WalkingYourWay

14/06/2025

Hi Dad...

Hi Talin...

It's your birthday...

I wish I could give you a warm hug...

But sadly that hasn't been the case for 13 years now...

Today my Gemini Buddy you are 19 years old...

At least in my visions of your future self...

Though in the after life you are only just 6 years old...

I stretch between the what was, and what is...

I would love to be discussing life with you...

What you are doing, who do you have a crush on...

Are you at university...

Can I help you with fixing your car...

What are we having for dinner...

It is your turn to cook, but hey... it's your birthday and your brothers and I have something special for you...

"But dad, you cook better than me..."

Well, ok... smiles... we'll have to work on that...

I miss the making of memories...

The new discoveries, highlights and lows of life...

The things to share and live though...

The moments that count...

Love you to the Stars and back Talin...

Plus a little bit more...

Goodnight my Brilliant Star...

Dad...

"Love you too dad...
I miss you and my brothers as much as you miss me..."

01/06/2025

Silent Warriors Documentary - Lucy McAleer...

Lucy was diagnosed in 2021...

I noticed her eyes, she got hit in the head at a basketball game...

The Royal Children's Hospital were straight onto it...

The next day they told us she had ...

We had 8 months from diagnosis...

Were there any other DIPG Groups...

I found Maddy's Suy's Group in Australia...

We had a Make a Wish trip, but Lucy declined...

It was day at a time...

For the last 5 weeks we were in hospital...

There were not clinical trials all the time...

We explored everything...

Connect with other parents and families - check with any professional...

Our oncologist was amazing...

The government has given us no funding...

We need awareness and funding to make a difference...

You are not alone...

We are on this journey for the rest of our lives...

Nicole McAleer

Sadly

Gerry Tye

"Silent Warriors" is a series of 13 ...

31/05/2025

Silent Warriors Documentary - Ryley Kemp...

On holiday Beau Kemp realised something was wrong...

They were told to go to the hospital, where they were told Ryley would die from ...

Ryley reacted well to radiotherapy and low dose steroids...

Seeing him you would not know it...

They found the Australian WhatsApp group for those with DIPG and then the International Facebook groups for DIPG / DMG...

This is where they found out about ONC201 from Germany...

It was not available here in Australia, talking to Professor Matt Dun they compared the drug specifications and went onto ONC201...

Sadly Ryley started developing headaches and progression was coming...

Thor contacted him which really lifted his spirits...

Beau Kemp wondered of there was funded research 15 years ago - would Ryley still be alive?

Neil Armstrong asked the same question for his daughter Muffy's diagnosis 60 years ago...

Why haven't things improved?

If Ryley can be brave, I am passionate about DIPG...

To increase the time that parents have with their children...

I wish to be as brave as Ryley...

It is incredibly underfunded type of childhood cancer...

It desperately needs support...

It could happen to anyone tomorrow...

Material things don't matter...

Ryley was diagnosed in 2022 and passed away at the age of 8 short years...

Please make a difference...

Gerry Tye

"Silent Warriors" is a series of 13 sh...

29/05/2025

Eve - The Girl Who Lived... Died yesterday on the 28th of May...

Eve was the miracle IVF baby to Angie Sari-Daher and Tamer Daher...

She is also the Longest diagnosed with DIPG at 1541 days since...
That is 4 years, 2 months and 18 days post diagnosis...

The Girl Who Lived - Forever 9 ¾
She was not expected to live past the 9.5 months, but she did...

With the support from Professor Matt Dun and RUN DIPG Research Lab, Eve survived on ONC201 and Paxalisib as a combination therapy...

"A couple of weeks after we filmed this video last year Eve would lose her ability to speak, walk and use her hands. Who would have thought she’d become quadriplegic just a few weeks after?"

I met Eve and family at Bear Cottage Children's Hospice in late 2024...

I had not been back there for 12 years since my own son Talin died there at the just age of 6 years to ...

I didn't realise they were staying in Talin's Room at Bear Cottage...

I was grateful to be able to spend time with them, though at Eve had lost the use of her voice and hands...

Eve still managed to be able to express herself in a loving engaging way...

Eve wants us all to continue to do something about DIPG...

For all the other children that come into this terrible journey...

Please help where you can...

Sadly

Gerry Tye

DIPG Parent...

https://www.facebook.com/share/v/1AvQNkRGJ2/

Send a message to learn more

27/05/2025

Silent Warriors Documentary - Talin Ash...

This is the Last Day Talin ever came Home...

This was on my Birthday...

Today is that day...

It is the last day I had my family all together...

We celebrated mine and Talin's birthday with his brothers Tristan and Kian...

We would never be together again...

Talin would die in my arms weeks later at Bear Cottage Children's Hospice...

I haven't celebrated my birthday since...

For me it is a day of remembrance...

The inner quiet of what has been lost...

So what do I do...

I remember my children...

I work in brain cancer...

Because I had a conversation with Talin, not long before he died...

He asked if I could make a difference...

I said - with a pinky promise - I would try...

For 13 years I have worked in Adult and Paediatric Brain Cancer...

Every Day...

Tonight I am going out...

To NSW Parliament House - for - The Brain Cancer Group’s 8th Annual Awareness Raising Event...

It fits...

I think about birthdays, some are happy, some are sad...
I think about the many that are missing that special someone / someone's in their lives...
I see the loss of connection for those whose child has died...
I recognise the attempt to make a broken person whole...
How can that be when they are gone...

So I choose to live my truth...
To examine the pain and be real about it...
To look at it and see if there is anything I have missed...
To make a difference...

A difference is an action that makes a 'difference'...
It doesn't have to be big - though it can...
It can be a kind word, a recognition...
It can be a moment of your time...

Parents want to hear their child's name...

We want to know they exist in the hearts of others...

We Need

You can't hurt us by talking about our children...

We have that in bucket-loads...

But it can relieve the pressure of what we carry - even if it is a momentary feathers lift...

If you want to - make noise where it matters on the terrible lack of support and funding in childhood brain cancer...

It is their leading cause of death...

Curing this will help so many...

Adults too...

Time is not disposable...

Neither are our children...

And Thank you for the Birthday Wishes...

In Quiet Contemplation...

Gerry Tye

"Silent Warriors" is a series of 13 sho...

23/05/2025

Silent Warriors Documentary - Evie Whipps

Evie was diagnosed with in 2023 - she was 10 years old when she died...

Evie was a happy healthy child - she became anxious and started stumbling...

This was the beginning...

When you are called into 'That Room' with a box of tissues and a scan on the wall - Your child has terminal cancer...

This is Not Our Life...

For 4 months we spent time together in the moment...

DIPG is complicated diagnosis...

Pia Whipps is on a journey to educate people about DIPG...

There is a Giant Gap in Knowledge...

By going public they found help... a DIPG Support Group...

'I am really quite scared to, to think that there will be more children and their families affected by this...'

Catching it early gave us a good 6 months of health...

Reach out and Engage with People who have been through this...

The government has no priority on your child’s life...

It is not acceptable...

We need research and funding...

There are more children diagnosed everyday...

We have to do better...

Gerry Tye

"Silent Warriors" is a series of 13 ...

18/05/2025

DIPG Awareness Day... 2024 saw the loss of 171 Children to DIPG / DMG...

171 Families had to say goodbye to their most cherished...

Brain Cancer is the leading cause of death in Children...

Don't you wonder why it is not a National Priority...

I do!

Have a look at these faces and think that it could be anyone - anywhere...

There is no discrimination with DIPG...

It is just the Worst of diagnoses with the Worst Brain Cancer in the most Vulnerable Population...

Children are Our Future...

They are worth saving...

Let's Make a Difference...

Gerry Tye

https://www.facebook.com/share/p/18ZW9qd3R5/

Send a message to learn more

17/05/2025

Dr Charlie Teo on DIPG / DMG

On DIPG Awareness Day May 17th...

What can you do?

The Nihilistic View of the Past needs to Change...

We have to do better...

Biopsy gives molecular and genetic testing...

If you don't try, what do you get...

It is the choice to do or not...

Medical intervention is a Risk...

Awareness Creates Change...

DIPG is a terrible disease...

Make a Difference...

The outliers do make a difference...

Out of the Box Thinkers may find a solution...

Awareness makes a difference...

Awareness is a Choice...

Gerry Tye

"Silent Warriors" is a series of 13 s...

13/05/2025

Silent Warriors Documentary - Ruby Rae

Ruby was 6 years old when diagnosis which took 8 weeks through the medical system...

Ruby only had 5 months of the Journey...

Hannah is a paediatric nurse...

Nursing staff don't see the DIPG children unless they are in critical condition, because they are just Sent Home...

DIPG is a diagnosis on the entire Family - For Life...

There was No Support...

No Clinical Trials...

Self Funded Medication that is financially devastating...

Get Support from other

There needs to be a template for DIPG Children at the very beginning at every hospital on the Day of Diagnosis...

DIPG is the Deadliest and Cruelty Childhood Cancer...

How can it be forgotten for over 60 years?

Please do what you can to help...

Gerry Tye

"Silent Warriors" is a series of 13 shor...

10/05/2025

Happy Mothers Day...

To all of those that fill this role...

For the hours, the labour, the worry and the Joy...

For those that raise small beings that might not be their own...

For those that carry the heartache of what could have been but not...

For those walking with empty arms as their child is no longer part of this physical world...

Life is Smoke and Mirrors...

It is that moment of Blur in the slice of time we call our lives...

Children's are a fraction of that time...

We hope, they live, grow up, become decent adults and cherish those that helped them along the way...

This can be in sadness and joy... or a little bit of both...

Those that 'Mother' children of all sizes and ages carry humanity through on a blue pebble floating through space and time...

Your love is eternal, as is your sorrow...

Thank you for being You...

Wishing you the best of Mother's Day...

Gerry Tye

10/05/2025

Silent Warriors Documentary Mikayla Lo



Mikayla was diagnosed in 2017 at the age of 4...

She is still with us...

She still lives under the shadow of

Her parents are both medical professionals...

They share their experiences to help other new parents...

We need more funding and treatments for our children...

Support is very important...

You always try and make the best decision you can for your child at the time...

Gerry Tye

"Silent Warriors" is a series of 13 sh...

08/05/2025

Silent Warriors Documentary - Dr Mark D Souza... SonALAsense Sonodynamic Therapy (SDT)

Developing drugs for Orphan Paediatric Brain Tumour -

Activating the drug using Sonodynamic Therapy (SDT) using focused ultrasound.

Survival is longer and there has been return of functions, it is still phase 0/1...

It is a non-invasive way of treating brain tumours and other cancers...

"Silent Wa...