‘Zarli Girl’- Zarliah’s Fight Against Brain Cancer
Donation protected
If you don’t know us already, our names are Jake & Tioni, along with our two little people, Mason (born January 2021) and Zarliah (born October 2022). We call the beautiful town of Creswick, in regional Victoria, home.
In April 2023, at just 5.5 months old, after a couple of weeks of severe unexplained vomiting, Zarliah was diagnosed with a rare aggressive brain tumour called AT/RT. Our world was turned upside down as we tried to come to terms with her diagnosis and started what would be a long emotional journey, living away from home and navigating our way through the challenges of the harsh treatment Zarli would receive.
At the time of diagnosis, we were told that Zarli had a 1 in 3 chance of survival. That was if everything went to plan, with no complications that might cause her not to be able to complete any stages of her treatment plan, in which case, the prognosis would be much worse. After a massive surgery, where they were able to remove about 2/3rds of the tumour, we started her first round of chemotherapy.
But only a few days later she needed an emergency MRI because her overall state was declining. The MRI showed the tumour was continuing to grow rapidly, and with a large bleed it was now a mass larger than its original size. The pressure in her brain was building up again, pushing on her brainstem and nerves, which control things like, breathing, heart rate, facial functions, swallowing and eye movements, all of which Zarli was showing symptoms of in varying degrees.
We were told to prepare for the worst, that there was a very real possibility that our baby girl wouldn’t make it to the end of the week. There was nothing else to be done other than ‘hope’ that the chemo works in time, but our medical team weren’t very optimistic. 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. Zarli needed to hold on and get to the second surgery date just over two weeks away. Our medical team literally said ‘it’s in the hands of the gods’.
They didn’t know that the God we serve was already working on Zarli’s life and there were hundreds of people praying for Zarli. Even so, this is news that no parent wants to hear. We had to fully trust God with our baby girl, she was in His hands… either way.
Just over 2 weeks later, she was still here and actually slowly improving. We had another scan which showed an unbelievable shrinkage of the tumour - back to about 20% of its original size. Our doctors were shocked and actually had to check they were reading the correct scans. God was working miracles in Zarli but also in us, during that time He had brought us from a place of just ‘trusting’ to ‘believing’. Even before receiving this news, we had a quiet confidence and peace that the scans were going to show amazing things!
The tumour had responded so well, our team decided another round of chemo would be beneficial before surgery. Again, it responded much better than expected, providing good opportunity to operate, and aim to get all of it! Our surgeon, who is one of the best paediatric neurosurgeons in Australia, is confident that they were able to achieve total resection.
Operating so close to the brainstem and lots of important neurological pathways, meant there were a lot of risks during both surgeries. Risks that could cause permanent damage to a lot of basic functions, but at this stage there appears to be no long term affects.
This brings us to current day. We mentioned the treatment plan, this consists of surgery to remove the bulk of the tumour, 6 rounds of chemotherapy, of which we are nearly halfway through, and then once she is over 1 year old, radiation therapy. Typical radiation therapy is not generally used in babies as it would do more harm to her brain, leaving her with permanent damage. There is a different kind of ‘targeted’ radiation therapy called proton therapy that our medical team are recommending for Zarli - this, however, is only available in America.
Our team are wanting to send us there to complete Zarli’s treatment. 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.
The Australian government has a funding program where they fund the treatment, flights and accommodation for the patient and one parent. We are currently in the process of applying for this, with the help of our medical team.
They don’t fund daily expenses such as food, travel, car hire etc. They also don’t provide funding for the second parent or siblings to go. Since the treatment will be over a period of 2 months we would ideally love to go as a whole family. Being self-employed, Jake has already taken a significant amount of time off work this year and with a trip to America in the near future, the time off work is only going to increase.
This is where you come in! Asking for help is not something we take lightly. We have been blown away by people’s generosity and support throughout this journey and feel incredibly blessed and supported. If you feel like you want to be part of Zarli’s journey in this way and could help by donating, even just a small amount, we would really appreciate your help so we can tackle this next phase of the journey together.
Money raised will first and foremost go towards; flights/travel insurance for Jake and Mason, daily expenses in the US, like food, car/transport, as well as ongoing life expenses at home that continue to roll in regardless of if you are in the country or not. If funds raised exceed what is needed for the trip, they will be used for daily expenses, possibly allowing Jake some freedom to work less and be able to spend longer periods in Melbourne during the remainder of her treatment, especially at times when we are not in hospital but required to stay close by.
Thank you for taking the time to read Zarli girl’s story this far… we believe there are many more amazing chapters to come.
In April 2023, at just 5.5 months old, after a couple of weeks of severe unexplained vomiting, Zarliah was diagnosed with a rare aggressive brain tumour called AT/RT. Our world was turned upside down as we tried to come to terms with her diagnosis and started what would be a long emotional journey, living away from home and navigating our way through the challenges of the harsh treatment Zarli would receive.
At the time of diagnosis, we were told that Zarli had a 1 in 3 chance of survival. That was if everything went to plan, with no complications that might cause her not to be able to complete any stages of her treatment plan, in which case, the prognosis would be much worse. After a massive surgery, where they were able to remove about 2/3rds of the tumour, we started her first round of chemotherapy.
But only a few days later she needed an emergency MRI because her overall state was declining. The MRI showed the tumour was continuing to grow rapidly, and with a large bleed it was now a mass larger than its original size. The pressure in her brain was building up again, pushing on her brainstem and nerves, which control things like, breathing, heart rate, facial functions, swallowing and eye movements, all of which Zarli was showing symptoms of in varying degrees.
We were told to prepare for the worst, that there was a very real possibility that our baby girl wouldn’t make it to the end of the week. There was nothing else to be done other than ‘hope’ that the chemo works in time, but our medical team weren’t very optimistic. 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. Zarli needed to hold on and get to the second surgery date just over two weeks away. Our medical team literally said ‘it’s in the hands of the gods’.
They didn’t know that the God we serve was already working on Zarli’s life and there were hundreds of people praying for Zarli. Even so, this is news that no parent wants to hear. We had to fully trust God with our baby girl, she was in His hands… either way.
Just over 2 weeks later, she was still here and actually slowly improving. We had another scan which showed an unbelievable shrinkage of the tumour - back to about 20% of its original size. Our doctors were shocked and actually had to check they were reading the correct scans. God was working miracles in Zarli but also in us, during that time He had brought us from a place of just ‘trusting’ to ‘believing’. Even before receiving this news, we had a quiet confidence and peace that the scans were going to show amazing things!
The tumour had responded so well, our team decided another round of chemo would be beneficial before surgery. Again, it responded much better than expected, providing good opportunity to operate, and aim to get all of it! Our surgeon, who is one of the best paediatric neurosurgeons in Australia, is confident that they were able to achieve total resection.
Operating so close to the brainstem and lots of important neurological pathways, meant there were a lot of risks during both surgeries. Risks that could cause permanent damage to a lot of basic functions, but at this stage there appears to be no long term affects.
This brings us to current day. We mentioned the treatment plan, this consists of surgery to remove the bulk of the tumour, 6 rounds of chemotherapy, of which we are nearly halfway through, and then once she is over 1 year old, radiation therapy. Typical radiation therapy is not generally used in babies as it would do more harm to her brain, leaving her with permanent damage. There is a different kind of ‘targeted’ radiation therapy called proton therapy that our medical team are recommending for Zarli - this, however, is only available in America.
Our team are wanting to send us there to complete Zarli’s treatment. 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.
The Australian government has a funding program where they fund the treatment, flights and accommodation for the patient and one parent. We are currently in the process of applying for this, with the help of our medical team.
They don’t fund daily expenses such as food, travel, car hire etc. They also don’t provide funding for the second parent or siblings to go. Since the treatment will be over a period of 2 months we would ideally love to go as a whole family. Being self-employed, Jake has already taken a significant amount of time off work this year and with a trip to America in the near future, the time off work is only going to increase.
This is where you come in! Asking for help is not something we take lightly. We have been blown away by people’s generosity and support throughout this journey and feel incredibly blessed and supported. If you feel like you want to be part of Zarli’s journey in this way and could help by donating, even just a small amount, we would really appreciate your help so we can tackle this next phase of the journey together.
Money raised will first and foremost go towards; flights/travel insurance for Jake and Mason, daily expenses in the US, like food, car/transport, as well as ongoing life expenses at home that continue to roll in regardless of if you are in the country or not. If funds raised exceed what is needed for the trip, they will be used for daily expenses, possibly allowing Jake some freedom to work less and be able to spend longer periods in Melbourne during the remainder of her treatment, especially at times when we are not in hospital but required to stay close by.
Thank you for taking the time to read Zarli girl’s story this far… we believe there are many more amazing chapters to come.
Fundraising team: Team fundraiser (2)
Tioni Laidlaw
Organizer
Glendaruel, VIC
Carina Laidlaw
Team member