Jaxson’s Journey

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❤️

31/12/2024

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 💙

16/11/2024

Things in life can be so unexpected one day you are travelling along all nice and calm and the next the largest storms can be right there in front of you.

Recently Jaxson has been making some great gains in his recovery. We have found a great allied health team who are all behind Jaxson helping and wanting him to move forward and recover.
St Eugene’s has been so supportive with facilitating Jaxson’s return to school where he attends once a week now for a couple of hours both in the classroom and 1:1 with his teacher and a couple of his mates. This is all an introduction to him returning to school next year.

Everything was travelling as smooth as we can expect through his journey but this all changed 1 week ago.

Jaxson has been experiencing more tremors and stiffness than usual to the point that communication with him was starting to become difficult.
Jaxson had 2 full days of very bad tremors and stiffness which inturn then proceeded to a state of lower consciousness and response.

On Wednesday we rushed him to the children’s hospital where test were done and Jaxson was admitted once again to hospital.
The outcome of all these test was that the shunt(drain) that has been placed in Jaxson’s ventricles and the tube going to the ventricles had become blocked which as a result of the fluid was building up and so was the pressure inside Jaxson’s brain.

Emergency brain surgery was done on Thursday afternoon to replace the tube and also the shunt.

The next few days will determine if the surgery was successful and the cs fluid has returned to normal volume and pressure.

During his routine test we also got news Jaxson’s tumour is still growing. We have seeked advised from professionals all over the world - we are determined to win this battle for our boy, it’s just finding the right pieces to the puzzle.

We ask if you could please keep Jaxson in your prayers for recovery from this surgery & that all cancer cells be removed from Jaxson’s body.

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

Much Love
Jaxson & Family 💙

04/10/2024

Firstly we would like to thank everyone who is in Jaxson’s corner supporting him with your prayers and being invested in his progress and recovery.

12 months ago the surgeons delivered the worst news any parent would ever want to hear. “ Let’s see if he survives past 24-48hrs”.

The social workers asked if we wanted a priest to him bless him, they asked if we wanted to make a memory box.
We rejected all requests & refused to believe this was the end of his life.

Today marks 12 months since his surgery, Jaxson is an incredible survivor!

Yes, life is very different to what we had envisioned and we are still climbing the mountain with news of a growing tumour. But if we have learnt anything from these 12 months it’s to be grateful for what you have got in this present moment.

To be able to wake up every day next to Jaxson we consider this a blessing. We constantly remind ourselves there will always be someone out there that doesn’t have this with a loved one and would give anything to have what we have.

I’d like to share an amazing quote from Trent Shelton

“Somebody didn't wake up today, but you did. That's enough reason to stop complaining, and that's enough to be thankful for.
Never let your troubles blind you to your daily blessings.”

Jaxson inspires us everyday with his determination and never give up attitude no matter how bad he feels. He truely is an amazing young man who will recover and is destined for greatness.

Much Love
Jaxson & family 💙

26/08/2024

Sometimes it can be the smallest things that bring the greatest joy. This is the first time we have seen voluntary movement in his left arm since October 4th 2023.

26/08/2024

We just wanted to start this latest post by reflecting on how grateful we truely are with all the support, compassion and love we have received from all of you. Up until now Jaxson hasn’t been able to express through his only form of communication how he truely feels about all of you. Jaxson wanted to take this opportunity to express his gratitude in videos attached.

We have been home now for nearly 4 months and life with all the aspects of Jaxson’s recovery is busier then ever. With multiple therapy sessions, school work, trying to incorporate fun and family time our days seem to always be jammed packed. Our typical day consists of
6am-8am
Jaxson’s first bolus feed, water bolus, meds
8am-9am
School drop off for Phillip
9am-11am
Therapies ie physio, ot, speech and feeding therapy
11am-1:30pm
Jaxson’s second bolus feed, water bolus and meds in conjunction with school work
1:30pm-2:15pm
Jaxson is on the stander machine to allow him to weight bear for his bones
2:15pm-3pm
Pick up Phillip from school
3pm-4:30pm
Jaxson’s third bolus feed relaxation time with his brother either watching tv or watching Phillip play minecraft
4:30pm-9pm
Jaxson’s night time routine which includes shower then to bed where he has his fourth bolus feed, water bolus and meds. During that time it’s also make dinner, prepare Phillips lunch for the next day, get him ready for bed. Once Phillip is in bed it is clean up to get ready for the next day.

Jaxson remains as determined as ever to make a full recovery but we are now breaking that recovery down to small steps that he can achieve along the way. With all of the support and the funding we have received from the gofundme page that was setup we would like to show you how this is aiding his recovery by allowing us to access things that NDIS doesn’t pay for.
This funding has been utilised to seek holistic/alternative ways that our family believes will benefit Jaxson in his recovery.
•natural supplements that support brain development and recovery which included 5 different oils, one which cost $8 per 2mls which he takes everyday
•alternate therapies weekly i.e acupuncture
•herbal teas which are $100 per 6 tea bags
•Jaxson’s home blended food with all fresh produce and protein with the added supplements like cocoa powder, h**p seeds, walnuts,chia seeds which are all proven brain foods.

Attached is a video of how Jaxson does his school work and he communicates the answer to these questions.

One thing this year has taught us especially in our close group of friends who have also been through some challenging times is to cherish your family and friends and all the moments you create together.

Much love
Jaxson and family 💙

15/07/2024

Sorry we haven’t done an update for a while. Life has been hectic trying to navigate the NDIS world and working out who you can trust in it. There are so many people/providers that their only goal is to get as much money as they can from disabled people by either not doing what they promised or by charging ridiculous amounts for basic services. We are still trying to get the right allied health team for Jaxson, people that will help him achieve all his goals.
During this time though it hasn’t all been doom and gloom. Jaxson has been doing a lot of school work through the app education perfect which his school uses and his goal was to reach number 1 in his class which he has done in both English and Maths.
Jaxson continues to improve in his communication through the whiteboard and pen. As you all may recall during our time in hospital Jaxson could do a straight line for yes and a circle for no. This has now improved to being able to write words and sentences with the help of Helen helping steady his arm which is still affected by the dystonia, but that too has improved somewhat.

Jaxson still remains determined as ever to recover and get back to where he was and what he could do before the operation. We asked Jaxson what his top 5 goals were and what he wanted to achieve. He wrote them down for us.

On the medical side of things we have had some ups and downs with this also. After multiple vomits early one Monday morning a trip to the emergency room at the Queensland Children’s Hospital where they performed an emergency CT scan. Of course with every scan comes the anxiety of what the outcome will be. With Jaxson having a VP shunt these devices have a high chance of getting blocked and causing a build up of CS fluid which in turn causes vomiting. This time the scan was all fine and the ventricles and fluid spaces were actually the best they have been since his operation. Before we left the hospital we had discussions with the Neurosurgeons about what setting his shunt was to be set at as Jaxson’s body still does a small amount of what it is meant to do with CS fluid. It took a lot of advocating on our behalf to convince the neurosurgeons to adjust the shunt setting to a slightly different setting to 95% of people with shunts have. This setting that we advocated for seemed to be the right one and the scan showed that.

Our next big hurdle will be what the tumour is doing and where we go from here with this. Jaxson has had his MRI with contrast and we are now waiting to see the oncologist in regards to this.

The time has come for Tim to go back to work. We have been very blessed and fortunate that he has been able to be home with Jaxson for the last 10 months but as everyone will appreciate times are tough at the moment with the cost of living and our savings are depleted. This will be rough on us all but Jaxson understands that to be able to live and provide any extra therapies or services Jaxson will require that NDIS won’t pay for (and of course keep a roof over our heads and food on the table) his Dad needs to go back to work. Helen will remain by his side while he is at work helping him reach his goals.

We have asked you in the past & need to ask again for that special favour. Before you close your eyes tonight, say a little healing prayer for our dearest boy, your love is very much appreciated during this time.

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

Much Love
Jaxson & Family❤️