Jaxson’s Journey

15/03/2026

The last words Jaxson said were, “I love you.”
Then he was taken into theatre. Since that moment, we haven’t heard his voice.

Doctors have never been able to tell us exactly what stopped Jaxson’s vocal cords from working. Whether it was damage to the brainstem from the bleed or pressure from his tumour affecting the nerves, the truth is we simply don’t know.

The hardest question no one can answer is…
Will we ever hear his voice again?

We can only wait, hope, and hold on to the belief that one day the most beautiful sound in the world might return.

For the past three years, we’ve learned to navigate life through the smallest of signals.
A line for yes.
A circle for no.

On the good days, when he has enough strength, Jaxson can give us a thumbs up (and a cheeky middle finger for no at his dad’s request).

When communication is this limited, even the simplest moments can become incredibly challenging. Much of Jaxson’s medical care relies on visual cues, and there are times when we feel helpless, unable to pinpoint where his pain is or fully understand what he is feeling during a medical episode.

Even something as simple as watching television becomes a process. We scroll through every channel, waiting patiently for Jaxson to signal yes or no until we find the one he wants.

Being silenced for three years is something most people could never imagine. But despite everything, we continue to find ways to understand each other. We encourage Jaxson’s feedback, and no matter how small the signal, his opinion is always heard.

Over the past three years, we have trialled many different AAC (Augmentative and Alternative Communication) devices, from push-button switches to scanning systems and eye-gaze technology. We even went as far as designing our own 3D model in the hope that something might work. Unfortunately, none of these solutions were able to meet Jaxson’s complex needs.

It wasn’t until we noticed that Jaxson’s Xbox Microsoft joystick could control movement on a screen just like a computer mouse that we realised it could open the door to a completely new way for him to interact with technology and begin communicating again.

With the incredible support from the team at Zyteq, we were able to customise the internal components to suit Jaxson’s needs. Paired with Grid 3 software, Jaxson can now begin selecting words, letters, and numbers just like using a keyboard.

Our recent NDIS approval isn’t just a device to us. It represents something far greater.
A chance for Jaxson to communicate.
A chance for independence.
A chance for his voice to finally be heard again in a different way.

This technology could allow Jaxson to do so many things we once worried might never be possible again: to choose what he wants to watch, to call for help when he needs it, and to express how he feels.

For the first time in a long time, the possibilities feel endless.

We can’t wait to hear everything our beautiful boy has to say.

Hug your family tight
Jaxson & Family 💙

05/02/2026

Happy New Year to all our followers. May 2026 bring you and your loved ones health, happiness, love, and gratitude in every moment.

We apologise for the quiet period over the past few months. Life has been full, and a mental reset was truly needed. This page has always been a space to share Jaxson’s journey and to speak openly about life as a brain cancer and brain injury survivor. What often remains unseen is the hidden impact, what our family carries day to day behind closed doors.

Anyone who has experienced, or is currently navigating, significant trauma will understand the deep psychological wounds it leaves behind. Trauma can scar one’s ability to function as they once did, overwhelming coping mechanisms and often leading to PTSD, depression, and anxiety. Sadly, the effects rarely stop with the individual; they ripple outward, impacting families and friends in profound ways.

Mental health touches every individual at some point in life. Reaching out and seeking professional support is something I began only two and a half years later. Choosing this path is not a sign of weakness, but of strength. It benefits not only my own wellbeing, but also shows my family the positive outcomes that come from asking for help. Above all, I want to teach my children how resilient we can be regardless of what life throws our way.

For me, 2026 is a year of impact. It is never too late to change. I now see challenges as opportunities to grow and learn. I choose to fill my mind with motivation, to focus on what we have rather than what is missing, and to move forward with a positive, intentional mindset.

It has been three months since our last update, which means another MRI has been completed. The results show that the cyst encapsulating the tumour is inflamed once again. Jaxson has just completed another course of steroids to help reduce the swelling.

As this remains a recurring issue, we will now be having further discussions with his medical team to explore options for addressing this ongoing concern.

The next steps are frightening. The paths we have walked before carry significant risks. However, on a positive note, we have been given the opportunity to research, ask questions, and make informed decisions that we believe will lead to the best possible outcome for our boy.

The only way is forward.

Much Love
Jaxson & Family ♥️

03/11/2025

Every family with a loved one battling cancer understands the gut-wrenching feeling that comes with waiting for the results of those routine three-monthly scans.

“Scanxiety” is the term used to describe the anxiety, fear, and dread people experience before, during, and after medical scans. It’s a completely normal response for anyone undergoing regular testing — and for us, it happens every three months.

Unfortunately, our latest results have brought another challenge. Jaxson’s scans revealed that the cyst surrounding his tumour has yet again changed and made some negative symptoms reappear. Over the past few weeks, he has been experiencing intense head pain, tears, and bouts of screaming. The recent storms and fluctuating barometric pressure certainly haven’t helped his discomfort either.

Back in April, we faced a similar issue caused by the same cyst and managed to reduce the swelling with corticosteroids. At that time, the medical team also recommended a craniotomy — an option we firmly declined. Once again, we’ve chosen to avoid surgical intervention, as we are fully aware of the potential long-term complications such procedures could bring for Jaxson.

We also declined inpatient care, as we truly believe that home is where healing and happiness thrive.

Oncology has prescribed another seven-day course of Dexamethasone. It’s a harsh medication with significant side effects, but it’s crucial for reducing the swelling quickly. Alongside this, we’ve been supporting Jaxson with natural anti-inflammatory supplements to assist in easing the inflammation.

Below are Jaxson’s most recent scan images, showing the difference between:
A — the most recent scan, and
B — the scan taken three months ago.

Yes, this is another bump in his journey — another twist and turn. But despite every setback we’ve faced, we will continue to advocate fiercely and do absolutely everything in our power to get our boy through this.

Like we always say, can you please keep Jaxson in your prayers. 🙏

Hug your family tight.
💙 Jaxson & Family

18/08/2025

18/08/2025

Every year the Brisbane Catholic Education (BCE) hosts an Event to recognize excellence within its schools and among its staff. This event includes the BCE Excellence Award, the Spirit of Catholic Education Award, and the BCE Student Voice Award, among others. These awards highlight outstanding achievements in teaching, leadership, community engagement, and student support.

This year St Eugene had several finalists who have all contributed in playing an important role for Jaxson to return to school. One particular staff member Ruth Sharman, nominated for the TUH Award for Excellence in Safety and Wellbeing has worked behind-the-scenes to make Jaxson’s
return to school come into fruition.

Ruth has advocated for Jaxson from the very start. Going back to school wasn’t something we thought of as there were so many uncertainties and legalities and we didn’t know where Jaxson would fit.

Ruth worked tirelessly for many months to get all the necessary requirements filled, so that Jaxson could finally join his friends and fellow classmates for the start of 2025. Her dedication, care & attention isn’t just towards Jaxson but to every student that she comes in contact with at St Eugenes College.

Our boy has flourished since he has returned back to school. This has impacted many areas towards helping his rehabilitation & has added so much positivity to everyone’s hearts. Of course, none of this was ever possible without the dedication & commitment from this exceptional lady and team Jaxson.

We are so thrilled to announce Ruth Sharman has been recognised as the winner for the 2025 Brisbane Catholic Education - Excellence in Safety and Wellbeing.

Congratulations to all finalist at St Eugenes College, we are immensely proud of your love, persistence and devotion.

Team Jaxson will forever be winners in our hearts. 💙💙

Hug your family tight
❤️ Jaxson & Family

24/05/2025

To our amazing Hulk
Happy birthday!! (23rd May)

These last 12 months haven’t been smooth sailing, but despite the hiccups you still continue to demonstrate nothing but pure bravery & strength.

Jaxson’s recent scans have shown both tumour and cyst remain stable. We truly believe our holistic approach & protocol has positively impacted towards improved results.

We will never stop researching, dedicate tireless hours & sacrifice what ever financial commitment we need to ensure Jaxson is 1 step ahead and keeps moving forward to full recovery.

We will continue to walk beside you & fight what ever obstacles comes our way.

Rocky Balboa's most famous line is "It ain't about how hard you hit. It's about how hard you can get hit and keep moving forward”.

Hug your family tight
Love Jaxson & family 💙

13/04/2025

This update is difficult to write especially when there are so many uncertainties in life.
But Jaxson’s life is no different to yours & we constantly remind ourselves to live by the motto “cherished every single day”.

The last 10 days in hospital have been extremely difficult & exhausting. From Thursday through to Saturday we have been involved in several in depth meetings.

Jaxson’s neurosurgical team came to the table with all possible options & weighed up all the possible risks versus benefits. Every meeting was delt with the feeling of multiple blows to the gut. The fear, anxiety & numbness is something you also have to deal with whilst you make decisions about your child’s life.

Jaxson was subjected to more MRI and CT scans on Friday as they required more information using a different type of test. With all the information they gather they are able to input this into the computer that they use for the surgery and perform multiple different scenarios trying to see which option would give the most reward with the least possible risk.

There were four options on the table before these scenarios were carried out by the computer.
Two relatively minor brain surgeries targeting the cyst portion of the tumour mass. A craniotomy targeting the complete tumour mass and the final option of no surgery and commencing chemotherapy asap.

Unfortunately after all the scenarios had been run in the simulator the craniotomy was the only surgical procedure they offered. Without even having a discussion we both were heavily against this. The thought of Jaxson having another bleed, or having more deficits or even passing on the operating table is a decision that has gone through our minds multiplied times. Yes it could be success too however every decision we make we weigh up risk versus rewards and with Jaxson’s history and the current damage to his brain stem from the first surgery we deemed the risk just far too high.

To add to all of this during the final MRI Jaxson had his ventricles are also now enlarged. There could be 2 different reasons for this another shunt blockage like we had in December which would require a shunt revision surgery or slowed drainage past the cystic mass of CS fluid to his spinal column.

At present we are waiting for a meeting with Jaxson’s oncologist to discuss details about starting chemotherapy and what this would entail.

While awaiting this meeting we have made the decision to discharge from hospital as being there is not good for our mental health which in turn is not good for our physical health.

None of the decisions we make about Jaxson’s medical needs are ever easy or decisions we ever thought we would have to make.

More then ever your prayers are so very important especially for Jaxson

Please pray for Jaxson
Pray for healing
Pray that surgery for a shunt revision is not necessary
Pray for a full and complete recovery.

Please continue to pray for our family

Enjoy these precious moments with loved ones & hug your family tight.

Much Love
Jaxson & Family❤️

08/04/2025

Firstly I would like to start off by saying thank you to everyone for your love, prayers and support. Thank you to everybody checking on us & who have offfered to help. Your love is felt immensely.

We are still in hospital and they have put Jaxson on high dose cortical steroids to reduce the inflammation and help minimise the symptoms he was having from the pressure being placed on his brain stem, cerebellum and ventricles.

We have had multiple meeting with Doctors from both oncology and neurosurgery and at present they are coming up with the best course of action for Jaxson which will involve another brain surgery. The question still remains how substantial will his brain surgery be?

Thursday will give us more clarity to which direction they will go after the 4 top neurosurgeons at the Queensland Children’s Hospital have a meeting to discuss and formulate a plan for him.

Since the start of this unthinkable journey we as parents have had to make decisions about Jaxson’s care and treatment that have weighed very heavy on us. Decisions no parent would ever think they would have to make. Thursday will be no different.

More then ever your prayers are so very important.

Please pray for Jaxson
Pray for healing
Pray that his surgery is successful and without any complications.
Pray for a full and complete recovery.

Please pray for Phillip
Pray for strength for him as no 6 year old should have to go through this or see his brother that he looks up to so much suffer like this.

Please pray for us as parents.
Pray for guidance to make the right decisions for our boy.
Pray for strength for us to endure this journey.

We truly are thankful to all of you for your prayers, love, support and positive message that you send.

Enjoy these precious moments with loved ones & hug your family tight.

Much Love
Jaxson & Family❤️

03/04/2025

Ever since the day Jaxson was diagnosed with his brain tumour and then partial removal of it you live with the fear of it growing again to the point where it will impact his life and his ability to do things.

So far the growth of the tumour has been minimal but with his tumour also comes a cyst that encapsulates it. This cystic mass has been slowly growing over the last 18 months. For the last 2 to 3 weeks we have noticed that Jaxson has been sleeping a lot more and his responses have been getting slower and less consistent.

Today we decided that a trip to the emergency room to present for a MRI was warranted. The results from this MRI were definitely what we didn’t want to hear. The cystic mass a grown significantly in the last 2 months to the point where it is increasing the pressure onto his brain stem and reducing the flow of his cs fluid in the 4th ventricle.

As I write this Helen and Jaxson have been admitted back to the Queensland Children’s Hospital awaiting a meeting of his care team as to which way we should proceed.

The most likely outcome for Jaxson will be major brain surgery to drain the cystic mass and while there remove as much of the underlying tumour that they can.

Please if you can prayers for our dearest boy are needed.

Enjoy these precious moments with loved ones & hug your family tight.

Much Love
Jaxson & Family❤️

06/02/2025

After 558 days Jaxson’s back at school!

Going school is something that we all take for granted but for Jaxson to be with his class without mum or dad is a huge step in his recovery.

To get back to school has been an extraordinary journey that has taken many months and countless hours of work behind the scenes to come into fruition.

From the beginning of the journey back to school there has been some truely amazing people working diligently to overcome any and all obstacles placed in the way of his return. “Team Jaxson” was the term they used for all the incredible humans that have been apart of this journey.

There are no words that can ever express how grateful we are to Ruth Sharmen (St Eugene’s Support Teacher: Inclusive Education - Years 5 & 6) Siobhan O’Sullivan (St Eugene’s 6 Navy’s teacher) and Brooke Clibborn (Jaxson’s in class support officer)

To the staff at St Eugene College we are eternally grateful for the dedication, commitment & support.

A special mention goes to the specialised team from Brisbane Catholic education.
Thank you for the assistance & guidance, leading us through the right channels.

To the community and students at St Eugene’s thank you for making Jaxson’s world a better place.

Sometimes as adults we need to learn from kids on how to treat others and to not judge people on outward appearances. We have attached a photo from one of Jaxson’s classmates expressing gratitude from a child’s point of view.

Jaxson was thrilled to be back in a classroom environment.
He look forwards to spending more time socialising & learning with his peers.

Enjoy these precious moments with loved ones & hug your family tight.

Much Love
Jaxson & Family❤️

25/12/2024

12 months can make a huge difference from where you were to where you can be.

Enjoy this precious time with loved ones & make beautiful memories. 💕

It’s a blessing to have our family around the Christmas tree this year.

Merry Christmas 🎄
From our family to yours
Love from Jaxson & family 💙