Long-term supporter
Denise Crittenden
Denise’s three-year-old daughter Julie
bumped her head while playing under
the bed. When the bump was still
present after six weeks, the family
doctor assumed it was a common
cyst. However, an operation at the
local hospital revealed it was in fact a
leukaemic cluster. Julie was urgently
admitted to Sydney Children’s Hospital,
Randwick, under the care of the late
Professor Darcy O'Gorman Hughes.
The year was 1982 and Julie had
60-70% chance of survival. She
underwent three years of intense
treatment and as central lines didn’t
yet exist, she was punctured in a
different spot on her body for every
blood test and injection.
Work experience
Lucy Buttini
we are making the Zero
Childhood Cancer Program
a reality.
Working closely with Sydney
Children’s Hospital, Randwick, our
scientists will soon be analysing the
cancer cells of children with the
most aggressive cancers, who are at
highest risk of treatment failure.
Byron, age 9
In remission from aggressive leukaemia
Achieving Zero
Childhood Cancer
You might remember reading in the
last issue of LabNotes about Zero
Childhood Cancer, Australia’s first
personalised medicine program for
children with cancer.
We are thrilled to let you
know that with your help,
“The first time you
don’t have any
understanding of
what’s coming. But
the second time
you know what to
expect, and to know
that you have to do
that all over again
is devastating.”
Angela
Byron’s mum
Once a child relapses from cancer,
they have a much lower chance of
survival because the cancer can
become resistant to treatment –
and no-one knows this better than
Byron’s mum Angela.
Byron was diagnosed with
an aggressive type of acute
lymphoblastic leukaemia when he
was 17 months old. He underwent
intensive treatment at the Royal
Children’s Hospital, Brisbane,
spending weeks at a time in
hospital with oral treatment at
home in between.
He pulled through and was declared
in remission shortly before he turned
five – but two years later, Byron’s
leukaemia returned. This time, his
only chance of survival was a bone
marrow transplant.
After three months of very intense
treatment and full body radiation,
Byron’s transplant was a success.
Two years on, the nine-year-old is
thriving – making friends, enjoying
school and loving karate.
Our goal is to make Zero Childhood
Cancer available to every Australian
child with high-risk or relapsed
cancer by 2020, so kids like Byron
can have better survival rates and
fewer side-effects.
With your help, we can
make this goal a reality.
At just 15 years of age, Tilly’s big sister
Lucy has more memories of childhood
cancer than most people have in a
lifetime – such as running into hospital
with her dad on the afternoon of Tilly’s
diagnosis and watching her sister
connected to a machine with a cord
for chemotherapy. Lucy remembers
waving goodbye to her mum from the
other side of the school gate because
children’s cancer
institutego into school for risk of
Tilly couldn’t
infection.
Having seen first-hand the devastating
impact of childhood cancer, Lucy
joined the Institute for a week of work
experience to see what we’re doing to
put a stop to it.
“I had no idea just how
much work goes on
behind the scenes at
the Institute. It was
great to see how much
our story is helping
raise awareness of
childhood cancer.”
Lucy
Tilly’s sister
For work experience and office
volunteer opportunities. email
[email protected].
Consumer
engagement
Josi Demetriou
Involving parents, carers and
close family members who have
experienced childhood cancer
is critical to the success of our
research. Consumer interaction
and engagement with researchers
is very important to enhancing
our research efforts from the
hospital bedside, to our lab bench,
and back to the bedside.
Autumn 2016
Targeting the Achilles
heel of neuroblastoma
Our stories from the bench to bedside
Achieving Zero
Childhood Cancer
Supporters make
our work possible
The Institute was founded by
parents of children with cancer
and consumers have remained
an integral part of our research
enterprise ever since. We believe
our consumers are instrumental
for forward-thinking research
that has maximum impact on
improving health outcomes for
children with cancer.
We take consumer engagement
seriously, and have recently
employed Josi Demetriou to
ensure the voices of consumers
are heard. Josi is a consumer
herself – her daughter, Lulu, lives
with stage 4 neuroblastoma. Josi
is well aware of the importance
of undertaking childhood cancer
research that is directly relevant
to community needs.
Fortunately Julie survived and is now
in her 30s with two young sons of her
own. Denise and her husband John
helped with fundraising in the hospital
grounds when Julie was diagnosed,
and has been generously supporting
the Institute ever since – for nearly
35 years!
“Without research, our
daughter wouldn’t be
here. Without research,
nothing will move
forward and a cure
will not be found.”
Denise
Julie’s mum &
long-term supporter
We invite consumers to become
involved in our research projects
and more broadly in the public life
of the Institute to help us raise
awareness of childhood cancer.
If you have an interest in working
with us to share your views,
direct experiences and insights
please contact Josi Demetriou at
[email protected].
How you’re
helping us
get to Zero
Childhood Cancer
Message from our
Executive Director
Welcome to LabNotes. I'm thrilled
to update you on the progress we’re
making towards finding a cure,
and how our research is making a
difference to children with cancer
every day.
Some of our most exciting findings recently have come
from our research into an experimental drug called
CBL137 – which has the potential to be a very effective
treatment for the most aggressive forms of childhood
cancer, including aggressive neuroblastoma. Best of all, it
appears able to block the growth of cancer cells without
damaging healthy cells. This is wonderful news for children
like Ava, who you’ll read about on page 4.
Our ultimate goal is to bring the number of Australian
children dying every week from cancer from three, to two,
to one… then zero. The key to achieving this is developing
the means for clinicians to tailor treatment to each
individual child’s disease.
This is why we’re very proud to be leading, in conjunction
with Sydney Children's Hospital, Randwick, Australia’s
first personalised medicine program for children with
the most aggressive cancers: Zero Childhood Cancer.
With your help and in collaboration with the Sydney
Children’s Hospitals Network, this program is becoming a
reality. Read more about Zero Childhood Cancer, and the
difference it will make to kids like Byron, on page 5.
Finally, we cannot work alone. Support from our generous
donors and fundraisers is an essential element of our work
and plays a huge role in our successes – and you’ll read
about some of the people who are helping us achieve our
vision on page 6.
We know our community of children, parents, researchers,
clinicians, supporters – and you – share our determination
for success. We won’t stop until the job is
done, and we know you won’t either.
Thank you for supporting our research and
helping us put an end to childhood cancer.
Professor Michelle Haber AM
Executive Director
(L-R) Prof Glenn Marshall, Jayne Murray,
Dr Daniel Carter, Prof Michelle Haber &
Prof Murray Norris in the Institute lab
Why we need your help
Cancer kills more children than any other
disease in Australia. It is second only to
breast cancer in terms of the number of
years of potential life lost.
We have discovered a
new way to target one
of the deadliest forms
of cancer in children.
Childhood cancer also occurs and behaves
differently to adult cancer, which is why
adult cancer treatments often do not
work for children. Big pharmaceutical
companies tend to only focus their
research on the large adult cancer
markets, so research dedicated solely to
childhood cancer is essential.
Neuroblastoma is the most common
‘solid tumour’ of early childhood,
and is generally diagnosed when the
disease is advanced. Around half of
all children with neuroblastoma have
aggressive tumours, and fewer than
half of these patients survive, even
after intensive treatment.
Our role is vital. As the only independent
medical research institute in Australia
wholly dedicated to curing childhood
cancer, it’s up to us to make sure that
our discoveries are progressed into new
treatments for kids as quickly as possible.
But we can’t do it without you.
The cost of the infrastructure, equipment,
operational support and skilled researchers
required to sustain our work is high. Every
dollar we receive from government and
granting bodies must be matched with a
dollar raised by the community.
Thank you for your ongoing support that is
helping us get closer to a cure for every child.
We are curing childhood cancer.
It’s not if. It’s when.
Cover Photograph:
Tilly was diagnosed with acute lymphoblastic
leukaemia when she was nine months old. She had
always dreamed of visiting Paris, so to celebrate
her five-year all-clear milestone her parents
surprised her with a trip to the city of light and
love. She climbed the Eiffel Tower with her family
on her eighth birthday! You can read more about
Tilly on page 6.
Halting
tumour
growth
Targeting one of
the deadliest
childhood cancers
Fortunately, a team of our scientists
has identified an experimental drug
called CBL137, which when used in
conjunction with chemotherapy has the
potential to stop neuroblastoma tumour
growth in its tracks.
“Our laboratory tests
tell us that CBL137
is likely to be very
effective against
the most aggressive
neuroblastomas,
and indeed the most
aggressive forms
of other childhood
cancers, and that is
very exciting news.”
Professor Michelle Haber AM
Executive Director & Program
Head, Experimental Therapeutics
The impact this new drug could have
on patients with neuroblastoma is
wonderful news for children like Ava
and their families.
Ava was diagnosed with stage 4
neuroblastoma and secondary cancer
in her bone marrow when she was
just 10 weeks old. She underwent
chemotherapy treatment at Princess
Margaret Hospital, Perth, but because
the cancer she had was so aggressive,
the journey has taken years of hospital
visits, scans and tests.
Ava, age 7
In remission from
neuroblastoma
It's fantastic that Ava has survived, but
the long-term impact of her treatment
is not yet fully known. She struggles at
school, gets confused easily and has
very little short-term memory.
This is why we need better
treatments – so kids like
Ava can not only survive,
but also thrive.
Ava is growing into a beautiful young
girl. When she started chemotherapy
she had to stop swimming – one of her
favourite pastimes – but now she is
back in the pool, dancing to Taylor Swift,
and wants to be a doctor or nurse when
she grows up.
“Knowing what Ava
went through, I’m
so grateful that
the researchers at
Children’s Cancer
Institute are committed
to searching for
safer, more effective
treatments for children.”
Felicity
Ava’s mum
Thanks to supporters like you, our
research will make a difference for
kids like Ava.
Read Ava’s story on our website:
ccia.org.au/AvasStory