WHAT does a paramedic do when taking an unwell toddler and
his mother to hospital leaves a five-year-old daughter at home alone?
He calls his
wife at midnight and asks her to come to the stranger’s house to administer
precious medication to the girl, who also happens to be battling a brain
tumour. By doing so, he prevents her being hospitalised as well.
What do two
eight-year-olds put on their birthday wish list when they see their siblings’
kindergarten classmate in the playground with a nasal gastric tube?
They ask for
money to give to a family that, even at their tender age, they recognise could
do more with their birthday riches than a desire for Frozen dolls or Lego sets.
What does
the local hospital do when it learns administering a high dose of chemotherapy
to a girl — the first such use of this drug in the town — would stop her family
having to permanently move to Melbourne, and instead make the three-hour trip
once a month?
They make it
happen. Welcome to Warrnambool. A windswept rural city at the western end of
the Great Ocean Road where selfless actions such as these are just what you do
when one of your own is in trouble.
With a
population of 34,000, the ’Bool isn’t quite the place where everyone knows
everyone. But it is the type of place where most are only split by one degree
of separation. It’s a place where your teachers most likely taught your
parents. It’s a place where on Saturdays if you don’t surf, you’ll don a
football jumper or netball skirt as your mum cheers from the canteen and your
dad coaches the junior side. It’s a place where the weekend local newspaper’s
classifieds are more up-to-date than Facebook for news on babies, weddings and
funerals.
The
Philpot family had long been among Warrnambool’s generous givers, through
involvement in church, bands and school. Andrew, a music teacher and conductor,
and wife Anna, a paediatric nurse, continued to be heavily involved in the
community even after the birth of their children, James, now 10, Naomi, 5, and
Levi, 4, who was born unexpectedly with Down syndrome.
But that busy,
social, normal life was put on hold in April 2013 when, just as the family was
breathing a sigh of relief after Levi’s seven-week stint in the Royal
Children’s Hospital with life-threatening liver and heart problems, more tragic
news was to come.
Their only
daughter — who proudly introduces herself as “a big sister and little sister”,
the chatterbox who shared the piano stool with her dad to learn to hold her
hands like crabs and dance them across the keys — was diagnosed with a brain
tumour.
Naomi,
then 4, had always been quick to vomit as a child. She seemed to get car sick
more quickly than most and would get sick if she ate too much dinner.
None of these
things raised alarm bells with Naomi’s paediatricians. Why would they? On their
own each symptom was so mild and so easy to explain away as a result of the ups
and downs of childhood.
But in April
that year, the entire family was struck by a bad case of gastro. Andrew, Anna,
James and Levi recovered but Naomi couldn’t seem to shake the bug. The family
was in Melbourne at the time and when Naomi’s extreme sickness continued,
Andrew and Anna took her to the Royal Children’s Hospital.
Initial
tests suggested she was still suffering from the virus and they were sent home.
But after Naomi was sick all night, the Philpots returned and their dehydrated
girl was admitted to the ward.
Her condition
deteriorated and three days later a blood test was ordered. As a paediatrician
watched Naomi walk to the treatment room, he noticed something off about the
way she walked.
He ordered a CAT
scan of her head.
“They
took us into the bad news room,” Andrew says. “There were people in there we
hadn’t seen before, which is always a bad sign. They said, ‘We’ve found out
what’s wrong with Naomi. She’s got a brain tumour.’ They told us the
neurosurgeon was on her way and the surgery was happening right now. In a way I
was relieved that they finally found what was wrong with her.
“I’d have a sore
throat, James would miss school for a day and Levi would be in hospital for
three nights. That was the state he was in physically at that time.
“He was two
years younger. I was thinking, ‘Thank goodness he can’t catch this’, because he
would not last as long as Naomi has.”
During
the surgery, RCH neurosurgeon Wirginia Maixner found a very small tumour and a
very large cyst in the middle of Naomi’s head.
It was diagnosed
as a craniopharyngioma, a rare and slow-growing brain tumour that was pressing
on the optic nerve and blocking flow of cerebral spinal fluid that was
increasing pressure in the brain.
“It was the day
of my 40th birthday,” Andrew recalls. “They drained the cyst and the next day
after the anaesthetic wore off she was completely normal. The transformation
was incredible.
“I said
to the doctors, ‘There are brain tumours and there are brain tumours. What are
we actually talking about here?’ They said if we had to pick a brain tumour,
we’d want this one. They thought it wouldn’t spread anywhere else.”
In late October
2013, Naomi started vomiting again despite the latest three-monthly MRI showing
no change. As Christmas loomed, she continued to get sick and when the Philpots
returned to Melbourne on New Year’s Eve for a party, she was especially flat
and was readmitted to the RCH.
An MRI showed
the tumour had grown 1cm in 10 weeks. Doctors acted swiftly and Naomi had a
shunt put in to take pressure off the brain but a subsequent scan showed the
tumour was bleeding.
Not only did
this call for emergency surgery, it overturned the original diagnosis that this
particular type of tumour didn’t typically behave like this.
After the
surgery to remove the golf ball-sized clot from her brain, Naomi spent 12
nights in intensive care and 40 nights in hospital.
Surgeons planned
to carry out another surgery — her fourth brain surgery — in April last year to
remove more of the tumour and get a proper biopsy.
“They said the
tumour under the microscope looks like low-grade but is behaving like a
high-grade tumour,” Andrew says. “I said to them, ‘If it’s grown so fast, how
do we know it hasn’t spread anywhere else?’
“The doctors
looked at each other and said, ‘We don’t know, because we haven’t looked’.”
It was the week
before Mother’s Day when they looked. They found another five spots on the
brain and one on Naomi’s spine.
“That was when
the world came crashing down for me,” Andrew says. “The previous diagnosis had
been localised. That was when I really lost it.”
That night
Andrew called his boss, King’s College principal Ian McKay, to say he wouldn’t
be at work for the next few months.
And that’s when
Warrnambool’s homegrown hook-up of helping hands immediately kicked in.
Music teachers
from the town’s other secondary colleges stepped in to teach Andrew’s VCE music
students and conduct his bands.
Neighbours
babysat at a whim and, at times, every member of the family slept under five
different roofs as Andrew and Anna did the best they could to ensure each of
their children’s needs were best met.
Both sets of
grandparents have been a never-failing backstop for any need. Siblings in
Melbourne have been quasi-motels during unexpected hospital trips. Dinner
choices have been made light and easy by a freezer filled by the kindness of
friends and strangers.
When Andrew and
Anna decided on chemotherapy instead of the radical option of radiation on
Naomi’s brain and spine, staff at Warrnambool’s South West Healthcare organised
to have three out of every four chemotherapy treatments in the town.
Members from
service clubs answered a call to arms by an interior designer the couple had
employed for style advice on selling their home, which quickly evolved into a
40-person house makeover that saw the Philpots’ home sold this month.
King’s College,
where Naomi was due to start school this year, has worked with the RCH
Education Institute to design a program for her to start prep as planned,
albeit for just a couple of hours a few times a week.
One of Andrew’s
classes won a science competition and snared an iPad as a trophy. The children,
at no suggestion of any adults, sold the device and gave the money to their
teacher’s family.
THE most recent
scan seven weeks ago shows Naomi’s tumour is stable. But it is a day by day,
hour by hour proposition for the family whose little girl is ravaged by disease
— now diagnosed as an astrocytoma — which, even after consulting US
specialists, looks like one thing under the microscope but behaves in a much
more ferocious way in reality.
Naomi’s moods
and health can deteriorate suddenly.
She spent more
than 120 nights in hospital last year, not including outpatient chemotherapy
and specialist appointments from the nine RCH departments that care for her.
The surgery that
triggered the bleed in the brain damaged Naomi’s hypothalamus, the part of the
brain that controls key regulatory processes. This caused her to develop
diabetes insipidus and disrupted her appetite control and sleep cycle. This
means she is wide awake after five hours’ sleep, another source of exhaustion
for the family.
But amid the
daily pain that has left Naomi sensitive to touch and sound, and dampened her
chatty nature, an ultra-sensitive and empathetic girl has been born.
As the local
Salvation Army church held 24/7 revolving prayers for Naomi for a month, it was
Naomi who was praying for others. When her brothers are sick with a cold, Naomi
will pat them for comfort.
“It’s by the
grace of God, but also by the support of people from here in Warrnambool and
our support team in Melbourne that we’re getting through,” Anna says.
“You know how
they say it takes a village to raise a kid? But I reckon it takes a whole
community to support a family through this, because we wouldn’t have survived.”
Strangers step up
A caring network
of strangers from across the entire Warrnambool community has worked tirelessly
to help the Philpot family cope after Naomi’s shock diagnosis
1-5. THE PHILPOT FAMILY
Naomi, 5, Levi,
4, mum Anna, James, 10, dad Andrew
6.
LISA DANIEL
The Design Cupboard interior
designer
Lisa organised a
working bee of 40 people to make over the Philpots’ home for sale. “I’d be
surprised if this would happen in Melbourne. Because of the size of Warrnambool
it’s really a community involvement.”
7. JEANETTE BROOKS
Warrnambool City Council
respite worker
Jeanette helps
Naomi get ready for school twice a week and looks after Levi. “I call Naomi
‘Gorgeous Girl’. She loses concentration quickly so I’ve always got to find
something to keep her mind occupied.”
8. SUE MARSH
South West Healthcare
paediatric unit manager who has overseen Naomi’s chemotherapy in Warrnambool
“How we’ve been
able to manage for Naomi has allowed her to go to school throughout treatment.
It stops the disruption and keeps the family unit together.”
9. LEOMA BELL
Kiwanis International
Leoma gave
Andrew train tickets to Melbourne to visit Naomi on weekends. “You would hope
this amount of giving from all the charitable organisations would happen in the
city.”
10-11. CHARLIE AND SHARRA
McNAUGHTON
Friends
Sharra’s
daughter, Charlie, 5, became friends with Naomi when they were both treated for
brain tumours at the RCH. “The two girls are really good friends. They just
connect. We’ll visit Naomi in hospital and do sewing. But the friendship has
been good for us, too.”
12. KERRY SNOOK
Naomi’s prep teacher at King’s
College
Kerry has worked
with teachers from the RCH on an education plan for Naomi. “It’s taken a team
to get her to school. On the school sports day she walked about 50m holding her
carer’s hand. She said to me with a big smile on her face, ‘I didn’t think I
could run that far’. Moments like that are just magical.”
13. NICK THIES
South West Healthcare
paediatrician who treats Naomi locally to save travelling to Melbourne
“There’s a great
community spirit here. Being a small regional town, you get that involved with
a lot of people because a lot of people know each other. There are great
networks here. Andrew’s father was a GP in town and I play in the orchestra
with Andrew.”
14. CATHERINE HALDANE
Very Special Kids family
support clinician
Catherine sits
with Naomi during treatment and supports Anna and James with counselling. “The
family are just doing a beautiful job themselves. They’re very strong and
incredible, and I don’t think they’re reminded of that enough.”
15. JESSELYNN TANNER
Aunt of Charlie McNaughton
Jesselynn walked
from Geelong to Warrnambool over three days to raise money for childhood brain
cancer research. “A lot of people don’t know brain tumours are the No. 1
killers of children’s cancers.”
16. TANYA TAMPION
Salvation Army Children’s
Ministry co-ordinator
Tanya organised
24/7 prayers for a month for Naomi and a collection for the Philpots. She
visits Naomi in hospital to do craft. “She’s a special girl, a very loving and
gentle girl, very giving. When I come here she tells me she’s been praying for
other people.”
17. MALCOLM MACPHERSON
Warrnambool Rotary Club
Malcolm spent 70
hours painting the exterior of the Philpots’ house with fellow club members.
“Why for this family? Because we could. We didn’t know who we were doing it
for, we just did it because we considered it something we could help with.”
18. SUSAN HURLEY
Naomi’s preschool teacher at
King’s College
“I wish for her
perfect health. But in among that, we just want her to know that she’s loved
and valued. And that she can achieve what she wants to achieve regardless of
her circumstances.”
19. FRANCIS BROEKMAN
Rotary Club of Warrnambool
Central president
Francis led 10
club members to help with cleaning, painting and repair works on the family
house. “It’s a country thing. That’s why we’re all part of it.”
20. CHARLES BLIGHT
Painted inside the Philpots’
home before it went on the market
“Our kids go to
school together and I know them from church. It’s been very good how many
people have helped. It’s not surprising, but anyone you ask to help is more
than happy to get involved.”
21. TREVOR FRASER
Warrnambool Lions Club
president
Trevor painted
the Philpots’ back bungalow and assisted in the house makeover with club
members.
22. ANDREW CHOW
From the Leila Rose Foundation,
which supports families with rare childhood cancers
Andrew brought
Naomi orthopedic shoes so she could walk without pain, helped the family with
utility bills, connected them to other charities and shared advice after the
Chows lost their 21-month-old daughter to a rare tumour in 2010. “The
Warrnambool community is very caring, community-minded and generous.”
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