October Newsletter 2014 - Childhood Cancer Support

September
2014
Welcome…
To our special
Halloween edition
Pg. 1- 2
Pg. 3 – 6
An Important Message from
the GM
A Freaky Friday with CCS | A
Shaved Head for CCS |
Creative Art for Wellbeing 3Day Workshop | NAB Bikes for
CCS | CCS Christmas Appeal
Pg. 7 – 8
Pg. 9 - 10
CCS Family Christmas Party |
Meet our New Staff Member |
CCS Gets in with Grill’d
Free Photography Sessions for
CCS | Gregory Terrace Boys
Get Cleaning | Growin’ &
Shavin’ for CCS | CCS is
Launching a New Website
It’s been another busy month for all of us at CCS, but
one issue has taken priority – transport for Herston
based families to the new Lady Cilento Children’s
hospital. I would like you to take a few minutes to read
the information below, as this situation will affect you
and your family over the next two years.
As most of you would be aware, Children’s Health Qld (CHQ)
has always promised that transport would be available to
ensure families had access the new hospital across town.
Unfortunately it became clear a few months ago at a
stakeholders’ meeting that no planning for this had been
undertaken. As a result, in September we commenced
discussions with CHQ about the possibility of CCS providing a
transport service funded by CHQ to meet the needs of all
families from all accommodation services. CHQ provided a
scope document which required bus services to run 6AM to
10PM 7 days a week with greatest demand during week days.
The combined service population from RMCD, Leonard Lodge
and CCS is between 60 and 90 families – 25% of these are
oncology families, of which 80% have an average duration of
stay of 100 days. Apart from transport of patients and carers,
the bus service was also supposed to do school bus runs to
the new hospital school, airport and rail station transfers,
shopping runs and transport medical staff between the RCH
and the QCH. The buses had to have wheel chair facilities and
all disease sectors were to be serviced.
CCS responded to this request with a three bus proposal.
Importantly, one of those buses was to have a wheelchair
facility and to be reserved for immune suppressed patient use.
The other bus was to have wheelchair facility and would
service other disease groups where cross infection was not of
concern. These two buses would run 7 days per week. The
third bus was to be a larger capacity bus that would service
patients and families who did not have constraints on
the transport type. The service would have produced a
timetable where a bus left Herston for the QCH every 30 to
45 minutes. In effect, each bus would operate on a continuous
loop of approximately 100 minutes duration. The buses were to
be fitted with full vehicle monitoring systems and a token based
ticketing system was to be installed.
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The cost per bus ranged from $41/hr to $60/hr depending on
whether it was running after hours or on weekends. Lastly, CCS
proposed that all up front capital contribution would be
provided by CCS.There were no start-up costs for CHQ.
The proposal included a review of demand and utilisation after 6
months to make sure that value for money was being achieved.
CHQ rejected that proposal (and a second CCS proposal for a
two bus service) and responded with a proposal to fund one bus
to service Leonard Lodge and RMCD families only – to date
they have not proposed to fund any transport to support the
CCS oncology families.
CHQ’s reasons for rejecting the second offer in writing was on
the grounds that the Health Department already supported
patient transport via the existing Patient Travel Subsidy Scheme –
which in fact provides transport from the regions to Brisbane
and not within Brisbane itself.
Since then, CHQ has confirmed that they are actively working
with Ronald McDonald House and Leonard Lodge to deliver a
transport service. To date, CHQ has not responded to our
questions as to whether CCS families and oncology families in
general will be able to access this service.
We would like to assure all CCS families that CCS will continue
to support oncology families to ensure that their access to
medical services is not affected by this decision of CHQ.
To listen to a recent ABC radio interview with myself
and Dr Peter Steer, CEO of the QCH, go to:
http://mobile.abc.net.au/news/2014-10-31/rural-qldpodcast-311014/5857876
We encourage all CCS and oncology families to get behind this
issue and speak with your local member to highlight the inequity
of this decision.
More information will be provided to you as it comes to hand.
Kind Regards
2
CCS absolutely LOVES Halloween! How could we not, with
all those spooky decorations, crazy dress ups and - lets not
forget - all that candy!
November
4
1417
Melbourne Cup
Day
G20 Weekend
21
CCS Website
Launch
26
Essence of Time
Family Photoshoot
28
Friday Family
BBQ
December
4
School Holidays
6
CCS Christmas
Party
17
Essence of Time
Family Photoshoot
25
Christmas Day
Ongoing
Wednesday: Coffee Cake
& Chat every Wednesday
As we do at the end of every
month, CCS held it’s Family Friday
night BBQ… but this month, it
accompanied a spooky twist!
CCS’ Halloween party has always
been a hit with all families, and this
year was no exception. In the
morning, our Community Room was
a hive of activity as many of our
CCS and other oncology families
joined in to carve up some
pumpkins. Orange innards splattered
the floor, children’s hands were
tinged with yellow, and seeds
scattered the tables and chairs… but
the results were well worth it.
(Special thanks goes to Sue Rigato
who generously donated the 12
unfortunate pumpkins for our
carving escapades!)
Later that afternoon, the kids
embarked on some trick or treating
fun
around
the
units
and
surrounding
neighbourhood
–
thankyou to all who participated!
As more people started arriving for
the dinner, our carved-out pumpkins
started lighting up with candles,
emitting a spooky glow amongst the
few dozen party goers dressed in
terrifying attire. We had Freddie
Kruger, Nikki Minaj, ghosts, witches,
Morticia, vampires, Princess Elsa,
Spider(men), skeletons, evil clowns,
and even Julius Caesar! What a
guest list, right?
We congratulated Tama, who won
the pumpkin carving competition,
and the winner of the CCS raffle
organised by Sarah Hyndman was
drawn – congratulations to the lucky
Logan Hospital staff member!
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A special thankyou to Sarah as well
for raising an impressive $460 with
her raffle competition; we are
always so humbled by the amount
of local and regional support we
receive from past and present CCS
families!
All in all, it wasn’t really that much
of a “freaky” night, but it was
definitely
fun.
Thankyou
to
everyone who joined us last Friday,
and we look forward to seeing you
again next year!
Andrea Bowkett from Dalby were first introduced
to Childhood Cancer Support (CCS) not long
after her son Scott was diagnosed with
osteosarcoma (bone cancer) in January 2013.
“She’s excited to shave it all off!” Andrea says.
“She likes her hair short, and already is always
covering it up with beanies and hats. Not what
you’d expect from a 10-year-old!”
“Our world collapsed”, Andrea Bowkett explains.
“Not only was my son fighting for his life, but we
had no place to stay and my girls were back home.
We needed to be together… we lost our home
and our pets. I had to quit work so it was a real
financial struggle… What a godsend CCS turned
out to be for our family”.
We couldn’t agree more, Andrea! Lilly Bowkett
is truly one inspirational young lady.
Scott Doyle tragically lost his battle with cancer in
March this year. Despite their loss, however, the
Bowkett family have refused to stop moving
forward, supporting CCS and spreading awareness
about childhood cancer whenever they can. This
year, Andrea’s daughter Lilly Bowkett will be
shaving her head on the last day of school as part
of a fundraiser for CCS.
“I’m still working things out with the school (East
Ipswich State School), but we’re looking at holding
a lunchtime disco and free dress day as part of the
fundraiser,” Andrea tells us. When asked if her 10year-old daughter is anxious about getting rid of all
her hair, Andrea laughs.
Andrea and her family are additionally organising
a separate fundraiser (again, for CCS) in
celebration of Scott’s 16th birthday. The
Toowoomba Ride event will be held on the 7th
of December, departing from Goodna and Dalby
at approximately 11am.
If you want to find out more about the
Bowkett’s story, or any of their fundraising
events, check out the Facebook page Chemo can’t
keep
Scott
down:
https://www.facebook.com/ChemoCantKe
epScottDown?fref=ts
To donate to CCS today in support of Andrea
and Lilly’s fundraising endeavours, go to
www.ccs.org.au.
Lilly Bowkett and her brother Scott, who passed away in
March (2014).
It’s rare to see Lilly without a smile!
4
A message from CAWB Art Therapist Tania Budd…
“Coinciding with September as Childhood Cancer Awareness month, we decided "GOING
GOLD" to be an appropriate title for our three day Creative Art for Wellbeing Program workshop
over the school holidays. The workshop was held in the spacious and colourful rooms of the
Royal Children's Hospital School, setting a good tone to get creative over the next few days.
The children got to experience freedom of expression through the act of creativity as they
chose from a multitude of exciting and inspiring colourful mixed mediums & art materials. As
always, it was both fun and motivating to watch as they let their creativity, imaginations and busy
fingers run free.
For the children, the artwork became a method of communication and of expression where through the process of making a meaningful & tangible piece of art - they learnt to talk about
how they feel.This all-inclusive, non-judgemental form of creative, therapeutic support provides a
path to wellbeing for the young patients and their siblings to feel better emotionally, socially and
physically.
I observe how children get to create their own world, be in the moment - and gain a sense of
their active and fullest participation in the creation of their life experience... that is what really
matters".
- Tania Budd, Creative Art for Wellbeing program Art Therapist
5
Towards the end of October, CCS had the pleasure of
receiving four children’s bikes from the NAB small Business
QLD team which were made from scratch as a part of a team
building activity.
The NAB team graciously donated these bikes to CCS, and will
be used as part of our 2015 “40th Anniversary” fundraising.
Special thankyou to NAB and the Small Business QLD Team
for their continued support of CCS, and the time and effort
they put in to make these bikes look great!
Each year, CCS holds a special Christmas party for
past and present residents and other oncology families
in December. For most, Christmas is a time of year to
get excited about, to spend time with the people we
love, and enjoy the gift of giving. For many oncology
families, however, Christmas can be a struggle. Cancer
has a tendency to keep families apart, and take its toll
on financial stability, regardless of the time of year.
It is for this reason that CCS is passionate about
ensuring that every child dealing with cancer doesn’t
forget there is a life to be lived and enjoyed. This year,
CCS is advertising to supporters the opportunity to
donate to our Christmas Appeal.
By donating just $25, you ensure that an oncology
family’s child gets a special Christmas present from
Santa himself. Please help us put some smiles on little
faces – it makes a world of difference.
Donate today by following the link:
https://www.goodcompany.com.au/charity/
Childhood-Cancer-Support/ChristmasGift-from-Santa
6
Invites all oncology families to its
annual Christmas Party!
WHEN: Saturday 6th December, 10:00am
WHERE: Vic Lucas Park, Bulimba 4171
WHAT’S ON:
Joyrides along the river, courtesy of the Water Police
Face painting
Christmas gifts!
BBQ Lunch and snacks
A Clown and Magic Show presented by Peebo & Dagwood Clowns
Jumping Castle
A special visit from Santa Claus himself!
Plus piñata games, fairy floss, slushies, popcorn and loads more!
All oncology families are welcome. This is a free event.
We’d love to see you there!
RSVP is a must so that Santa can organise how many gifts
he needs! Please contact the CCS Office on (07) 3252 4719
or email info@ccs.org.au before the 17th of November.
8
CCS welcomes to the team Rona Claffey, our newly appointed
Fundraising & Events Manager…
Rona has been involved with CCS in varying capacity
over the past 3 years, having been introduced to the
organisation when a friend from Cairns stayed with us
in 2011.
Professionally, Rona has worked in the Banking &
Finance Industry over the past 20 years, both in
Australia and overseas. With extensive experience in
Business Banking, Resourcing & Learning, Event
Management and Disability Recruitment, Rona brings a
unique and diverse set of skills and resources to the
table. We are all very excited to see what 2015 (and
our 40th Anniversary) brings with Rona’s guidance.
As an explanation for her charm and wisdom, Rona is
well travelled, having lived in many areas of
Queensland, both regional and metro, as well as
abroad in Canada and the UK.
A proud mum to a very active 4 year old daughter,
Rona enjoys travelling, cooking, browsing antique
shops & second hand stores and spending time with
family and friends. Like many of us here at CCS, Rona
is also a self-confessed chocoholic.
Throughout November, Childhood Cancer
Support (CCS) will be appearing on a
Local Matters jar at Grill’d at South Bank!
So when you find yourself enjoying one of
their delicious burgers this month, make
sure you drop your bottle cap in the CCS
Jar!
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Living in an unfamiliar city for an uncertain period of time,
when your child’s recently been diagnosed with cancer, is
not an ideal situation for anyone. It can be hard to find a
“home away from home”, and building close support
networks within your immediate vicinity can take time.
That’s why CCS has teamed up with generous supporter
Andy Graves from Essence of Time Photography, who has
put together a photography program for both CCS
families and non-families from regional areas who have
children with cancer.
Professional photography can be beneficial in numerous
ways, from allowing families to decorate their temporary
lodgings with some beautiful family shots, to enjoying the
therapeutic process of photography itself. Andy himself
will be coming in to CCS to take relaxed, natural family
photos as a free service to families once a month. For
November and December, Andy will be coming in on:
November Wednesday 26th and
December Wednesday 17th
If you’re interested in utilising Andy’s services, please
contact the CCS reception and secure a spot on 07
3252 4719 or email info@ccs.org.au.
To see more work by the Essence of Time
Photography, go to wwww.essenceoftime.com.au
As part of a working bee, CCS families got spoilt
with sparkling clean cars and a fresh coat of paint in
the Community Room bathrooms…
The St Joseph’s Gregory Terrace boys from Buckley House
paid a generous visit to CCS this October, helping families
out by cleaning their cars all the way to a dazzling shine!
The guys also provided us with a fresh coat of paint on the
Community Room bathrooms – a job that desperately
needed doing!
On behalf of all the families and staff at CCS, we say a
heartfelt thankyou to these lovely lads for putting a smile on
the faces of our family members! We hope you enjoyed the
day off school, too!
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CCS loves to see its supporters
coming up with unusual or
challenging fundraising ideas –
and
Alan
Jonhson
from
Stanthorpe is no exception.
“After attending this year’s Camp
Crystal, I decided that there was
a great need to help CCS in the
fantastic work they do,” Alan
explains. “I had heard about the
support that CCS provided
throughout Faith’s treatment.
However, when I attended the
camp, I saw that it was so much
more
than
I
previously
understood.”
Over the next 6 months, Alan
will continue to grow his beard
and facial hair as a part of a
fundraising campaign to raise
money for CCS.
“He started growing it after this
year’s Camp Crystal,” his fiancé
Reniet told CCS. “I know he was
hoping to raise $5,000, but he
really just wants to raise as much
as possible.”
Alan says he’s always been one to
lend a helping hand. “If I can raise
money to help CCS by being
simply too lazy to shave or get a
haircut, then that’s the least I can
do!” he adds.
Reniet informed CCS that she and
Alan have decided to get married
on the 15th of March, a month
before the 2015 Camp Crystal,
where Alan’s glorious beard will
finally be fare welled and shaved
off. “We want the “epic” beard to
be part of the wedding”, Reniet
tells us.
While CCS cannot wait to see this
“epic” beard, the team is once
again incredibly humbled by the
generosity and giving nature of so
many of its supporters. Thankyou
Alan and Reniet for not only
helping to spread the word about
CCS, but raising funds to help us
help families.
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A photo of Alan at CCS’ annual
AGM – about halfway through the
“growing process”.
Childhood Cancer Support is a not-for profit
organisation that provides no-cost accommodation to
families who have children diagnosed with cancer.
We give families a place to live that looks and feels like home; we'll
drive them to and from appointments, shopping outings and the
airport; we provide them with a community that cares, because
we're all fighting the same battle together.
To find out more about CCS, make a donation or get
involved in what we do, check out the following
links.
Make a
Donation
Volunteer
www.ccs.org.au
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Contact
Us