A Duck-Shaped Octopus: A Family's Journey Through Childhood Cancer

By Roanne Barnes Hautapu

In 2013 Quinn Hautapu presented to hospital with the seemingly minor symptom of a limp arm, within a short time she was on a Life Flight to Wellington to work out the cause of a massive bleed on the brain. She was seven years old.

 

A month later, after brain surgery and numerous scans, the Hautapu family was given the shocking news that Quinn had brain cancer. What followed was 12 months of the most intense, emotional and difficult time that a family can experience.

 

From further brain surgery to remove a tumour, to radiotherapy, chemotherapy, and physical therapy, Quinn spent most of the next year in and out of Starship Hospital, while her family moved into Ronald McDonald House close by.

 

They were away from their Palmerston North home for most of the year.

 

The entire time it was uncertain if Quinn would survive.

 

In a day by day journal, Roanne Barnes Hautapu, Quinn's mother, has written a profoundly moving account of what the family went through, expressing the overwhelming trauma and gruelling realities of dealing with childhood cancer.

• Language: English
• Publisher: Atuanui Press
• Release date: May 27, 2024
• ISBN: 9781991159175

Book preview

A_Duck_Shaped_Octopus_Cover.jpg

I take a tentative step outside my protective zorb ball and become aware of the existence of other families living at Ronald McDonald House. Other families also going through insurmountable anguish and stress and grief.

I see a mirror image in their haunted eyes, expressionless faces, and aloof body language. We nod. Smile. Say hello. We do not ask the specifics of the circumstances that have bought us all together under one roof.

We bond and connect with a fiercely strong invisible thread. It is an eerily beautiful and bitter-sweet phenomenon based on no commonality aside from each having a seriously unwell child.

It is the loosest of connections. It is the tightest of connections.

Invisible Thread families.

A Duck-Shaped Octopus

A Family’s Journey Through Childhood Cancer

Roanne Barnes Hautapu

Atuanui Press

Other Books from Atuanui Press

Blood and Bone: Revelations of an Orthpaedic Surgeon by Russell Tregonning

Culture in a Small Country: The Arts in New Zealand by Roger Horrocks

A Book of Seeing by Roger Horrocks

On the Farm: New Zealand’s Invisible Women by David Hall

A History of Queen’s Redoubt and the Invasion of the Waikato by Ian Barton and Neville Ritchie

Time to Make a Song and Dance: Cultural Revolt in Auckland in the 1960s by Murray Edmond

Tomorrow the World by MK Joseph

Drongo by Ian Richards

Cocktails with Molotov and Tea with Mr Lee by Bernard Brown

The Waikato: A History of New Zealand’s Greatest River by Paul Moon

Ghost South Road by Scott Hamilton

This Explains Everything by Richard von Sturmer

Emily Jackson: A Painter’s Landscape edited by Bronwyn Nicholson

Re-inventing New Zealand: Essays on the Arts and the Media by Roger Horrocks

Then It Was Now Again: Selected Critical Writing by Murray Edmond

Acknowledgements

This book would not have been possible without my daughter Quinn providing such traumatic material to write about – for which I am entirely ungrateful...

I would however like to thank my mother, Beryl Just, for instilling in me at the earliest age, the joy of reading and writing; Keith Butler, for taking the time to read my manuscript in its infancy and for giving me the confidence that I was a writer; Fletcher’s substitute mothers – Jan Bevan and Tania Sigley – who have steadfastly supported our whānau in every way, before, during and after. And my publisher Brett Cross who was brave enough to jump on the train with us.

Thanks to the sponsors who helped make this publication possible:

Inspire Net and Shaping Success.

First published in 2024 by Atuanui Press Ltd

1416 Kaiaua Road, Mangatangi, Pōkeno, 2473

www.atuanuipress.co.nz

Copyright © Roanne Barnes Hautapu 2024

Isbn: 978-1-99-115917-5

Front cover photograph by Taniia from Operation Sugar.

Back cover photographs by Roanne Barnes Hautapu with thanks to Vanessa Baxter, Jim Hickey, Renee Wright and Jason Correia for permission to reproduce them.

Cover design by Quinn Hautapu.

All rights reserved.

No part of this book may be reproduced without prior permission from the publisher, except as provided under New Zealand copyright law.

Contents

Prologue

December 2012

January 2013

February 2013

March 2013

April 2013

May 2013

June 2013

July 2013

August 2013

September 2013

October 2013

November 2013

December 2013

Epilogue

Prologue

Paralysed down one side.

Stroke.

Bleeding in the brain.

Just seven years old.

Time has no context.

It has been seconds.

It has been hours.

It has been forever.

A silent scream shrieks inside my head.

I feel I have woken up in the middle of a nightmare.

Except I know this is real.

•

As night blends into a new day, my daughter, Quinn, is admitted to the Intensive Care Unit of our local hospital.

•

Medical Notes 07/01/13: 01.15 hours: I have not told them about the suspicion of an underlying tumour.

•

Medical Notes 07/01/13: 01.20 hours: Repeat CT. Acute on chronic cerebral hemorrhage. Mid-line shift (3.5mm). Lesion now 58mm x 38mm.

•

My friend Jan Bevan recalls: Quinn’s nurse was a really nice man. I’m sure he glossed over the truth to save anguish to us all. Quinn’s monitors kept beeping and her blood pressure dropped to something over 30. I think normally it should be more like 110/70. We asked why the monitors kept going off and I felt he really down-played the situation. We thought Quinn was sleeping but she was actually unconscious.

•

Medical Notes 07/01/13: 02.42 hours: Starship…will accept Quinn….

•

A doctor takes us aside and explains that Quinn needs to be transferred to the Starship Children’s Hospital in Auckland so she can be seen by the consultant neurosurgeon. I am told to go home and pack a bag before Life Flight arrives.

Jan thinks to write a list with me and offers to drive. I stand in the lounge at home with a suitcase. Seemingly basic questions from Jan are nonsensical to me. ‘Which is your toothbrush? Are these the shoes you want?’ I just do not know. Jan could be conversing in a foreign language for all the sense it makes to me.

Jan: I told Ro to just guard the bag and I’d work things out. I said top of the list was to make sure she had a damn bra. We didn’t want a repeat of Wellington.

Such a release to have a genuine laugh and joke in the middle of this craziness!

•

Facebook: 7 January – 4am: Quick update before I fly up to Starship Children’s Hospital with Quinn. She developed right side paralysis in her leg and arm and mouth this evening. CT scan showed a fresh bleed since Friday and larger than her original one. In ICU tonight. Jan Bevan and Ian Barnes will keep you updated.

•

My husband Jamie remembers: Almost as soon as Roey and Jan left to pack, Quinn’s machines started to beep and lights were flashing and staff were fiddling with things. I was so scared. I was scared Quinn was going to die and scared she would die without her mother with her. I just wanted Roey to hurry and get back.

•

Medical Notes 07/01/13: 04.25 hours: …Whilst she has been stable with us so far should she deteriorate she is a long way from Auckland and therefore it could be catastrophic.

•

We are not exactly told how serious the situation is with Quinn, but for me I feel she is straddling a precarious line between life and death.

Jan: Yes. I really thought she was going to die.

Jamie: Me too.

•

Medical Notes 07/01/13: 04.30 hours: Problem. There have been no retrieval arrangements done…

•

Jan: There was some kind of heated argument between our ICU and Auckland as to when the plane was arriving. It sounded like a communication issue between the two hospitals. We were left out of the loop a bit but I guess the staff didn’t want to put the worry on our shoulders.

•

The equipment monitoring Quinn’s vital signs summons our attention once again with its caterwaul.

Instinctively I croon into Quinn’s ear ‘Quinny. Mummy is right here. Quinny. Don’t go anywhere. Quinny come back to me.’

The eerie chant of the machines stops. All is quiet again.

•

Jan: We were told to be careful what we said in front of Quinn because it was unknown what she could actually hear. I think we kind of knew she was unconscious but your own mind protects you and doesn’t allow you to go there and think that.

•

We have developed super powers – Jamie, Jan and I.

We need no rest.

Nor nourishment.

We shed no tears.

We do not need to speak because we can communicate telepathically.

Or so it seems.

•

Medical Notes 07/01/13: 05.55 hours: It seems that there has been a miscommunication around the transfer to Starship.

•

It is explained to us that no one has actually activated the flight team to retrieve Quinn. The decision has now been made to wait for a fresh crew to start their shift, and that they are due to arrive around 11am.

•

I wonder at what stage ICU discuss the possibility of organ donation.

When they think a patient might die?

When they know a patient will definitely die?

When a patient is declared brain dead?

There is no hesitation – I know if the worse comes true, that I would, could and should, consent to Quinn being an organ donor.

•

Jan: It was strange as a nurse on the morning shift recognised me from my own stay in ICU in 2008 when I had my twins. She was one of twins herself.

•

My mum, Beryl Just, rings from Australia. Like a detonation of dynamite my tears explode. It is the first time I have cried since Jamie’s phone call to me at the cafe many, many hours earlier. I wail to my mum that I am so scared.

Almost simultaneously the doors swing open and the Life Flight team pour in, their presence overpowering the unit. This time we are prepared for the alien invasion – the suits, the bed, the equipment.

•

Jan: The Life Flight team arrived. The Starship nurse with them rubbed everyone up the wrong way – bolshie, no people skills and throwing her weight around.

Immediately I am excluded by the procedures and conversation, by the nurse accompanying the retrieval team. I bristle at her attitude and demeanor, and the unpleasant vibe that is expelled from her. I re-name her in my mind and abbreviate it to TPM.

•

Jamie: It was like a bad dream watching Quinn get loaded up onto the Life Flight bed again. I just couldn’t believe this was all really happening. Just total disbelief and fear.

•

I am asked if I suffer from travel sickness, as if so, I can be given some anti-nausea medication. As hot acidity gags my throat, I reply that I do not usually, but feel like I am about to vomit now.

•

Jan: Quinn and Ro were ready to leave ICU. I gave Ro a big hug but what did I say to her? What can you say?

•

Jamie: We followed Quinn and Roey and the flight team to the ambulance bay. As the ambulance drove away I wondered if I would ever see my little girl alive again.

•

Jan: Before I went back to Ro’s house to help Jamie pack, we went to the hospital travel service so he could collect flight tickets for himself and Fletcher, plus information about Ronald McDonald House where they were booked to stay.

•

Jan: Facebook: 7 January – 12.47pm: UPDATE for you all. I saw Quinn and Ro off on the plane this morning to Starship. Quinn had perked up and managed a smile at the thought of going on the plane. Ro and Jamie doing as well as expected under the circumstances. Fletcher and Jamie are flying up this arvo to be with Ro and Quinn. Lots of tests are scheduled to try to work out what is going on.

•

Jamie: I was a total wreck waiting to fly to Auckland. All I could think about was Quinn dying. I kept visualising her in a casket and her funeral.

•

We disembark from the ambulance at the Palmerston North Airport. Quinn is loaded into the rear of the Life Flight plane and I automatically go to follow. TPM brusquely orders me to sit in the front of the plane. I do not argue. I do not question. I do what I am told. But I am extremely unhappy at not being allowed to sit by my daughter’s side as I had done on the transfer to Wellington Hospital.

We are in the air. My unfocused eyes gaze out the plane window. My mind is in chaos. My teeth are clenched. Time is an enigma. I hear activity in the back of the plane – movement, rustling, murmurs. I wonder what is happening with my baby. Are they having to medically intervene? Is she dying? Is she dead? Why do they not tell me something? I am too scared to turn around and see what is happening. I continue to gaze out the window and clench my teeth. And breathe. And pray.

We land at Auckland Airport. Quinn is alive. Relief surges over me. The feeling turns to fear again when TPM carelessly tells me Quinn will need to be intubated when she arrives at Starship. I stare. I have no words. I have become aphasic and have lost the ability to communicate. I wait for an explanation. To be given more information. A medical update. But there is none forth coming from TPM.

TPM comments that I take a lot of photos. For me it is as automatic and natural as breathing. I always have a camera with me and I always take photos. It does not occur to me though, to ring anyone or text anyone to give an update.

Quinn is settled into the awaiting ambulance. TPM commands me to sit up front, and like a soldier at a court martial, I simply obey. There is a discussion about the status required for the lights and sirens. It all seems totally surreal. The front seat of the ambulance is high up and the windows give a panoramic view. The ambulance roars down the motorway and the traffic splits like a zip to allow us through. Every roundabout, give way sign, stop sign, traffic light, the vehicles yield to the squall of the siren. In my mind I reverently thank the Auckland motorists for their respect and cooperation with the ambulance.

We arrive at Starship Children’s Hospital and Quinn is admitted to the Paediatric Intensive Care Unit. Doctors, questions, forms, scheduling of tests. I am told Quinn will require brain surgery.

That day.

As soon as it can be arranged.

•

Jan: Facebook: 7 January – 4.08pm: Quinn is having a scan now. She gained a little movement in her arm and leg on the way to Starship which is positive.

•

Medical Notes 07/01/13: CT Scan – There has been an increase in the amount of associated swelling/mass effect. There has been a reduction in lateral ventricular size and early uncal hernination. Acute blood has extended down to the body of the corpus callousm. Was reported to have deteriorated en route.

•

A PICU nurse asks me if I would like to sit down and proffers me a chair. It has not occurred to me to sit. She asks if I have eaten and suggests she organises some food for me. Across the room TPM sardonically calls out that I am not entitled to a meal. The other nurse whispers to me to ignore her.

I sit. I eat. I ignore. I do exactly what I am told to do.

I am incapable of thinking for myself.

•

Jan: Facebook: 7 January – 5.19pm: MORE NEWS: Quinn will be going into surgery soon to relieve the pressure on her brain and to investigate any other possible causes to the brain bleeds.

•

It is time for Quinn to go to surgery.

I cannot process this reality. I am heartsick Jamie is not here. We wind through a warren of tunnels, corridors and lifts to the adjoining Auckland Hospital.

I ask TPM if I can go into the operating room with Quinn and be with her when she is anesthetised. She replies no. And that I would not like it anyway, because it would be like watching a dog being put down.

A dog being put down.

A dog being put down.

A dog being put down.

With those cruelest words ringing in my head, my precious baby girl is whisked out of my reach, my sight, my orbit. Perhaps out of my life forever.

I am alone. Abandoned. So truly frightened. I have been given no instructions on what to do or where to go. I stand helplessly in the pre-op room and eventually stagger out the door.

I am trapped. I am in a staff-only area and cannot access the lift or doors. The corridor is lined with beds. I lean over one. Out of the depths of my soul belches a primal scream of emotional agony. My wailing reverberates in my own ears. My tears are torrential. The searing pain envelopes me and I weep and screech with uncontrolled abandon.

My phone rings. It is my friend Tania Sigley calling for an update. Impeccable timing in my moment of absolute crisis. Bawling on the phone to her, the lift doors open and Jamie, Fletcher and a nurse burst out.

•

Jamie: Roey had a look of absolute terror on her face. I was freaking out that I was too late and that Roey was going to tell me Quinn had died. I asked her ‘Where is my baby?’ and Roey told me to hurry, that she had already gone into theatre. The nurse took me through and they let me gown up to go into theatre to see her and give her a kiss. I felt so relieved to see her one more time but I was so scared that she needed to have her brain operated on.

•

The nurse escorts us back to PICU. He reassures us that we will be contacted as soon as there is any news about Quinn, and that the best place to wait would be at Ronald McDonald House. We collect my suitcase and silently navigate our way.

•

In a discombobulated haze, the events of the past few days, weeks, ricochet through my mind at a ferocious pace…

December 2012

Intruders in Quinn’s brain are starting on a rampage of havoc.

Unbeknown to anyone, underdeveloped embryonic cells have taken on a life force of their own.

Stealthily they morph and mutate. Spawn. Divide and multiply.

And multiply again. Fragile tentacles of blood vessels accompanying them.

On and on they forge their path of destruction.

A literal ticking time bomb waiting patiently to unleash its full terror.

•

December starts with a hectic weekend. The first Saturday of the month Quinn participates with Brownies in the local Christmas parade, and in the evening we all go to our friend Tarn’s house-warming. The next day Quinn goes to Sunday School, then onto my brother Ian’s house. She comes home very excited about her cousin. ‘Amirah has hurt her arm!’ she exclaims ‘I think it might be broken! I think she will have to go to the hospital! And see a doctor! And have an x-ray! Maybe an operation! A cast and a sling!’ So much excitement.

•

The time bomb in Quinn’s brain goes *tick tick tick*

•

Quinn wakes up on the morning of Monday 3 December 2012 and gleefully informs me that she is unable to make her right arm work properly; that something is wrong with it, just like Amirah’s. She asks me if I will take her to the hospital.

Exhausted, not in the mood, I grunt at her to stop fooling around, to just get organised. Quinn insists her arm really will not work. I humour her continued protests and help her get dressed. I see her arm moving – wiggling from the shoulder to hand and smile knowingly to myself. Quinn insists her arm is moving by itself, and I roll my eyes in frustration. I bundle my objecting child into the car to take her to school, and she vomits out the open door.

‘Okay,’ I sigh, ‘looks like you do really need to stay home.’

‘Can you take me to the hospital then?’ asks Quinn.

‘Because you spewed? No,’ I answer.

Quinn settles into bed and falls back asleep almost immediately. I want to go back to bed too – I am tired, so tired.

My husband Jamie gets home from work. I tell him the tale of Quinn’s arm, and he enquires what the doctor thought.

‘Oh for goodness sake! Of course I haven’t taken her to the doctor! She’s faking the arm thing. I’ve seen her moving it. She wants to have something wrong with it,’ I retort.

‘Well I think she needs it looked at,’ Jamie argues.

•

The next day I muse that Quinn is doing an admirable job of keeping up the ‘my-arm-won’t-work’ scenario. I have to go to work and cannot be bothered battling Quinn about her fantasy illness, so I ask my mother-in-law Margaret if she can have Quinn for a few hours. Jamie rings later in the day to see how Quinn is and what the doctor had to say.

‘Oh seriously! I’ll take her to the doctor then if it stops you banging on about it.’ I sigh, and begrudgingly make an appointment.

Our GP is able to squeeze Quinn in later that day, so I shuffle her brother Fletcher off to my friend Bridie’s house across the road.

I am taken aback that Dr Parry views Quinn’s complaint seriously. And even more surprised when he says he would like me to take her up to the hospital to have it investigated further. I feel embarrassed that Quinn can sucker him in with an imaginary complaint. But the first flicker of unease dances through my mind.

We arrive at the Emergency Department of the Palmerston North Hospital and the staff read over the referral letter that he has written to them. I ring Jamie, explain what has transpired, and ask him to meet us at the hospital.

At 6.30pm, less than half an hour after walking through the hospital doors, we are on the Child Assessment Unit (CAU) at the paediatric ward. The Registrar, Dr Chris Ingham, examines Quinn and asks a lot of questions, but is unable to find anything glaring obvious about her flaccid arm. As Quinn is laying on the bed, I brush the hair off her face and the healing graze from a fall, catches my attention.

‘By the way,’ I tell him as an afterthought, ‘Quinn hit the left side of her head when she fell off her scooter last week.’

Armed with this new information he rings the on-call Paediatric Consultant. She relays back that Quinn will require a CT scan, as a left side injury with a right side problem, requires further investigation, and that Quinn will also need to stay in hospital overnight for observation. Those contradictory feelings of embarrassment and unease flare up again.

‘Shit! Maybe there really is something wrong with Quinn,’ I start to think, ‘maybe this really isn’t all an act.’

Quinn is moved to the treatment room to have an IV line inserted for the CT scan – a room we had been in numerous times before with her brother Fletcher.

•

Quinn: It was cool to get an IV line in because I’d never had one before and Fletcher had had heaps.

•

We trundle off to the radiology department for the scan, and Quinn is quite bemused with all the attention. The radiographer is very pleasant and