The family of a Creswick baby in the fight for her life against a rare aggressive brain tumour hope treatment in the US will give their daughter the best chance of a long life.
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Zarliah Laidlaw was diagnosed with the AT/RT tumour in April, aged just five months old, when mum Tioni took her to Ballarat Base Hospital after she had been vomiting for days.
Now, following surgery to remove the tumour and three months into a planned six month course of chemotherapy at the Royal Children's Hospital, doctors have advised that Zarliah will need radiation therapy to stop the tumour from returning.
But the radiotherapy offered in Australia is not suitable for such a young baby whose brain has not fully developed.
![Jake, Tioni, Mason and Zarliah Laidlaw hope to travel together to Florida where Zarliah, eight months, will receive radiation therapy for a rare and aggressive brain tumour. Picture supplied Jake, Tioni, Mason and Zarliah Laidlaw hope to travel together to Florida where Zarliah, eight months, will receive radiation therapy for a rare and aggressive brain tumour. Picture supplied](/images/transform/v1/crop/frm/michelle.smith/148d4348-4b2f-4dba-bc3e-06533d13f2af.png/r0_186_1178_1368_w1200_h678_fmax.jpg)
Instead she will need about two months of treatment at the University of Florida Health Proton Therapy Institute where a form of radiotherapy safer for babies is offered.
"There are lots of different types of radiation therapy but the options available to us are photon therapy and proton therapy," Ms Laidlaw said.
"Photon therapy is more readily available in Australia but they use x-ray which would end up affecting a larger portion of Zarliah's brain and causing brain damage.
"The proton therapy is more targeted and narrowed to just target the area where the tumour is. It does have a small impact outside the target area but hopefully only minimal."
The proton therapy would be five days a week for six to eight weeks, but Zarliah will have to be asleep for each treatment.
![Despite the aggressive brain tumour she is being treated for, Zarliah is a happy "chilled" baby according to mum Tioni Laidlaw. Picture supplied Despite the aggressive brain tumour she is being treated for, Zarliah is a happy "chilled" baby according to mum Tioni Laidlaw. Picture supplied](/images/transform/v1/crop/frm/michelle.smith/17791f1f-cbcf-43ae-a6c2-00af24ef9008.png/r0_0_1179_1572_w1200_h678_fmax.jpg)
They could wait until Zarliah is slightly older to do the radiation therapy, but with the type of rare brain tumour she has, the most likely time for the tumour to come back is the first 18 months after treatment.
"If we are going to do it, we need to do it now," Ms Laidlaw said.
The family have applied to the federal government for funding under the Medical Treatment Overseas Program which would pay for the treatment, flights and accommodation for the patient and one parent.
But it does not cover daily expenses such as food, travel, car hire nor does it fund a second parent or siblings to go.
While waiting to hear about the funding, the family have set up a Go Fund Me page so the family including dad Jake and brother Mason, 2, can travel to Florida together.
"I do not want to go through it on my own," Ms Laidlaw said.
"It's a long time and we've already spent so much time apart, and it's a long time to be away from Mason.
"The challenge is we don't know what the treatment is going to look like and I'll definitely need that support."
And often it's Mason who is best able to comfort his baby sister when she's upset.
"She is normally a very happy baby, very chilled ... and absolutely adores her big brother Mason. Any time she's upset we bring him in," Ms Laidlaw said.
"It's been a very big adjustment for him too, having to work through the change with us not being at home, having mum and Zarliah living in the hospital, and travelling back and forward from Creswick to Melbourne depending on what's happening."
As a self-employed carpenter, Mr Laidlaw has been trying to juggle work, a toddler and time at the hospital and has already taken a significant amount of time off work this year and faces another two months for the trip to the US, causing financial stress for the family.
"You don't work, you don't get paid," Ms Laidlaw said.
"He's been trying to keep things ticking along since this happened."
![Jake, Mason, Zarliah and Tioni Laidlaw at the Royal Children's Hospital where Zarliah is being treated for a brain tumour. Picture supplied Jake, Mason, Zarliah and Tioni Laidlaw at the Royal Children's Hospital where Zarliah is being treated for a brain tumour. Picture supplied](/images/transform/v1/crop/frm/michelle.smith/3efbb2a3-f064-425e-b5b7-126c0e0b1d04.png/r0_0_1179_1572_w1200_h678_fmax.jpg)
Mr Laidlaw had planned to work this week but Zarliah was unexpectedly discharged to complete this round of chemotherapy as an outpatient and they are staying with friends in Melbourne.
To have the family together it meant dropping his planned work to help in Melbourne.
Her first three months of chemotherapy have been light, which Zarliah has tolerated well, but her next three are going to be high dose and knock her around more.
Her next three chemotherapy rounds will be stem cell supported, where Zarliah's own stem cells are given to her via transfusion when her body is not making its own.
Once that is finished and Zarliah recovers enough to fly overseas, they hope to travel to Florida in late October or early November.
The family's nightmare began in April when Ms Laidlaw thought five month old Zarliah had a regular childhood illness.
"I thought we'd go to emergency, get a fluid top up but never expected we would end up here," she said.
"Her brother had a cold, so I thought maybe she had just got that, but she had been vomiting for three or four days and was just not right.
"After five days in hospital they still couldn't figure out what was going on. She tested positive to rhinovirus but kept getting worse and that didn't explain what was going on."
Doctors at Ballarat Base Hospital were in touch with the Royal Children's Hospital whose clinicians got them to do a brain scan on the sick infant.
![Zarliah sleeps after undergoing surgery to remove a brain tumour at the Royal Children's Hospital. Picture supplied Zarliah sleeps after undergoing surgery to remove a brain tumour at the Royal Children's Hospital. Picture supplied](/images/transform/v1/crop/frm/michelle.smith/0b2e89b3-c75e-4163-b84b-041e57f24b5f.png/r0_0_1179_1572_w1200_h678_fmax.jpg)
"The next minute they were sending the road transport team to collect us," Ms Laidlaw said.
"They were amazed she got down here without any oxygen, and within half an hour of us being at the Royal Children's she was having emergency surgery to relieve the pressure in her brain."
The scan had revealed a tumour blocking Zarliah's brain stem, meaning fluid was not able to drain naturally and the pressure was building inside her brain.
"It was all a bit of a whirlwind," she said.
At the time of diagnosis, Zarliah's parents were told she had a one in three chance of survival if everything went to plan, but complications might cause her to not be able to complete treatment.
Surgeons operated to remove about two thirds of the tumour, as much as they could safely manage, before the little girl started chemotherapy - but within days an emergency MRI showed the tumour was growing rapidly and with a large bleed was now bigger than the original size.
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The pressure on her brain stem and nerves caused complications with her breathing, heart rate, facial functions, swallowing and eye movements and her parents were warned she might die unless the chemotherapy started to work in time.
"They didn't expect the chemo to shrink the tumour but hoped that it might change the texture of the tumour, making it easier to operate on a second time," she said.
But Zarliah needed to survive for two weeks.
A scan before her second surgery showed the tumour had shrunk back to about 20 per cent of its original size, surprising doctors who ordered a second round of chemotherapy before operating which allowed them to remove the whole mass.
"They are so impressed with how she is responding to treatment so far that they feel with the radiation therapy she has a good chance of achieving a 'complete cure', with minimal long term damage/side effects," she said.
The Go Fund Me page can be found here.
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