Our family has reached a point we never thought we'd face.
After 17 years and five battles with brain cancer, Aaron's doctors have told us we're running out of time. There is one more treatment that gives us hope—CAR-T therapy—but because he doesn't qualify for the funded clinical trial, we have to pay for it ourselves.
If you have a moment, we'd be so grateful if you could read our story on our GoFundMe page. Whether you choose to donate or simply share it with others, every bit of support helps give us a chance to fight for more time together.
Thank you from the bottom of our hearts. ❤️
Round One
My name is Aaron Rose
And I have Brain Cancer.
15 min read
2008
I went to a doctor after experiencing an intense feeling of déjà vu and a metallic taste in my mouth. I was sent home after being diagnosed with depression and anxiety.
2009
I woke up in the sale hospital, due to having a grand mal seizure during my sleep. The events that followed that day changed my life forever. I went from a fairly relaxed life, preparing to become a first-time dad and starting a new career in offshore drilling, to fighting for my life.
A brief stay in the local hospital and a CT scan revealed a substantial mass on the right side of my brain. This led to me being rushed to St. Vincent's Hospital in Melbourne on the same day we were meant to induce labour for my firstborn. An MRI and blood tests in the late evening of February 1st revealed our worst fears: we were told I had a brain tumour, a suspected low-grade glioma, that had potentially been growing for 7-10 years.
A quick decision was made by the neuro team that this tumour was large enough to pose a danger to my immediate life. We went in for emergency brain surgery. The results were not good. We were told I had a very rare form of brain cancer that only 2% of diagnosed patients experience. It was called a Mixed Oligo-astrocytoma grade III and I had 6 months to live (they forgot to mention with out intervention). Complications of the tumour's location around a main artery in my brain, the neurosurgeons wanted to perform a follow-up awake stereotactic guided craniotomy. Brain surgery while I was conscious.
But not before my beautiful baby girl, Montana, was to be born. Three weeks over due and an emergency c-section in the middle of the night but brought into the world safe and sound. Because the next surgery was quite invasive, there was a high possibility that I would become "brain damaged" or "lose mobility" on the left side of my body like a stroke victim. It was deemed more important for me to be there to welcome my baby girl into the world.
Four days later, I was back under the knife.
Following my surgeries, I completed a 6-week course of intensive radiotherapy at 50Gy. I worked right through my treatment and only experienced hair loss at the entry and exit points of the radiotherapy which wasn't too bad. As well as extreme fatigue and nausea but I wouldn't tell you that. I came through it all relatively unscathed physically but mentally it's another type of battle.
I conducted regular scans at six-month intervals post-surgery and treatment up until three years post-diagnosis when I transitioned to annual scans. We were finally getting back on our feet and things were rolling along nicely. Five years without any reoccurence meant I was in remission! We took this as a good sign and completed our family adding Darcy 2014 and Archer 2016.
Round Two Not Out
At the end of 2016, I missed a scan because I couldn't get home from Darwin due to not getting a flight in time, where I was working on the INPEX project.
Somehow, I was removed from the outpatient list and told I needed to get external referrals to be admitted again.
2018
After 18 months of trying to get in for a scan, I was accepted back into the system and went for an MRI on March 28, 2018.
On April 10, 2018, I walked into the clinic for my follow-up appointment, waited for my name to be called, and when it was, I was taken right through to admissions.
I knew straight away I was in for bad news.
The doctors pulled my scan up and I saw the regrowth straight away. The doctor proceeded to informed me my tumour had begun to grow again, the lesion was 2cm x 3cm. Due to the histology of my first tumour, the specialists were concerned that I had advanced to a GBM Stage 4. A Gliobastoma grade four is a death sentence. You have a year left max.
So surgery was planned for three weeks later, but due to other emergencies it was pushed back for 45 days. Terrifying for my wife but was fine for me because it was at the tail end of a major outage, I could bank some money for when I couldn't work.
So I worked right up to the day before surgery.
The histology came back the same as my first tumour. As I had previously undergone radiotherapy, I did not qualify for it again. Instead, I was administered a round of temozolomide chemotherapy. An oral chemotherapy taken daily for 7 days then a 3 week break for 12 cycles. An entire year of chemothearpy. The side effects of the chemotherapy were pretty severe, particularly in terms of nausea and fatigue, but I pushed through.
After chemotherapy, life was good. We got back on our feet with the support of our amazing home town community of Rosedale and surrounds. Living rural gives you the ability to be among some of the greatest people. People who live in small town communities. People who look out for each other. Friends who become family.
I went back to 12-monthly scans after 2 years, and life became normal again.
2020
In June, Archer at age 4, was attacked by next doors blue heeler. His face was torn apart, he was rushed to hospital where he had corrective surgery. 22 stitches in his little face.
In July received a phone call from Wagga Base Hospital. My dad had been admitted with a brain tumour. It was the middle of COVID, I couldn't do anything, I couldn't go to Wagga to see him or help him. Dad was diagnosed with an oligodendroglioma grade II on his corpus callosum. It was inoperable. I could not believe what I was hearing. Due to the pressure the tumour was causing and it not being operable, they decided to install a neuro-shunt in his brain. During this procedure, they accidentally discovered a lesion in my dad's throat, which turned out to be his primary cancer. The doctors managed to removed it successfully.
Dad was administered six weeks of radiotherapy and put on six-monthly scans. He has been forced to retire due to the medical implications of his case.
2022
On February 22nd, I spent the morning trying to get ahold of mum. Her phone was turned off all day which was strange for mum, but I thought she had had enough and turned it off. As the day went on I kept thinking of her. When the kids got off the bus, I collected them and we headed over to mum's. I had a sinking feeling in my gut and I warned the kids. The kids were knocking on the door yelling out 'Nanny". Montana said 'Dad, she's not answering". I told them to wait here and went in.
Mum was laying in her normal position on the couch from behind she looked to be asleep but when I walked around the couch. I saw the discolouring and blood coming from her nose and her arm hanging from the couch swollen.
She was gone. I fell to the ground.
I had to ensure that the kids did not see her as it was the worst thing I have ever seen.
My first thought was she had a stroke or a heart attack and I was too late.
The mental anguish I suffered was beyond anything that I had ever previously felt.
Mum died from a mixed drug toxicity and retention due to covid, her brain told her body to stop breathing and she had slipped away peacefully.
Round Three
Dear Bad Luck, Let's Break Up.
2024
We decided to pack up the whole shebang and go traveling, after an emotional few years dealing with the loss of my best friend, my mum, we needed a change. A 12 month trip around Australia should do it.
I had my annual scan in February.
We were on day one of the road and pulled over in Leongatha (75 km from home) to attend my telehealth appointment.
After an hour's wait, my results were not back strangely.
Two weeks later, We had just pulled up in Mt Gambier and settled in to a caravan park when I had a random phone call from Jane (oncologist) and Dr. Gogos (neurosurgeon) advising that there had been obvious changes to my scan.
Not enough for me to need to take action right away.
That I should come back in six months for another scan.
It devastated me, but we decided to push on and follow our path.
Six months went by fast; we traveled the whole south across to Perth and went up the west coast to Darwin. We saw some amazing sights. got some solid family time and grew a love of the nomad lifestyle.
We left Darwin and headed home in time for my MRI on October 4, 2024, I had a follow-up appointment with neurosurgeon in November.
Three options: 1. Surgery for a biopsy leading to a clinical trial called Lumous 2, which was my best line of defense.
2. Watch and act when symptoms started to show.
3. Commence 12 cycles of chemotherapy but it wouldn't be as effective last time.
We chose option 1.
Moving forward, I was booked in for surgery on December 16th to remove the regrowth.
Surgery was relatively easy this time around; I was up walking around a few hours later and released to go home the next day.
Christmas was pretty slow for me though; the pain was quite bad in this healing process, but I was surrounded by the ones I loved, minus my mum.
My tumor results came back the same as previous tumour results. A big sigh of relief. My tumour was sent off for genetic testing to determine if they could match my biomarkers for the Lumos trial. Eight weeks later, we received the genetic results and I was admitted to Arm C of the Lumous 2 clinical trial. This trial involves taking Selinexor (used for multiple myeloma blood cancer treatment but shows positive signs against my type of cancer. I am required to administer this drug every week on a Tuesday, which knocks me for six. I don't work on Wednesdays and Thursdays at this time due to fatigue and other side effects.
I have blood tests every two weeks and an MRI every eight weeks.
This is our new normal. For Now.
2025
2025 brought it's own challenges and the fourth round of treatment.
2025 was the most challenging year of this whole battle.
There were no surgical options left for me, but I became candidate number one for the Lumos 2 clinical trial, which showed a lot of promise. The first few months went reasonably well with minimal side effects. After the fourth round, though, the nausea, stomach pain and constant illness really started to take hold.
I tried my hardest not to let it affect my daily life. I kept working and pushed through as best I could. Then the toxicity levels increased. I could barely eat without suffering severe stomach pain and nausea. The medication was taken every Tuesday night, and every dose left me with what felt like a three-day hangover.
Eventually, I reached a point where I had to choose between providing for my family and looking after my own health. It was one of the hardest decisions I've ever made, but I stepped away from work so I could focus on getting through treatment.
The months rolled by, but nothing really changed. We kept pushing forward and celebrated the small milestones instead, my 40th birthday, camping trips to the beach, and days spent exploring together as a family.
Because I was so unwell, we decided to stay close to home in Victoria until we had a better idea of what the months ahead would look like.
During that time, we made a huge decision. We sold our family home and began building our dream off-grid caravan so that, once the trial finished, we could continue travelling Australia and hopefully find a place to settle for the next chapter of our lives.
We eventually headed to Queensland to explore some of the areas we'd been considering. After years of promises, the kids finally got to experience the Gold Coast theme parks thanks to the incredible generosity of Dreams2Live4 and the Peace of Mind Foundation, who provided the tickets.
It meant the world to us.
The trip also gave me precious time with my dad and my brother before we returned home, where the reality of treatment and illness continued.
We managed eight weeks in Queensland before heading back to Victoria for Christmas.
In December, I had already decided that the side effects of the trial were becoming too much and that it was time to stop. Before I had the chance to make that decision myself, I was told the trial wasn't working. The tumour had continued to grow, and I was removed from the study.
That same day, I started Temozolomide chemotherapy again.
My world fell apart once more.
I thought surgery would be the next step, but this time, that wasn't going to have the ending we'd hoped for.
Round Five
Fifth round of Treatment
2026
We advocated for a second course of radiotherapy, despite the fact that I'd already received it 17 years earlier. After careful consideration, we were approved.
We understood the risks and the potential complications, but we believed it was my best chance of buying more time.
I came through the treatment reasonably well. Apart from extreme fatigue and hearing loss in my right ear, I thought I'd handled it better than expected.
So April we were gearing up to finally get back on the road, took a side quest to visit family, check out some properties and upgrade the RAM.
Three months later in July, things changed.
The scans showed significant swelling in my brain, along with further tumour growth. It feels like the radiation has caused more damage than anyone anticipated.
Our options are becoming very limited through our health care system.
The next step is to try a combination of Avastin and Lomustine chemotherapy while we wait and hope to raise enough money for CAR-T cell therapy.
For now, that's where this journey continues.
