August 2013 - Child Cancer Foundation

sharing
AUGUST 2013
One Day
2013
INSIDE:
Amanda
and Emilie
INSIDE
THIS
ISSUE:
IFE
LUCY’S L
o
aniotot
m
E
H
T
in
WIREMU
our history
recorded
Daily Contacts
National Office
76 Grafton Road, Grafton
Auckland 1010
PHN (09) 366 1270
FAX (09) 377 9395
WEB www.childcancer.org.nz
or freephone us on
0800 4 CHILD (0800 4 24453)
Child Cancer Foundation throughout New Zealand:
NORTHERN REGION
The 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@childcancer.org.nz
Hawkes Bay Branch
Tony Bryan
PHN (06) 878 2229
MOB 027 570 5908
EML as_bryan@xtra.co.nz
PHN (03) 365 1485
FAX (03) 365 5102
EML mwalker@childcancer.org.nz
Christchurch Branch
Grant Upjohn
PHN (03) 359 9200
MOB 027 492 5427
EML jenandgrant@xtra.co.nz
Northland Branch
Louise O’Hagan
PHN (09) 437 3181
MOB 021 044 4613
EML ccfnthchair@gmail.com
Central region
The Family Place
PO Box 7062
Newtown, Wellington 6242
27 Riddiford Street, Newtown
Wellington 6021
PHN (04) 389 2620
FAX (04) 389 2690
EML aoconnor@childcancer.org.nz
Auckland Branch
Chris Steel
PHN (09) 298 9065
MOB 021 303 369
EML steeldc@xtra.co.nz
Wellington District Branch
Dean Bradley
PHN (04) 479 4162
MOB 021 407 125
EML dean@cmnzl.co.nz
South Canterbury Branch
Mark Leonard
PHN (03) 684 6161
MOB 021 149 2141
EML leomotors@xtra.co.nz
Waikato Branch
Vincent Tuioti
PHN (07) 853 5277
MOB 027 230 3691
EML waikatoccf@clear.net.nz
Manawatu & Districts Branch
Leanne Fecser
PHN (04) 495 1144
MOB 027 354 2038
EML leanne.fecser@vets.org.nz
Tauranga Branch
Debbie Roberts
PHN (07) 542 0086
MOB 021 542 022
EML liadebdean@gmail.com
Otago/southland region
The Family Place
PO Box 579, Dunedin 9054
28 London Street
Dunedin 9016
PHN (03) 471 7258
FAX (03) 471 7259
EML cdonovan@childcancer.org.nz
Eastern Bay of Plenty Branch
Yvonne Osborne
PHN (07) 307 0939
MOB 027 211 9129
EML osbyt@xtra.co.nz
Nelson Branch
Jeannette Bent
PHN (03) 543 2324
Central Otago Branch
MOB 027 454 3232
EML nelsonbranch@childcancer.org.nz Lynda Read
PHN (03) 445 1299
Marlborough Branch
EML achil@xtra.co.nz
Nanette Buchanan-Brown
Southland Branch
PHN (03) 574 1228
Jo McAslan
MOB 027 338 2086
PHN (03) 207 2550
EML mussel1@xtra.co.nz
EML mcaslan@xtra.co.nz
Taranaki Branch
Dunedin Branch
Victoria Lewis
Gloria Johnston
PHN (06) 751 3035
MOB 022 100 4756
MOB 021 156 1653
EML groovychickgloria@hotmail.com
EML victorialewis@remax.net.nz
Lakes Branch
Win Macmillan
PHN (07) 345 8144
MOB 027 476 3010
EML win@nztravelbrokers.co.nz
Canterbury/West coast region
PO Box 1846
Christchurch Mail Centre 8140
297 Russley Road, Avonhead,
Christchurch 8042
Tairawhiti Branch
Louise Savage
PHN (06) 862 3716
MOB 027 260 2750
EML louisesavage@farmside.co.nz
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Sharing • Child Cancer Foundation
North Canterbury Branch
Francie Clark
PHN (03) 327 9489
MOB 027 749 6990
EML francie.clark@clear.net.nz
North Otago Branch
Sharon Greaney
PHN (03) 431 3914
MOB 021 265 1350
EML peterpan.zip@xtra.co.nz
Contents
Advice to Relieve Anxiety
11
Kids’ Section
12
7
The Latest Firefighters Calendar
15
The Outward Bound Experience
8
Health Professionals’ Report
16
2013 National Appeal Pictorial
9
Our Brilliant Supporters – Professionals
17
Our History Book is Launched
10
Regional News
18
Addie – Back with her Family
in Palmerston North
4
Lucy’s Life in the Maniototo
6
Wiremu’s Journey
Cover Main Photo: Amanda Billing and Emilie Johns. Photo: Kim Bartley
CEO Corner
Welcome to spring. When the snow and freezing weather
conditions hit with force in June, I thought of you all, and
especially those of you in Canterbury and the deep south.
Our Family Place in Christchurch closed during the worst
of it. I so remember the winters of Culverden where we
often had really cold weather.
Some of you know I am a Winnie the
Pooh fan. Recently a friend sent me
one of his quotes. I want to share it
with you because it summed up for
me, Canterbury…anyway.
“It’s snowing still,” said Eeyore gloomily.
“So it is.”
“And freezing.”
“Is it?”
“Yes,” said Eeyore. “However,” he
said, brightening up a little, “we
haven’t had an earthquake lately.”
I was fortunate to escape the
New Zealand winter briefly in May.
I attended the Australia and New
Zealand Child Haematology Oncology
Group (ANZCHOG 2013) meeting
in Melbourne. The conference was
a fantastic opportunity to learn and
develop ideas. The things that I learned
at this conference will be extremely
beneficial for many years to come.
I am very pleased to report that the
Foundation’s support has contributed
to securing new funding of a three
year membership to ANZCHOG’s
Australian Children’s Cancer Trials.
The $100,000 membership to trials
has been funded by one of our top
supporters, Doug Catley. Thank you
very much Doug.
In other progress, on 29 May
we celebrated 35 years since the
inauguration of the Child Cancer
Foundation Inc. To mark the occasion
we are publishing ‘No Journey Made
Alone, 35 years of the Child Cancer
Foundation’, written by Bee Dawson.
It is to be launched in Auckland on
Wednesday 21st August. The book’s
publication is very significant as it
represents the only recorded history
of both the Foundation and paediatric
oncology in New Zealand.
Finally we have been evaluating
Sharing. The aim is to ensure we
develop the magazine so it continues
to meet the needs of children
and their families on the child
cancer journey. We have had some
really valuable feedback and I am
looking forward to seeing some of
the thoughts integrated into our
November magazine.
In the meantime enjoy your read of
this month’s edition. Isn’t the photo
of Amanda and Emilie on the cover
gorgeous? The two got together
to help us promote our One Day for
Child Cancer campaign, which ran
throughout July. We also have some
very special written contributions, in
particular on the kids’ pages. I am sure
you will appreciate them. – As Pooh
said, “sometimes” the smallest things
take up the most room in your heart.”
(A.A. Milne)
Enjoy spring.
Sarah Thomson
CEO - Child Cancer Foundation
Child Cancer Foundation • Sharing
3
A Never to
Be Forgotten
Celebration!
Addie Torok’s two year birthday
party held in June in Palmerston North
was a double celebration. Just days earlier
Addie completed treatment for Langerhans Cell Histiocytosis
(LCH) and so not only did she celebrate her birthday
milestone at her party, she also received her Purple Heart,
the Bead of Courage® given at end of treatment.
It was a perfect day for Addie
who was diagnosed with LCH
when she was seven-months-old
and has since been through
15 months of chemotherapy,
86 blood transfusions, seven
operations, four biopsies and six
months living in Starship Hospital.
Watching on with enormous pride and
relief at their local school hall was
Addie’s mother Tracy who chose to mark
the occasion in her way by shaving her
head in tribute to Addie, donating half
of the funds raised to the Child Cancer
Foundation’s Manawatu District.
The birthday was the first that Addie
could celebrate with her parents Tracy
and Rob, and brothers Jackson (6) and
Samuel (3). Addie “lived” in the bouncy
castle hired for the day, says Tracy, and
had a wonderful day.
On average four to five cases of LCH are
diagnosed each year in New Zealand.
It is found less commonly in girls and can
affect many different organs. In Addie’s
case, it has affected her skin, liver,
spleen, bone marrow and the gut, (the
first diagnosis of gut involvement in New
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Sharing • Child Cancer Foundation
Zealand). LCH behaves like a cancer and
is treated similarly. Addie was initially
treated on the standard protocol, but
when this did not control her disease,
her treatment was intensified and the
chemotherapy was administered more
frequently for 10 months. She has 1,500
Beads of Courage®.
From the end of January this year to the
end of July, Addie and Tracy stayed on the
ward of Starship Hospital in Auckland,
with Tracy breastfeeding Addie.
Prior to Addie’s illness Tracy had worked
in childbirth education and was a stay
at home Mum as much as possible. The
isolation and being tied to Starship was
very stressful.
Rob had to stay in Palmerston North
to look after the two boys and work,
and the strain
of treatment was
extremely tough for
everyone. Not knowing
what the outcome
would be for Addie
was the hardest part.
Tracy found a way to
help her get through
her depression and
panic attacks.
ABOVE: Addie with her
Beads of Courage®.
“I found that while watching TV, my
mind still travelled. Crocheting was
an awesome way of controlling my
breathing.” she says.
Addie was the inspiration for Tracy to
start a small business called Haddies,
a quirky fun hat-creating enterprise.
“There was a silver lining to the
journey,” she says. Tracy has also faced
difficulties explaining to people exactly
what her daughter was facing.
“People expect it to be leukaemia or
a tumour, when they hear about the
chemotherapy. I just explained it is very
rare and that the Langerhans cells had
decided to attack her organs and it was
treated like a cancer,” she says.
Tracy found great relief and support from
her Child Cancer Foundation Support
Coordinators in Auckland and Manawatu.
“They understand - the empathy, not sympathy, was amazing,
I would have been lost without it,” she says.
“Janet (Masina) in Auckland just seemed to know when she
needed to walk into the room at the right moment. I loved that
at CCF I was ‘Tracy’, not Addie’s Mum as I was everywhere else.
“At home in Manawatu, a voucher would turn up the next
day after I had been struggling or Bev (Randall) would arrive
around at the door with support,” she says.
Tracy decided to give back to the Child Cancer Foundation
through her head shave. “It was indescribable how liberating it
felt to do that, more than I thought, it’s hard to explain.”
She is happy with her new look even if it is a bit cold at night.
Having to put a beanie to keep warm before going to sleep is
nothing compared to what Addie went through.
Back at home in Palmerston North Tracy and Rob are getting
used to this new phase of the journey. Tracy says it’s a
very strange feeling for the family to transition from being
completely dependent on the staff at Starship Children’s
Hospital and the medical teams in Palmerston North – to now
being left to be ‘normal’ again.
Addie has been developmentally assessed and is currently
sitting at five months behind her chronological age. “Addie
was born seven weeks early and also spent six months fighting
for strength in hospital, so this assessment is pretty good going
for a little girl who has been through so, so much in the two
years she has been here,” says Tracy.
Onwards and upwards. Addie is a true miracle!
• Tracy is starting a group to raise awareness
on histio illnesses. She has started a community
support group on Facebook called Histio Helpers
– New Zealand.
TOP: In hospital.
ABOVE: Addie with Mum and Dad at her birthday party.
FAR LEFT: Addie with her brothers Sammy (left)
and Jackson near time of diagnosis.
Langerhans Cell Histiocytosis is part of a group of clinical diseases called
histiocytoses, which are characterised by an abnormal proliferation of histiocytes. It is a rare disease
of the immune system that may affect any age group. It can affect many different organs, including
the skeleton, skin, lymph nodes, liver, lungs, spleen, hematopoiesis, or central nervous system (CNS).
Accordingly, the range of clinical symptoms is wide.
There are two widely recognised disease extent categories: single-system LCH (involvement of a single
organ or system) and multisystem LCH (involvement of two or more organ systems). Treatment differs
depending on whether it is a single system or multisystem disease.
Child Cancer Foundation • Sharing
5
Lucy’s Life
in the
Maniototo
Isolation is part of every child’s
cancer journey, but the Falconer
family, who live on a station in the Maniototo,
Central Otago, are more remote than most.
Their 4,000 hectare deer station is
prone to being cut off from the rest of
the world by both flooding and snow.
Their internet is only made possible
through a satellite connection.
Distance has become more of an issue
for the family since five-year-old Lucy
was diagnosed with Acute Lymphoblastic
Leukaemia (ALL) in February 2012, but
they have coped remarkably well.
Lucy was diagnosed with ALL two days
before one of the biggest events on
the Falconer’s station calendar - the big
annual bull sale (male elk). She was flown Lucy has had a run of infections common
to Christchurch and didn’t get back home to children on treatment, but also
for three months.
contracted viral meningitis in February
this year. Then no sooner had the family
Late June’s floods and snow caused concern
got home than Lucy’s little brother
for Lucy’s Mum, Mary and Dad, John.
Charlie came down with chicken pox,
Though if Lucy fell sick they reckoned
meaning another dash to Dunedin for
the farm’s four wheel Landcruisers with
immunoglobulin injections for both
snorkles and double chains, “could get
children to protect Lucy.
through most closed roads.”
Despite the additional challenges, Lucy
There is only one GP in their nearest
has an idyllic lifestyle in Central Otago.
town, Ranfurly, which is half an hour
away with a population of 400. The
“She has only nine children in her class at
family drive to hospital in Dunedin,
Maniototo Area School, and everyone knows
two hours away for less complicated
everyone and is so supportive,” says Mary.
treatments other families usually have in
Lucy loves farm activity including the
their regional hospital.
annual bull sale, which she was able to
be part of this year after missing out in
2012. Mary and John generously donated
half a percent of the sale profits to the
Child Cancer Foundation this year. With
agricultural company PGG Wrightson
matching the donation it amounted to
several thousand dollars.
“Lucy also has a lovely little pony named
Spaz - we didn’t name him,” jokes Mary.
“He really looks after her and gives her
confidence.” The region is very sporty
and Lucy is not yet able to take part in
other activities so her pony is wonderful
for getting her outside and active.
With nearly 10,000 acres (40 square
kilometres), grazing will never be a
problem and Lucy is looking forward
to many happy times ahead with her
pony and life in the Maniototo.
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Sharing • Child Cancer Foundation
WRN’s
Journey
Wiremu Royce Newport
Tina Newport has kindly agreed to share her
family’s story of their son Wiremu’s cancer
journey. The Newport family live in the Waikato.
We often thought about whether we
would be blessed with a son. Years were
going by, and three of our daughters
were already adults with the fourth being
ten years old. Time wasn’t on our side
biologically but....
Treatment started practically straight
away. Support networks like Child Cancer
Foundation made themselves known
to us, we were introduced to Ronald
McDonald House, the doctor came
and empowered us with information
about the disease and after a few days
the cloud surrounding our heads was
slowly dissipating.
Before we knew it our yearning wish
became a reality on the 12th of June 2009
with the entrance of our long awaited
taonga Wiremu Royce Newport (WRN) born Suddenly lumbar puncture, bone marrow
@ 12 minutes past 6 and weighing 6lb 12oz. aspirates, PICC line, hickman line were
common in our vocabulary. We were
So our son was born, life was good and
entering a new world and through each
our treasured taonga played happily, often phase of treatment you learnt new words
seen following his father around and being to grasp and process.
his happy shadow. All of a sudden our
So in November our son was diagnosed
son had a bout of Tonsillitis that couldn’t
with an aggressive form of Acute
be healed with antibiotics and when his
Lymphoblastic Leukaemia (ALL). We spent
health didn’t improve and his lymph glands
a fortnight on the ward and a fortnight
were terribly swollen, his sister prompted
staying down at Ronald McDonald
us to take our son to a medical centre we
House. Then home we went for a few
hadn’t yet visited. So to Anglesea Medical
days and returned to Auckland for our
Centre he went where luckily the doctor
review meeting. This meeting revealed
thoroughly questioned my husband and
that his leukaemia was still aggressive,
said that he had to be taken for blood tests
however it then went from ALL to Bilineal
first thing in the morning.
Acute Leukaemia or Mixed Phenotype
Who was to predict that by the afternoon Acute Leukaemia, a combination of both
Acute Lymphoblastic and Acute Myeloid
of the 6th of November 2012 our world
as we knew it swiftly changed? We were Leukaemia which now changed the whole
treatment structure entirely. Our son was
also told that our beautiful boy had a
now to undergo radiation therapy. ATG,
form of Leukaemia. The word ‘cancer’
intense chemotherapy and finally a bone
now became a part of our world.
marrow transplant and this took place on
Early the very next morning we were
the 25th of March 2013.
transported to Starship Hospital –
Daily prayer became normal. Tremendous
Haematology/Oncology Ward 27B and
support
from whanau and friends was
27A(Clinic) and the vastness of it all
embraced,
and love, prayers and positive
set in. Devastation, loneliness, self pity,
thoughts
were
sent our way daily.
thoughts of why our only son, gloom and
doom, head stuck in a thick cloud became Excitement was certainly in the air when
the norm for a while. However there will
WRN’s blood counts started to show
on the scale. In just three weeks WRN
always be that question with no answer.
improved and he was discharged from the
bone marrow transplant unit.
Six days out of the unit and again our
world went into turmoil. A common and
could-be-fatal complication arose and
our son started experiencing tremendous
stomach pain, diarrhoea and vomiting.
These set in fast, our son lost two
kilos in just two days and he became
dehydrated and very lethargic. A few
days later he was diagnosed with Graft
vs Host Disease of the gut which is a
known complication, especially if the
bone marrow donor is unrelated. This,
the GVHD journey on the ward, lasted for
six weeks and at times we had intense
scary times. GVHD healing is certainly
slow. We were discharged from hospital
with ten medications, each with their
own side effect, the most peculiar one is
cyclosporin an immunosuppressant with
a hairy side effect, oh and prednisolone
with the tantrum side effect.
Three months after the transplant
and a month after GVHD, my son’s
chronological age is hovering around at
least 60 years old. He’s still yet to master
eating, and stomach pains, and wanting
to vomit are still occurrences.
However we visualise and pray for a
prosperous and abundant future with
good health for our son, and wish the
same for all children and young people
who are facing, or have faced a life
threatening journey.
No reira he mihi nunui ki to tatou
kaupapa a Child Cancer Foundation,
nana tetahi hei manaaki hei tiaki i a
matou i runga i tenei huarahi, kia kaha
hoki ki nga whanau i mauiuitia te mate
pukupuku. Paimarire.
Child Cancer Foundation • Sharing
7
Do You Know About Our
Personal Development
Grants Programme?
The purpose of the Child Cancer Foundation
Personal Development Grants Programme is to
assist children who have been diagnosed with
cancer, their brothers, sisters or parents/primary
caregivers, to achieve their personal educational
and developmental goals. Below is an example
of how one parent benefited from the programme
after he was funded to go on an Outward Bound
course in Anakiwa in the Marlborough Sounds.
Dan lives in Tauranga with his wife
Alicia, five-year-old Max who has
Acute Lymphoblastic Leukaemia,
and his brother Finn, who is three.
Max is due to complete treatment for
ALL this month. He has been fortunate
to have a relatively uncomplicated
treatment with fewer setbacks than
some other children encounter, but as in
all families on the cancer journey, every
family member has been affected.
Dan values being the best he can be
throughout life, in particular as a parent
and family member.
He has wanted to do Outward Bound
to challenge himself physically and
mentally. Outward Bound is a charitable
trust which aims to inspire personal and
social development through outdoor
challenge and adventure.
“My philosophy is you are not going be
any good to anyone else if you don’t get
yourself right,” says Dan.
Right from day one of the eight day
experience in April, Dan relished the
physical adventures, which included rock
climbing, high ropes, tramping, kayaking
and sailing. He was particularly intrigued
to see how he would cope during his two
night solo bush challenge, when he was
left alone with nothing but a tarp and
very basic food (some carrots, raisins,
apples and water).
During the isolation Dan wrote a reflective
letter to himself, which organisers will post
to him in six months time.
Dan’s isolation was a little tougher than
that of the other participants, as Max
was due to have chemotherapy the same
week. All phones were taken away from
those taking part on the first day so there
was no checking in, although Dan was
contactable through team leaders if there
was an emergency.
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Sharing • Child Cancer Foundation
“The whole thing was life changing,”
says Dan. “I can’t pinpoint any one
moment, but two specific things have
come out of the experience.
“I now make time to finish work early
every Friday to pick up my children, and
I have taken on a project”.
Tauranga Hospital has space set aside for
a children’s playground, but there is
nothing on it. Dan has decided to lead a
fundraising effort to develop the area for
the children’s ward. He has been inspired
to put his skills as a self-employed
marketer to greater good.
In addition to starting the new project,
August will be a very special month for
the Necklen family. Not only will Max
complete treatment but the very next
month the family is expecting the arrival
of a new family member, with Alicia due
to give birth. What better milestones
could the family wish for?
If you would like to find out more about
the Child Cancer Foundation’s Personal
Development Grants Programme
(formerly known as our Scholarship
Programme), please speak to your
Family Support Coordinator.
3
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Child Cancer Foundation • Sharing
9
Child Cancer Foundation
35th Anniversary
- Our History
In May we celebrated the 35th anniversary of the inauguration
of the Child Cancer Foundation Inc. The Foundation was
incorporated on the 29th of May 1978, and the first ever
AGM was held a week later on 7th June in the Princess Mary
Children’s Hospital.
To mark the occasion we are publishing ‘No Journey Made
Alone: 35 years of the Child Cancer Foundation’. This book has
been completed by author Bee Dawson and will be launched
at Highwic in Auckland on Wednesday the 21st of August.
The book captures the spirit of the Child Cancer Foundation,
and is a tribute to those people who had the strength and
fortitude to make a difference in the lives of children and
their families over the last 35 years.
CCF Chair John Robson says in the book’s foreword: “It is
a reminder of the dedication and bravery of our health
professionals, who have had an unwavering dedication
to improving the lives of our children.”
The book also touches on one person who was instrumental
in the work of the Foundation for almost 35 years – Lady June
Blundell, who sadly passed away 31 October 2012, inspired
many people and is greatly missed.
Other chapters centre on life members, previous chairpersons,
CEO’s and executive directors, family support coordinators,
volunteers, families and sponsors.
Further details about the book’s availability will be published
in our November Sharing Magazine.
NATIONAL AWARDS
Congratulations to
the recipients of the
Child Cancer Foundation
SaveMart Awards.
The wonderful volunteers were
nominated by their branches for these
inaugural awards. Thank you very much
to each of you for your diverse and
much valued contributions. Thank you
also to our valued sponsor SaveMart for
making the awards possible.
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Sharing • Child Cancer Foundation
SaveMart Community
Service Awards
Distinguished Service
Awards
Craig Adams - Otago/Southland
Dave Johnston - Otago/Southland
Alliance Group - Otago/Southland
Aracelli Boer - Tairawhiti
Susan Abey - Otago/Southland
Patty Dunseath - Tairawhiti
Mike Hanlon - Canterbury
Malcolm White - Northern
Craig Maxwell - Central
Anne Shirley - Northern
Sheila Brown - Northern
Tam White - Northern
Fastway - Northern
Jocelyn Torepe - Canterbury
Marion Andrews - Northern
Community Service
Awards
Alesha Murray - Central
Sue and Murray King - Central
Maurice Carlin - Northern
Violet Bazil - Northern
Lee Costello - Northern
12 Ways
for Parents
to Help Ease
Children’s Fears
and Anxieties
Should you find yourself visiting
hospital with a sick child, there
are a number of ways in which
you can help them. Talking to them
about what is happening and being
involved in all the decisions made
about your child’s health care will
help all the family to cope with this
situation more effectively.
You are an important member of the
health care team. Your knowledge of
what helps your child, and what may
make them more anxious or distressed,
is very useful information. Before your
child undergoes any treatment, it is
important for you to know as much as
possible about why your child is unwell,
what procedures will be done and what
choices are available. This will help you
to feel less anxious and in turn, will help
you support your child to manage any
fear and anxieties they may feel as a
result of a medical procedure.
If your local hospital has a play
specialist then he or she may be able
to advise you on how to help your
child cope with illness, treatment
and hospitalisation or contact the
Hospital Play Specialists Association
of Aotearoa/New Zealand at
hpsasecretary@gmail.com
- Information kindly provided by the
Hospital Play Specialists Association
of Aotearoa/New Zealand
Find out what will ha
ppen. Know why yo
ur child needs
a procedure, how it
might feel and how
long it will last.
Consider being with
your child during th
e procedure –
discuss this beforeha
nd with the doctor
or medical staff.
Explain to your child
simply but truthfully
why the
procedure is needed
, what they can expe
ct to feel,
see and hear and w
ho will be with them
throughout.
Try to avoid creatin
g undue concern, bu
t do not make
promises that you ca
nnot keep, e.g. do no
t tell them that
a procedure will no
t hurt unless you ca
n be sure of this.
If your own fears an
d concerns are such
that
they are making yo
ur child more anxio
us
, talk
them through with
medical staff or with
other
supportive adults ou
t of your child’s hear
ing.
Encourage curiosity
and exploration. En
sure that
staff caring for your
child explain to him
or her
(not just to you) wha
t they will be doing
an
d the
purpose of the equi
pment they are usin
g.
Reassure your child
that the hospital do
ctor’s office
or clinic is not a pu
nishment and it is no
t necessarily
a place where child
ren will experience
pain.
Encourage your child
to ask questions an
d
to express any conc
erns they may have
.
Where possible use
simple language and
explain the meaning
of unfamiliar terms
they may hear, e.g. “a
naesthetic”. When
describing a medica
l procedure try not to
use words that have
double meanings or
which may be frighte
nin
g, e.g. use “special
medicine” instead of
“dye”; “numb” or “m
ake sleepy” instead
of “deaden”; “make
an opening” instead
of “cut”.
Help your child man
age pain or discomfo
rt. Many coping
strategies can be us
ed to help reduce an
xie
ty and perceptions
or pain and discom
fort, depending upon
yo
ur
child’s age,
e.g. squeezing your
hand and saying “o
uc
h”
, distraction
with bubble blowin
g, songs or stories,
de
ep
steady breathing,
video games or mus
ic.
Afterwards, comfort
your child in whate
ver ways are
soothing and reassu
ring to them, e.g. by
holding, rocking,
touching or strokin
g.
Encourage play both
before and after proc
edures.
Playing, painting, an
d storytelling or sto
ry
w
riting give
children control, he
lp them to express
their feelings,
understand what is
happening, and cope
with unfamiliar
or difficult situations
.
Child Cancer Foundation • Sharing
11
* KIDS’ PAG E S * K I D S ’ PAG E S * K I D S ’ PAG E S * K IDS’ PAGES * K IDS’ PAGES * K IDS’ PAGES * KID S ’ PAGES
KIDS’
PAGES!
LEFT: Xavier and
Mum with Captain
Feathersword
and Anthony.
BELOW: Oliver, Xavier,
Mackenzie and
Neve with new
Wiggle Lachy.
Your time to shine
Xavier Michelle celebrated his birthday recently with the
Wiggles. How lucky was he?! His birthday just happened to be on
the same day that the Wiggles (his favourite people in the world)
were having their concert in Dunedin. To top that off Xavier, his
brother Oliver and friends Mackenzie and Neve were lucky enough
to get to meet the Wiggles prior to the show. Xavier was definitely
star struck and it couldn’t have been a better birthday. After the
concert Xavier had a Wiggles themed party at home with family and
friends. Xavier is on treatment for Acute Lymphoblastic Leukaemia.
Hi my name is Tatyanna. I was diagnosed with stage four
Neuroblastoma when I was 11 weeks old. When I was 10
months old I reached the end of my treatment to find that the
tumours had returned. They sent me home with my mum and
dad and gave me three weeks to live. Today I am 11-years-old.
Recently I had an amazing adventure with my mum that
I would like to share.
Mountain Biking the Heaphy track
Recently, I mountain biked the Heaphy Track, situated in the
Kahurangi National Park, it is 78.4 Kms long.
It was a great challenge, was great fun and I really enjoyed it.
The first day we grinded uphill for 6hrs, when we got to the
top it was well worth it, the D.O.C ranger had made us pikelets
which was a great surprise.
Day two was over the Gouland Downs and past the “Famed
Boot Tree”; even with a misty rain this area was beautiful.
That night there was a MASSIVE Hail storm that lasted for three
hours and we woke the next day to heaps of snow all around
the hut which was absolutely amazing!
Day three was 6hrs long, the first three hours had plenty of uphill
which was a challenge in the snow, the last three hours being all
down!! It would have been “Such fun” but we had no brakes left.
The final two days were as amazing as the previous days;
however the West Coast delivered different scenery with the
waves crashing on the beach and Nikau Palm trees all around.
It was a really fun adventure but I was glad to eat
Non-dehydrated food when I got back!!!
Tiana Gray
2, Fielding
12
Sharing • Child Cancer Foundation
Nikhil D’Cunha
passed
away on the 5t
h of
November, 20
11. His
twin brother Yo
han,
(14), wrote the
attached
poem for Nikhi
l on the
first anniversar
y of his
death in Nov 20
12 to
remember Nik
hil. He
would like to sh
are it.
* KIDS’ PAG E S * K I D S ’ PAG E S * K I D S ’ PAG E S * K IDS’ PAGES * K IDS’ PAGES * K IDS’ PAGES * KID S ’ PAGES
Smiley Riley
Ariana’s Speech
This is Ariana Pohio’s school speech that she
wrote
last year. After writing it she was sick for six
weeks
and never got to say it at school. Ariana is nine
and
attends a small rural school. The topic for the
speech
was “what we are thankful for”. Ariana has been
in
remission for two years since her cancer treatm
ent.
1. Hello. Ok you have asked me to speak
about what I am thankfull for, well if I had to
write it all, it would be a book bigger than the
Guiness book of records!! So I am going to
speak of some people who I am thankfull for.
2. 4 years old and I got sick, then at
6 years old I got really sick again it was
cancer. When I found out I was sick
again I was really sad. I went to Starship
hospital in Auckland for 9 months.
3. When I was there all my friends from
school and Gisborne sent me cards, gifts
and lots of love for this I am thankfull. My
sister Anita and my nanny would travel
to visit me and my mum. They would stay
at the Ronald MacDonald house “ WOW
WHAT A PLACE”. We still stay there
when we go back for check up’s.
4. I am thankfull that we have some
where to stay. One trip when my nanny
and Anita came to visit they brought my
cat Roger. This was the best it made me
feel ‘SOOOO” happy. We got to hang
out in a place called pet corner for a
whole afternoon.
5. Then he
went and st
ayed
at my new
friend Helen
’s House.
I was so than
kfull to see
my cat
and for ever
yone who h
elped get
him to Auck
land.
6. There are lots of really good
doctors and “FUN” nurses in
starship and gisborne hospital.
They made christmas fun with
dressing up and decorating the
ward. For my Birthday they had
LOTS of party poppers and crazy
string “MY ROOM WAS A MESS”!!
7. When the
Doctors or nu
rses
do a procedur
e I would ge
t
a bead
to represent
what they di
d to me.
I know have
over 3,000 be
ads
of courage.
8. The Doctors were so good
that they made me well again.
And here I stand before you
and for this I am thankfull. :)
Eleven-year-old Gabby Devine,
from New Plymouth started
treatment for Ewing’s Sarcoma
early this year and is looking
forward to completing treatment
next month. She would like
to share this song.
Summer time.
Oh,oh, oh it’s summer time
And everyone is being so polite
I got to stay cool
And go to the pools
Because it’s summer time
we can do what we like
Because it’s summer time
we can do so many things
Addie Jane
Torok 2,
Palmerston
North
(Her name was
written by her
big brother)
You have to know tired
play
to know
You have to know pain
better
to know
ache
know
You have to
tickle
to know
You have to know rest
ready
to know
ital
You have to know hosp
home
to know
g
ceilin
You have to know
sky
to know
d
scare
know
to
have
You
safe
to know
You have to know isolation
embrace
to know
es
edur
proc
You have to know
finished
to know
more
one
know
to
You have
over
to know
You have to know wait
now
to know
You have to know yuk
yum
to know
still
know
You have to
cuddle
to know
You have to know jab
joy
to know
You have to know hurt
hug
to know
ouch
You have to know
kiss
to know
ist
pers
know
to
You have
win
to know
You have to know Riley
brave
to know
You have to know Riley
courageous
to know
You have to know Riley
fighter
to know
You have to know
Riley
to know
Smiley
Woolmer,
ine
This poem was written by Lorra
’s school
Mara
Riley
at
who is a teacher aide
land.
Auck
in
ol
Scho
- Royal Oak Primary
.
Riley
to
te
tribu
a
She wrote it as
We can stay in the sun
And have so much fun
We can lay in the sand
If you pass me your hand
Because it’s summer time
we can do what we like
Because it’s summer time
we can do so many things
It’s summer time
and the sun is setting down
It’s time to go outside
and hope for a great day tomorrow
Child Cancer Foundation • Sharing
13
* KIDS’ PAG E S * K I D S ’ PAG E S * K I D S ’ PAG E S * K IDS’ PAGES * K IDS’ PAGES * K IDS’ PAGES * KID S ’ PAGES
Trent Dick (14),
charity with
recently raised $500 for
draising
fun
a
gh
his artwork throu
aru. He
Tim
in
s
auction. Trent live
February
in
ALL
h
was diagnosed wit
in May
ent
atm
tre
2008 and finished
other
any
like
life
2011 and is living
ll,
tba
foo
g
yin
pla
healthy teenager
ms
dru
the
g
yin
pla
,
listening to music
.
can
he
ver
ene
and drawing wh
Autumn
A carp et of grass
still has the
morning dew left
dead on it.
The leaves merge
on the ground.
The colour grey vaca
tes my life,
Transforming into ora
nge and yellow.
A choir of birds tun
e my ears and
echoes through tree
s,
Leaves begin to da
nce along .
I gaze at the mount
ain of leaves
thinking , “Should
I bomb?”
That thought to me
, was
a st raight away, “Ye
s!”
Bombs away!
By Megan Tansey,
Age 9
Waimairi School, Ch
ristchurch
We would like to
introduce a new page
to celebrate children
who have finished
their treatment.
We’ve seen this in overseas
publications and think it would
be a nice addition for Sharing
Magazine. Let’s celebrate our
positive milestones.
If you would like your name
included in our next magazine
please email your name to Megan,
mhorsburgh@childcancer.org.nz
by the end of September to make
our November 2013 issue.
Justus
Reid-Toka
6, Auckland
Tysyn
Reid-Toka
5, Auckland
Friendship
Bracelet
Supporting Child Cancer
Jewellery entrepreneur Kat Gee of Kagi has created a
unique turquoise friendship bracelet in partnership with
the Child Cancer Foundation (CCF). Turquoise has long
been a symbol of friendship, strength and protection, so
it is fitting that this bracelet is using the magic
of these stones to support children with cancer.
Show your support of the Child Cancer Foundation
with this limited edition friendship bracelet.
$10 from every $69 bracelet sold
goes directly to the charity.
Treat yourself or surprise a special friend
by purchasing your bracelet at:
www.kagijewellery.co.nz
Sharing
• Child
Cancer
Foundation
14Billing
Amanda
and
Lulu as
Child
Cancer Foundation Ambassadors
*
FU NDRA I S I NG
*
F UN DR A I S I N G
*
FUNDRA ISING
*
FUNDRA ISING
*
FUNDR AIS IN G
Firefighters
Calendar Goes
From Strength
to Strength
The 2014 edition of the New Zealand
Firefighters Calendar will be available for
purchase from October. The Firefighters
Calendar has developed a very strong
tradition since it was launched in
1990, and is now the longest running
Firefighters calendar in the world!
Over the 23 years that the calendar
has been produced it has raised
an astounding $700,000 for the
Child Cancer Foundation. This has
contributed significantly to the
support we have been able to
provide for children with cancer,
and their families.
We can’t tell you who is featuring in this
year’s calendar, as it is strictly under wraps
until they hit the streets, but we have
been lucky enough to be involved behind
the scenes in one of the shoots and can’t
wait to see the final product!
For many years Les Presling was the
driving force behind the calendar, working
tirelessly to produce it annually, and we
would like to thank him sincerely for his
dedication to the Child Cancer Foundation.
Once again this year the New Zealand
Firefighters Sports Association is
producing both a men’s and women’s
calendar. The women’s calendar was
introduced for the first time last year and
has been positively received.
The Spirit of
Generosity
A special thank-you from Child Cancer
Foundation to Tony Gorton, Mike Guy
and the team at Cardinal Logistics for
their incredible support.
Cardinal’s continued commitment and
generosity has made a very real and
meaningful difference for children with
cancer and their families.
The Association’s Business Manager
Heather Stanley and Production Manager
Tony Scott took up the reins from Les last
year and have been dynamos. They have
already introduced several fantastic new
promotional ideas to make the calendar
even more successful than ever, including
a new launch event.
A huge thank you to Heather, Tony and
Les who have generously given their time
and expertise to produce the calendar,
and to all the Firefighters who graciously
suffer the good-natured ribbing of their
colleagues, to grace its pages.
Calendars can be ordered at www.
childcancer.org.nz from September 16th.
One Day for Child Cancer
A huge thank you to our beautiful ambassadors Amanda Billing and Emilie Johns who
fronted our One Day for Child Cancer campaign which ran throughout July. Lots of
wonderful events took place to support the hopes and dreams of children with cancer.
We also ran the “One Day Dance Challenge”. People were asked to choreograph
and perform a dance set to “A Minute of One Day” which was written for the
Child Cancer Foundation by TrueBliss last year. We’ll let you know who the winner
is in the next edition of Sharing.
The Cardinal Logistics Charity Golf Days
have raised a staggering $375,000 for
the Foundation over the past 14 years.
What an outstanding contribution from
everyone at Cardinal Logistics, along
with the support of their Golf Day
charity partners, JLT New Zealand and
Whitford Park Golf Club.
On behalf of the many hundreds
of children with cancer and their
families who have benefited from your
generosity, we sincerely thank you all.
Child Cancer Foundation • Sharing
15
*
* HEALTH PROFE S S ION A L S ’ R E P O R T * H E A LT H PROFESSIO NA LS’ REPORT * HEA LTH PROFESSIO N ALS ’ R EP OR T
Health Professionals’ Report
Karyn Bycroft, Nurse Practitioner, Paediatric Palliative Care Service,
attended the 1st European Congress on Paediatric Palliative Care in Italy,
supported by the Child Cancer Foundation Health Professionals Fund.
Karyn was keen to share her experience in Sharing Magazine.
1st European Congress on Paediatric Palliative Care, Rome.
I would very much like to thank the Child Cancer Foundation
for their on-going support of the Paediatric Palliative Care
Service at Starship Children’s Hospital, and in particular,
financial support through the Child Cancer Foundation
Health Professionals Fund to attend this conference in Italy.
Oral Presentation
The paper I presented was Changing the language: Integration
of “allow natural death” into the National Children’s Hospital
in New Zealand (Bycroft K., Jamieson J). The presentation was
well attended and the feedback was very positive.
Attending the 1st European Congress on Paediatric Palliative
Care, and presenting a paper, was a most wonderful and
worthwhile experience. I felt very privileged to attend such
a relevant conference to my role, to network with leading
international health professionals in this field, and to be able
to share some of the work we are doing here in New Zealand.
My presentation was on a perspective of the work the
Paediatric Palliative Care Service at Starship Children’s Health
has led. Allow Natural Death (Te Wa Aroha) process focuses
on communicating with children and families about end of
life care. The concept of Allow Natural Death was originally
introduced to New Zealand by Jess Jamieson, Paediatric
Palliative Care Social Worker at Starship Children’s Health. She
was a co-author with me on this paper however did not attend
the conference.
Conference Highlights
Presentations on a range of issues relating to Paediatric
Palliative Care were very worthwhile. The first day included
some great presentations from world renowned people in this
field. Topics included:
• Palliative Care as children’s right
• A young woman’s and a family’s experience
of Paediatric Palliative Care in Italy
• Ethical issues
• Grief and Bereavement
There were a number of presentations on symptom
management. The one that I gained the most insight from
was on sleep disturbance and daytime agitation in severe
neurological conditions. This is certainly a recurring issue in
my clinical practice in children with a range of conditions. The
session highlighted the urgent need for a validated assessment
tool for sleep disturbance in this patient group.
There were three other presentations that I would like to
mention and that I will certainly be following up on. They were:
• Communication and support in paediatric palliative care
– A family perspective. Ulrika Kriecbergs.
• Support for the team: the challenge of transforming suffering
into resilience. Danai Papadatou.
• Research in Paediatric Palliative Care: Consideration in Theory,
Method and Implementation. Myra Bluebond-Langner.
Presenters and attendees were from a range of professions
including: medical, nursing, psychological, social and spiritual roles.
16
Sharing • Child Cancer Foundation
People around the world were impressed by what we are
doing in New Zealand and since arriving back here I have had
a number of health professionals from the UK, USA, Kuwait,
Georgia, Ireland and Germany wanting to know more about
our service, this work and even planning a visit here. My
presentation received a special mention in the summing up of
the conference.
Thank you once again for your support as this was more
valuable than I can put down on paper. I would not have been
able to attend this conference without the financial assistance
received from the Child Cancer Foundation. I trust some of the
content and connections will continue to grow and enhance
the service provision for children and their families with lifethreatening conditions such as cancer across New Zealand.
*
SPONSO R
U PD ATE
*
SPONSOR
UP D AT E
*
SPONSOR
UPDATE
*
SPONSOR
UPDATE
*
SPONS OR
U P D ATE
A Partnership Heading
Towards 20 Years
Professionals Real Estate Group has been in partnership as
a Gold Star Sponsor of the Child Cancer Foundation since 1995
and over this time has contributed in excess of $3.7 million.
The partnership has traversed this period of time because
we recognise the unbelievable work the Foundation does for
children and their families affected by child cancer. We know
that every week there are three children diagnosed with
cancer; every year there are over 100,000 treatments, and for
every treatment the child receives a Bead of Courage®. Some
children can have over 1,000 beads from a very young age.
Activities included hosting numerous Charity Breakfast Auctions
and funrazors - where locals gathered to shave their heads in
support of child cancer. There was also a Late Lunch function
incorporating a funrazor, a Grand Charity Auction with guest
speakers; Quiz Nights with auctions of artwork and sponsored
products; a Child Cancer Movie Night; a Golf Tournament; and
Street Bucket Collections among many others.
Below is some of the action from Professionals Real Estate
Group’s fundraising events during the Child Cancer Foundation’s
National Appeal month.
We at Professionals, truly admire the work that the Child Cancer
Foundation undertakes to ensure that ‘every child and their
family walking the child cancer journey will never feel alone’.
The Child Cancer Foundation receives no direct government
funding and relies on contributions from organisations like
the Professionals Real Estate Group. Professionals Real Estate
Group have assisted with funding of the Foundation’s Head
Office, Holiday Homes in Taupo and Queenstown, Family
Places in Wellington and Auckland, as well as contributing
a donation from each property sale to the Child Cancer
Foundation. But it’s the ongoing funding that is important for
the various support activities the Child Cancer Foundation
provides to children with cancer and their families.
During the Child Cancer Foundation’s National Appeal month
in March, Professionals offices around the country hosted
a range of fundraising events for this very worthy cause.
TOP RIGHT: Professionals Morrinsville Real Estate Ltd - funrazor event.
It’s great to see the locals having their heads shaved in support of child cancer.
RIGHT: Liz Thomas (left) with Ebbany Biddle-Bateson, showcasing Ebbany’s artwork
‘Summer Parfum’ for auction. Professionals Real Estate Partnerships Ltd, Whakatane.
BOTTOM RIGHT: Professionals Hutt City Ltd, Lower Hutt, hosted a fun-filled
Quiz Night and Auction.
BELOW: Professionals McDowell Real Estate Ltd in Rotorua held a Breakfast and
Auction event. Dillon Tillemans - with his artwork ‘Off Fishing’ up for auction.
Child Cancer Foundation • Sharing
17
*
REGIO NA L
NEWS
*
R E G ION A L
NEWS
*
REGIO NA L
Regional News
NORTHLAND - We have had a busy time at our branch.
In June a number of mums came to my house for a morning of
jewellery making. Some items will be for the parents, and hopefully
the rest can be sold. We have done this in previous years and a lot of
fun and beautiful items have come about. In July we took a bus full
of Child Cancer Foundation members down to Waiwera for a funfilled-day. As usual, the bus and fuel were donated by Athol Cave
of Caves Buses - many thanks to him as always, and the wonderful
Gene Netzler who gave up a day to drive the bus for free.
We have started up a coffee morning for parents which is planned
to happen four times a year. Anyone interested in attending, please
ring or text Abi on 021 856 451.
We have had two new members on our committee which is
wonderful. If anyone else is interested, please give me a call
or text on 021 044 4613. We have one meeting a month, usually
short and sweet, and would love some fresh ideas and input.
A reminder to all families to inquire with Abi about the
scholarships we have to offer.
Lastly - one of our members has been chosen for a trip
to Disneyland thanks to Koru Care, in October. Wonderful!
Louise O’Hagan, Northland Branch Chairperson
Eric Bettridge’s Generous Work Acknowledged
The backbone of the
Child Cancer Foundation’s
Northland branch, Eric
Bettridge, received much
deserved recognition of his
dedication when he was
awarded a Child Cancer
Distinguished Service Award
in July. Eric puts in many hours
to assist the Child Cancer
Foundation.
“Every year he puts his
hand up to organise
Rememberance Day, National
Appeal and our annual garage
sale,” says CCF Northland
Branch Chairperson Louise
O’Hagan. “Eric is one of life’s
givers and has been responsible for a lot of the money collected for
CCF in Northland during his lengthy involvement.”
“Eric is irreplaceable and it is wonderful to be able to show him how
much we appreciate him,” she says.
Due to recent ill health, Eric has been forced to take a step back
from the Child Cancer Foundation but is keen to still be involved and
is determined to hold the Foundation’s annual garage sale in August.
NEWS
*
REGIO NA L
NEWS
*
REGION AL
N EWS
Tracey showed them around, explained some of what happens there
and answered any questions they had. The afternoon ended back at
the Family Place for yummy afternoon tea. We are hoping to provide
more events in the future, so please let your grandparents know.
Thanks to the parents and caregivers who made an effort to come
out in the cold for our Roast Meal and Movie Night. We are looking
forward to the next movie night when we can get outside and look
around at the buildings.
We also had a Mum’s dinner in July and our Annual Zoo day.
Remember that we have a Facebook page (Child Cancer Foundation
Auckland). It can be a little tricky to find as it is a closed group, but
you can always email me for the link.
I hope the winter bugs are staying away and Spring is just around
the corner.
Christine Steel, Auckland Branch Chairperson
Out-of-Town Coffee Group
An out-of-town Coffee Group has been set up for families who have
travelled to Auckland from other centres for treatment. It is held
on the last Friday of the month at the Auckland Family Place from
10:30 until 12:30. Below is a photo of one our recent gatherings.
All out-of-town families are welcome. This new group gives a
space for families to come together and share experiences or just
have a gossip. The last two catchups have been incredibly well
attended so it would be awesome to make this a regular thing at
the Family Place. It is also a good opportunity for families to come
and see first-hand what services we have here.
Jo Thoresen, Family Support Coordinator
EASTERN BAY OF PLENTY - Eastern Bay of Plenty
had their Regional meeting in Hawkes Bay, on Saturday, the
8th June. We decided to move around the region to enable
branches and staff to meet us all and to host the meeting. It was
a lovely day in Hastings and we got to see the lovely facilities
they have there. Tony Bryan, his wife and her team were great
hosts and we had a lovely morning tea and lunch. We had a full
turnout at the meeting joined by Robyn Cresswell (Waikato,
Lakes and Bays Family Support Manager) and John Robson
(National Board Chairperson).
Eric, who lives in Ruakaka, is well known in the Northland community
for his volunteer service. In 2012 he was named a Local Hero as part
of the Kiwibank New Zealander of the Year Awards. He has also been
named a Knight of the Blind for helping the Royal New Zealand Blind
Foundation. Thanks Eric, the world needs more people like you!
AUCKLAND - Auckland Branch has had a few quiet months,
but hello to all our new members. I am always loathe to say
welcome as none of us wish to belong, but I hope that somewhere
along the way you find some comfort and support from other
parents and families who are walking the same journey as you.
WAIKATO - The Waikato branch has been very busy over the past
few months, and has received some innovative and generous support.
We have had another Grandparents Day. We met at the Family
Place before walking up to Starship for a tour of the 27a Clinic.
Musician Joy Adams has written a song to highlight our Stars
of Courage programme called “Little Star,” which is proving an
18
Sharing • Child Cancer Foundation
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REGIO NA L
NEWS
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R E G ION A L
NEWS
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REGIO NA L
NEWS
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NEWS
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N EWS
extremely popular and useful fundraiser. The Stars of Courage
programme was launched by our late patron Lady Blundell in 2010,
and was one of her great passions. Joy is also raising funds for the
Waikato CCF branch by producing a CD. “For the Children” features
Joy and many notable country and western entertainers. Joy has also
obtained sponsorship from local RSAs and Lions Clubs to buy stars
for our families. We are very grateful to Joy for her unique efforts.
The 28th Ulysses Club Annual Toy Run from Cambridge to Hamilton
was held in March with over 500 motorbikes taking part. We raised
$9,000 along with two truckloads of toys which will be used by
CCF and some other charitable organisations. Many of the Waikato
children were passengers on the bikes from Cambridge to Hamilton.
The Beads of Courage Family Fun Day on April 1 raised $11,564
along with a lot of awareness for CCF. Our sincere thanks to Graham
McFarlane from The Verandah Café & Function Centre for hosting
another fantastic fundraising event.
®
We were also fortunate enough to have a site at the New Zealand
Secondary School Rowing Championships at Lake Karapiro. T-shirts
donated by Eric Murray and Hamish Bond (CCF Ambassadors) were
sold along with photos of our great “Kiwi Pair”. Our sincere thanks
to Eric and Hamish for all their work and dedication.
Nick Hatchett, a coach at NZ Tennis Academy and St Peter’s School,
provided not only a fantastic fundraising event on April 14th but also
great entertainment during his 12 hour Tennis Marathon. The highlight
of the event was a feature match between Nick Guillaume Gignoux
(NZ Tennis Academy Coach) and partner Gerrit Steenkamp (NZ Tennis
Academy Coach), partnered with Ido Drent who played Daniel Potts
on Shortland Street and is currently filming ‘Off Spring’ in Melbourne.
Child Cancer Waikato is very
happy to be associated with
Child Flight. Child Flight offers
a 30 minute flight around the
Waikato and takes in many
fantastic sights. The cost is $250
of which CCF receives $50. The
families who have enjoyed this
experience say it is something really special. Thank you to Child
Flight and our pilots Chris Jordan and Murray Barker.
We were very fortunate to be hosted at
Fieldays again this year by the fantastic
Hansen Products NZ Ltd team. Once
again Hansen provided a magnificent
site with full signage supporting CCF.
Proceeds from the Fieldays sales
are donated to CCF. Carl, Steve and
the team made our volunteers very
welcome, and we really treasure
and value our relationship with this
wonderful company.
Sharon Robertson, Waikato Fundraising
and Business Development Manager
TARANAKI - In February this year Taranaki siblings held their
first camp at Ivy Cottage just outside New Plymouth in perfect
sunny weather. We invited five teenagers, three of them CanTeen
members, to join us for a weekend of fun. Two branch members
and I organised the camp, which was kindly funded by the Taranaki
Branch, including goodie bags, a T-shirt and cap.
After an icebreaker activity we set off for the first activity at Stoney
Oakes Wildlife Park. It is a small and safe park in a rural location
where children can get close to tame animals. There is a lake and
a row boat which proved to be popular with all the children. After
lunch we drove a short distance to the Maize Maze at Egmont
Village and divided into groups to find the 15 clues inside the maze.
The maze is well planned and takes time and effort to complete. After
a little rest and an ice block we drove another short distance to the
New Plymouth Aquatic Centre. The children naturally broke into
groups and the teenagers gravitated towards a group each. It was a
pleasure to watch them. Some personal challenges were achieved at
the diving board thanks to peer support and encouragement.
Fish and chips were served in the park next to the sea. We returned
to our cottage in the country for some singing and music before
bed. The next morning, CJ the clown arrived early to set up his
activities and a bouncy castle for the children. CJ did his magic
show (and the children said they knew how he did it) and made
balloons for them to take home. After a variety of games and yet
more food everyone packed and left for home, promising to meet
again - perhaps for a fishing trip next time.
Kathryn Hensley, Family Support Coordinator, Taranaki
SOUTH CANTERBURY - Award Honours Volunteer
On May 16th, Timaru Mayor Janie Annear presented Child Cancer
Foundation volunteer Jocelyn Torepe with the organisation’s
Distinguished Service Award for her 20 years of service to help
families in need. Jocelyn Torepe knew, when she beat cancer, that
she wanted to give something back to help those still fighting the
battle. And for 20 years the Temuka woman has done just that.
Ms Torepe volunteers her time for the South Canterbury branch
of the Child Cancer Foundation, serving as the branch’s liaison with
the Temuka area. Along with other volunteers, she makes baked
goods and does what she can to support families in need of help.
A professional bus driver, she also drives groups to branch
outings, including the annual CCF Family Christmas party held
in Christchurch.
“It’s not me,” Ms Torepe was quick to say, pointing out CCF’s
work in South Canterbury is a group effort by many volunteers.
She preferred to go about her tasks in the background, she said.
Now Ms Torepe’s efforts have earned her a Distinguished
Service Award, the first such award to be presented to anyone
in South Canterbury. It recognises people in the community
who give outstanding
volunteer support to
CCF. Recipients are
nominated by their
branches and winners
are selected at the
national level.
About ten of the
awards are given out
annually throughout
New Zealand.
Timaru Mayor Jane
Annear called Ms
Torepe “one of our
community’s treasures”.
“She is a very
special person with
a huge heart.”
Child Cancer Foundation • Sharing
19
Huge thanks to all our fantastic sponsors, we couldn’t do it without you!
PLATINUM:
GOLD:
FOUNDATION
PARTNER:
SUPPORT
PARTNERS:
BUSINESS
PARTNERS:
CAUSE RELATED
MARKETING:
ANZ Staff Foundation, Constellation Communities Trust, Community Trust of Mid & South Canterbury,
Charles Rupert Stead Charitable Trust, Eastern and Central Community Trust, Endeavour Community
Foundation, Eric Hattaway Bridgman Trust, Four Winds Foundation, Guardian Trust, Infinity Foundation, Joyce
Fisher Charitable Trust, Kathleen Dorothy Kirkby Charitable Trust, Lion Foundation, Mainland Foundation,
Mt Wellington Foundation, NR Thomson Charitable Trust, Pelorus Trust, Pub Charity, New Zealand Lottery
Grants Board, North and South Trust Limited, NZ Community Trust, RG Bell Charitable Trust, Robinson
Trust – Diana and Andrew Robinson, Sir John Logan Campbell Residuary Estate, Southern Trust, The Trusts
Community Foundation, Trillian Trust, Trust House Foundation, Youthtown Trust.
Every child and their family walking the child cancer journey will never feel alone.
National 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
FACEBOOK ChildCancerFoundationNZ
TWITTER ChildCancerNZ
ISSN 0114-7765
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