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Friday, March 27, 2015

How Warrnambool rallied to support brave Naomi Philpot after brain tumour diagnosis


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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