eight seasons: our family's journey with childhood leukaemia
DESCRIPTION
Tahlia is four when she is diagnosed with acute lymphoblastic leukaemia, a rapidly progressing form of childhood cancer. Her life is irrevocably changed, and her family are confronted with the many difficult challenges associated with childhood leukaemia. This is a powerful and honest story, told through the eyes of a mother, about a little girl's strength and courage. This journey not only leaves the family with a new perspective of what life is about, but is an inspiration to all who come across it.TRANSCRIPT
EIGHT SEASONS
OUR FAMILY’S JOURNEY WITH
CHILDHOOD LEUKAEMIA
SANDRA EVANS
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Copyright © Sandra Evans 2009
All rights reserved. No part of this publication may be reproduced,
stored in a retrieval system or transmitted in any form or by any
means, electronic, mechanical, photocopying, recording or otherwise,
without the prior written permission of the publisher.
The information, views, opinions and visuals expressed in this
publication are solely those of the author(s) and do not reflect those
of the publisher. The publisher disclaims any liabilities or responsi-
bilities whatsoever for any damages, libel or liabilities arising
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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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
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Epilogue Six Months Post-Chemotherapy .................................... 200
Appendix A ........................................................................... 213
Appendix B............................................................................ 203
Appendix C ........................................................................... 213
References .............................................................................. 221
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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.
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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
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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.
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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
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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
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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
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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-
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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
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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:
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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
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Eight Seasons
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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
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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
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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
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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
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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
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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.
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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
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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.
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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
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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.
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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
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Living with Leukaemia
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
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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
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Living with Leukaemia
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
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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
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Living with Leukaemia
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
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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,
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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
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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.
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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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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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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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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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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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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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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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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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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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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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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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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.
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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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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.
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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.
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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,
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Six Months Post-Chemotherapy
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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.
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