We Just Want Our Daughter to Live - Fanconi Anemia Research Fund

166 Pages·2002·6.79 MB·English

We Just Want Our Daughter to Live!

Kelly Turner has the fatal condition Fanconi’s anaemia. Her only hope of
surviving is to have a bone marrow transplant. However, Jan and Richard Turner
soon discover that the FA transplants with the highest success rate are only
carried out in Paris, and that the New Zealand Government has limited funds for
overseas operations. So the Turner family takes to the streets and the airwaves,
with a band of helpers, and attempts to raise the $360,000 needed to get Kelly
her operation.

Little do they realize that the roller coaster ride to Kelly’s happiness and health
has only just begun.

Jan Turner, Kelly’s mother, tells their story to professional writer Grant Shanks,
author of A Long Goodnight.
We Just Want Our Daughter to Live!

JAN TURNER
with
GRANT SHANKS
Contents

FROM THE AUTHORS
PROLOGUE
1 Something is wrong with bubs
2 Our baby
3 Kelly comes home
4 The first step
5 My baby is dying and I don’t know what to do
6 The first five years
7 My intuition becomes reality
8 The good news, the bad, and the maybe
9 A time of searching
10 The fundraising nightmare begins
11 Life in the fish bowl
12 Breakdown in communications
13 Why? That accursed word again!
14 Waiting . . . always waiting
15 Total chaos
16 From fight to flight
17 Even the air feels foreign
18 The countdown begins
19 God, I wish I could speak French!
20 Needles, needles and more needles
21 The chemical countdown begins
22 Life . . . the ultimate gift from an unknown man
23 Watching, waiting, waiting, watching . . .
24 How nasty can it get?
25 Happy birthday, Kelly
26 A month of lows and highs
27 Out of hospital at last
28 It drags on and on
29 Is an end in sight?
30 Our long-awaited family reunion
31 What else can go wrong?
32 Almost alone in Paris
33 Time to go home
34 Welcome home, Kelly!
35 A normal life for Kelly at last
APPENDIX
GLOSSARY
From the Authors

Jan Turner

I WANT TO thank all those people who so generously gave their time and their
money to help save Kelly’s life. In particular, for the wonderful work of Professor
Gluckman and the doctors and nurses both here and in France – thank you! To
our family and friends, thank you for your unflagging support; to our local chapter
of the Lions, thank you for your incredible fundraising efforts on Kelly’s behalf.
To Grant, thank you for sharing in the struggle to tell our story. The
compassion you feel towards the trials of others is an extremely valuable gift, and
I am grateful that fate drew us together.
Because this story is told from my perspective, with the focus firmly fixed on
Kelly, I don’t always acknowledge the tremendous part that my husband Richard
played throughout those hectic years. Richard was always there for me and for
us, a tower of strength working away behind the scenes to keep everything
together. Bless you, Richard.
You, the reader, will notice that Daniel doesn’t have a voice in the earlier
part of the book. To Daniel, through his early years, so much of what was
happened to Kelly was ‘normal’; it was only when he was approaching his teens
that he began to realize otherwise. He was a wonderful big brother for Kelly to
have through her many trials and tribulations, and today the pair of them are still
the best of friends – fighting, laughing, playing, and getting into mischief like any
other kids anywhere. I wouldn’t have it any other way.
I dedicate this book to every parent who has been through what we went
through, and trust that it will provide a ray of hope to those who have a child
suffering from a life-threatening disease. There is light at the end of the tunnel.

Jan Turner
Taupo, January 1996
Grant Shanks

About the co-author: Grant Shanks is a full-time professional writer living and
working in Christchurch. He is the co-author of A Long Goodnight, the tragic
story of friends Warren Ruscoe and Greg Nesbit.

Shortly after the publication of A Long Goodnight in 1994 I received a phone call
from Jan Turner. She had read Goodnight, and told me that she had written a
manuscript on the ordeal that here family had gone through in their fight to save
the life of their daughter, Kelly. Several publishers had rejected the story. She
was calling to ask if I would be prepared to read the manuscript and offer her
some advice. I agreed to do this, but made no further commitment: after the
trauma of Warren’s tragic death in a motorbike accident six weeks before the
publication of his story, I had decided not to become involved in another
emotional project for some time. However, I was deeply moved by Kelly’s story,
and suddenly found myself calling Jan to say that I would help her tell the story of
the struggle for Kelly’s life. It is a tale of courage and of hope, and truly deserves
to be told.
My special thanks go to my wife Carol for her love, support and endless
patience, and to Lynne for her input as a mother, writer and friend.

Grant Shanks
Christchurch January 1996
Prologue

IT WAS SUCH a long way to the stage. I felt all eyes boring into us. Once we
got up there, Richard grabbed Kelly and took two steps back. I was left standing
alone at the microphone, knowing I had to speak to these people. I had never
felt so alone in my life; I was panicking, my heart racing. The whole room felt like
it was all spinning. What had started as one of my bad days was getting worse. I
was angry at myself – angry at how it was all going. Normally I could handle
speeches, but now I just stood there, frozen, looking at all the faces. We were so
grateful for the fundraising efforts, but we were lost in it all. How many of those
sitting out there considered us bludgers? Why were we having so many
problems making people really understand?
God! It was all getting to be too much. I could feel my eyes getting wet. I
had to find the words I needed, but they wouldn’t come.
It seemed like such a long time before I somehow managed to muster up a
trembling voice. ‘We’re just an average family, and . . .’ I stopped. What came
next? My mind went blank again. Then my mouth moved of its own accord. ‘It’s
very verve-wracking, you know,’ I blurted out (and the moment I said it I thought
that it was a stupid thing to say). Then I heard myself add, ‘We just want out
daughter to live!’
It sounded so pitiful, and so true. All we wanted was for Kelly to live.
‘Thank you for your help,’ I managed, then just turned back to Richard and Kelly.
I felt so weak. It was as if I’d been drained of the last of my strength, my eyes
were full of tears. I wanted to say more – I had intended to – but emotion was
overwhelming me. I knew I was right at the end of my tether. Money, damned
money. We needed $360,000 to save Kelly’s life, and some people thought we
were just going on a grand holiday.
The only sound was that of our footsteps as we left the stage and the hall. It
had never been this bad.
When we got home, I just went into the bedroom and cried.
CHAPTER 1

Something is wrong with Bubs

IT IS ESTIMATED that 50,000-100,000 genes make up the 46 chromosomes that each
of us has in our bodies. Included are between five and eight non-working genes, one or
more of which are potentially lethal. Fortunately, because genes are paired, if one
does not function correctly the other compensates. This effectively means that a
person with the defective gene is not harmed by whatever condition the rogue gene
represents, but becomes a carrier. When a man and a woman with the same non-
working genes produce a child, there is a one-in-four chance that the child will be born
with both non-working genes. When this happens, a disease state results.

'To give birth to a baby with deformities was a great shock to us. Then, to learn
later that your child has a genetic, life-threatening condition that you unknowingly passed
on, is totally devastating. We lived this nightmare.'

Jan: In January 1983, we had been living for only a few weeks on a government farm at
Ohope, a sleepy little seaside resort near Whakatane. We were a normal, happy family.
Richard and I had two-year-old Daniel, a healthy, robust son, and I was six months pregnant.
Everything was near-perfect for us. My pregnancy was going well, and Ohope was beautiful.
We all loved living by the sea. Our home was situated on a hill overlooking the estuary,
an idyllic setting, perfect. The house was an old state house, but had been newly
wallpapered and painted. It wasn't a mansion, but it was pleasant, all we needed, and the
views were superb.
Life couldn't have been better for us. My childhood dream of a wonderful husband and
a happy, beautiful family was a reality, something I didn't take for granted for one moment.
Sometimes I would find myself standing at the lounge window or out on the deck looking
down over the paddocks, watching the horses frolicking, with the estuary and the sea
beyond, and I would hug myself with sheer joy. I was so lucky. I had no idea that fate was
about to shatter my dreams and almost destroy us.
Shortly after arriving in Ohope, I went to see Russell Meads, the local doctor, in order
to continue with my antenatal checks. I liked Russell immediately. His manner was very
welcoming; I had never felt so comfortable with a doctor before. I explained to him that I felt
much bigger than I had been at the same stage with Daniel. Russell recommended that I
have an ultrasound scan to see how far along I was. I happily agreed, I was worried that I had
the dates wrong. Daniel had been born a month early, but because he had been a good weight
at birth, no one knew if he had been premature or not. I didn't want to be in that position
again: it had been quite scary going into labour much earlier than expected.
Something else had been nagging me about this pregnancy. It was a little niggle,
playing away in the back of my mind at times. This pregnancy felt a lot different from that
with Daniel. I suffered a fluid build-up in my feet and ankles, and I tired easily. Still, I
wasn't worried - yet.
Because Whakatane Hospital didn't have an ultrasound unit, an appointment was
made at Rotorua, an hour's drive away. I was quite excited because I knew we could now
work out a date for the birth. That excitement was followed by a little disappointment when
Richard wasn't allowed to be present at the scan, as this was against hospital policy. So he
waited outside.
I thought at the time that it was odd when the technician left the room without saying a
word to me, only to return a few minutes later to finish the scan. It was then that I felt the niggle
inside me become something else. What had he seen - what wasn't he telling me?

(cid:153) What the operator had detected was that Jan's baby had no amniotic fluid
flowing through its system. Ultrasound works on fluids, and it appeared that the baby
had a throat condition which was preventing the amniotic fluid from reaching the
stomach. It was to be twelve days before Jan and Richard would be told of their
unborn child's condition, and the implications it carried for them all.

After the scan, we were told that the results would be available through our doctor in a
week's time. Richard was still annoyed that he hadn't been allowed in to see the scan. We
both wondered why fathers were encouraged to be at the birth, but not at scanning - it
seemed a strange policy to us. Later, on the way home, I told him how the technician had
suddenly left the room without a word to me. We both thought it odd, but there didn't
seem to be anything to worry about. I succeeded in pushing my doubts to the back of my
mind. If something had been wrong, surely they would have told me there and then, or set
up more tests. After all, they were the experts.
I resigned myself to a week of waiting, but I found that time hung heavily on my
hands. We hadn't been in Ohope long enough to make friends, and for the very first time
I felt lonely in the house with just Daniel for company. Richard was busy, and rarely
around during the day. As head shepherd, his daylight hours were spent out on the farm.
I went through a frustrating count-down several times a day. After a week, I rang Dr
Meads's surgery and asked the receptionist if the results were back. She checked with
Russell, and told me that they hadn't come yet and to call the following day. But it
wasn't to be: I rang on three consecutive days, and each time the reply was the same. By
day four, I was getting agitated. Alarm bells inside had started to ring, and the nagging
feeling had teeth. This time I couldn't dismiss the feeling that something could be wrong,
and it began to gnaw away at me.
On the fifth day, the receptionist said she was sure that the results had arrived.
She asked me to wait until she got the doctor to speak to me about them. When she
returned, she said that Dr Meads couldn't talk to me at the moment and that he would
call me back. I felt deflated, still not openly worried, but more apprehensive. I knew
Russell was a busy man. I thought that if anything serious had shown in the results, he
would have been in touch immediately. I spent the rest of the afternoon wondering when
he would ring and tell me everything was fine. But he didn't call.
At about five o'clock I heard a car coming up our driveway. I was shocked to see
it was Russell, and right at that moment I knew something was wrong. 'Doctors don't
visit people on farms unless it's really important. Something is wrong. There must have
been something wrong on the scan,' I was saying in my mind as I watched him get out of his
car. Suddenly, I was in a panic. I prayed to God to give me the strength to calm down.
I eventually consoled myself with the thought that he might just be one of those
doctors who likes to deliver results in person. He was such a friendly man. I convinced