WalkingYourWay

11/04/2026

Diagnosis Day....

Hi Dad...

Hi Talin...

You know that camera you got me...

I took a Selfie...

I know it's two days after diagnosis day, and things have changed for me...

I was running around last week and now I am not so much...

I have this special tube in my nose that feeds food and medicine into my tummy...

I don't know what is wrong with me, but are glad you are here...

You know I am a smart kid and I think this is something big...

I can see it in your face and hear it in your voice...

Sigh...

I know Talin... We will all do whatever we can for you...

I wish I could take your place...

Dad...

- This is one of the first times I have looked at these images -

The photos that Talin took himself to document what would be the end of his life...

Yes, there are more, including video and the response, even after 14 years is visceral...

There is no getting over the awfulness of Diagnosis Day, when your World crashes and burns when you love child is diagnosed with DIPG and will die in ~9.5 months...

At the time the treatment was radiotherapy and steroids...

Nothing else...

We didn't finish radiotherapy, and were shipped off to Bear Cottage Children's Hospice...

From today the 11th of April, till ~ 13 weeks was all we had left of this Brightest of Stars...

We all wonder how much do the know... and for all the children I have been involved in end of life over the years...

They know a lot...

They try and protect You from the hurt they see as they have caused you...

They are Selfless and Magnificent...

They inspire me to keep going...

I miss you and your brothers to the Stars and back Talin...

Plus a little bit more...

Shine on You Crazy Diamond...

Love

Dad...

05/02/2026

World Cancer Day...

It is something that effects everyone...

Themselves, someone they know or a friend or colleague...

If we can fix this terrible situation, we can save so many lives, make people so much more productive with good health...

Sadly Cancer in children has long and lasting effects that create long term problems for life...

We need to do better and use technology we have to do so...

Cancer can be Cured...

Funding and Research are Key...

Please support your local charity and foundation that does that...

Gerry Tye

30/09/2025

DIPG - Looking for the Positive...

What do you do when your child is going to die?

Talin was 5 years old when diagnosed in 2012... it was the 11th of April...

Talin would die in my arms on the 17th of July that year...

We didn't get the 9.5 months, there was no Honeymoon period...

We had ~13 weeks...

Talin is one of the worlds first live cell lines in at the Children's Cancer Institute...

And two people are seeing out of his eyes...

He asked me in one of our final conversations before he died...

'Can you make a difference...'

I try and do this with my work in the last 13 plus year working in brain cancer in Adults and Children...

I have created specialised DIPG groups and work with DIPG Support created by Paul Miller...

We have groups that cover: Support: Research: Parents Only, Angels and Adults...

Our groups are FREE and Active...

We look after over 13,700 people a day now and it is sadly growing...

Our groups are referred to by most major foundations around the World...

We try and make a difference...

I would like to thank all the medical researchers that try and make a difference to all our cohorts over the years...

Without you we still would be nowhere...

It is boots on the ground, get out there and do something, anything...

You never know when it will cause change that is effective for all...

Childhood Cancer is not a month, a year or a day...

It is a lifetime...

Our children were supposed to be a lifetime too...

Lets make it worthwhile...

Gerry Tye

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

07/09/2025

It's Father's Day in Australia...

For some of us this is a celebration, for some a difficult almost impossible day...

Father's are the generally background hero's in the relationship...

Of course there are the good and the bad ones...

But lets focus on the ones that are there...

Are Present...

Listen, care and hold you when you need it...

Sadly when they lose a child to distance, estrangement and the terrible aspect of death...

They break, sometimes a little, sometimes a lot...

Do we see it...

Probably not...

Father's care just as much about you...

They may not show it so much, but they are just as fragile as anyone with the most important people in their life...

You...

Please spare a thought or a hug for those Dad's that suffer in the Silence of Loss...

You are their greatest achievement in life...

You keep them alive...

They Love You...

Even when you are not there...

Even when they are not there...

Special Hugs to the Father's that have lost a child...

There is nothing worse...

Gerry Tye

05/09/2025

Wearing the Ribbon is great - doing something is Better...

I was reading a post about this recently and that was the general message...

Sure Awareness is a good thing, but getting involved is what truly makes a difference...

Being in the Adult and Children Brain Cancer Arena for the last 13 plus years has taught me that boots on the ground has the most effect...

Volunteering for a Cause is a great way of helping it...

There are so many ways that will cost you very little and sometimes it gets noticed...

Through the many and variety of Groups / Organisations I do work with includes Cancer Voices, Brain Tumour Alliance Australia (BTAA), Rare Cancers Australia, our own Worldwide groups are just some of the few...

I don't do it for the recognition...

I do it because I made a promise to my son, just 6 year old, Talin to make a difference days before he died from ...

So...

Please support your Cause...

It can be in anyway that makes a difference...

If you can lift a feather weight off someone in need - you have achieved an amazing thing...

So wear the Ribbon, and then put it into action...

Pictured: The Hon Mark Speakman leader of the opposition for NSW Australia and some guy trying to make a difference...

Gerry Tye

01/09/2025

It is the 1st of September and importantly - Childhood Cancer Awareness Month...

Why is this important?

Without Children here is no Future...

We are their Voice in all things especially in the Medical Arena...

They depend on us, as one day we might them...

For Rare Diseases such as they have no one except us...

For parents looking after a sick child all we want to do is see them get better...

In Cancer there sometimes is No Better...

In Cancer there is long term side effects from the disease and the treatment...

We carry our Children through life and sadly sometimes in death...

Learning how to treat these diseases helps Adults with Cancer as the treatments are different and can have an effect in adult studies...

Adult Clinical Studies do not apply to children...

The cohort is different as well as the developmental milestones...

Children are the Gold in our Lives - Wear the Gold Ribbon...

They are our most Priceless Gifts...

I hope that you don't lose yours...

Please do what you can for Childhood Cancer Awareness Month...

We need more than a Month...

Childhood Cancer is relevant every Single Day...

Gerry Tye

17/07/2025

Hi Talin...

Hi Dad...

We are here again...

The day you Died...

It has been 13 years since you died in my arms from Brain Cancer...

13 weeks before you were enjoying Easter at home with your brothers and Grandma...

I remember the chocolate cake smeared across your faces...

The concern as my alarm bells were ringing that there was something wrong...

I couldn't put my finger on it...

No one could...

In 2 days time you would be in Sydney Children's Hospital...

In 6 weeks you would be at Bear Cottage Children's Hospice...

7 weeks later I would be holding you as you died...

In the middle we escaped with your brothers, down to Cronulla Beach for fish and chips...

You were happy to sit in the sand and feel the earth under your feet...

It was a warm night...

Other kids were playing on the swings and laughing with each other like life would last forever...

Sadly, I knew it was not for you...

There are not enough grains of sand on the beach to count the times that I miss you and wish you were here...

These sandy moments in time are just there...

In that instant...

For you and my memories...

There were worse things to come...

But in that moment you were content...

I wish I could hold onto that...

But the sands of time drift through my fingertips...

As you drift away from the memories of those left behind...

Sadly it seems like the brightest lights go out in life and memory...

I will Always See You...

Wishing you were here Talin...

Loving you to the Stars and Back...

Plus a little bit more...

Love

Dad...

Missing you too dad...

I watch from afar and see the work done in the DIPG Community and are thankful you and your friends are there to help so many come into this journey....

Love you too...

Talin...

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...