July 2016 - Child Cancer Foundation

sharing
JULY 2016
Nikita
Brave
Ballerina
Girl
inside:
WIG
Wednesday
MAREKO
Loves to Sing
TAWHITI-ROA
Karate Kid
Daily Contacts
NATIONAL SUPPORT OFFICE
PO Box 152, Shortland St,
Auckland 1140
76 Grafton Road, Grafton,
Auckland 1010
PHN (09) 366 1270
FAX (09) 377 9395
WEB www.childcancer.org.nz
0800 4 CHILD (0800 4 24453)
Child Cancer Foundation throughout New Zealand:
NORTHERN REGION
CENTRAL REGION
AUCKLAND FAMILY PLACE
WELLINGTON FAMILY PLACE
PO Box 152, Shortland Street
Auckland 1140
76 Grafton Road, Grafton
Auckland 1010
PHN (09) 366 1270
FAX (09) 377 9395
EML akl.familyplace@child
cancer.org.nz
PO Box 7062
Newtown, Wellington 6242
27 Riddiford Street, Newtown
Wellington 6021
PHN (04) 389 2620
FAX (04) 389 2690
EML wgtn.familyplace@child
cancer.org.nz
NORTHLAND
WELLINGTON & DISTRICTS
Chairperson: Louise O’Hagan
PHN 021 044 4613
EML northlandbranchchair@
childcancer.org.nz
Chairperson: Te Arikirangi Mamaku
PHN 027 250 4140
EML wellingtonbranchchair@
childcancer.org.nz
AUCKLAND
MANAWATU & DISTRICTS
Chairperson: Jackie Walsh
PHN 021 279 2185
EML aucklandbranchchair@
childcancer.org.nz
Chairperson: Kath Fothergill
PHN 027 404 687
EML manawatubranchchair@
childcancer.org.nz
WEST COAST - SUPPORT GROUP
WAIKATO
HAWKES' BAY
Chairperson: Vincent Tuioti
PHN 022 128 8403
EML waikatobranchchair@
childcancer.org.nz
Chairperson: Jenni Jamieson
PHN 027 616 7008
EML hawkesbaybranchchair@
childcancer.org.nz
OTAGO/SOUTHLAND REGION
TAURANGA
NELSON
Chairperson: Kim Bartley
PHN 021 455 724
EML taurangabranchchair@
childcancer.org.nz
TAIRAWHITI
Chairperson: Louise Savage
PHN 027 260 2750
EML tairawhitibranchchair@
childcancer.org.nz
EASTERN BAY OF PLENTY
Chairperson: Yvonne Osborne
PHN 027 211 9129
EML ebopbranchchair@
childcancer.org.nz
LAKES
Chairperson: Win Macmillan
PHN 027 476 3010
EML lakesbranchchair@child
cancer.org.nz
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Sharing • CHILD CANCER FOUNDATION
Chairperson: Jill Koefoed
PHN 021 145 7837
EML nelsonbranchchair@child
cancer.org.nz
MARLBOROUGH
Chairperson: Susan Rose
PHN 021 476 002
EML marlboroughbranchchair@
childcancer.org.nz
TARANAKI
Chairperson: Victoria Lewis
PHN 021 156 1653
EML taranakibranchchair@child
cancer.org.nz
CANTERBURY/WEST COAST
REGION
CHRISTCHURCH FAMILY PLACE
PO Box 1846
Christchurch Mail Centre 8140
23 Cambridge Terrace
Christchurch Central 8013
PHN (03) 365 1485
EML chch.familyplace@child
cancer.org.nz
CHRISTCHURCH
Chairperson: Jo Hooper
EML christchurchbranchchair@
childcancer.org.nz
MID CANTERBURY - SUPPORT GROUP
Chairperson: Sue Green
EML midcanterburybranchchair@
childcancer.org.nz
SOUTH CANTERBURY
Chairperson: Jono Martin
PHN 027 810 4562
EML southcanterburybranchchair@
childcancer.org.nz
Chairperson: Margaret Woollett
PHN 021 146 6231
EML woolletts@vodafone.co.nz
DUNEDIN FAMILY PLACE
PO Box 579, Dunedin 9054
28 London Street, Dunedin Central
Dunedin 9016
PHN (03) 471 7258
FAX (03) 471 7259
EML dn.familyplace@child
cancer.org.nz
SOUTHLAND
Chairperson: Heather Guise
PHN 021 259 8752
EML southlandbranchchair@
childcancer.org.nz
NORTH OTAGO
Chairperson: Sharon Greaney
EML otagonorth@childcancer.org.nz
CENTRAL OTAGO - SUPPORT GROUP
Chairperson: Lynda Read
EML otagocentralbranchchair@
childcancer.org.nz
DUNEDIN
Chairperson: Josh Lowry
PHN 027 340 7190
EML dunedinbranchchair@
childcancer.org.nz
Inside:
Mareko loves to Sing
4 Out & About
10 Kiara's Walk
Ballerina Nikita
6 Recognising Volunteers
12
Karate Kid Tawhiti-roa
7 Camping Fun
13
Auckland Marathon
16
Hats off to Maree!
17
Health Professional Update 14 Other News
Appeal Month
Ambassador Call-out
8
Wig Wednesday
9
Jackson's Journey
15 Partner Update
18
19
ON THE COVER: Nikita, one of our 2016 Regional Child Ambassadors
A word from Robyn
CHIEF EXECUTIVE
Welcome to the July issue of Sharing.
Looking through this issue of
Sharing magazine, I am astounded
by the variety of activities and
initiatives we have going on around
the country, and how many people
it takes to make it all happen.
In June we recognised National
Volunteer Week, which was the
perfect opportunity to thank each
and every one of our volunteers,
and recognise some of their
personal achievements.
We also held our first ever Wig
Wednesday on June 22 and it
was embraced by people across
New Zealand and many of you,
exceeding all of our expectations.
Ultimately, it is people and the
connection we create with one
another that make us unique, and
strong as an organisation. I feel
so privileged to share my working
life with staff, volunteers, parents,
community members and children,
who motivate me to go above
and beyond every day, and provide
an unlimited source of inspiration.
I am proud that we are able to
share so many of your stories
through Sharing.
He tangata, he tangata,
he tangata
It is the people, it is the people,
it is the people
I have had the Maori proverb
below on my mind, which I
wanted to share with you all.
Thank you again.
Kind Regards,
He aha te mea nui o te ao
Robyn Kiddle
What is the most important thing
in the world?
CHIEF EXECUTIVE
CHILD CANCER FOUNDATION
CHILD CANCER FOUNDATION • Sharing
3
Mareko
LOVES TO SING
Mareko loves to sing – especially at
the top of his voice in the bathroom
according to his mum. At eight years
old, he is happy, full of smiles and
loves life…but life didn’t start out
as joyful when as a tiny baby Mareko
was diagnosed with neuroblastoma.
When their midwife saw baby Mareko’s extended
abdomen, she immediately raised the alarm. Together
with their baby, parents Tania and Ratu, were rushed to
the nearest hospital.
Tania says the next few days were a whirlwind of
emotions, as her newborn baby was transferred to
Starship. At only a few days old, Mareko endured X-rays
and MRI scans, ultrasounds and tests, then surgery and a
biopsy of a lump on his upper hip.
“His tummy was very firm and looked very dark under
the skin. His liver was enlarged and pushing against
other organs, especially his lungs, making it difficult to
breathe,” Tania recalls.
“He had an oxygen tube for breathing but was mostly
well, breastfeeding and doing normal baby things. We
had to wait for test results to find out what was wrong
with him.”
Waiting in Auckland with their two other children (then
aged four and two), Tania and Ratu received the news
that Mareko had a tumour.
At ten days old Mareko had surgery to insert a Hickman
line and chemotherapy started soon after.
“What a rollercoaster. We received an amazing support
pack from the Child Cancer Foundation, including a
beautiful baby blanket, a huge hamper of food and other
gifts for Mareko. It was overwhelming to become a
member of this group of families so suddenly.”
Tania says at first they resisted belonging to this “group”
because the meaning of it was so scary.
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Sharing • CHILD CANCER FOUNDATION
“We’d ask ourselves, “how can a
newborn get cancer?”. His illness
seemed cruel and unfair. But soon we
accepted the reality – and the support
– it really was amazing to know so
many people cared.”
Neuroblastoma
The chemotherapy and its resulting
fluid retention transformed Mareko
from being a small baby with an
enlarged tummy, to a huge baby with
a huge tummy.
“With more treatment he shrank and
grew, and changed colour (he turned
fluorescent yellow at one stage);
stopped breastfeeding, had a hernia;
it was all on.”
For the next three months the family
was split-up, with Tania mostly staying
in hospital with Mareko and Ratu back
home with the other children.
Just before Mareko was to start his
fifth round of chemotherapy the
doctors gave them some good news
– his liver was almost back to normal
size and the chemo could stop while
they monitored him.
“What a beautiful day! Over
the next few months there
were numerous infections in
his line so lots more hospital
stays, until we were finally
given the great news that the
line could come out, and he
was finished treatment!”
Given the extended periods of
separation, the family took a
while to adjust to its new ‘normal’
circumstances.
“After our experience with Mareko,
we found more to be thankful for.
We thoroughly enjoyed a stay at
the Child Cancer Foundation holiday
home in Taupo and made the most
of other opportunities to just enjoy
being together.”
“Mareko developed from a sickly,
high-needs, easily irritated baby, into
a super-happy, smiley, cuddly, loving
toddler. Life was good! We had
three-monthly oncology check-ups
which turned into six-monthly. It all
got easier.”
Mareko experienced some delays in
reaching milestones, including speech
delay. At four years old he received
hearing aids after tests revealed he
had high-frequency hearing loss.
Doctors’ visits have become less
frequent for the family, but Mareko
continues to have regular checkups for his heart, ultrasounds for his
liver, endoscopy for gastro issues and
ongoing audiology appointments.
At school he is below standard in
most academic areas and has support
from a teacher of the Deaf who
visits for an hour per week. Mareko
was recently fitted with a cochlear
implant and is really enjoying the
wider access to sounds in the world.
Today, Mareko enjoys school, is
happy, still full of smiles and loves
life – especially riding his bike and
scooter. He likes to challenge himself
to get faster at math’s basic facts and
loves music and dancing.
"Neuroblastoma is
a childhood cancer
that arises from the
sympathetic nervous
system, the part of the
nervous system that
drives the “fight or flight”
response.
The sympathetic nerves run down
both sides of the backbones so
the cancer can originate in the
abdomen, chest, or neck, but
the most common locations are
the adrenal glands. Even though
the word “neuro” is in the name
neuroblastoma, this is not a brain
cancer.
The clinical behaviour of
neuroblastoma is extremely
varied. Some types of
neuroblastoma can disappear by
themselves without surgery or
chemotherapy. Most 'non-highrisk' patients require surgery, and
may require two to eight cycles of
medium-strength chemotherapy
but overall 80-97% of children
can be successfully treated.
Neuroblastoma is classified as
'high-risk' when the cancer has
spread throughout the body
in children over the age of 18
months, or when the cancer has
very aggressive genetics. Therapy
for these children is among the
most intensive, gruelling, and
complex for any cancer – child
or adult.
The good news is that 'high-risk'
therapy continues to improve.
Approximately, 65-75% of highrisk patients can be successfully
treated and many new drugs are
in the pipeline to achieve better
survival and quality of life.”
Dr Andrew Wood, Paediatric
Oncologist at Starship.
CHILD CANCER FOUNDATION • Sharing
5
“We were away from family, friends and familiar
places, all of us were very scared of what was
to come,” says mum Rose.
“But rather than focus on the upcoming treatments ahead,
we made the most of the good days and had adventures.”
This positive philosophy has seen the family through many
of the ups and downs of a cancer diagnosis, especially when
Nikita lost her hair because of treatment.
“Losing her hair was very difficult for Nikita,” Rose explains.
“But her Aunty, godmother and I all decided to shave
our heads in support of what she was going through.
By removing the significance of having hair, we were able
to show Nikita that she was not alone in her battle.”
BALLERINA
Nikita
Nikita Schwass (7) had just started her first
year at school in 2014 when she started
complaining that her hips were sore.
Two days after being checked by her doctor, Nikita and
her parents were on an emergency flight to hospital in
Auckland where they were told the devasting news that
the then five year old had cancer.
Nikita was diagnosed with Acute Lymphoblastic
Leukaemia (ALL) and would immediately start treatment
that would see them in hospital, far from their hometown
of Gisborne for six weeks.
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Sharing • CHILD CANCER FOUNDATION
Rose says the Foundation’s support helped with both time
in hospital and when they returned home to Gisborne.
“We would be regularly visited on the hospital ward by our
Family Support Coordinator, who would sit and talk through
any of our questions or just listen. She was wonderful with
both Nikita and her younger sister Danika.”
“Upon returning to Gisborne we meet with Cheryl, our local
Child Cancer Foundation Family Support Coordinator, who
checks in to see how we are doing and offers help when we
need it.”
Nikita also received a Personal Development Grant from the
Foundation which helped contribute towards the costs of
her ballet lessons.
“Ballet can have many benefits for young children physically,
mentally, socially and more importantly it’s fun.”
Nikita finished her treatment on 4th June 2016. Rose says that
throughout her treatment Nikita has been extremely strong,
carrying on her schooling through The Correspondence
School. Her strength and courage were recognised when
she received a Young Achievers award for Outstanding
Determination from The Correspondence School.
“The isolation away from friends has been tough for Nikita,
but at the end of last year she was able to return to school,
ballet, gymnastics and cricket – all things she really loves.”
Tawhiti-roa
KARATE KID
When Tawhiti-roa Rangiwai was diagnosed
with cancer at the age of three, his family
motto was to “kick cancer’s butt”.
Tawhiti-roa was diagnosed with Acute Lymphoblastic
Leukaemia (ALL) in early 2014. Mum Anne says they took
him in for a check-up at their doctors after Tawhiti-roa had
not been able to shake a cough, had strange bruising and a
lack of appetite.
The GP thought he may be low on iron and wanted blood
tests done to make sure everything was normal. They took
him in the very next day for the tests.
“It was a beautiful Saturday morning when we went to the
centre for his blood test. Ahead lay a day packed full of
sports for the whanau,” says Anne. “But by 2pm that day,
our world was tipped on its head.”
Dad Jason took the call that there was something not right
with the blood test results, and the family were asked to
head straight to the Wellington Emergency Department.
“By 3pm, we received the terrible news that it looked
like Tawhiti-roa had cancer and we would be heading to
Christchurch the next day to start his treatment.”
Within 24 hours of receiving the news Tawhiti-roa and
his parents were on a flight to the Christchurch treatment
centre, leaving behind his three older sisters who were to
be cared for by family.
“The support we received while we were separated from
our other children from nans, papas, aunties, uncles, friends,
work colleagues and people we have never met as well as
the Child Cancer Foundation made the days that much more
bearable. We were grateful to the Foundation for uniting us
as a family in Christchurch – this was priceless,” says Anne.
Tawhiti-roa and his parents spent seven weeks away
from home before coming back to Wellington where he
continues to receive treatment at Wellington Oncology.
The little boy who loves Bruce Lee and Kung Fu is
fighting hard. He has been in remission since last year
but continues to have daily chemotherapy tablets,
monthly chemotherapy treatment, and three monthly
theatre chemotherapy administered whilst under general
anesthetic, as well as other check-ups.
“Tawhiti-roa is big hearted, extremely caring, funny, sweet,
sensitive and our family clown child. Over the course of this
journey our motto has changed from ‘kick cancers butt’ to
now ‘every day in remission is a good day’.”
He started school at the end of last year and Kenpo Karate
this year, which he loves.
Anne says the Child Cancer Foundation has supported
Tawhiti-roa and the family in so many ways throughout the
cancer journey.
“The Child Cancer Foundation’s support is priceless. It has
made this journey a lot more bearable,” says Anne.
She is also grateful for the Foundation’s support of her
other three children, who were affected by their younger
brother’s cancer diagnosis.
“There are the thoughtful gifts, treats and
special family events that allow all our children
to see that the cancer journey has some happy
moments to be grateful for and that we are all
in this together.”
CHILD CANCER FOUNDATION • Sharing
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CHILD CANCER APPEAL MONTH
A huge thank you to everyone who helped
and supported our Child Cancer Appeal
street collection in March.
LEFT: Thank you to the
Crusaders for their fundraising
support!
We were fortunate to have the assistance of more than
1300 volunteers nationwide, to help us with our single
biggest fundraising event of the year.
We are also very appreciative of our business partners
and other companies who supported our work during
this important month.
LEFT: 2014
National
Ambassador
Quinn
ABOVE: Our 2016 Ambassador
Paige and her brother
CHILD AMBASSADOR CALL OUT
To help us create awareness and raise funds for families
affected by child cancer, we would like to invite children
to be Child Cancer Foundation Ambassadors.
We would like to hear from children aged between 5 - 12
years (and their families) who love the camera and are
willing to support our work in a range of ways throughout
the year – both in their regions and possibly nationally.
Our child ambassadors may be asked to share their stories
with local media and on our website/social media pages;
as well as help us with profile-raising activities, including
speaking at or attending events.
You may also be part of our promotional material to
help us to raise awareness during March Child Cancer
Appeal Month and other key fundraising initiatives.
To apply, email Kylie Etherton at ketherton@childcancer.
org.nz by the end of September.
We look forward to hearing from children who are keen
to be our 2017 Child Ambassador stars!
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Sharing • CHILD CANCER FOUNDATION
We’re Lo
oking
For The
2017 Ch
Ambassa ild
dors!
WIG
WEDNESDAY
On Wednesday 22 June,
thousands of pupils, teachers,
Principals, workers and parents
chose to wear a wig to support
the Child Cancer Foundation.
1.
The colourful hairdos brightened up a
gloomy winter's day for many, while
raising funds for the Foundation. The
final tally shows 250 schools and 150
businesses took part in Wig Wednesday,
which was an incredible response!
Funds are still coming in, but it looks like
we are going to exceed our fundraising
target and it is all thanks to you!
2.
3.
There were so many amazing photos from
the day and we have included a sample
over the next few pages. There are even
more on our Facebook page. Thank you for
getting wiggy with us for New Zealand’s
first ever Wig Wednesday. We are already
looking forward to next year!
4.
5.
6.
7.
1. Jerome Kaino + CCF children. 2. Watercare staff
3. Bernadine Oliver-Kerby 4. Queen Margaret College,
Wellington. 5. South Hornby School, Christchurch.
6. Sylvia Park School & special visitor Monty.
7. The team from New Zealand Home Loans.
CHILD CANCER FOUNDATION • Sharing
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Out
&
About
EASTER
FUN
AUCKLAND
FAMILY PLACE
Children and parents didn’t
let the wind and rain stop the
annual Easter egg hunt, although
a quick relocation was needed
indoors. Face painting, craft
activities and a tasty easter egg
topped off a fantastic day at the
Auckland Family Place.
POTTERING ABOUT!
'Pottering About'
is a local cafe in
Nelson where you
can paint pottery,
which they then
glaze and fire
for you. A great
school holiday
activity!
ANNUAL
TOY
RUN
ULYSSES
MOTORCYCLE
CLUB
The Waikato Branch of the Ulysses
Motorcycle Club took to the road for
their annual ‘Cancer Kids Toy Run’ to
deliver new toys to children at Waikato
Hospital. The event has been running
for 31 years and this year raised $10,000
for the Foundation!
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Sharing • CHILD CANCER FOUNDATION
GOOD IN THE HOOD!
Z
STATIONS
NELSON
Every year, all Z stations
give away $5,000 to
neighbourhood groups
that help people who
need it most. That’s more
than $1 million across
the country to do Good
in the Hood! This year
Child Cancer Foundation
was fortunate to be
selected as a charity of
choice by 26 stations,
and received more than
$37,000 across the
country.
A Family Day Out at Bridge Valley Camp in Nelson in May - a chance for 50 adults
and children from 9 families to get together for top team events and all sorts of
activities ranging from low key paddling to the challenge of the high ropes.
FAMILY
DAY OUT
ARMAGEDDON
WELLINGTON
Each year, we are fortunate to be the recipient of funds raised through a number of
activities at the Armageddon entertainment expo in Wellington. This year an incredible
$23,150 was raised for the Child Cancer Foundation. They also provide passes to the
event and one visitor in disguise was Tutavake Pouao, who went along to Armageddon
with his family and as you can see from the photos, they had a pretty exciting day out!
Tutavake and M
ichelle
(Business Develop
ment Manager)
CHILD CANCER FOUNDATION • Sharing
11
INTRODUCING VOLUNTEER:
SARAH BEALE
We are incredibly lucky to have a small army of people who give up their
personal time, their evenings and weekends, on top of a busy working and
social life to volunteer, and help make the work we do possible. Many of
them you will have met, but you may not know what brought them to us.
Sarah Beale joined us as a volunteer in 2011. Originally
from the UK, after arriving in New Zealand Sarah was
actively looking for ways to get involved with a charity
that supports children with cancer, and was quick to say
“yes!” when a friend asked if she would like to come along
to a Child Cancer Foundation event in Paraparaumu. This
chance invitation has now grown into a long-standing
volunteering commitment, with Sarah supporting at SIBs
camps, craft days, fundraising events and coordinating
volunteers for the annual Champions Lunch in Wellington.
“I love getting right in there, whether it’s on a craft day
or on a camp, and working with the families and the kids,
but I am passionate about the awareness too,” said Sarah.
“Not everyone knows what the Child Cancer Foundation
does and there is often a “wow you do all of that” moment
when you get into the detail.”
For Sarah, providing support to siblings through the
SIBs camps has a more personal connection. “I received
treatment for cancer as a child myself and whilst our
community were fantastic in supporting us there wasn’t
much for my sister at the time. Siblings are asked to deal
with a lot and need to know they’re important too.”
Sarah says that she can’t imagine not being involved. “If
I can help provide a moment that is just about having fun
and make someone smile, and also give families hope,
letting them know they aren’t alone, then I consider that to
be a great thing to be part of.”
Wellington Business Development Manager, Michelle
Berriman, says “Sarah is a fantastic volunteer, stepping
in as often as possible when we call for help. We are
very lucky to have her support and incredibly grateful for
everything she does for the Foundation.”
Thank you Sarah for your ongoing support!
RECOGNISING VOLUNTEERS
Carol McDowell was presented with a Savemart
Community Services Award, recognising her efforts in
organising and participating in fundraising events, and
supporting her wider family during her grand-daughters
cancer treatment, and after Jessica passed away.
In Invercargill, Colin and Chris Hitchen were presented
with a joint Distinguished Service Award. Long-time
supporters of the Child Cancer Foundation, they have
served on branch and regional committees and the Board.
They are also bereaved parents and help with Family
Support in Southland.
BELOW LEFT: Carol McDowell. BELOW RIGHT: Chris & Colin Hitchen
with Karen Heslip, Otago/Southland Regional Chairperson (Centre).
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Sharing • CHILD CANCER FOUNDATION
2016 Minister of Health
Volunteer Awards
Congratulations to Jock
Davies who was recognised
as runner-up in the Youth
Health Individual category
of the Minister of Health
Volunteer Awards. Jock
Davies was 11 when he was
selected as the 2015 Child
Cancer Foundation National
Ambassador. Jock, who is
from Tapanui, spent two
years undergoing cancer treatment. By sharing his story,
Jock helped to make the childhood cancer journey, and all
its challenges, very real to those who have not experienced
it. As a Child Cancer Foundation National Ambassador, he
assisted the foundation with many activities for the 2015
Annual Appeal Campaign. Throughout the year, Jock spoke
eloquently at high-profile events. He also spoke to his
peers, both at his own and other schools, about what it is
like to have cancer. Jock’s maturity and enthusiasm to help
has assisted the foundation with communicating the true
impact of cancer and the need for fundraising, which in
turn has helped hundreds of other children with cancer and
their families. Thank you Jock!
Camp
Update
CENTRAL FAMILES CAMP
The Child Cancer Foundation’s first camp of the year was
a Family Camp held at Vertical Horizons Camp in Taranaki
in late February. The three-day camp was attended by 24
families from throughout the central North Island. Judging
from the photos lots of fun was had.
SIBS ROCK
IN THE SOUTH
The South Island Sibling Camp was
held at the fantastic Living Springs in
Christchurch in March.
Run in partnership with Camp Quality,
the 39 siblings who attended the camp
came from throughout the South
Island. All South Island Family Support
Coordinators also attended the event.
The camp was designed to allow
siblings to meet each other and
create friendships in a safe and
fun environment. The programme
involved a number of activities
aimed at boosting self-esteem, aiding
confidence and giving the children a
sense of how important they are as
siblings. Activities included a climbing
wall, low ropes, flying fox, monorail,
arts and crafts as well as a group
session with a therapeutic music/
drama instructor.
CHILD CANCER FOUNDATION • Sharing
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A Day in the Life of a
Healthcare Professional
In this new Sharing feature, we speak with Health Professionals who
support our children and families through treatment, about what they
get up to each day.
6.15am
ALARM GOES OFF
I start the day with a
10-minute meditation sit
to help me prepare for the
day. I shower, check emails
and online news over
breakfast, then get ready
for work and aim to leave
the house around 7.30am.
8am
ARRIVE AT THE OFFICE
I arrive half an hour before
my start time so I can settle
in, prepare and catch- up on
tasks from the previous day.
8.30am
JOB-SHARE HANDOVER
I job-share with a colleague
and they are in today, so
we catch-up and debrief
on the week’s events. We
are interrupted by phone
calls that I need to triage.
The Community Registrar
then arrives and we discuss
the patients who will be
coming in and prioritise
tasks for the day.
9.00am
CLINIC
There are two children
receiving cytotoxic
chemotherapy today.
The first arrives at nine
with her family and I start
by assessing how she is
doing. Once that’s done I
hand over to the registrar,
who completes their
review while I prepare the
treatment room. A Play
Specialist also joins us and
spends time with the child
prior to the procedure
and The Family Support
Coordinator meets with
the family also. Once we
are ready to go, I access
“Porty” (their Port-a-cath)
and attach an IV line and
saline. The next child
arrives and my nursing
14
colleague follows the same
procedure. I supervise
another nursing colleague
who is being trained
to administer chemo. I
have a quick tea break at
11am, and by midday both
patients have completed
their treatment.
12.30pm
VIDEO TELECONFERECE
WITH CHOC
I join a weekly meeting with
team members from CHOC
in Christchurch, along with
our lead Paediatrician and
Family Support. We update
and discuss each patient’s
care and treatment, both
in Dunedin/Otago and at
CHOC.
2pm
CLINIC AND TASKS
After a 30-minute lunch,
I continue to handover to
my colleague and action
tasks. My colleague leaves
to home visit a baby with a
complex cardiac condition,
while I continue with
tasks. Next is a patient
with Crohn’s disease
who has come in for his
fortnightly injection. He
gets very anxious and is
being supported by one of
the psychologists. Once
the injection has been
administered I get back
to the phone call and
email trail.
2.45pm
TRIAGE
A phone call comes from
the mother of one of our
oncology patients who has
had a possible chickenpox
contact at school. I assess
the details of the contact,
discuss the case with the
Paediatrician to determine
what treatment course
is required, and arrange
Sharing • CHILD CANCER FOUNDATION
a script. I work on the
oncology clinic list and ask
the registrar to arrange
any tests or scans that may
be required. I also plan for
the next month’s visiting
oncology clinic which is
only two weeks away!
4pm
HOME VISIT
At 3.45pm, I leave to home
visit a patient in renal
failure on peritoneal dialysis
and administer a weekly
injection to boost his
haemoglobin, as he is not
able to have transfusions. I
am back in outpatients by
4.30pm, make a cuppa, and
continue with tasks until it’s
time to call it a day. I leave
work around 5.30pm.
5.45pm
DINNER AND MEDITATION
I stay in town on
Wednesdays to attend
the weekly Dunedin Zen
Group meditation with
my partner. Beforehand,
we have dinner in town
and walk in Woodhaugh
Gardens.
10.30pm
BEDTIME
I am home by 9.30pm,
make a cuppa, read emails
and online news. I need to
be up at 5.15am the next
day for a morning shift on
the inpatient ward, so it’s
lights out at 10.30.
NO DAY IS EVER THE
SAME!
I love my work and the
challenges each day brings.
I ensure I have time to
rest, and make time to
potter in the kitchen and
garden, spend time with
friends, watch movies,
volunteer, meditate, walk,
and travel to visit family
and new places.
JACKSON'S
JOURNEY
Together with her family, Loma Tito recently
visited the Foundation’s Auckland Family Place
to present a very special $4,500 cheque in
memory of her daughter Jackson.
Loma penned Jackson’s Journey, a heartfelt book that
followed the family’s experiences from when Jackson was
diagnosed with an inoperable brain tumour just before
her seventh birthday, until she sadly lost her battle nine
months later.
"I definitely think writing the book helped with the grief.
The writing of it, although it was really hard because it was
reliving it, I think it was quite healing as well," she said.
The family kindly donated all the proceeds from the sale
of the book to the Foundation.
“I wanted the story to bring to those who read it my joy,
laughter, tears and a greater understanding what it is to
have a child taken too soon,” says Loma.
"Hopefully it'll help other families going through the same
grief or maybe prepare them for what’s ahead – that's all I
wanted, to help one person."
More than 350 copies of Jackson’s Journey were sold locally
in her region of Taranaki, throughout New Zealand as well
as overseas.
“I’m very grateful to the many businesses in our community
who supported me with the cost of publishing this book,”
she says.
“We wanted to donate the money from the sale of the
book to the Foundation in recognition of the support it
gave to us throughout Jackson’s journey.”
Thank you to Loma for this amazing gift to the Child
Cancer Foundation.
KIDSHEALTH:
ONLINE PARENT
RESOURCES
We are always on the lookout for new
resources that could be useful to readers of
Sharing magazine (particularly families with
a child with cancer) and want to introduce
KidsHealth, a joint parent information online
resource developed by the Paediatric Society
of New Zealand and Starship Foundation.
A few copies of the book are still available, please email
Loma at jackson.jae@clear.net.nz for more information.
ABOVE: Jayden, Loma and Lacey present a special donation
to the Child Cancer Foundation.
KidsHealth’s mission is to provide accurate and reliable
information about children's health for New Zealand
parents, caregivers, family and whānau. KidsHealth has
collaborated with the National Child Cancer Network to
make specific information about childhood cancer available.
This can be found at: www.kidshealth.org.nz/tags/
childhood-cancer. The site is optimised for those accessing
information from a mobile or tablet.
The childhood cancer pages have been viewed by people
from New Zealand and around the world. The most
popular resources (based on page visitor numbers) include
information on the importance of play while a child is in
hospital; hygiene and handwashing; pain and childhood
cancer, and going home from hospital after your child’s
cancer treatment.
CHILD CANCER FOUNDATION • Sharing
15
KIARA'S
ANGEL WALK
This year more than 350 walkers celebrated the
life of Kiara Morgan by taking part in the annual
Kiara’s Angel Walk in Orewa, north of Auckland.
The fun family event also raises money for the Child Cancer
Foundation. This year the event raised more than $18,000,
and in the five years that it has been running it has donated
$74,000 to support children with cancer and their families.
Kiara's Angel Walk began as an idea out of the sadness the
family felt at losing their beautiful four-year-old daughter
in 2011, following a long battle with cancer. Kiara was
diagnosed with a rare cancer at four months old and
underwent numerous operations, rounds of chemotherapy
and other treatments during her life, but faced it all with
incredible courage.
“In the days and weeks following her passing family and
friends talked about creating something wonderful in her
memory and the result was Kiara’s Angel Walk, a fun family
day that raises much needed money to support families
affected by child cancer,” says Kiara’s mum, Mardie.
“When the going gets tough we remember Kiara: her
brightness, her tenacity, her determination and her hope
– we take inspiration from her and push on. We are proud
to have raised so much money in the last five years for the
Child Cancer Foundation, in support of the wonderful work
it does to assist children with cancer and their families.”
Twenty butterflies were released into the air at noon to
commemorate Kiara’s life.
‘‘There are a lot of different reasons that bring people to
Kiara’s Angel Walk and we are pleased that is has become a
day of remembrance for everyone who has lost a loved one,
while having fun and raising money for a wonderful cause.”
JOIN OUR
COURAGE CREW!
Be part of our Courage Crew at the ASB
Auckland Marathon on 30 October 2016.
As a Courage Crew team member you’ll help fundraise
in support of children with cancer and their families.
We are a Golden Charity for the event,
so by registering with us you’ll:
• receive regular newsletters with training and fundraising tips
• be in to win prizes!
For more information about the event visit:
www.aucklandmarathon.co.nz or email Liz Atkinson at
latkinson@childcancer.org.nz to join our Crew.
REMEMBRANCES
Remembering those we love who continue to live on in our heart.
In our November Sharing magazine we will feature our regular Remembrance section.
We invite all families who would like to share a special memorial for their loved one
to please send a message and photo to Cherie Reid either at creid@childcancer.org.nz
or by mail to PO Box 152 Shortland St, Auckland 1140. Please send your contribution
and photo by 30 Septmeber.
16
Sharing • CHILD CANCER FOUNDATION
HATS OFF
TO MAREE
For many people, a personal cancer journey
or that of a loved one can be a redefining
moment. For Taranaki mother Maree Tong, her
youngest son Cameron’s leukaemia diagnosis
and subsequent treatment, made her feel
brave enough to do something that seemed
extravagant and just a little bit foolish…
Maree has always been creative and loved making things,
so when her Family Support Coordinator Kathryn asked her
what she would do if she could do anything in the world,
the first thought that popped into Maree’s was ‘make hats.’
A few years on from that conversation, and thanks
to a Personal Development Grant from Child Cancer
Foundation, Maree has attended a hat-making course and
is running her own business from home, making headwear
for races, wedding and special occasions.
“I didn’t start the business properly until Cameron finished
treatment because I felt I couldn’t commit – there was still
that level of uncertainty around him being unwell, and I
wanted to ensure it was a success.”
Maree says it was encouragement from her local Family
Support Coordinator that made her apply for the grant. “I
remember that first conversation and how outrageous it
seemed, and still think of Katherine every time I sell a hat
and the confidence she gave me.”
“I want to make the business work for myself and my
family – but the personal development grant has given
me extra incentive to keep the business moving forward.
I’m not into social media, but know how important it is to
get your name out there, so I made contact with people
who could help me make that happen. We have a strong
community around us and demand has been crazy –
exceeding my expectations in every way!”
Maree says the journey since Cameron’s diagnosis has given
the family a new perspective and level of gratitude for what
they have. “I don’t need to tell other families how hard it
is, but I hope that we can hold onto the things this journey
taught us forever and I am so grateful the Foundation took
a punt on me – I feel I am living the pipe dream.”
You can check out Maree Tong Millinery, Hawera, on Facebook.
The Child Cancer Foundation Personal Development
Grants Programme aims to assist children with cancer,
their siblings (aged 0-12 years), or parents achieve their
personal education and developmental goals. To find out
more about this programme or to make an application
please talk to your local Family Support Coordinator.
CHILD CANCER FOUNDATION • Sharing
17
19
th
CH A
CHAMPIONS
LUNCHEON
MPIONS LUNCHEON
W E L L I NG TO N
The Champions Charity Luncheon in Wellington
will give guests the chance to hear sporting
legends reminisce as well as support the work
of the Child Cancer Foundation.
The event will be held on Friday, 26 August at Te Papa
Museum in Wellington, on the eve of the All Blacks v
Australia test match.
The annual event is the initiative of Wellington
businessman Ian Klinac and was first held in 1998. This
year’s event will be hosted by sports broadcaster Hamish
McKay and features a panel of rugby legends and other
sporting greats.
The Champions Luncheon also includes a three-course
meal, raffles and live and silent auctions for guests to
take part in. For more information or to purchase tickets
visit www.championslunch.org.nz
LEFT: Artwork done by CCF children will be auctioned off.
ENTERTAINMENT BOOKS 2016
The 2016 / 2017 Entertainment Books are now available!
You can order your Entertainment Book or its Digital Membership
now at our online shop – www.childcancer.org.nz.
Each book or electronic membership costs $60/$65 depending
on where you are in NZ, and contains over $20,000 of value.
The best part is that $13 from each sale comes to support
Child Cancer Foundation children and families.
ROCK
MY BABY
As part of our support for families, the Child
Cancer Foundation is delighted to announce
a new partnership with Rock My Baby, a
home-based childcare service.
Rock My Baby will be providing a babysitting service
for families in regions that the service operates.
“Rock My Baby is a highly regarded organisation that
has experienced care providers,” says National Member
Services Manager Marie Purcell.
“We hope that by using this service it will enable parents
and caregivers to take some valuable time out together.”
For more information about this service please talk to
your Family Support Coordinator.
18
Sharing • CHILD CANCER FOUNDATION
Partner
Update
We are proud to welcome Honda New Zealand as one of our Hero Partners.
We are excited to announce our partnership with Honda New Zealand, a well-recognised
vehicle brand that shares synergistic values and visions with our organisation.
Honda are proud to be a Child Cancer Foundation partner, and Honda New Zealand General
Manager Marketing, Nadine Bell said: "Honda would like to help make a real difference and
support the great work the Child Cancer Foundation does in New Zealand".
CYCLING 700KMS
OVER 7 DAYS!
Choose your course…
North or South? Does this
sound like you?
Through our partnership with Honda we have become a chosen charity
for the Tour of New Zealand, one of the world's largest cycling events.
The tour involves 400 riders in teams setting off simultaneously from Bluff
and Cape Reinga, riding the beautiful roads of both islands, and meeting up
in Wellington 7 days later. All teams select a charity to fundraise for when
they register for the race.
If this sounds like you, please consider riding and fundraising for the
Child Cancer Foundation as your chosen charity. The event is being held
1st-8th April 2017. For more information please go to www.tourofnewzealand.co.nz or
contact Vicky Rope on vrope@childcancer.org.nz
We were delighted to have been chosen as the
recipient of a recent Sistema promotion in The
Warehouse stores nationwide. The promotion
saw 50c of each Sistema product sold donated
to the Child Cancer Foundation, with an
amazing $65,000 raised.
Thank you to The Warehouse and Sistema
for supporting us.
On Friday 1 April the Waikato region held a
‘Cocktails, Canapés and Canvas’ fundraising event
within the Wintec Atrium. The event showcased
regional artists, while also raising funds for Child
Cancer Foundation. With the support of local
businesses Soul Gallery, Good George, Wintec,
Free FM, Wonderhorse and our national partner
New Zealand Home Loans, a great turnout was
achieved and over $22,000 raised.
Professionals Real Estate Group support
the Foundation actively throughout the
year, but especially during appeal month.
Teams from around the country assisted
with our Street Appeal, with many giving
up their own time to “shake a bucket”.
A number of branches also organised their
own special fundraising events, including
the team from Professionals Rotorua who
ran their annual Child Cancer Charity
Breakfast and Art Auction. The event
raised close to $40,000.
Some of the other fundraising events run
by Professionals branches included:
• Professionals Manukau
and Pakuranga Family Fun Day ($930)
• Professionals Christchurch
Charity Golf Day ($5,000)
• Professionals Whakatane
Charity Auction ($22,000)
• Professionals Far North Coastal
($2,600)
• Professionals Kapiti Gala Dinner
($12,500)
• Professionals Lower Hutt
($18,700)
• Professionals Taranaki Quiz Night
($8,000)
• Professionals Pukekohe street collection
($7,500)
• Professionals Palmerston North who
sponsored the Big Rigs in Manawatu
($49,500)
CHILD CANCER FOUNDATION • Sharing
19
SUPERHEROES
Thank you to our Heroes
Partnering with
you for a better
CHAMPIONS
HEROES
community
Fuji Xerox
Kagi
Scenic Hotel Group
Invivo
New Zealand Couriers
Warehouse Stationery
New Zealand Home Loans
FOUNDATIONS & TRUSTS
HULJICH
F O U N D AT I O N
NATIONAL SUPPORT OFFICE
PHONE 0800 4 CHILD
76 Grafton Road
Grafton, Auckland 1010
PHONE (09) 366-1270
(0800 4 24453)
EMAIL info@childcancer.org.nz
WEB www.childcancer.org.nz
ChildCancerFoundationNZ
ChildCancerNZ
ChildCancerFoundation
ISSN 0114-7765
Alexander Harold Watson Charitable Trust proudly managed by Perpetual Guardian, BlueSky Community Trust, Blue Waters
Community Trust, Constellation Communities Trust, Dragon Community Trust, Dunedin City Council, Eastern and Central
Community Trust, Endeavour Community Foundation, First Light Community Foundation, Foodstuffs South Island Community
Trust, Four Winds Foundation, Geyser Community Foundation, H & K Reynolds Charitable Trust, Hawke's Bay Foundation,
James Russell Lewis Trust proudly managed by Perpetual Guardian, The J.A. Redwood Charitable Trust proudly managed by
Perpetual Guardian, JBS Dudding Trust, John Ilott Charitable Trust, Joyce Fisher Charitable Trust, Kathleen Dorothy Kirkby
Charitable Trust, Margaret & James Tetley Charitable Trust (managed by Public Trust), Mt Wellington Foundation, Nikau
Foundation, NR Thomson Charitable Trust, North and South Trust Limited, Pelorus Trust, Perpetual Guardian as trustee of the
Vernon Hall Trust, Queenstown Lakes District Council, RG Bell Charitable Trust, Sir John Logan Campbell Residuary Estate,
Skycity Hamilton Community Trust, Southern Victorian Charitable Trust, Taupo District Council, Trust House Foundation,
Wellington Children’s Foundation, White Refrigeration, Youthtown.