eight seasons: our family's journey with childhood leukaemia

EIGHT SEASONS

OUR FAMILY’S JOURNEY WITH

CHILDHOOD LEUKAEMIA

SANDRA EVANS

Copyright Sandra Evans Preview Copy Print and Copy Restricted

Pages may be omitted Researchman Publishers

Copyright © Sandra Evans 2009

All rights reserved. No part of this publication may be reproduced,

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without the prior written permission of the publisher.

The information, views, opinions and visuals expressed in this

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directly or indirectly from the contents of this publication.

Published by:

The Researchman Publishers

PO BOX 1843, Milton Q 4064 | Medical College P.O. Trivandrum –

695011 Kerala, India

www.researchmanpublishers.com

A Special Initiative of:

International Program of Psycho-Social Health Research

Central Queensland University

www.ipp-shr.cqu.edu.au

A copy of this publication can be found in the National Library of

Australia.

Evans, Sandra

Eight seasons: our family's journey with childhood cancer/Sandra

Evans.

1st ed.

ISBN: 978-0-977540-53-5 (pbk.)

This book is a work of non-fiction based on the life and experiences

of the author. Names, places, dates, sequences and events may have

been changed to protect the privacy of some people referred to in

this text. Apart from content changed to preserve privacy, the

representations made in this book, are to the publishers knowledge

true and accurate.



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http://www.ipp-shr.cqu.edu.au/

Contents

Preface ..................................................................................... vii

Chapter 1

The Diagnosis .................................................................... 11

Chapter 2 Banksia................................................................................ 27

Chapter 3 Just like Rapunzel ............................................................. 42

Chapter 4 Double Trouble .................................................................. 65

Chapter 5 Living with Leukaemia .................................................... 80

Chapter 6 Chemotherapy at Home ................................................. 112

Chapter 7 Big School ......................................................................... 134

Chapter 8 Children, Chemotherapy and Behaviour .................... 147

Chapter 9 ‘With these wings I can beat even the worst days.’ .... 167

Chapter 10 Dare to Hope .................................................................... 183



Epilogue Six Months Post-Chemotherapy .................................... 200

Appendix A ........................................................................... 213

Appendix B............................................................................ 203

Appendix C ........................................................................... 213

References .............................................................................. 221



vii

Preface

This book may have caught your attention as you might

have a child with cancer; in which case, your need to read

our story could be about surviving the journey. Hopefully,

our story may help relieve some of the panic one feels,

when one learns that their child has a life-threatening

illness, by the simple fact that others have been there and

have made it through. Perhaps you have picked up this

book in the hope that you can support someone already on

the journey.

Diagnosis is devastating. Once your child has had all

the medical scans, tests and a name is given for the cancer,

all that is left is hope: it is what you survive on everyday

and use, along with faith and optimism, to transcend the

fear.

The treatment for leukaemia is quite long—between

two to three years. There were a multitude of challenges

our family faced after Tahlia’s diagnosis with cancer. They

ranged from the emotional, to the practical. Emotionally,

there was the challenge of coming to terms with my child’s

mortality. This was an incredibly weighty notion to deal

with—it completely affected my outlook on the world. The

fear, that you could lose your child, weighs heavily on

nearly every other aspect of day to day living.

For instance, instilling boundaries with Tahlia

became a delicate balancing act between, questioning the

reinforcement of usual boundaries, and wanting to be

flexible and understanding, and, let her get away with

something ‘just this time’ because she was so sick.

Practically, I found that the assistance from hospital

support staff, after the first six months of treatment,

reduced significantly for the journey that continued away

from the security and support of the hospital.



Preface

viii

I had a driving need to record our journey—it was

such a significant one. I wanted Tahlia to be able to look

back and have a record of the entire struggle, but most

importantly, a record of her strength and our family’s

unyielding bond. I wrote this book to give some insight

into the daily events that take place when a child has

cancer.

I hope it may be a gift of security—assisting parents

in foreseeing what may be around the corner, with a child

on chemotherapy, and offering an insight into how we as

parents coped. During our journey with Tahlia, I was

reassured by the journeys of others who had been down

the same road.

My hope is that it may help give air to some of the

many emotions, we as parents feel but often cannot

express. Knowledge is comfort, and hopefully this book

will provide some comfort, for parents/carers of children

on chemotherapy, with adjusting to the reality of living

with a child with cancer.

If you are caring for a child with cancer, I wish you

much love and light on your journey.

Thank you to my husband, Randall, my beautiful

girls, and my family for their support and encouragement

with writing this book—this is their journey too.

I would like to thank Michelle Stock, Carol Lynch

and Wendy Favorito for reading my very first draft, and

for offering me the encouragement to keep on writing.

Without their support this book might have remained a

diary.

Special thanks also to the team at The International

Program for Psycho-Social Research—(IPP-SHR) and

Researchman Publishers. In particular, I would like to

acknowledge, with appreciation, the support and

guidance I received from Hamish Holewa and Pam

McGrath. Thank you for your belief and your enthusiasm



Eight Seasons

ix

in this project. I was very fortunate to have my editor,

Stasia Kail-Buckley, by my side, who gently directed some

of my most rambling thoughts, and whose diligent

approach improved the final manuscript.

I would like to acknowledge the support and

direction offered to me by Kris Liebke. Thank you for the

many hours spent proof reading my manuscript and for

his clinical input—not only regarding medical terminol-

ogy, but his insight into the human, in particular child-

hood, experience of cancer.

Thank you to Isabelle Morissette, for giving me

permission to include the beautiful influence, she and

Louis Tamakoshi, had on our lives.

Thank you to Jodi Rodgers and Jodi Woodward, to

our General Practitioner, and to our paediatrician—for

their thoughtful comments, and their valued perspectives

on the direction of this manuscript. Thank you also to Ann

Riddell and Stacey Hughes, for hours of proof reading and

for their encouragement.

Finally, thank you to the wonderful staff at The Royal

Children’s Hospital, Banksia Ward; and a very special

thank you to Tahlia’s oncologist. It is difficult to find the

right words to express our immense appreciation and

gratitude. I am sure, on occasions throughout this journey,

she has felt our frustration rather than our sincere

gratitude for the brilliant job she does. She helped give our

child a second chance. In essence, she has given us the

most precious thing in life: a chance to see our daughter

grow and mature, and live a full life. Additionally, another

factor that makes her special: she undertakes her role as an

oncologist through the eyes of a mother. That surely, is

immensely challenging, and at times, a heart wrenching

position to be in; thankfully, for us, and the many others

she treats, she performs her role with amazing compassion

and understanding.



x

JUST FOR THIS DAY1 Just for this morning, I am going to smile whenever I see your face, and

laugh when I feel like crying.

Just for this morning, I will let you wake up softly, all rumpled in your

flannel and I will hold you until you are ready.

Just for this morning, I will let you choose what you want to wear, and

smile and say you're beautiful.

Just for this morning, I am going to step over the laundry, and pick you

up and take you to the park to play.

Just for this morning, I am going to eat a huge breakfast, with bacon

eggs, toast and waffles, and you don't have to eat any.

Just for this morning, I will leave the dishes in the sink, and let you

teach me how to put that 100 piece puzzle together.

Just for this afternoon, I will unplug the telephone and keep the

computer off, and sit with you in the garden blowing bubbles.

Just for this afternoon, I will not yell once, not even a tiny grumble

when you scream and whine for the ice cream truck; and I will buy you

one if he comes by.

Just for this afternoon, I won't worry about what you are going to be

when you grow up or who you might have been before your diagnosis.

Just for this afternoon, I will let you help me bake cookies, and I won't

stand over you trying to 'fix' things.

Just for this afternoon, I will let you put all kinds of barrettes in my

hair, and put lipstick on my face, and I will tell you how pretty you

have made me look.

Just for this afternoon I will take you to McDonalds and buy us both a

Happy Meal so you can have both toys.

Just for this evening, I will hold you in my arms and tell you a story

about how you were born, and how much we love you.

Just for this evening, I will let you splash in the bathtub and not get

angry when you throw water over your sister's head.

Just for this evening, I will let you stay up late while we sit on the porch

swing and count all the stars.

Just for this evening, I will bring you glasses of water, and snuggle

beside you for three hours and miss my favorite show on TV.

Just for this evening, when I kneel down to pray, I will simply be

grateful for all that I have and not ask for anything, except just one

more day.

Sally Meyer



11

Chapter 1

The Diagnosis

No day can be so sacred but that the laugh of a little child

will make it holier still.2

Robert G. Ingersoll

You never fully appreciate the precious moments in life

until life presents you with reasons to treasure every

moment. I am not a morning person, which makes being

jumped on at 5:30am, whilst soundly asleep, by a four-

year-old clad in a pink, sparkly, fairy costume, complete

with glitter wings and wand, a ‘precious’ moment.

I lie in bed feigning sleep, trying to stifle a laugh as

the tips of Tahlia’s fairy wings tickle my ear. I can feel her

soft breath on my cheek as she waits, her face inches from

mine, for some indication that I am waking. I hear her

cheeky, little girl giggle, and feel that this is just about the

best sound in the world; it represents all things good.

I roll her over onto her back, and her father and I

tickle her tulle clad body and she squeals with laughter,

‘Come on Mummy, can you get up?’ Rarely in Tahlia’s

four years of life has she ever allowed us to savour sleep.

Tahlia entered this world after a painful labour, only

to be whisked away from her anxious parents to have her

airways suctioned: it was suspected she had swallowed

meconium during labour. In my post labour haze I

remember feeling an awful fear that something could be

wrong with our baby. I learnt later that fortunately she

had not inhaled or swallowed the meconium but that it

was a close call. This was my introduction to the fear and

worry that a parent feels for their child, from the day they



The Diagnosis

12

are born. I never expected the fear to be so strong and

primal. I knew this was part of being a parent, but I never

in my life expected the fear that was to come.

I did not get to see my beautiful baby girl until five or

six hours later. I awoke in recovery after my placenta was

removed in theatre and was transferred to the neonatal

ward. I heard the incessant, high pitched, newborn

scream, from down the hospital corridor, that I knew

instinctively belonged to me. Tahlia was blessed with a

remarkable set of lungs, and a vocal capacity, she has

continued to heartily use, since her first moments of life.

When Tahlia was two-days-old our paediatrician was

completing his routine examination and he gently said,

‘Now, I don’t want you to panic.’ Instantly, my heart rate

tripled.

‘I can hear a heart murmur so we will send Tahlia for

a cardiac ultrasound,’ he concluded.

My husband, Randall, and I were not familiar with

things medical. I hadn’t been in hospital since having my

tonsils removed at the age of four. The ultrasound was

difficult as Tahlia screamed the entire time, partly due to

the cold gel on her tiny chest and partly due to being held

down, naked in a freezing room.

We discovered Tahlia had a ventricular septal defect

(VSD): a small hole in the muscle of her heart. This was

quite unsettling for us as new parents; despite being

assured that it would probably close over by itself. Over

the next twelve months, Tahlia had several ultrasounds,

which gave us the opportunity to progressively watch the

hole close over and become a mere speck on the ultra-

sound screen.

We were like any other new parents with a first child

struggling with the role changes in our relationship that

occur when this dependent life bursts upon the scene. This

was made infinitely more difficult when at eight weeks of



Eight Seasons

13

age Tahlia was diagnosed with gastroesophageal reflux.

Her oesophagus was ulcerated from the constant reflux of

acid from her stomach. This diagnosis was comforting for

me: not only did it lead to much needed treatment for

Tahlia, but it validated my struggle as a mother; as my

sense of failure was enormous.

The other mothers in my antenatal class—who were

my reference group—did not experience any of the

problems, we were experiencing. Therefore, I concluded I

must be doing something horribly wrong. Why can’t I

cope with being a mother? Why doesn’t my child do

anything but scream? Their children fed, slept and gooed

and gaaed on cue. Mine screamed blue murder for most of

her waking moments, fought at the breast; on a good day

slept for forty minutes during the day, and only a few

hours during the night. I was overwhelmed, bone tired

and becoming depressed through sheer lack of sleep. If it

wasn't for Randall and my mother supporting me through

this period, things could have been a lot worse. Tahlia’s

constant distress weighed me down as I was unable to

console her. This, combined with months of sleeplessness

and Tahlia’s endless screaming, resulted in me developing

pneumonia when she was six-months-old.

When Tahlia began her eighteenth month, our

journey with Tahlia’s various food intolerances also began.

I started to catch onto the immense impact that diet could

have on one’s health.

At two-years she developed eczema, to the point

where her skin would crack and bleed, and she would

scratch and cry; topical creams made little difference.

Shortly after this, Tahlia was diagnosed with asthma

and required Ventolin. Along with this came a whole host

of behavioural issues that raised the eyebrows of her

grandparents and saw a couple of day carers throw up

their hands in defeat. Very intense tantrums, hyperactiv-



The Diagnosis

14

ity, refusal to eat and impulsiveness, coloured our days

with Tahlia.

Several months before Tahlia turned three, I was

dressing for work when I heard my mischievous daughter

tentatively call out, ‘Mum.’

Then, Tahlia called more insistently, ‘Mummy, help!’

The urgency in her voice made me drop my lipstick

into the bathroom sink and hurtle towards the garage—

quite a feat as I was seven months pregnant. There was

Tahlia two feet off the ground, hanging from the bottom of

the garage door by three fingers from either hand, legs

flailing in the air crying, ‘Mummy, I’m stuck!’

Being in one of her adventurous moods, Tahlia had

decided that she wanted ‘a ride’. She had pressed the

garage door remote, sprinted to the door as it was lifting

and caught hold. Her impulsiveness and hyperactivity had

some convinced she would end up with a diagnosis of

attention deficit hyperactivity disorder (ADHD)—but I

was certain there was another explanation. As a psycholo-

gist and mother, I was aware of the weight labels such as

ADHD carried and was convinced that I would get to the

bottom of this behaviour, and its physical manifestations,

before anyone labelled her anything.

Not long after the arrival of our second daughter,

Lauren, we attempted the ‘elimination diet’, and found

that Tahlia had terrible reactions to nearly all artificial

colours and additives and many naturally occurring

chemicals in foods. By the age of three we had her on a

strict diet, one who allowed us, for the first time, to meet

the true Tahlia: one who was not irritable due to itchy

skin; not tetchy because of a constant runny nose and

constant cough, or tummy upsets. She was a completely

different child and the change in her was a blessing. I

remember sitting on the steps to our kitchen, several

weeks after commencing the diet, watching Tahlia play



Eight Seasons

15

calmly and respond politely to her father’s requests, and I

cried. The change was profound; for this was the first time

I felt that we had seen our child unaffected by any ailment:

her skin was clear of eczema, her nose was dry, she had

not coughed for weeks and she was, simply, a pleasure.

Just as life was settling with Tahlia, at Lauren’s six-

week check our General Practitioner (GP) referred us to

our paediatrician as he suspected Lauren, too, had a heart

murmur. This time around I was prepared for the

ultrasound and was not worried as we had seen Tahlia’s

VSD knit by twelve months of age. However, Lauren had

not one VSD but an atrial septal defect (ASD)—an

abnormal opening in the dividing wall between the upper

filling chambers of the heart—as well. So began her six-

month checkups—but by twelve months of age neither

opening had closed. This was a complication that we

would re-visit in the future; as the nightmare that sat just

days away began to unfold before us.

Tahlia had just turned four, it was autumn 2006. She

had become a happy, vibrant little girl, full of sunshine,

with a big personality for a little girl. Her energy was

unstoppable, as was her constant verbal narrative. One

afternoon, I arrived to pick her up from preschool. As I

entered the noisy playground, I stopped in my tracks, for

my usually active daughter was slouched in the middle of

the playground with slumped shoulders, looking

completely worn out. Her teacher queried, ‘Tahlia has

been tired this week, is she okay?’ I assumed Tahlia had

had a big week and decided to keep her home over the

next few days to let her recuperate. After a few days of rest

she picked up and returned to preschool and I returned to

work.

Soon after, Tahlia began complaining about pains in

her legs. I dismissed it as she seemed to recover so quickly,

especially when distracted by her beloved Hi 5 TV show:



The Diagnosis

16

within minutes of complaining Tahlia would be seen

barrelling around the kitchen singing, ‘Five in the air, let’s

do it together...Hi 5!’

However, as time wore on the pain persisted, but

after several visits to our local GP, I was reassured that it

was just growing pains. I justified this by reasoning she

was the right age for this kind of thing. There was a

gradual increase in irritability and I ignored my motherly

instincts again, putting Tahlia’s symptoms down to her

just being tired. I talked to other mum’s about my

concerns and received much advice that normalised these

symptoms that, taken in isolation, any child could have.

I took the girls to the beach and I watched Tahlia as

she clumsily attempted to climb the ladder to the slippery

dip. Usually she would fly up this small three-step ladder

but on this day she was hesitant and said, ‘Mum, can you

help me?’ I started to wonder about the possibility of

arthritis and made a note to myself to call my friend,

Maree, who has had rheumatoid arthritis since childhood,

and seek her advice.

Life continued its frenetic pace, with two working

parents, and two girls under four: scrambling to get

through breakfast on time; bundling two little ones into

the car, ready to be dropped off at day care, then rushing

to get to work. Tahlia’s occasional complaints seemed to

dissipate into our hectic but happy existence.

Some months later, the area around Tahlia’s left eye

became swollen. The swelling seemed to come and go,

almost like an allergic reaction, which was confirmed by

yet another trip to our local medical surgery. She had no

pain or redness, so therefore, did not require treatment.

Several weeks later I was alarmed when I felt a lump

under her eye; I took her back to the GP and became more

insistent. We received a referral to an ophthalmologist.

Although, still, at this stage, I was not putting any of the



Eight Seasons

35

slept the majority of the day and night. She stayed this

way for about four weeks.

10th June - It is cold in Tahlia’s room; she is

snuggled under the covers of her hospital blan-

ket. I sit on the window seat—which doubles as

my bed—starring at the hospital entrance, out

of the huge glass windows that make up one

wall of her room. I just want to opt out of this

nightmare and desperately escape leukaemia,

but I know I have to hold it together. The door

gently clicks open; a nurse pokes her head

around the door saying, ‘You have visitors.’ In a

single file, with drawn faces, my Mum, Dad and

younger brother, David, walk into the room

with our Lauren. Their shattered expressions

seek out my face for some indication of how

they should act. I begin by sobbing uncontrolla-

bly and my Dad bears my weight as I cling to

him in a bear-like embrace. I give voice to the

fears that have been spinning around my head

for days, ‘I can’t do this, I don’t have the

strength for this.’ My Father, not given to open

displays of emotion, battles not to break down

himself, ‘It’s got to get better than this Sandra,

it’s got to.’ My Mum’s hands find my face bur-

ied in Dad’s chest and she hoarsely whispers,

‘You can do this, you will need every fibre of

strength you have in your being, and I know

you have that strength.’ The intense moment of

emotion is broken. Everyone jumps up to disen-

tangle Lauren from the power cords, and IV

tubing, attached to Tahlia and her IV pump. I

think, thank God for Lauren, she relieved the

tension with her antics. Randall and I hug her

and shower her with kisses. It feels like an eter-

nity since I last held her or even changed a



42

Chapter 3

Just like Rapunzel

What is a challenge, if not a friend in disguise to strengthen us?4

Sri Chinmoy

Life was no longer regular, nor, the days usual—they were

tumultuous and disarming. My emotions mimicked

Tahlia’s mood: when she was coping, so was I. Addition-

ally, Tahlia’s progress with treatment constantly influ-

enced the complex emotional states I was experiencing. I

found it impossible to disconnect from her cancer, as it

suffused every moment of my life. It became difficult to

create any distance from this disease. The sense of

hopelessness was immense. Nothing was predictable

anymore. I had no routine to follow and the usual rules of

our daily life no longer existed.

One of Tahlia’s least favourite hospital routines was

that every urine and bowel movement had to be collected,

and the date and time recorded. The nurses would

measure her fluid output, against the input, to ensure

there was no dehydration and her stools showed no signs

of diarrhoea, constipation or infection. Tahlia hated the

pans and longed to use the toilet. She would not let me out

of her sight; therefore, she would shuffle alongside me to

the pan room, dragging her IV pole along. In the future,

she did it to stretch her legs, and, for a change of scenery.

On about the seventh day, Tahlia’s hair began to die.

It gradually became dull and matted; she refused to let me

brush it. I called a hairdresser to the hospital to cut it into a

short bob so it would be easier to care for. We played

down the fact her precious locks were being cut off. I took



Eight Seasons

43

pictures, Tahlia said nothing. She just stared out the

window with her beautiful big eyes. When it was done

Tahlia hopped back into bed without uttering a sound.

Tahlia’s treatment protocol required her to have

weekly lumbar punctures which were performed in

Banksia Outpatients: a department especially set up just

for child oncology patients, where Tahlia had her first

cannula experience. In Banksia Outpatients there is a small

theatre staffed with two or three nurses, an anaesthetist

and a registrar. This is where the oncologist would

administer intra-spinal chemotherapy and take samples of

spinal fluid to determine the presence of leukaemia cells.

For Tahlia’s first lumbar puncture, I carried her in

and placed her on the theatre table; she began crying

immediately. She was, no doubt, wondering what pain

was going to be inflicted on her by all these people. As I

consoled her, they prepared the anaesthetic mask and

asked her to lie down. Tahlia refused and demanded to sit

up—she often does to this day. She cried, as did I, and

resisted the whole time. The anaesthetist noticed my tears

and queried the other staff, ‘New diagnosis?’ Not waiting

for any obvious affirmative response. This was horrible.

They led me out as I watched Tahlia twitch and convulse. I

looked up to find Randall looking in the theatre door

equally as horrified as I was. We hugged and sobbed in

full view of the entire outpatients waiting area. Everyone

knew we were the new parents on the block. I looked at

the other mothers who sat calmly, drinking coffee at their

children’s bedsides, as their children emerged from

theatre, bald, sedated and recovering. I wondered how

they could possibly manage this apparent serenity.

A nurse led us to an empty bed and said gently,

‘She’ll be fine and she will be out soon—have a coffee.’

Neither Randall, nor I, could think about refreshments. We

sat hand in hand with tear stained faces, our eyes fixed on



Just like Rapunzel

44

the doors of the theatre room. Shortly afterwards, Tahlia

emerged sound asleep. The nurse checked her blood

oxygen levels, fitted an oxygen mask to Tahlia’s face and

frequently checked her puncture site for potential seepage.

I held Tahlia’s hand and waited the twenty minutes it took

her to rouse from the anaesthetic.

After several weeks, Tahlia and I were far better

prepared and somewhat toughened by the procedures. I

drank hot chocolate and ate morning tea, dry-eyed, whilst

waiting for her to emerge from theatre—how far we had

come in a month. I now watched the new parents,

frantically waiting for their child to appear from theatre,

with compassion and understanding—I had been there.

Sometimes, for good reason, the staff provided the

most minimal information. They knew how unbearable it

would be if they gave you an insight into the horrors that

potentially awaited you. Part of Tahlia’s treatment proto-

col was an intra-muscular chemotherapy injection in her

thigh called, asparaginase. The nurses had indicated it was

quite painful.

26th June - I prepared Tahlia the best I could and

was honest with her about the fact that this in-

jection would hurt. She started to cry on the

way to the treatment room. I hated this walk to

the treatment room. I hugged her tighter as if

the harder I squeezed the less fear and pain she

would feel. Into the room we trudged. I telling

myself I must remain calm and robust for

Tahlia’s sake, knowing she would look to me as

always to judge the mood of the event. I did not

do such a great job of holding it together. Two

nurses and I had to hold Tahlia down, and

again, Randall stood behind us and held me.

The needle went in and Tahlia screamed, her

fingernails sank into the skin on my neck. I



Eight Seasons

45

could not bear watching my daughter endure

this. Again, I felt I was not strong enough for

this. I understood, at this point, why some par-

ents opt to hand their children over to the

nurses at the treatment door and never enter,

preferring the nurses to be seen as the ‘bad

guys’. This was unbearable, but paradoxically I

felt it imperative that I be there every time

Tahlia had any procedure. I was her soft place

to fall after the trauma of painful procedures. I

felt it was the least I could do, after all it was

she who had to be the bravest of us all. I left the

treatment room deflated, cradling a whimper-

ing Tahlia, silently swearing at Leukaemia and

everything it stood for and for what it had done

to our family and my little fairy princess.

Banksia Ward’s walls were being brightened by the

work of a talented artist. She brought to life the most

beautiful magical and mythical creatures. She asked Tahlia

if she would like anything painted on the wall outside her

room. Tahlia, in one of her more animated moments said,

‘Yes please, I would like a Tahlia Fairy.’ The theme outside

our room, and around the nurse’s station, was a deep sea

theme, so this artist created a beautiful fairy with golden

hair and flippers.

A fortnight slipped by and the staff and oncologists

gently suggested that Tahlia could manage the next round

of chemotherapy at home. This was providing home was

only ten minutes away from the hospital. However, we

had nowhere close to live. The idea of my new nursing

responsibilities overwhelmed me. I felt tentative about

administering chemotherapy at home. It was daunting to

think about holding Tahlia down, twice a day, as she

screamed and fought, whilst I syringed medicine into her

mouth. At this point, I would have been happy to live on



Just like Rapunzel

46

the ward forever, but, I knew this was not possible. I knew

I would get to a point where it was not desirable.

Randall was the protector in our family. All that

changed when Tahlia got sick. He was not able to have

any effect over what happened to Tahlia; and he felt the

loss of control quite significantly. To ease our circum-

stances, he had been searching for accommodation and

had been put in contact with the Leukaemia Foundation.

They provided us with a wonderful two-bedroom unit not

far from the hospital. Tahlia was becoming more with-

drawn, taciturn and unresponsive. Her treatment protocol

required her to take dexamethasone—the steroid

medication we call ‘dex’, every day for four weeks.

Dexamethasone dramatically altered Tahlia’s personality

and appearance: she was constantly hungry, moon-faced,

barrel-chested and solitary. Tahlia rejected anyone’s

attempts to engage her in conversation. She was disinter-

ested in visitors or gifts, preferring to pull the sheets up

over her face and pretend to be asleep. Initially, I was

devastated by this change in my daughter’s demeanour. I

repeatedly asked nurses, ‘Where had my happy daughter

gone? Would she ever come back?’ Their assurances

barely helped. I felt my little girl was slipping away from

us. I felt helpless and completely ineffective.

One morning, the ‘clown-doctors’ came to Tahlia’s

room. Their antics were comical: they fell into bins, mock

injuring themselves, sang and played ukuleles, blew

bubbles and had voluminous pockets full of tricks,

balloons and stickers. These wonderful performers

practically stood on their heads to get her to smile, to no

avail. Tahlia looked at them with a fractious expression

and told them, ‘I don’t like clowns, so you two should just

go back to the circus and stop all the noise.’ I found myself

apologising profusely to the reproached clowns.



Eight Seasons

47

Right from the beginning we worked closely with the

occupational therapists attached to Banksia Ward. With

them we developed effective behavioural techniques to

help Tahlia cope with painful procedures and toxic-tasting

medicines. We offered her as much choice as possible.

Within the first few days of therapy, one of the most

helpful strategies Tahlia learnt was she could scream and

yell as much as she liked during procedures, but she had

to hold still. Tahlia could choose whether she had liquid or

tablet forms of her medicines, and, Tahlia could choose

whether she took them herself or whether I syringed them

into her mouth. These strategies worked well for her and

gave her a little control over an uncontrollable situation.

Through working with the occupational therapists,

Tahlia developed a special relationship with Jess—the

occupational therapist attached to Banksia Ward. Jess

helped Tahlia through some scary procedures. Nursing

staff, and a registrar, had nick-named Tahlia ‘Missy Moo’.

One morning, I recall glancing out the window of Tahlia’s

room toward another wing of the multi-story hospital

building and did a double take, thinking I was seeing

things. Jess had painted an enormous picture of a cow

with ‘Hello Missy MOO’ in large letters and stuck it on her

office window. Tahlia and I, having procured a large piece

of butcher’s paper, painted an equally large ‘Hello Jess’

sign for Jess to see. There were so many special staff

members within oncology whose small deeds added so

much joy to the children’s days. I have great admiration

for these staff; they have a dedication to their roles, and

care for children and their families with remarkable

compassion and strength.

It came time to talk with Tahlia about what leukae-

mia was. Again, I had so much gratitude for Jess who

helped enormously with this most important task. Being

four, Tahlia had no concept of the seriousness of her



Just like Rapunzel

48

illness, nor did she know that people could die. This was

certainly not something we were in any hurry for Tahlia to

learn. Jess explained leukaemia to Tahlia using a much

told story involving a giant-sized cloth ‘bone’. The bone

had a flap that lifted to reveal the bone marrow section.

This was filled with felt blood cells and leukaemia cells

that could be ‘gotten rid of’ by chemotherapy medicine. I

returned from making a cup of tea to see Tahlia and Jess,

sitting in Tahlia’s bed, having a war between ‘Captain

Chemo’ and the felt leukaemia cells. This information

dispelled much of Tahlia’s fear of treatment. It introduced

Tahlia to the obvious side effects, such as, hair loss and

lethargy. This information gave Tahlia an understanding

of why she needed to be in hospital and why her legs hurt.

I feel this initial explanation laid an excellent foundation

for Tahlia to comprehend why she had to undergo

procedures and treatment. Therefore, although Tahlia kept

up a healthy resistance to many painful procedures, she

always cooperated and permitted the staff to do what they

needed to do to make her better.

Eventually, we built up the courage to leave hospital

with our precious girl. Everything was going as planned:

Tahlia was swallowing her medicine (with much cajoling

and chasing around the couch) and doing lots of sleeping,

on the lounge. She spoke sparingly, and then, only to ask

for more food preferring to indicate with nods of her head,

or, slight finger movements to show her desire, or lack of,

for a certain type of food. Her large blue eyes would

follow me around our little unit, rarely leaving my face,

always seeming to search my emotions. She would not

allow me out of her sight. If I attempted to leave the unit

to hang the washing, she would become frightened and

teary, demanding I return or that she came too. I was her

island in this ocean of fear and uncertainty.



Eight Seasons

49

Our first day back at hospital, for Tahlia’s first cycle

of chemotherapy as an outpatient, came just three days

after her discharge. The last autumn leaves fell from the

trees outside the hospital; they crunched under our feet as

we pushed Tahlia in her three-wheel pram towards the

entrance. She was too big for the pram, but far too big for

me to carry and much too tired to walk. This day is forever

etched in my memory as I tasted fear like never before—I

thought I was going to lose our daughter. We waited for

hours in Banksia Outpatients. Tahlia was restless and not

communicating. Finally, we had our consultation and

approval to go ahead with the chemotherapy. We were

sitting in the now all too familiar outpatients waiting

room, which was as bustling and hectic as it was theatre

day. Children requiring lumbar punctures and intrathecal

chemotherapy were scheduled for theatre all on one day.

Tahlia had been acting odd all morning, but I could

not put my finger on what it was. Tahlia was sweating,

which was not unusual for her being on steroids, but now,

she started speaking incoherently. My fear escalated and I

gripped Randall’s arm and said, ‘Something’s wrong with

Tahlia.’ Suddenly, her eyes began rolling back into her

head—she was having a seizure. Fortunately, Randall ran

to get a nurse, as I was frozen to the plastic chair unable to

help Tahlia—I was terrified. The nurse took one look at

Tahlia, grabbed the pram out of my hands and ran.

She wheeled her to a recovery bed whilst instructing

the administration staff, ‘Page an oncologist, patient in

seizure!’ Two of the registrars got there first and gave

Tahlia Valium rectally. They waited for a response, and,

when there wasn’t one, they administered several anti-

seizure drugs through her Port-A-Cath. There was hardly

any change in Tahlia’s eye’s rolling; the on-call oncologist

was concerned that Tahlia was not responding to the

medication. No one was telling us what was going on and



80

Chapter 5

Living with Leukaemia

Of all forms of courage the ability to laugh is the most profoundly

therapeutic.6

Dr Gordon Livingston

Early August - The trees are bare; the wind cold

along the street from our unit to the hospital. I

zip up the front of my jumper as we trundle

down the hill back to our unit after spending

the morning in outpatients for Tahlia to have a

lumbar puncture and chemo. I push Tahlia in

her three wheeler pram, as she barely holds her

head up, already nodding from tiredness and

medication. I pull her favourite spotty dog

blanket further up around her chin and pull her

beanie down further around her ears to ward

against the wind.

Tahlia and I were starting to develop a little routine. On

treatment-free days we would be up early, and we would

head off to a nearby park before the crowds and other

children descended on it. When they did, to reduce any

chance of Tahlia catching anything infectious, we would

dash back home. Tahlia would collapse on the couch—this

activity tired my previously over-active child so much she

would sleep for several hours. I would catch up on emails

and phone calls, and then, I would spend the next few

hours encouraging her to eat.



Eight Seasons

81

I was beginning to understand the wisdom behind

the dietician’s assertion that Tahlia would need extra

weight for the more intensive cycles of chemotherapy.

Now she was off steroids her appetite had ceased

altogether. She complained that everything ‘tasted funny’

and that ‘my tummy just isn’t hungry’. Tahlia lost three

kilograms over the ensuing weeks. So began a new phase

of unease for me: if Tahlia lost too much weight they

would insert a feeding tube in her nose and start her on

liquid feeds. Tahlia was fascinated by the feeding tubes in

the other children, but declared vehemently she did not

need one. I think the fear of yet another foreign object

being inserted into her was intolerable. So, with some

guilt, I used the threat of a feeding tube as motivation for

her to eat just the tiniest amounts of food each day. Often

that consisted of a sip of clear chicken soup for lunch and

the same for dinner—this would continue for days at a

time.

The role of nurse was one I reluctantly accepted.

Initially I had little confidence in my nursing abilities, but

it was a role I assumed, because the stakes were high and

there was no other option. The energy I spent persuading

and convincing Tahlia to take medications—pinning her

down for procedures and supporting her frayed psyche—

was constant and draining. Tahlia had experienced a loss

of normality in her life. She was enduring painful

injections and operations, and was frequently being forced

to eat when she felt disastrous. No wonder she was often

out of sorts and solitary. Her escape became books she

would sit for hours, pouring over books, creating dialogue

from the illustrations as she could not yet read. Her

imagination took her to wondrous lands far away from the

reality of her illness. This is often what Tahlia and I spent

much of our time doing, whether it was at home, in




82

Banksia Outpatients or in hospital—she escaping from the

harsh reality of her life, and me, passing the time.

We both missed Randall and Lauren terribly and

seeing them only on the weekends was bittersweet.

Randall was exhausted from travelling to and from us

every weekend. Additionally, there was the pressure of

holding everything together as a single parent to Lauren

and managing full time work. Frequently, he seemed to be

at a breaking point. Not only was Randall barely handling

the strain, but, my mother and father had cared entirely

for Lauren through the first few months of Tahlia’s

diagnosis. They had also driven Lauren to Brisbane on

weekends just so I could spend some time with her. My

mother, who was working, would then come home and

care for a clingy, emotional one-year-old, and would, no

doubt, be up half the night with Lauren. She was

becoming exhausted. Without my parents’ help we would

not have made it through this period.

I wondered how much this separation was affecting

Lauren. Randall would work all week. On Friday

afternoon, he would pick Lauren up from day care and

they would arrive in Brisbane late on the Friday night. I

would gather gently the sleeping Lauren from the car and

carry her tiny body into our unit. I would stare intently at

her for several minutes—looking at how Lauren had

grown and changed since I last saw her. The hurt in my

chest was strong; I missed Randall and Lauren intensely. I

cried as I put her to sleep, wondering neurotically if this

separation would have some long term effect on our bond

as mother and daughter. I felt our bonding had been

disrupted brutally. I felt cheated because of this. It was

tough on all of us. Tahlia missed her father enormously

and she longed for her little sister. All weekend we would

play like mad, exploring the city and parks. Then, each

Sunday, at lunchtime, we would pack Randall and



Eight Seasons

83

Lauren’s things for their trip home. Saying goodbye was

agonising—Tahlia would sob uncontrollably. I would sob

for Tahlia and for me; because saying goodbye to my

family made my heart ache and my head throb. The unit

felt morbid on Sunday nights—I know the trip back for

Randall was no better.

It was around this time we asked a family friend,

Maddy—who had worked as a nanny overseas—to come

and live at our home and help Randall. With Maddy’s

help, Randall was able to manage the running of our home

and care for Lauren. He was also—importantly—able to

put more focus back into his work. Maddy’s assistance

helped immensely with the logistics of managing the daily

care of Lauren: drop off to day-care and meal preparation,

to name a few. Wistfully, I had hoped that Maddy’s

presence would somehow ease the emotional burden that

Tahlia’s cancer had on our marriage. Supporting one

another, long distance, was fraught with difficulties. It was

the first time our family had been separated. We were both

so overwrought. Trying to run a family split by, both

distance and the burden of constant worry, was the most

difficult challenge Randall and I had faced.

Tahlia would have a list of the bits and pieces

Randall had to bring from home on the weekends. Mostly,

she requested more books and fairy paraphernalia—

sparkly wings and shoes, wands, beads and bangles. We

seemed to be moving half the contents of our house to our

little unit, as every time Randall arrived he would arrive

with something else from her bedroom at home. Tahlia

loved to dress up in her princess outfits which brought her

fairy fantasy world into her real world. I believe this

helped Tahlia cope with the day to day trauma of her

cancer treatment.

Tahlia would wear her rainbow fairy dress to Banksia

Outpatients for her lumbar punctures. The dress had




84

wings and layers of tulle in the colours of the rainbow.

Tahlia would have her trusty fairy wand and either a

crown or tiara on her head. The nurses could hear Tahlia

coming, clomping precariously and loudly, in the high-

heeled shoes she insisted on wearing, down the corridor to

outpatients. What a sight to behold—Tahlia, in her fairy-

drag, wobbling on high-heels, complete with self-applied

makeup.

One weekend my mother brought Tahlia a Sleeping

Beauty dress and the black wig to go with the outfit.

Tahlia thought it was brilliant—she had instant hair! So of

course, it had to be worn to the Banksia Outpatients Ward

the next day. Not only did I have to walk in public with a

dwarf-sized Sleeping Beauty by my side, but, I had to

smooth things over, with the anaesthetists and oncologists,

as to why they had to—yet again—burrow through layers

of princess tulle to do Tahlia’s lumbar puncture.

One weekend, Randall arrived very excited—he had

purchased some hair clippers. He decided to ask Tahlia to

shave off all his hair so that she would not feel alone with

being bald. I thought this was a beautiful gesture of

support for Tahlia. She had an immense amount of fun,

first, creating a Mohawk hairstyle for her father, before we

lopped off all of Randall’s hair. The simple pleasure of

shaving her father’s hair brought about so many giggles.

We laughed heartily with her delight, and at the newly

bald father and daughter team. With a renewed intensity,

we relished this joy. These were the times, outside of the

hospital, where one could almost believe there was no

sickness. However, not far from my happy thoughts,

resting on my head, like a dull weight, was the heavy

feeling that cancer creates, which contrasts to the

happiness you feel being with your family.

Once, along with my parents, we took Tahlia to the

city markets in an effort to do something normal. Tahlia



Eight Seasons

85

spied a new fairy dress that she ‘just had to have’. In true

Tahlia fashion, immediately after the purchase, she tore off

her clothes, in the middle of the market, to put on her new

possession. Tahlia was a sight: nearly naked, puffy and

bruised from frequent Port-A-Cath access, but with an

unstoppable spirit. I did not notice a lady passerby who

had stopped, entranced by all the feverish excitement with

fitting the new fairy dress. In a spontaneous, heartfelt,

gesture, she delved into her bag and produced a gorgeous

knitted hat with crimson flowers crocheted on the side, the

exact colour of Tahlia’s new dress. With tears in her eyes

she offered this hat to Tahlia, saying, ‘Such a beautiful,

brave girl could not be without a matching hat.’ My

mother and I were so humbled by this random act of

kindness, from a complete stranger; we were both very

emotional in thanking her.

Along with the beautiful gestures we experienced

from complete strangers there were also experiences that

were not as pleasant. One of these experiences was a trip

to McDonald’s in late September, about four months into

treatment. Tahlia’s blood counts had climbed as had her

energy levels and her desire to ‘get out of the unit’. She

decided that she wanted McDonald’s fries—a suggestion

that I wholeheartedly agreed to, as she had not eaten a

thing for days. There was also the lure of the playground

at McDonalds. After devouring two cartons of fries, Tahlia

headed for the McDonalds playground. As we approached

the climbing equipment, I could hear the puzzled

conversation of two boys already on the play-gym. One

boy, intensely staring at Tahlia, said in a loud whisper,

‘Nah it can’t be.’

His friend responded, ‘Yeah, girls have hair—it

doesn’t.’

This prompted the next line of reasoning, ‘Well, if it

is a boy then, why is it wearing a dress?’ I resisted the urge




104

heart which carried the burden of Tahlia’s cancer. Through

these days of the week it was ordinary life; then on Friday

and Saturday nights I entered the cancer battlefield. This

world was filled with empty chemotherapy syringes,

sickness buckets, and steroid induced rages. The nights

spent in the hospital were far worse and too painful to

describe.

As I sit and reflect upon the images of my time in

hospital, and my weekend visits with Tahlia, I realise, my

memory of the shock and terror of dealing with childhood

cancer, has begun to fade. It seems like my mind is

protecting me from re-experiencing those horrible

memories.

This reminds me of when I was a young boy asking

my grandfather inquisitive questions about his participa-

tion in World War Two. I would beg, ‘Please tell me all

about it Pa, what was it like?’

He would respond, ‘I just don’t remember.’ My

grandmother told me, after his passing, that he had

remembered—he had nightmares about the war but did

not want to tell his grandchildren about the painful

images, as the retelling would unearth too many intense

emotions.

Our journey to Brisbane every Friday evening always

filled us with excitement, as well as, unease. The relief I

felt, when I laid eyes on Tahlia, filled me to bursting, for

each time I was able to reassure myself of her survival. My

eyes would search her face and body, surveying the

damage caused by the barrage of chemotherapy and

steroids inside her tiny body. Most weekends, the visual

effect of this treatment on her body would take my breath

away, like I had been hit to the stomach. However, I felt

unable to show my true emotions—Tahlia and Sandra

needed strength and courage to fight the many days

ahead.



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The loving embraces between Lauren, Tahlia and

Sandra were my fondest memory of our visits. This alone

made the trip worthwhile. To see my girls together,

rejoicing in one another’s company was very moving. On

the Friday night, once the girls were asleep, there was time

to debrief and catch up on the week’s events. Sandra

would talk about Tahlia’s treatment and her progress, as

well as, the progress of the other children on the ward and

other events. This time was very important for both of us.

The great positive was that Sandra was able to share the

grief and burden of being on her own in Brisbane, and it

made me feeling I was connected to Tahlia’s treatment and

to the decisions we had to make, together, about her

treatment.

Departing on Sunday was one of the most heart

wrenching events. The first few times Lauren did not

know what was happening, so she didn’t become upset by

her sister’s and mother’s tears. However, after several trips

back home, Lauren began to understand that she would be

leaving her mother and sister for another week. The

separation was awful: Tahlia would begin to cry when we

would begin packing our bags. She knew it was time for

us to return home. This would trigger Lauren and she

would be quite distressed in the car, crying for her mother.

This was heart breaking; Lauren was too young to reason

with and explain that we would be back soon. Lauren

would remain unsettled for the first night home and the

day after. She would often ask for her mother and Tahlia.

This was frustrating for both of us as she could not

understand where they were. I hid Lauren’s requests from

Sandra hoping to protect her from more anguish.

For Sandra, coping on her own was immensely

difficult, but, in the same sense, it was just as difficult for

me to be away from them. I felt a complete lack of control

not being able to be there through the day to day events. I




106

knew that Sandra needed me to comfort her, and talking

over the phone was frustrating, as there was no way to

physically communicate my support. I felt on the outside:

I was not able to attend any medical appointments, or

have any input into decisions or discussions with doctors.

Many of my questions remained unanswered because I

was not able to be there and ask them straightaway.

Bringing Tahlia home for Christmas was the best

thing since her diagnosis. We were a family again.

Although things were still very tenuous regarding Tahlia’s

health, it was obvious being home lifted Tahlia and

Sandra’s spirits. It strengthened our family against the

fight with cancer. Lauren was also more happy and

contented at having her big sister and mother home. Now,

I could finally be involved in Tahlia’s treatment, and help

Sandra manage the day to day hurdles with being a parent

to Tahlia while she was on chemotherapy. I still feel we

were one of the lucky families: the hospital was near

enough that we could make the drive to it each weekend.

Some families, who lived hundreds of kilometres from the

hospital, did not have the luxury of weekend visits.

Additionally, Tahlia’s cancer allowed her to continue her

treatment from the family home, rather than staying in

hospital, like some children whose cancer diagnosis was

more aggressive.

I learned one of the most important ingredients, in

coping with the stress of fighting cancer, is to support one

another, and the support of those who loved us. There

were certainly hard times, where our relationship was

strained, but the relationship we had with one another,

with our families, and with our friends, helped sustain us

when our emotional reserves were depleted. I learnt you

should never be afraid to ask for help, or even just a hug

from loved ones, because this replenishes the internal

fortitude that diminishes in the battle against cancer. I



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more leg pain, and Tahlia began to pick up respiratory

infections more frequently. I turned to alternative

medications, to alleviate the stress on Tahlia’s liver and

kidneys. Randall and I had researched several alternate

supplement options for her and were importing them

from the USA. To help her liver, Tahlia was taking a

product called ‘Natural Cellular Defence’, which removed

heavy metals and toxins from her bloodstream, and safely

excreted them through the urine. To boost her general

health, Tahlia was taking a juice supplement bursting with

vitamins and antioxidants, as well as, probiotics to assist

in rejuvenating her cells. These natural alternatives were

supported by Tahlia’s oncologists. They advised me these

supplements were safe to use, and would not interfere

with her chemotherapy drugs. However, I got the

impression they believed I was throwing my money away.

I often wondered should those doctors ever have to walk

in my shoes, whether they would do the same for their

child and give them every available chance.

I began to purchase more organic products like

chemical-free shampoos, toothpaste and cleaning

products. We switched to organic chicken, and bought as

much local, pesticide-free produce as possible from

farmers’ markets. Getting Tahlia to eat these fresh fruits

and vegetables was, of course, a different story. In

between cycles of steroids, her appetite was greatly

reduced, and, as her dose of methotrexate was increased,

her sense of taste plummeted. This was extremely

frustrating, as I could see she wanted to eat, but nothing

tasted like it should. As a result, Tahlia’s diet was poor, so

it seemed even more important to supplement it with

vitamins, and other products, in the hope it would balance

this out. Tahlia had, only twice, been exposed to the concept

of death: firstly, the death of our dog, Molly, and then,



Dare to Hope

186

when my grandmother passed away this year. My mother

and uncle nursed my Grandma until her death. Christmas

was quite empty without her, and we missed her presence

greatly. Tahlia was frequently upset. Often, when I would

pick her up from school, I would to be told Tahlia had

been crying during the day, as she missed her Gran-Gran.

We talked with her about what it meant to die, and I

explained Gran-Gran’s body was buried, but her soul was

in heaven. Tahlia wanted to pick out a star in the sky that

was just for Gran-Gran. Tahlia grieved intermittently and

we encouraged her to talk about her Gran-Gran as much

as she felt she needed. We answered as many questions

that Tahlia came up with as possible. I felt she dealt with

Gran-Gran’s passing well. However, I was not prepared

for Tahlia to awaken, towards her own mortality, as soon

as she did.

Tahlia and I were weary after a long morning spent

waiting. It was an intravenous chemotherapy day, and we

waited for our paediatrician, who was late due to being on

call, and then we waited for Cancer Care, who was

delayed due to an issue with the delivery of Tahlia’s

chemotherapy from the pharmacy. We finally arrived

home late that afternoon, and I started to prepare Tahlia’s

night-time chemotherapy. I sighed—tonight was the worst

night of the month: there were thirteen tablets for her to

swallow. Tahlia came downstairs and stared at the tablets.

Stubbornly, she folded her arms across her chest and

defiantly said, ‘I am not taking these.’

For months now, I had been giving Tahlia the

standard answer to her reluctance: ‘I know it’s not fun—

but you know the doctors say we have to keep taking

these so leukaemia does not come back.’ In the past, Tahlia

would consider this for a moment, then comply and

swallow the tablets, but, in the last few weeks, she had



Eight Seasons

187

been more resistant and this answer appeared to be

wearing thin.

Tahlia was four days shy of her sixth birthday. ‘What

would happen if my leukaemia came back?’ Tahlia asked.

I barely raised my head from cutting the vegetables for

dinner, despite the increase in my heart rate.

‘Well, I guess you may not remember, but, when you

were first diagnosed, your legs pained a lot,’ I replied.

‘And, you might get a fever and have to go back to

hospital to have antibiotics.’ The seconds seemed to drag

by as Tahlia considered this new information.

More insistent this time, Tahlia asked, ‘What would

happen if the antibiotics did not work?’ I held my breath. I

knew where this was going and I desperately did not want

to deal with this right now. I felt unprepared to explain

her mortality.

I decided to give Tahlia little bits of information,

thinking she might not need the whole story in order to

satisfy her curiosity. ‘I guess you would get really sick

Tahlia,’ I said tentatively.

There was silence as she absorbed this statement.

Then Tahlia said, ‘Would I get sick enough to die?’ There

it was—Tahlia had asked ‘it’.

Tears tumbled down my face. Tahlia looked at me

and said, ‘Mummy—why are you crying?’

It took me several seconds to speak; my throat was so

tight with emotion. ‘Because, the answer to your questions

is, yes, sweetheart,’ I said. ‘You have a really serious

illness and if you did not have your medicines you might

die.’ I was crying quite hard. I walked to the kitchen table

and sat down with a thump.

Tahlia stared at me and began to comfort me saying,

‘It’s all right Mummy—it will be okay.’ The compassion

from her only made me cry harder.



Dare to Hope

188

Then Tahlia’s questions came thick and fast: ‘So if

you have leukaemia you can die?’

‘What about other cancers?’

‘Who has died?’

Over the next half an hour, Tahlia experienced almost

the full range of emotional reactions, just like one would

expect an adult to experience when facing their mortal-

ity—but that process usually takes months or even years.

Tahlia experienced denial, anger, shock, grief and then

acceptance—one smack-bang after the other.

First, she was in denial—Tahlia accused me, ‘You are

not telling the truth Mummy; no-one dies of cancer; we do

not know anyone who has died of cancer.’

I sat silently, searching for the right words, hoping

she would not ask about Gabe. During my silence, Tahlia

read my mind and yelled, almost desperately, ‘See—Gabe

is still alive isn’t he!?’

My tears flowed easily as I replied, ‘Oh Tahlia, there

is something Mummy did not tell you—six months ago

Gabe died.’

Tahlia retorted stubbornly, ‘That is not true Mum;

you talk with Josephine on the phone.’

I had saved the funeral notice and the booklet from

Gabe’s funeral service, as I knew this time would come,

but did not perceive that it would come as early as this. I

gently took Tahlia up to my bedroom, and showed her

Gabe’s service booklet and his photograph. Tahlia wanted

to know what was written within the funeral service book.

Through tears streaming, I read some of the farewells to

Gabe. Tahlia then wanted to know how he died and why. I

explained that he had a different cancer; and that the

medicines and treatment just stopped working, and he

had died.

Tahlia’s anger came next: she raged around my

bedroom, yelling, ‘This is not fair that I have this. You



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189

don’t have this; Lauren does not have this; my friend Rosie

doesn’t have this. Why am I the only one in my class that

has this?’

I tried to explain about the rarity of childhood cancer

but Tahlia was too angry to hear me. I became worried as I

was not able to calm her. Lauren—our youngest daugh-

ter—was becoming quite upset and I was unable to focus

on her at all. I picked up the phone and left a message for

Randall to come home from work straight away. I feared I

had said too much for Tahlia to cope with. I sat on the

corner of our bed crying heavily at Tahlia’s distress, and

wondering what had possessed me to explain to a six-

year-old that she had a life threatening illness.

Unable to calm Tahlia, I began to repeatedly affirm

her anger, and I agreed, along with her, that cancer was

extremely unfair. Tahlia quietened eventually, crawled

into my lap and started sobbing, ‘I am so sorry that my

body got this Mummy.’

Fresh, hot tears fell from my puffy eyes. ‘Oh, my

beautiful girl—never, ever believe, that you did anything

to get this illness.’ I told her. ‘You did nothing wrong; you

did not ask for this, it is just bad luck.’

My precious Lauren was sitting next to us, wiping

Tahlia’s and my eyes, with a tissue asking, ‘What wong

mummy?’ All this was far too complicated and intense to

even contemplate answering poor Lauren, and, after what

we had just been through, I certainly did not dare attempt

any response to my three-year-old.

Thirdly, came Tahlia’s shock—she had become

fearful. I had never seen such a frightened look on her

young face. Tahlia was in shock and her hands trembled

slightly—she was white as a ghost. At that moment, I

knew Tahlia was facing her mortality head on. She was

visualising her future. I gently said to her, ‘You might



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190

have some questions for Mummy—you can tell me how

you feel, if you like.’

Tahlia took my face in her hands, and, looking deeply

into my eyes said, ‘Mummy, do you think my cancer will

come back?’ I wanted to lie and promise her it would

never return. I wanted to save her from the pain of reality.

However, Tahlia deserved the truth, and we had always

been honest with her since the beginning; but I needed to

deliver the truth in a way that would not scare her

anymore. I told her honestly, I thought, and I hoped, her

cancer would not come back. I then went on to explain

why I felt that. I explained about her good prognosis

indicators, her age; the fact she was a girl, and she

responded to treatment quickly.

Tahlia listened intently to this and then asked, ‘What

does my doctor say?’

I replied, ‘Your doctor says that if you take this

medication, and finish this treatment, that there is every

chance that leukaemia will never come back.’

Tahlia then asked, ‘Mum, what does, every chance,

mean?’ I sighed—sometimes Tahlia’s questions resonated

with the view of a much older person.

I told her, ‘It means that some children take their

medication but cancer does come back.’ Tahlia cried some

more at the unfairness of the news she had just been told.

There was still something else—she had a scared look

in her eyes. I carefully asked her, ‘What else is it Tahlia?’

‘If it came back, would you be with me?’ Tahlia asked

shakily.

‘Yes, of course darling—every step of the way,’ I

reassured her.

With her voice cracking, Tahlia asked, ‘Would we

have to go back to Brisbane?’

‘Yes,’ I said gently.

‘I don’t want to go back to Brisbane.’ Tahlia sobbed.



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191

In my mind I could understand why she did not

want to go back—who would want to contemplate heavier

chemotherapy; bone marrow transplants, and hair loss, all

over again? But my intuition told me this was not the

reason for Tahlia’s statement. I asked her what the worst

thing about going back to the hospital in Brisbane was.

Tahlia’s response was extraordinary, and further broke my

already tattered heart. Tahlia explained she did not want

to go back to the hospital because Lauren would be left

behind, and Lauren had already missed a lot of months in

our lives. These children’s selflessness is amazing—their

ability to, more often than not, put the other people in

their lives before themselves always astounds me.

Tahlia’s shock passed and now came her grief. I

reassured her Lauren probably did not remember when

we were in hospital because she was too little. I reinforced

to Tahlia we did not have to worry about that now, as it

was unlikely leukaemia would come back. I then bathed

Tahlia and she quietly cried throughout it. A while later, I

could see Tahlia had come to a sort of acceptance of her

situation—she was reserved. Tahlia said quietly, ‘Mum, I

am special aren’t I? Because I have this cancer thing, and I

go through lots—don’t I?’ I agreed that she was very

special: not just because she had cancer, but for the way

she deals with her treatment and everything that goes

with having leukaemia. Again, I reinforced the likelihood

she would make it through this ordeal and that it was not

her fault. I continued to instil, the belief in her, that she

would beat this disease and come off treatment to live a

cancer free life.

In the final eight week countdown towards the end of

treatment, Tahlia became anxious. She wanted to have

numerous discussions about what would happen if her

cancer returned. Tahlia would ask in-depth questions

about what would happen next. One day, on the way to



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192

school, Tahlia wanted to know how Gabe died, where

Josephine was, what happened to his body and why

treatment did not work. After I answered all her questions,

I asked her why she wanted to know. Tahlia replied,

‘Well—that’s what happens when people stop chemo.’

Since Gabe’s cancer had come back, Tahlia wanted to

know what would happen to her if leukaemia came back

and she died. I quickly sorted that misconception out. I

helped her understand that most children with leukaemia

are successfully treated; therefore, they need to come off

treatment, not remain on it. These were heart wrenching

conversations to have while sitting in traffic on the way to

school and work.

Recently, I walked past the bathroom and saw Tahlia

muttering to herself. I asked her what she was saying.

Rather than answering me, Tahlia increased the volume of

her speech, and I heard her say: ‘My leukaemia won’t

come back; my leukaemia won’t come back; my leukaemia

won’t come back.’ I sat on the bathroom floor with her and

we talked about how afraid she was of her cancer

returning. I always made sure every one of these conversa-

tions ended with Tahlia understanding just how unlikely

it was that leukaemia would come back. We would dream

about all the great things she would be doing in twelve

months, two years and five years time. I let Tahlia cry and

release the tension she carried with her every day. Tahlia

readily understood the reality of her illness.

The people in our lives would say, ‘Only three

months to go and things can get back to normal.’ The

weird thing is I’m not really sure what ‘normal’ is

anymore. One never returns to the pre-leukaemia days—

that life does not exist anymore and we are different

people. A new phase was about to begin—one not

dominated by cancer units, pathology and medication. As

horrid as it is giving chemotherapy to your child, I had



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193

grown comfortable with it. It was my safety net—it is what

kept Tahlia’s cancer at bay. In many ways, coming off

treatment was going to be as tumultuous a time as

diagnosis was, only, a little worse, as the sweet naivety of

not knowing the pitfalls was gone, and I faced each day

with a solid reality of the devastation relapse could cause.

However, I know that to worry about the future is wasted

energy. Coming off chemotherapy is another adjustment

that takes time. This new, bitter-sweet situation reminds

me there are some things I just cannot change—preventing

a relapse of leukaemia in my child is one of them.

Accepting this is not only about deciding to do so—it is a

stage; a process.

Towards the end of treatment, I began to dislike

going back to Banksia Ward. Each visit meant that there

was the chance of meeting relapsed children. The last time

we visited Banksia Ward for chemotherapy, I walked

through the doors, and my gaze fell on a little cherubic

face that I had last seen almost eighteen months earlier. I

recall the day this gorgeous little one, Sophie, bounded

into Banksia Ward with a head full of blonde curls. Sophie

had a tumour on her temple and had received cranial

radiation and chemotherapy, just before Tahlia started her

maintenance cycle of chemotherapy. Everything had gone

well for this family—their daughter’s tumour had reduced

and they were also preparing to go home. On seeing

Sophie back in the hospital, my eyes welled up with tears.

The fact she was bald, was enough for me to realise that

Sophie had relapsed. My watery gaze met her mother’s—

who was seated at the far end of the waiting room. I shook

my head, mouthing, ‘No,’ to her. With tears in her eyes

too, she merely nodded in response. This disease was just

not fair. All I could do was to give that mother and hug,

and wish her all the hope in the world.



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194

Our last visit to Banksia Ward, for spinal chemother-

apy, was not as we expected. We left at 6am, without

seeing Lauren, as she was still asleep. Tahlia had been

coughing quite badly for weeks and we were trying to

manage it locally, assuming it was asthma. However,

when Tahlia’s oncologist listened to her chest, the

oncologist would not allow Tahlia to go under anaesthetic,

and stopped Tahlia’s spinal chemotherapy treatment that

day. We waited all day to see a respiratory specialist—

who felt that Tahlia had bronchitis, and prescribed an

adult dose of antibiotics. It was not until 8pm when we got

home that night. My father had cared for Lauren all day,

and he and Mum had just put her to bed. Tahlia was

sound asleep in the car. I woke her to try and get her to

take the chemotherapy and steroid medication. As it was

difficult to do so, I did not bother giving Tahlia her usual

sedative, which prevented her bone pain.

When Tahlia awoke in the morning she was crying

about the pain in her shins. I had never given her a

sedative in the day, but did so this morning, as the pain

did not subside. Tahlia wanted to go to school, and, as

much as I tried to talk her out of it, Tahlia was adamant

about going. On the way to school Tahlia kept nodding off

to sleep in the car. I asked her if she often got pain in her

legs at school, as she rarely spoke about it. Tahlia said

sleepily, ‘Yes Mum.’

Again, I offered for her to come to my office instead

of going to school that day. Tahlia said patiently, ‘Mum, if

I go to school there are heaps of activities, and kids to talk

to, and I don’t worry about my pain as much.’ It suddenly

hit me—Tahlia had worked out a way to manage her pain:

she knew that if she stayed home, and lay on the couch, it

would just be her and her pain, but, if she went to school,

there would be heaps of distractions. Tahlia amazes me—I

am in awe of her ability to cope.



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195

In August, just a week before Tahlia was due to

complete chemotherapy, we went on Tahlia’s ‘Make a

Wish Foundation’ holiday to see the snow. Tahlia was so

excited and her anticipation was infectious. We arrived at

the snow and had several, beautiful, sun-filled days,

where we tobogganed, made snowmen and had ski

lessons. On day four of our holiday, things took a turn for

the worse. Tahlia was in ski school and did not feel well.

The ski school called my mobile, and advised me that

Tahlia had a fever. Randall and I ran through the snow—

with our skis, poles and boots—worrying about being so

far from a children’s hospital. Tahlia’s cough had

worsened in the cold. She had already had two courses of

antibiotics but nothing seemed to be working. Taking her

to the medical station was quite unhelpful as no one on the

mountain was trained to medically help a child on

chemotherapy.

I called The Royal Children’s Hospital, in Brisbane,

all the while worrying about the ensuing twenty-four

hours on the mountain without transport, and being a

long way from any children’s hospital, in the event she

spiked another fever. The hospital was equally concerned.

We were unable to get transport off the mountain until the

following morning, where we flew from Canberra to

Sydney and drove straight to the Sydney Children’s

Hospital.

After several hours of poking and prodding,

cannulas and blood tests, it was determined that Tahlia

had a middle ear infection and potentially atypical

pneumonia. We left, exhausted, with another script for

antibiotics. There was one simple statement from Tahlia

that night that made all the effort worthwhile. Whilst lying

in emergency, Tahlia looked over at me with a smile on

her face and said, ‘Mum, do you know for the whole time I

was at the snow, I did not remember for once that I had



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196

leukaemia.’ My gratitude to ‘The Make a Wish Founda-

tion’ is immense—the ability to allow a child some

freedom from their illness is pure gold.

The 17th day of August arrived. Tahlia crossed the

last box off her countdown calendar, and we celebrated

with a big barbecue with family and friends. We had

reached a milestone that, two years ago, Randall and I

were unsure we would reach. However, at the end of this

marvellous day, I was unable to bring myself to remove

Tahlia’s medicine tower on our kitchen bench. It contained

all her syringes, spare tablets, thermometer, Port-A-Cath

access supplies, and gloves. It was our daily reminder of

leukaemia, so one would think that now treatment had

ended, it would be easy to remove. Not so—somehow it

represented my crutch, the thing I clung to every day.

Perhaps in the weeks to come I would dispose of all the

out-of-date tablets, and return the unopened syringes to

the hospital, and there would be some closure.

After every all-clear check up we are euphoric. Tahlia

will return to the Royal Children’s Hospital for regular

reviews, until she becomes too old to attend. This is so her

oncologist can check for any long-term side effects—from

the chemotherapy— and check Tahlia’s development is

progressing normally. I was relieved that we were offered

such wonderful after-treatment care, but I also grappled

with the idea of returning to cancer wards over the long-

term. Entering outpatient clinics was draining, as you tend

to relive your own time with a seriously ill child.

After chemotherapy ended, Randall and I created

some markers. A higher temperature was okay, as long as

it lowered within twenty-four to forty-eight hours. If the

high temperature came with a visible symptom, that was

even better. However, a cause for review would be any

pain, headache, back or leg aches, or fever that did not

improve with the usual pain relief. We knew Tahlia inside



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197

and out now. We had spent so long watching her cope

with various infections, that although we needed some

level of vigilance in the future, the level could be far more

relaxed.

The day Tahlia was diagnosed with leukaemia—9th

June 2006, will be etched in my memory for a long time to

come. Late May and early June hold events that elicit vivid

recollections. Andy and Aaron—the sons of two of our

closest friends—were born just weeks before Tahlia’s

diagnosis. The day of Tahlia’s diagnosis is also one of her

closest friend’s birthdays—so each year that Rosie turns

another year older, is a marker for Tahlia’s survival. It is

also a marker of our family’s strength and marvellous

bond.

Don’t get me wrong—my children still drive me to

distraction, but I am easily reminded about what precious

gifts they are in my life. Sometimes, when the girls are

driving me crazy, I inhale slowly, and am thankful for the

joy they bring into our lives. I often stare at my girls,

taking in every detail of their beautiful faces—the contours

of their features, and I etch it into my memory. I am

thankful I can hug them every day. My love for them is

immense—so strong I wonder sometimes if my heart

might burst. I am thankful for our experience with Tahlia,

for I now understand the frailty of life. Our life is filled

with a richness that we would never have known without

Tahlia’s journey with leukaemia. I want no regrets—

instead I want to preserve, as many happy moments with

my family, into my memory. We all make mistakes and

have disagreements, but now I more quickly realise those

little things, in the grand scheme, are not that important. It

is the lessons we learn from those moments. The hurdles

are what make us stronger. This is how we grow—

everything is an experience, and none of these experiences

should be wasted.



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198

After all the tears are cried, the treatment and the

trauma is over, you finally come to terms with your child’s

illness. Then you revel in the restoration of her wellbeing.

Cancer allowed me to know our daughter far better—what

a gift that is. Tahlia and I have a bond that is steadfast, and

the journey with her cancer has allowed that. There was a

great deal of healing done between us—I always felt I had

not bonded with Tahlia when she was born, due to my

inexperience as a parent, and all of her allergies and their

physical manifestations. Now, my daughter and I are very

much in sync. I also learnt a lot about myself. I found inner

strength I did not know existed. I have acquired a deeper

understanding of the human experience, one I would

otherwise not have known. Life is truly short—it is all

about living well.

Your child’s survival fosters a strong appreciation

within you—an appreciation of the strength of your

child’s spirit, and thankfulness that your child is one of the

blessed ones. I acknowledge I can write all this because my

daughter survived. The parents who live with the loss of

their child, and the carers of children with long-term

chronic illness, like cystic fibrosis and cerebral palsy, are

my heroes. I also have a deep gratitude for the devoted

oncologists, doctors, nurses, friends and family. Family is

everything— this is something I failed to understand as a

new mum, but understand very clearly now. I now also

understand that hope is more important in life’s journey

than the destination you are striving to reach, and, above

all, the love for our girls is the force that enables us to

jump every hurdle.

Very early on, we felt that we wanted to give back to

the communities and charities that helped us. We became

involved with fundraising for Camp Quality’s, Escapade,

which Randall entered, and the Leukaemia Founda-

tion’s—Shave for a Cure, and Cancer Council’s—Relay for



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199

Life. We wanted to give back something to families

experiencing cancer.

We have decided that the 6th of June, being the

anniversary of Tahlia’s diagnosis, will be called her, ‘All

Clear Day’. Every year, we will spend that day celebrating

her survival and vitality. For two years, cancer cast its

shadow over our family, however, I can feel its hold

weakening, as each month passes, and each blood test

comes back clear.

My six-year-old still loves dressing up as a fairy

princess, but she knows what a gift it is to feel the glitter

on her skin, and see the satin in her skirt spin around, as

she twirls, giggling in delight. Cancer is just one thread in

the weave of Tahlia’s existence.



200

Epilogue

Six Months Post-

Chemotherapy

Tahlia is in first grade and is delightfully well. Her bounce

is back; she can run and swim and play, all with the

burden of chemotherapy lifted. She has some recurring

back pain and headaches but these seem transient enough

for her specialists not to worry.

Shortly, Tahlia will need to have all her vaccinations

again, as the chemotherapy wiped out all her resistance.

The purple chemotherapy container was eventually

removed from my kitchen bench. In the first few months

after chemotherapy ended, there were days I almost drove

myself crazy with every bruise, cough and headache,

Tahlia complained of. Especially, just before Christmas,

when Tahlia developed a fever of forty degrees Celsius,

splitting headaches and was unable to move off the lounge

for three days. We rushed her to emergency, the staff

seemed unaware of our greatest fear—relapse. Blood tests,

chest X-rays and urine samples were ordered. It felt as if

we had just travelled back two years. Tahlia’s blood test

results came back showing elevated white blood cells,

which were related to an infection but not much else.

Tahlia was admitted for three days with pneumonia and

septicaemia. A pneumonia bug had escaped from Tahlia’s

lung into her bloodstream, and was making her very ill.

She recovered slowly from this illness, and by Christmas,

Tahlia was healthy and happy once more. With every

passing month our confidence grows that we may never

see a relapse. I will always catch my breath when there is



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201

an unknown illness or excessive tiredness, and I accept

this fear will probably always be there.

30th January - Tahlia’s oncologist busied herself

with making the arrangements for surgery.

Tahlia and Lauren played doctors and patients

on the examination table. Tahlia had her on-

cologist’s stethoscope and was intently listening

to Lauren’s skull: ‘Mmm—you have thunder in

your head,’ Tahlia mutters seriously to the ap-

parently gravely ill patient, Lauren. I am asked

to sign a hospital admission form that outlines

the various risks of port removal surgery. I am

used to this now as I have been required to sign

one every twelve weeks for lumbar punctures,

but I baulk at the complications listed. ‘What

are all these?’ I ask our oncologist—thinking

surely this surgery to remove her Port-A-Cath is

routine. ‘Yes—there is something I should ex-

plain to you,’ she says softly, as her voice takes

a more serious tone. In the past month or so,

there had been two children whose Port-A-

Cath’s had become embedded. This means the

surgeons had been unable to remove them. I

suck my breath in and sneak a quick look at

Tahlia hoping that she did not hear this. Tahlia

is motionless but still pretending to play, whilst

listening to every word. I am shocked at this

news, and am unable to ask any questions

about what will happen in the long term if her

port is not able to be removed. What about in-

fection, I wonder? I sign the form reluctantly,

knowing again, I still have no option but to in-

dicate my understanding of the potential for

complications.



Six Months Post-Chemotherapy

202

In four days time, Tahlia was due to have her Port-A-

Cath removed, and we still had not discussed the

complications mentioned, three weeks ago, by her

oncologist. For a week now, Tahlia had almost been

baiting me with statements like: ‘I am so excited my port is

definitely coming out this week.’

I eventually succumbed to this and asked Tahlia,

‘Would you like to talk about the surgery and its compli-

cations?’

Tahlia thought about this and said, ‘Yes—I want to

know what my oncologist said could go wrong.’

I explained what I knew, reinforcing the point that it

was very likely her Port-A-Cath would be removed

beautifully, with no complications at all. Tahlia burst into

tears and refused to finish her dinner. The possibility that

her Port-A-Cath might, by some slim chance, have to

remain, was intolerable to her. We talked it through and I

explained that we had always told her the truth, but we

also wanted her to remember the likelihood was that

nothing would go wrong.

At this point little Lauren burst into tears claiming,

‘But, I still don’t even have a port, so how will I grow up to

be a big girl.’ Randall and I stared at one another, across

the table, and then looked at our rapidly disintegrating

daughters. This news from Lauren stunned me—she was

almost four, and, in that moment, I realised that Lauren

has seen Tahlia, treatment and hospitals, as the norm.

Lauren was waiting for her Port-A-Cath and her trips to

the hospital, just like her big sister. Despite Randall and

me forever explaining that Tahlia was sick, this clearly had

little impact on Lauren. In her mind, a Port-A-Cath was

what was missing for her to be a big girl like her sister. Six

months after treatment had finished, our family was still

having conversations about cancer—its impact remained

great.



Eight Seasons

203

The Port-A-Cath removal surgery went beautifully,

and our fairy princess is about the happiest fairy of them

all. When Tahlia was wheeled into the ward from

recovery, she was still groggy from the anaesthetic. Tahlia

struggled to sit up and tell me, ‘Mum, the nurses were

trying to talk to me, but I could not move my lips and my

eye lids kept closing, but I was able to move my hand to

my side and feel my port, and Mum—it is gone.’ Tahlia

went on to mumble something about how happy this

made her and she fell back to sleep, with a smile on her

face. This reinforced to me just how worried she had been

about her Port-A-Cath removal.

This was such a milestone for our family—nearly

three years ago, when all this began, with fear and

uncertainty, Randall and I had taken a very ill Tahlia to

my brother, Dave’s, unit after her eye surgery. Now, as we

sit in that same unit in February 2009, this time we

celebrate that surgery to remove Tahlia’s Port-A-Cath, as it

signifies the ending of one immense journey.

That day, Tahlia’s oncologist was very happy with

Tahlia’s good health. I watched her hug Tahlia and caught

the emotion on her face. Her face showed a myriad of

emotions, elation and pure pleasure at seeing almost three

years of successful treatment come to an end, but, there

was something else, something I could not quite put my

finger on at the time. I tried to imagine what it would have

been like for this oncologist to have been such an integral

part of this journey, with our family, and to know that

because of her passion to heal these children, she has

helped Tahlia have a second chance at life. I think it was a

humbleness that I saw on her face. I realised she took no

credit for her immense role in this journey, rather just pure

delight in Tahlia’s health.

I have thought deeply about how I feel now that we

have jumped almost every hurdle. I can relax a great deal,



Six Months Post-Chemotherapy

204

but I realise I was unable to fully surrender to the

excitement of the Port-A-Cath removal—there is a part of

me that still holds back. It is my protection strategy: I

cannot, as yet, allow myself to totally let my guard down.

A small part of me will always be prepared for any future

hurdles. However, life is good—I will continue to rejoice

in our good fortune and make every day count, always

remembering we have a cancer free daughter.



eight seasons: our family's journey with childhood leukaemia

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