process beyond conscious control, beyond the reaches of the fat jellyfish. Also very hard to dwell on for long without slipping into the unhelpful realms of self pity. It’s so bloody cruel. But she’s still here beside me so there’s no room for the past tense, not now. Not yet.
We’re still here, together. We’re still living, soaking up togetherness. Devastatingly happy.
Not Knowing
We’re having an outing to our local theatre, just me and my girls. After Cleo’s ‘wibbly-wobble’ and her run-in with the A&E department a few weekends ago, I booked us some tickets in a fear-driven frenzy of needing to Do Stuff Now. So here we are; Cleo opts to sit with me while her sister takes up the single seat I’d intended for myself. I sense that she’s not really sure what’s happening or why we’re here, she feels vulnerable and prefers the safety of having her mum in close proximity to the fun and giggles of being next to her sister. El doesn’t mind – she gets priority over the box of Maltesers. Cleo takes off her glasses and hands them to me.
“Can you look after these for me, please?”
“Of course my darling”. I take Cleo’s specs, put them on myself and turn to her.
“Cor, Cleo, these are really good, I can see so much better with these on!”
She looks back at me, tilts her head, then says
“Oo, please can I borrow them? I’ve no idea where my glasses are!”
This adorable creature! I feel like we’re momentarily living in a Morecambe and Wise sketch. I mean, it’s a really funny moment, one I won’t forget, but as with all memorable comedy it is underpinned by pathos; sadness, even. Cleo’s memory has been somewhat iffy since her bigger seizure. It’s not possible to be definitive about the cause – drugs, tumour, another form of as-yet-unknown damage – but what we do know is that there’s no evident rhyme or reason to what Cleo remembers and what she can’t recall. It varies; sometimes she’s lost and confused, other times she’s more lucid and ‘with it’. The way she currently presents has been likened to dementia. I find that a helpful model for understanding her. She doesn’t really recognise her friends any more. She doesn’t remember ever having been at school. Films we’ve watched together, she no longer recalls. Yet, down the pub last weekend, watching the rugby, surrounded by her loving family, Cleo happily joins in with a tipsy rendition of ‘Swing Low, Sweet Chariot’. I am brimming with love and compassion for my beautiful child. I will guide her.
There’s much I want to say. If I don’t tell you what having a child with a brain tumour is like, how will you know? I am not going to lay it all out in a blog such as this. I’ve said it before, much should and will remain private within our family. But, since you’re reading this, you have officially now been touched by childhood cancer. If you’re moved by our experiences, whether you know us or not, childhood cancer has already put its nasty, cold little hand on your shoulder.
No it hasn’t, that’s ridiculous. I actively resist the personification of an organic, mindless organism because I might then waste my time getting angry with it. I’ve no wish for anger.
The point is, I want to share a little of our life with you so that you know. And then when you reach for wallet/phone/laptop and donate to the Team Cleo Fund (hint hint, ho ho) you have real people in your mind and your heart; real lived experience. You will want to spare others from going through the same heartbreak.
There’ll be more. It helps me to process what’s happening. Steel yourselves for a challenging ride, but do come with us. Help us bear the knowing and the not-knowing.
So sorry
Then…
January 6th, 2019. We’re watching the New Year’s Day episode of ‘Doctor Who’ on catch up. Oscar is snuggled under his TARDIS blanket, playing with one of the rats. I doubt he’s listening to the telly, but then he comments on the action and I remember his claim that he’s ‘really good at multitasking’. I smile to myself. Ella is curled up in the corner; I see the blue glow of her mobile phone reflected in her face. She’s not much of a DW fan. Tristan softly wriggles and chunters as he lies on my chest, wrapped in a snuggly blanket. Cleo is beside me. She turns on her side and guides my hand to her back, hitching up her top. I know this request well; time for some tickles AKA ‘do the Feels’. She loves a back rub. Cleo keeps chit-chatting over the DW dialogue but no-one minds. We’re just glad she’s back home, safe and enjoying home comforts. The scene is so warm and familiar. Normal.
Is it? Alas, 2019 didn’t quite begin in the quiet fashion we hoped for. Everything kind of looks the same but… it’s not. I wish I could capture this moment and just live it forever.
I don’t know how to play poker but I’m thinking of taking it up. Alex and I are currently doing a very convincing job of covering up our mutual despair. I feel dissociated from my body, like I’m outside looking in, consciously controlling my movements, my choices of words, my facial expressions. I definitely still function – the children have been fed and watered, as has the menagerie of pets. But I’m not really there. Just a hollowed-out human in automatic mode.
The fat jellyfish is back. I’ve dropped the capitals; the bastard thing doesn’t deserve a proper name.
I can’t adequately express what news of this new development feels like, but it would be too simple to conclude ‘there aren’t words’. I keep fishing around for them, searching for a way.
I feel both numb and wired. Resigned but fighting. Both resilient and crumbling. I wonder whether these binaries are just the component elements of profound, quiet sadness. I’ve no anger, no wish to shout. I’m just desperately sad.
‘We are going to lose her’. It’s easy to stay busy with Tristan around, but if I’m left alone for a moment, unoccupied, that’s where my mind instantly takes me. I bat the intrusion away but not quickly enough to prevent fear from leaving its indelible trace. Hope? – of course I hope. I hope we’ll have a long, long time with our glorious girl in our lives, shining her light, spreading her rainbows. I hope there’s a relevant, promising clinical trial that she is eligible to take part in. Beyond symptom management, that’s about all we have. No more radiotherapy. No more chemo. Treatment options have fizzled out. We knew they would one day, but this was a cruelly abrupt gear change.
This week we learned about focal seizures. One urgent MRI later and we were having one of ‘those’ conversations with Cleo’s medical team. One where your heart starts to sink as you are led towards a private room. Without Cleo. This is not for her ears.
I start to cry before anything is even said.
“You’re going to tell us something bad” I sob, annoyed at myself for the child-like words which puncture my efforts at dignified control.
“I’m so sorry, Jane. We’re so sorry.”
So sorry.
…Now
January 29th, 2019. Cleo is snuggled on the sofa, dozing. She’s successfully ousted the cat from Cleo Corner. We’ve been in hospital all weekend after another longer seizure and we are all so glad that she is home in peace. She doesn’t remember a thing about the weekend – well, she doesn’t really remember anything at all. She asks “where’s Ella?” and I softly remind her that it’s a school day. A few minutes later, with her sweetly quizzical look: “where’s Ella?”
“She’s at school my sweetheart.”
“Oh yeah” Cleo replies. I’m not convinced she’s understood.
In the absence of any other reasonable treatment options, we enrolled Cleo on a clinical trial. She had her first treatment last week. It isn’t going to cure her and could be seen as a waste of a precious day once a week for however many weeks we have. But, the truth is, we have fun wherever we go and so, while there’s the faintest wisp of a cloud of a chance that she might gain some benefit from being on the trial, we have to try. Turns out we’re not all that altruistic after all when it comes to our child.
I’m not angry, though anyone who wants to be on my behalf is welcome to. A brain tumour is not sentient, it bears us no malice. Anger won’t help us defeat it, or take care of Cleo, or cope. The human capacity for experiencing complex emotion is so extraordinary; I am able to feel this desperate aching sadness at the same time as love, gratitude and pure, simple happiness. We don’t have to be angry. It means that the power to write this story, the story of an ending, is in our hands. We can create a positive narrative for Cleo, for her, for us and for the children. Celebrate a most wonderful life. We can do that.
No reflections
NYE 2018 – a time for reflection on Things Past and making eager plans for the coming year. On the latter, I’m exercising significant caution; never again will I allow myself the indulgence of believing I have even half a clue of what a new year might bring. I’m also choosing not to spend too much time on reflection this new year’s eve. It was a year, alright. The right number of days, weeks, months. Mercifully predictable. Other than that, our 2018 could not have been more unstable, more painful, more marvellous. Although part of me just wants to bin the lot of it, I can’t dismiss the whole year. Big events such as the arrival of baby Tristan or buying a house are fantastic things, but I’m thinking more about the importance of preserving the transient moments of joy that live among the awfulness. The tight hugs with no words needed. Sharing krispy kremes with Cleo on the morning of my birthday. Her vigorous dance moves. General daftness and giggles. Friendship, companionship. I don’t want to lose any of that.
Last Christmas looked so different. Though we were doing fine, on Christmas day I was still struggling with missing my dad. The day just felt so disconcertingly strange. Cleo wasn’t wonderfully well even then – I have often wondered if it was just a virus back then or was this the beginning of the fat jellyfish? Pointless musings. This year we refused to let cancer’s presence dictate to us. We successfully buried it under decorating the tree, playing cards and boards games, cracking nuts. We drowned it in ginger wine and mulled cider. Most successfully of all, we fended it off by being tightly surrounded by family, friends and the good wishes of those further away.
Over Christmas, now and again, I’ve enjoyed watching little video clips of the children from years ago, squirrelled away on my private You Tube channel for safekeeping. Autobiographical memories that take on a deeper significance these days. I’ve also caught myself several times taking more short video clips of the children, borne of the desire to preserve. I notice that I train the lens on Cleo more often than I otherwise might have. I talk the family into reluctant selfies, like the pic at the top taken at the pantomime today. I want to keep everything safe somewhere. I don’t want the loveliness of these days to ever be lost.
This festive period has been fully occupied by our sweet-natured baby, moving house and Cleo’s ongoing treatment. It’s not a big step to work out that the eagerness with which I bore all the madness of house-moving might relate to it being a fantastic distraction from the un-bearable. I know I’ll have to process it all sometime. But just because it’s the end of a calendar year doesn’t mean it has to be now. 2018 is, mercifully, ending on a stupendous high. It’s time to enjoy the warm fuzzies of togetherness. So, that’s what I’ll do. HNY, folks, with love. Cheers! Go milk this life!
New Life
Hallowe’en 2017. Life is good. We’ve been up here in Shropshire for over a year now and are finally beginning to feel like this is home. A trip down to London for our wedding anniversary is proof – we both look forward to coming back to the clean air (and cheap beer). The kids are doing really well at school and we all work hard, finally beginning to enjoy the fruits of our efforts over recent years. I love my job; I’m moving into a tentative phase of conscious competence and it all feels good. We spend too much, save a little and we plan fun and exciting adventures for our family; indulgently, for ourselves.
Hallowe’en 2018. I nuzzle my face into the soft peachy skin of our new baby son’s head. He’s a week old. Cleo and Oscar get ready to go ‘trick or treating’ in the drizzle. The sight of a child in a wheelchair wearing a terrifying white mask accompanied by a skinny boy in a skeleton outfit is more chilling than I’d meant it to be, but they set off giggling and screaming and their haul of sweets is evidence of a successful mission. It’s our fifteenth wedding anniversary today. What a year. Things have… changed. I haven’t worked since April. I miss my job. I love being with Cleo. Somehow I have forcibly got my head round both being unexpectedly pregnant again (yeah yeah, I know how it happens, blah blah blah) and, well, the Fat Jellyfish. I haven’t got my head round that yet. I doubt I ever will.
Baby in the background
The late spring and all of the summer saw Cleo endure harsh radiotherapy and chemotherapy followed by a slow path to recovery from said treatment. She has done incredibly well – we’ve seen arguably the biggest positive changes in the last couple of months and we’ve really got most of our lovely Cleo back. Chuntering along quietly in the background through all of this has been a little growing baby. When Cleo and I, disorientated and in shock, landed in the night at the neurosurgery ward of Birmingham Children’s Hospital back in March I was ten weeks pregnant, still reeling from the news that we hadn’t yet shared and enjoying the delights of morning sickness and total knackeredness. We ‘parked’ him for a long time, bless his soul. The prospect of a new baby would usually be the focus of joyful attention in a family, but for us he was just ‘there’. We now had Cleo to care for and her siblings to look after. I had my first baby scan the day before we received Cleo’s grave diagnosis. All pretty overwhelming.
I can’t remember when we told the kids about baby. I’m fairly sure we incentivised a positive response by sandwiching the news around pancakes… They all seemed surprised but excited about the news in different ways. Cleo admitted to feeling horrified by the prospect of a screamy crying new baby, gradually warming to the idea over time. Around his due date she tried enticing him out, talking to the bump and telling her bro-to-be that he had a lovely big sister here with lots of cuddles to give him. He wasn’t having any of it.
Survival mode
It sounds a bit dramatic to say it but as time ticked by I realised that this pregnancy was the key to my survival. One day I will tell baby how he saved me. He gave me no choice but to stay in one piece, for his sake. To step away from the self-destruct button. He stopped me from drowning in gin: I wanted to, believe me, how much I wanted to. But I didn’t touch a drop. My wonderful amazing daughter so ill, our future shattered. Destroying myself to extinguish the pain would have been one thing, but damaging a life that hadn’t yet begun was unthinkable. Sometimes when crossing the busy road to our house I pictured just closing my eyes and stepping out. It seemed to be that easy. But I didn’t (and I won’t). It’s just… well, that’s how awful it all got at times. But we have survived. The motherf*cking jellyfish brain tumour may have done its damnedest to decimate my family, but we have so far managed to stand strong, like a jigsaw puzzle, all our pieces interlocked and holding each other together.
What’s in a name?
So baby Tristan is finally here. Cleo is doing well and this picture is Everything:
I can’t adequately express the depth of feeling that this photo embodies. Joy, relief, pride, love… I’d hardly dared imagine what it might feel like to have both Cleo and baby in my arms. We got there. Nothing else could ever feel better than this.
Cleo’s middle name is Manon. Not after ‘Manon Lescaut’ – great opera, seriously flawed lady! – but Manon Gropius, the ‘angel’ to whose memory Berg dedicated his wonderful Violin Concerto. Manon inspired her mother Alma Mahler to utter the following: “Nobody could see her without loving her. She was the most beautiful human being in every sense. She combined all our good qualities. I have never known such a divine capacity for love, such creative power to express and to live it.” Now, if that’s not Our Cleo encapsulated right there, tell me what is.
Something of this naming dedication to Manon and to Berg prickles me badly. Lovely Manon, her spirit and essence preserved in music, died all too young aged just 18. I’ll go no further down that road but I’m sure you’ll understand why it makes me wince to think about it.
As for Tristan – yeah, that opera, that chord. He’s a noble character; strong, brave, revered, nifty with a sword… (I could probably live without the last association). And in real life, our Tristan is a gorgeous baby with a sweet temperament – a perfect fit. We love him lots. The last twelve days have provided an oasis of happy normality for us all, just a contented and fortunate family getting to know our newest addition. It’s fun, it’s lovely. I’m so glad he’s here.
I’m still very very scared about what the future might hold. But having got this far, surviving so much together, I am tentatively beginning to think about the year ahead . Wherever this ride takes us we’ll face it with courage together. The six of us. Let’s see what Hallowe’en 2019 looks like…
Rest, my soul
‘…cuckoo…’
Weary resignation – I squint at my phone; it’s 1am. I make a conscious effort to smile and remember what a privileged position I am in, to have a Cleo to look after. Laboriously, I start getting out of bed.
‘Cuckoo…cuckoo…’
Bloody hell Cleo, I’m coming. I’d call down to her but I don’t want to wake the whole house up.
I plod downstairs.
‘Cuckoo…cuckoo’
“Cleo my love, once was enough!” I snap, with instant regret. I may well continue to be a massive slow hippo-woman for the next few weeks, but any suffering I might endure is a relative nothing and it certainly shouldn’t be her concern. When she feels the need for some late-night looking-after from her mummy there should be no hesitation as she reaches to press her cuckooing doorbell.
Her tummy hurts. A sip of fresh water and a nice cuddle seems to ease it. A big kiss on the lips and I leave her to settle again.
Back upstairs, a little bit worn out and weary, I start to cry. I’m not even going to try to stop the flow; due to the constant need to hold it together, a good sob is overdue. I never want to lose her. I’m just so bloody sad.
The comfort and relief that I feel when we’re all together is under constant threat. None of us feels quite right when one of the crew is away somewhere. Daddy’s away this week, Oz was away on a school trip the week before. It unsettles everyone and we’re all much happier when the band is together. We need all the links in this family to truly function.
Impending arrival of little brother
The symbolism of the nightly cuckoo-calls is not lost on me. Though a little brother was on his Christmas wish list last year (I’m sure I recall laughing at this with Alex and saying “bad luck, son ” Whoops! Oh well), I’m conscious that Oscar might feel pushed out once ‘Ludwig’ arrives. I’m moved to assure him that he’ll always be my number one boy.
A few months ago, trying to make sense of the early days of Cleo’s diagnosis, one of my fears most in need of repression was that Cleo and her new sibling might not get to meet. The two opposing positions of total joy versus horrible loss and pain were intolerable to contemplate. In a closed-off corner of my mind I fleetingly note that there’s still a few weeks to go; it was only five weeks ago that Cleo wasn’t well at all. We’re not there yet. But at least now, with Cleo in such good form, I feel able to embrace the last few weeks of pregnancy and truly look forward to having a marvellous gang of four in my life. She’s doing so well and is an utter joy to be with. I choose the word ‘form’ carefully – though she’s making amazing progress after her treatment, she is not in what anyone would call ‘good health’. It’s her sparkle, her positivity and her spirit that convey vitality, but we’re all too aware of her vulnerabilities. Though I need to be honest and realistic for my own sanity, I will always continue to hope that my girl will beat the odds. It is a bizarre paradox when you put all your trust in scientific evidence and a medical team and, equally, pray for them to be wrong.
The peaks and troughs of this beastly thing called cancer are extreme and I feel perpetually uneasy. It seems impossible just to fully relax for a moment and truly relish my girl’s batty sense of humour and her manifold funny ways. But that’s exactly what I have to do. There’s no way to see into the future, so ride this rollercoaster we must. That means being completely there with Cleo in every moment, internalising even trivial experiences, breathing her in, soaking her up. Sometimes, necessarily, being away from her and giving us both space, especially when that involves playing music. It does me an enormous amount of good to occupy that part of my life which isn’t just being ‘mum’, or now ‘carer’. They’re the most important jobs I could ever have, but my soul needs music to sustain its fragile equilibrium. I realise that is a thoroughly twatty thing to say but I can’t put it any other way.
Rest, my soul
The old familiar subconscious directs me to a song by Richard Strauss; Ruhe, meine Seele (Rest, my soul), a setting of a poem by Karl Henckell. Considering it was written as part of a wedding gift to his future wife, the song is unusually dark and chromatic; hardly an outpouring of sentimental love. But love takes many forms, including absolute gratitude for being rescued, even momentarily, from torment. Love can do that. I’m drawn to the closing lines:
Diese Zeiten sind gewaltig, bringen Herz und Hirn in Not.
Ruhe, ruhe meine Seele und vergiß was dich betroht.
(These times are powerful, bringing torment to heart and mind.
Rest, rest my soul and forget what is threatening you.)
I’ll keep working on that. Some respite from this pain would be welcome. Forgetting about a large and looming guillotine is a big ask.
Tightrope Walking
Don’t get too excited, ok? This overdue blog post may contain better news. I’m trying to resist the pull to temper it for you.
Earlier in the month Cleo underwent another MRI scan to try and understand what has been happening with the Fat Jellyfish. We debated the merits of putting her through it, as the best measure of her neurological wellbeing is how she presents. And we can all see that her symptoms have at least stabilised, with tiny but meaningful improvements in evidence every day. Plus, MRI scans are no fun… With guidance from the BCH Oncology team we decided to do it – the challenge being that scan pictures can’t be definitive and are likely to generate more questions and uncertainty than they can answer. We figured that patchy information was better than none.
Outside the MRI and the following results discussion we made August our mission to have a great time together. As the month draws to an end I am content with the sense that this has been Mission Accomplished. There has been an outing to see ‘Matilda’, afternoon tea and pub lunches with dear friends, precious time spent staying with family in Cumbria and London, being looked-after at the ever supportive Hope House and very important meet-ups with some of Cleo’s old and much-missed schoolmates. Lots of lazing around in between. A minor hiccup stay at the PRH for a couple of days and the usual peaks and troughs associated with ongoing chemotherapy that we’re beginning to understand and predict. She’s relished the company of Big Sis (and, if you catch her feeling generous, she might grudgingly concede having occasionally enjoyed the company of Litle Bro too). *This* is what life is about.
We went back to Birmingham to discuss Cleo’s MRI. The news was… good. It was good. The Jellyfish has not developed and in some parts it has shrunk a little bit, hence the improvements in Cleo’s presentation that we have enjoyed witnessing and encouraging. We could easily see the shrinkage when compared with her first scan. (Tempering alert: we could also see the rest of the damn thing lurking there in her brain, just as before). Essentially, the message is that the Jellyfish has been ‘switched off’. The damage it’s done remains, but, for now, it isn’t causing any further havoc. We don’t know how for long it’ll stay dormant – a month? Till Christmas? A year? Years???
Please, please, please… I start begging to some kind of mysterious unknown force, but there’s nothing there. Sometimes, when I look for something to lean on for hope, I wonder whether living as a raving atheist was the best decision I could have made. I guess we just have to be authentic to ourselves and take the consequences, whatever they are.
So, yes, it’s good news. What I really wanted was one of those extraordinary, quasi-miraculous moments that make it into the papers. But not this time; Cleo’s palliative treatment did what the team thought it would. And I know the path they predict her tale is due to take, so forgive me for not cracking open the champagne (or ‘non-alcoholic champagne substitute’, given the impending arrival of Little Bro 2).
My girl is doing great. She’s a complete joy as ever, finding her voice again, growing more mischievous by the day. Arguments with Oscar in the back of the car that once would have annoyed is now banter that makes me smile. I am a wiling and happy servant to her every back scratch, pass-me-the-clicker, ‘can I have some more?’ whim. When she laughs, which she does a lot, her whole body jigs along. It’s a full of life giggle that compels you to laugh too. It may not cure cancer, but it doesn’t half feel good. In ‘Matilda’, Miss Honey’s father is an escapologist. Perhaps our Cleo will be too ❤.
Ebb and Flow
2 in the afternoon and Cleo and I are planning a nap. A few days after her latest round of chemotherapy has finished and my girl is feeling it – she’s fine, bearing up as usual, just tired. In my increasingly elephantine state I will never say no to a snooze and say why don’t we go up to my room, it’s lovely and cool up there? Instant regret- I’m doubtful that she’ll get up there: two flights of stairs, the second being narrow and bendy. But she wanted to try and felt she could. And she did. I plump up the pillows and, after her epic journey, Cleo gratefully settles in to bed. I lay beside her and we drift off together listening to the birds sing, a lovely cool breeze coming through the window.
In the peace of the moment I take the chance to reflect on the last month or so. A few weeks ago Cleo had been doing really well. I likened it to watching a beautiful flower softly opening its petals – every day we saw her blossom again a little more. It was exciting to feel her coming back to us and recover so well from her gruelling treatment. We had fun as a family together again, going off to Alton Towers and celebrating her 10th birthday in style. Yet it wasn’t long before something knocked her flat out and set us back again. Just like that she suddenly had no energy, couldn’t walk, couldn’t help me dress her or feed her, barely spoke. As I drove her back to the hospital, having thrown some things for us both into an overnight bag, I sobbed. I was frightened. In complete honesty, at that moment, I wished for it to be over. I did. This was no life for my girl. No one would wish their child to have this kind of existence.
While in hospital Cleo had an MRI scan– nothing explicitly was said but I knew that the decision to put her through another MRI was underpinned by the fearful hypothesis that her tumour might have grumbled back into action. She was fatigued, her mobility was dismal, she needed us for everything. That’s how she was before treatment in May. However- the MRI came back with no evidence that the brain beast had developed. It was still very much there (dead or alive…? To be continued…) but it hadn’t progressed. Hey! Come on! It’s not the jellyfish! So… what is doing this to her then?
A process of detective deduction among the marvellous medical team leads them to identify steroids as the culprit. Blood tests were clear so it was likely that Cleo had caught a mild viral infection just at the point where her steroids had been weaned to a low dose. Once upon a healthy time she’d probably have shaken it off without even knowing she’d had anything. But this time her body’s own response to the virus didn’t kick in. Alongside the weight gain, loss of muscle tone and Cleo’s epic “tiger stripe” stretch marks all along her legs, a major side effect of taking steroids for a longer period of time is that her adrenal glands no longer produce cortisol, the natural hormone produced by the body to fight illness and cope with stress. Cleo caught her virus just at the wrong time, before her body’s natural responses were ready to intervene.
Now *this* we can cope with! A big whack of steroids later and she began to perk up. I got her home where she could get some proper TLC and looking-after.
It’s taken another few weeks of slow recovery, but our little flower is blooming again. My other posts have been full of doom, but I’m not going to let doom dominate this one. We’ve loved watching the World Cup together and have popped into school a few times. We seem to go out for lunch rather a lot. She’s drawing, doing riddles (they drive me mad!), wants to play games – my girl is thoroughly enjoying life. Cleo was even well enough to be left with my amazing Mum for a couple of nights so that Alex and I could flit off together for a much-anticipated trip to mark 20 years of said togetherness. Let it be known, the man is my lobster.
It’s a very hard phrase to accept, but the team supporting Cleo have urged us to understand that this is our honeymoon period. It’s now. It’s surreal, it’s painful, but it has finally dawned- life is never going to be better than this. And there’s so much beauty, laughter, so much love, despite the horrors. So much love.
Music, dammit
Where to start? I fear this might end up a jumbled nonsense, which would be a good reflection of where my mind is during this current period of time.
As usual, I write with tears. I reckon if you’re reading this, whether you know us or you don’t, you’ll have some investment in my Cleo. So I send advance warning that it doesn’t always make happy reading, bearing in mind the dual function of this blog was to record something of the wonder of my girl but also to help me process some of the dreadful madness that surrounds us without end.
Let me give you some of the good stuff. Cleo is on splendid form – she’s walking, reading, writing (things we thought she wouldn’t do again) and she’s singing, laughing, eating (things she has consistently been amazing at). She is, as always, a complete delight to be around and an endless inspiration.
Party lady
Cleo had her tenth birthday last week and we have so far made it a cracker. We put on a big party for her and all her classmates at the weekend. I wince at the phrase ‘making memories’ but I guess that’s what we were trying to do.
Too many times it has flashed through my mind that we might not get the chance to spend another birthday with her. Dammit.
Cleo has such a positive spirit, the fact she couldn’t join in with most of the games and the dancing didn’t knock her at all – she was thrilled to have her friends around her, to eat her own bodyweight in cakes and to listen to her favourite songs.
Cleo’s very favourite song, ‘One Call Away’ by Charlie Puth, was deemed too slow to play at her party, which is fair enough, it’s not exactly music to floss to. I’ve heard her sing it at the top of her voice while wearing headphones, oblivious. She’s so lovely. It’s on her You Tube playlist. The lyrics aren’t profound but they are very sweet and sincere. I associate it with my girl. Cleo’s song
No matter where you go
You know you’re not alone.
I’m only one call away
I’ll be there to save the day
Superman got nothing on me
I’m only one call away.
Listen to what music is telling you…
I have been thinking about music a lot recently – I mean, I always think about music! but I have noticed how my subconscious seems to know what I need to hear, or at least it reflects something deep-rooted that I might not like to look at so much. When we first got Cleo’s diagnosis I had ‘March to the Scaffold’ stuck in my head. (NB: I hate Berlioz so this was by no means a choice!). When I put makeup on in the morning ‘Vesti la giubba’ comes into my head, almost without fail. It’s a song from Pagliacci which refers to putting on a costume and carrying on, pretending nothing is wrong, despite the pain. There we go, cheers subconscious!
We went to Birmingham Children’s Hospital today for a brief review. I couldn’t wait to show off Cleo and I was gratified by the suitably ‘wow’ reaction from our oncology team. Yessssss!! Winning!! Fuck you right in the face, cancerrrrrrr!! Respite was brief, however, as we received a ‘curve ball’ re her diagnosis. No longer are we dealing with a Grade 3 anaplastic astrocytoma- we’ve changed gear and have a somewhat more sinister Grade 4 glioblastoma to get our heads around. As I said at the time, life can be a real bastard sometimes. Everyone in the room agreed.
After our trip to Birmingham today, while I’m writing, I’ve put ‘Pagliacci’ on. For some reason, tonight I was drawn to the notion of clowns killing each other violently and the sight of a tattooed Jonas Kaufman in a ruff flexing a flick knife.
Psychoanalyse that all you want.
I can’t have my music up too loud as Cleo is sleeping just next door. She gleefully tells visitors about her Dad and I keeping her awake because we laugh too much and have ‘cheese parties’. I think with fondness about how lucky she is (though I think she doesn’t know it) to have two parents who actually really like each other enormously. Currently, I have a fondness for the happy ending offered by Puccini’s La Fanciulla del West, which speaks of love and redemption. I think of Cleo when the heroine Minnie sings about her memory of her parents:
Down home in Soledad, when I was little I had a tiny, smoky little room above the kitchen in my father’s inn. And I lived there with father and mother. Ah ! — I’ve not forgotten; even now I see the men come in at sundown. Mother saw to the cooking and to the bar. Father dealt the cards. Mother, she was lovely, her little feet were pretty. Sometimes she’d take a hand at cards and I used to hide underneath the table, hoping someone would drop some money.
And sometimes I’d see her snuggle her feet close up to father’s. Oh, how she loved him!
Nice, isn’t it. I hope that’s what Cleo feels when she thinks of us.
Cleo is full of infectious life. She is my sunshine. She’s only just getting started. Oh, hello subconscious, yes, you’re right again. The last line of the glorious aria from Puccini’s Tosca, ‘E lucevan le stelle…’ (‘and the stars were shining…’) which always twists my heart.
E non ho amato mai tanto la vita, tanto la vita!
‘And I never before loved life so much, loved life so much!’
Dammit.
My girl
My lady Miss Cleo finished her radiotherapy/chemotherapy epic dual jellyfish-twatting sessions just over a week ago. Having expected to have an exhausted child flat out asleep on the sofa at the beginning of her recovery from the brutal delights of radiation, we have instead experienced the elation of seeing our daughter slowly come back to us. Radiation is doing its thing.
There is a new baseline of what now swells our heart with hope. A year ago, a few months ago, it was excitement about Cleo being picked for the school sports team, Cleo taking up the violin and being naturally really good at it, Cleo sweeping to the top of a climbing wall with pride and ease. Wondering what she’ll be.
Cleo having that incredible gift for bringing children together and making each one of them feel like the most important person there is. I so admire that in her. She is just a joy.
The new baseline - Cleo’s having a great day because she lifted her left arm when I was helping dress her. Because she nearly stood up by herself. Because she ate her coco pops on her own today and used her left hand to steady the bowl. Because she shuffled her backside into position in her wheelchair without much help. She tells us jokes and makes us laugh again. These are the new triumphs. More important than any that has gone before. But I want people to know and appreciate the whole ten years of Cleo’s awesomeness, not just this new Cleo, the one who now gets benevolent looks and invites kindness because of her vulnerability, not because of her triumphs or just her innate loveliness, of which she is completely unaware. It occurs to me, as a wealth of multi-disciplinary professionals come to us and offer their support, that they only now see the ‘new’ Cleo. Just as awesome, but different. Poorly. Fighting. Brave.
But this is my Cleo. You don’t have to call her brave, or courageous. She’s just doing her usual thing. Last night, she asks if she can come and sleep next to me.
Cuddles with Cleo are the loveliest experiences- she gets tight hold of you, pulls you close and her warm breath huffs and puffs in your face while she sleeps, and you smile because you’re not going to sleep like that but who cares, it feels delightful.
I’d love her to snuggle with me- but she’s not going to get up those stairs tonight. So I say I’ll come and give her a cuddle in her bed. We lie down and squish together- her fingers reach for mine. She looks into my eyes and smiles that contented ‘this is niiiiice’ smile. I dissolve. Hot tears start to roll; I don’t want her to see. But she hears my sniffs and my feeble efforts to conceal.
It’s been a strange day. When we go to clinic for check-ups I feel that the oncologists have been encouraged by Cleo’s super progress, but then reality tempers their enthusiasm and they are compelled to remind us that the bloody thing will come back and radiation was palliative, not curative etc etc etc. Inside, my heart implores them to throw us a bone, and I feel a strong pull that they want to throw one too but, they can’t. So, tears are always near the surface at the moment.
I cry (dammit) and tell her I love her so much, that I just want her to be well, that I wish I had a magic wand and I could take it all away. Cleo rolls over towards me (another reclaimed skill; go Cleo!) and holds me tight. She hands me her current favourite toy to hold - a funny-looking blue furry unicorn thing that smells of candyfloss. Such a lovely compassionate child - I smile gratefully and smell its sweet fur. In her soft, comforting voice, Cleo whispers “Mum. You’re sniffing its bum”. We laugh hard, together.
And that’s Cleo – you know what? Her essence is just the same as it always was ��
When Fluffy met Cleo
Four Radiotherapies and a Wedding
My first blog post last week was, I fear, rather bleak. So to redress the balance, let me tell you a little about our awesome Cleo and how well she has so far ridden the challenges of cancer treatment. Four radiotherapy sessions and one wedding later ��
Cleo’s cancer treatment
Cleo is having concurrent chemotherapy and radiotherapy, along with steroids, anti-emetics and antibiotics. That’s a lot to deal with and not what was originally in mind. But our beautiful lady was deteriorating before us and her oncology team had to take swift action. All through the diagnostic and now treatment process I have looked Cleo in the eyes and promised her that we, her old folks, would always protect her and we would never let anyone do anything to her that they didn’t need to do, or that we didn’t say they could. So she understands that this is how it must be. And she just wants to get better (her words).
Cleo had a mask made to make sure she is in the exact same position for each session of radiotherapy- it fits very snugly and, once it is lifted off, it leaves a little honeycomb pattern on her forehead – ‘Honeycomb Girl’ has become another nickname to add to the collection, which, after her left hand decided to go on strike, includes ‘Drophead’ (seriously, black humour just comes naturally in our family and she laughs at this, I promise, we’re not cruel!)
Here is Ella sportingly trying on a mask that once belonged to another child:
EJ is under there somewhere…
Cleo’s mask goes right over her shoulders too. She doesn’t like it much at all but, bless her, she puts up with it because she is AWESOME and wants to Defeat the Fat Jellyfish (her name for the blasted evil brain tumour, with its jellied tentacles splaying all over the place and poking into places they have no right to be). Lying on the radiotherapy table and being fixed in place has irritated her biopsy scar, poor sweetheart- known as her ‘stitchy bitches’ after a slip of the tongue one day. Oops ��
Four radiotherapies…
Last week in the hospital ward was hard going - I don’t think I handled it as well as I could have and I am hoping that we are all a little better prepared now for the stresses and strains of the week ahead. A week which includes my birthday, which I would otherwise have buried away but… aha! my ‘special’ birthday fundraiser for The Brain Tumour Charity. My goodness, the response from you wonderful people has been immense! All we hope is for as much good to come out of this dreadful situation as possible. That’s what you have given us- in return, we offer sincere, heartfelt thanks. What a boost this has given us.
(There are still a few days left to donate if you would like to make a contribution- please do also feel free to share, if wished. Non-facebookers can give directly to the charity here)
Radiotherapy lasts for about five minutes- that’s all! A lot of zapping goes on in that brief time and, afterwards, Cleo is completely zonked out. So far she has borne it well, but then last week was cut down to four sessions rather than the intended five because we hoped beyond reason that we’d be able to make it to the wedding of Cleo’s much-loved Uncle Tim (AKA Auntie Tilly) and Shenny (welcome to the family!) last Friday. Despite all the challenges, we got there and had a most wonderful, restorative time in the company of dearly loved friends and family. Cleo was even serenaded by one of her old pals on the ukulele. So much love going on ��
…And a Wedding
Thank goodness for our family and friends. Messages of goodwill sustain us, truly they do, but there’s nothing better than getting together for a laugh and a hug in person. Cleo spent most of Friday snuggled up with her Uncle Ben while he made her chuckle and much of Saturday being entertained by some of our very best buddies. All three of our gang had a great time – you see, even in times of horror and darkness there will always be sunshine when love is around.
Wow. It still hurts, but I’m trying �� A bit less despair for you today, a little bit more fun and laughter. Here’s our merry band at Tim and Shenny’s wedding:
After the ball was over…
All partied out ��
C is for Cleo
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
Jane's full blog is published here