Pia Whips was sitting by her daughter’s hospital bed this week “hoping for a miracle.”
It’s the only option the mother-of-three has after doctors told her 10-year-old Effie had an incurable, inoperable brain tumor with a “0% survival rate.”
The first sign of something seriously wrong came on Monday, February 6, when the little girl’s eyes flashed from side to side as she told a story to her mom.
Within days, the young man, who lives in Bunbury, Western Australia, had frequent nosebleeds and kept tripping and bumping into things.
Bea took her to the doctors in the hospital emergency department the first night but was told to go home.
She told FEMAIL: “I knew a hundred percent something was wrong, a few days before she had some symptoms, the hat when isolated wasn’t a big deal, but as soon as the eyes happened, I got a few things together.”
A mum has revealed her daughter Effie’s cancer diagnosis came two weeks after she kept falling while camping
She added, “My mind immediately went to her brain – I thought there was something wrong with her brain.”
Earlier in the week, the 10-year-old and her family were camping. I stuttered a bit more than usual and had some headaches which went away with Panadol.
‘She had just had a huge growth spurt so we found out her legs had grown really fast and she would catch up – we all had a few headaches because it was hot so I drank her more water,’ said Pia.
But the mother had a suspicion that Twitching Eyes was more than she seemed, so she took Effie two hours north to Perth Children’s Hospital.
My uninformed mind thought maybe she had some kind of bleeding. Once the eyes happened, she said, I wouldn’t give up until we had an MRI.
Mum-of-three said she was not heard at the local hospital so she took her daughter to Perth – days after she was shocked at a devastating diagnosis that was worse than she had feared
The ten-year-old will begin radiation therapy that could give her another year of life
I thought she had a stroke. Why is there no rush here. I spent over 60 days of phone calls trying to get an MRI, and people said it could take four to eight weeks to wait, so I ended up taking it to Perth.
The doctors spent an hour and a half with Evie before pushing her to an MRI appointment four days later, to help clarify some of their concerns.
“They didn’t think it was an emergency but they wanted to look into it quickly,” Bea said.
Within days, doctors revealed that Evie was seriously ill – and any hope of her becoming well depended on experimental drugs and harsh radiation therapy.
When the doctor called, I could hear in his voice that something was really bad. Then he said “It’s a glioma”. “I broke down, I couldn’t believe this was my life,” Bea said.
The little girl, right, pictured with her dad Josh center and her sister Elsie left, has a terminal brain tumor with a 0 percent survival rate
The doctors told the family to go to the hospital immediately – on the way Pia searched for the unknown word and found out that the disease would be fatal.
“It kind of helped because we weren’t looking for doctors to bail us out at every appointment,” she said.
So when they said they could slow the spread of the “golf ball”-sized “thing” to Effie’s brain with radiation therapy and possibly help her live longer through clinical trials, the family felt some relief.
With radiotherapy alone we can get an extra year. But I’ve spoken to some parents who are going through these clinical trials and their kids are still doing just fine two years later.
The diagnosis comes just as the family is about to purchase a campervan, something they have wanted to do for a while but have been in no position to do so financially.
Her family, who love camping, were about to buy a camper when they got the diagnosis that changed their lives
We thought we’d only have a few more years for Evie to lose interest in this sort of thing. We were looking at pickups and were going to buy one that day, just as the doctor called.
A family friend made a file Go Fund Me To help relieve financial stress while Evie is in the hospital.
Radiotherapy will last for six weeks and although it is not a cure, it may provide some temporary relief. Unfortunately, due to the nature of this tumor, Evie’s health and ability to function will decline and this dreadful cancer will take her from us long before she is due to be born.
Pia and her husband, Josh, Effie’s father, want to spend the rest of their daughter’s life at her side.
Pia and her husband, Josh, Effie’s father, want to spend the rest of their daughter’s life at her side
They’ve been living in a hotel room, so they can stay by her side for the duration of her treatment – with the ten-year-old claiming a miracle has happened and she won’t die.
They plan to use the money from the fundraiser to ease the burden of having no income over the next few weeks or months.
Josh and I have been by her side since the beginning and want to keep her that way for the rest of her time. She said the loss of Josh’s income is the biggest obstacle to being there to create new adventures for herself.
The entire family, including Evie’s little brother Sunny and sister Elsie, will live “in the hospital” for as long as possible.
And although they accept the terrible diagnosis, they don’t lose all hope.
“We’re constantly sending love and light into Evie’s brain and imagining the ‘thing’ falling apart,” she said.
We also repeat “Evie heals” to keep us all positive and focused on the best possible outcome. All we have now is hope for a miracle.
Pia tells FEMAIL that Effie’s positivity has been her fuel.
‘She kept saying, ‘Tell everyone I can’t die from this,’ said the mother.
Evie had some headaches and had been falling out in the weeks leading up to her diagnosis – but when she lost control of her eyes, her parents knew something was really wrong
What is a metastatic pontine glioma?
Diffuse pontine gliomas (DIPGs) are highly aggressive and difficult-to-treat brain tumors that are found at the base of the brain.
They’re gliomas, which means they arise from brain glial tissue — tissue made up of cells that help support and protect neurons in the brain.
These tumors are found in an area of the brain stem called the pons, which controls many of the body’s most vital functions such as breathing, blood pressure, and heart rate.
Symptoms of metastatic internal pontine glioma usually develop very quickly before diagnosis, reflecting the rapid growth of these tumors.
Most patients begin to experience symptoms less than three months – and often less than three weeks – before diagnosis.
The most common symptoms include: rapid development of problems controlling eye movements, facial expressions, speech, and chewing, swallowing impairment in the arms and legs, and problems with walking and coordination.
source: Children’s Hospital
Nor does she want to leave her parents’ side as they discover together the world of cancer treatments.
Bea wants doctors to “really hear” the parents’ concerns and says she’s tired of being told some symptoms are irrelevant because they don’t align with their preconceived notions.
You can have ten symptoms but they will only choose the five that match what they want it to be. They say it’s a virus and go home. Listen up parents, it sounds cliche but we know kids,” she exasperated.
She added that if she had agreed to wait eight weeks for an MRI, her daughter might not have been alive to go through with it.
What is the diagnostic timeline?
First week of February:
The family was camping, and Evie had just had a growth spurt and was ‘fading’ and was also having some headaches, but her parents weren’t worried because it was hot.
Monday, February 6:
Effie’s mother Bea noticed that Effie’s eyes were making erratic movements, blinking left to right constantly without Effie controlling it.
I took her to the hospital where she waited six hours and the doctors dismissed her, though she temporarily lost some of her sight in that time.
Tuesday, February 7:
Bea spoke to her family doctor, who gave her a referral for an MRI.
February 8th and February 9th:
Bea called more than 60 doctors and imaging clinics and was told she could wait up to eight weeks for the scan.
Bea took Ivy to Perth Children’s Hospital where she was seen by doctors, who ordered an MRI for the following Monday.
The family went camping shopping in Perth, to add excitement to a spooky day: then Effie checked her out.
The doctors called with the news and told Bea, Evie, and Josh to come to the hospital.
She was told she had diffuse pontine glioma (DIPG).
February 15th onwards:
Bea says she was thrilled with the doctors and nurses because she believes they are doing everything they can for her daughter. Effie will soon start radiation therapy and clinical trials are being considered.
Radiotherapy can extend her life by 12 months.