Login
Login

Max’s Cast for a Cure

By Naomi Kirby

Sadly Brain Cancer kills more children than any other disease

Max was the most beautiful gentle natured boy we could ever have wished for.

Born in August 2015 he was the apple of our eye. So healthy, so vibrant. Met all his milestones. There was no reason to think anything would ever be wrong.

He would just light up the world with his big grin, laugh and cheeky nature.

At 19 months old he was very much running around and loving life.

A few restless nights happened which we put down to teething. He wanted to breast feed more, and was waking up more frequently. He was clingier during the day, but nothing too out of the ordinary . He was still happy, eating, drinking and smiling. Then very quickly he had trouble walking and was holding onto the couch and coffee table to get around. Soon he didn’t want to walk at all and could see his right foot was not functioning properly. We could also see it was hurting his neck to lay down to change a nappy - but still smiling as always.

We took him to a paediatrician who luckily sent us for a MRI pretty quickly. And before we knew it our world came crashing down and we were told our son has a brain tumour the size of a lemon around his brainstem.

Please Support My Cause

Raised

$161,070

Select amount to donate

$25
$50
$75
$100
$
Donate

All payments are secure & encrypted

My Achievements

Fundraising page

Updated Profile Pic

Added a Blog Post

Received 5 Donations

Reached Goal

Increased Target

My Updates

And before we knew it our world came crashing down and we were told our son has a brain tumour the size of a lemon around his brainstem.

Friday 27th Feb

We will never forget being taken into that small room to be told our beautiful perfect son had Brain Cancer - an Ependymoma.

Friday 27th Feb

That day was completely soul shattering and will haunt us forever.

We were in disbelief. Max was so healthy, hardly ever got sick, ate all the best foods - he was just running a couple days ago. We did all the right things to make sure he was as healthy as possible. How could this happen? An immense amount of guilt hit us. What did we do wrong?

We were transferred to Melbourne where he had surgery, but unfortunately couldn’t get much of the tumour out. We were told it was like tentacles around his brainstem, and another surgery may not be on the cards.

We travelled interstate to another surgeon who managed to get almost all of the tumour out. It looked like all of it was removed but when we returned to Melbourne for a post op MRI there was a tiny piece left sadly.

It wasn’t safe to get the rest as it was at the very front of his brainstem.

It was recommended we went onto radiation - and they believed this would get rid of this last little bit.

Max had the standard treatment for Ependymoma which is surgical resection and radiation.

Friday 27th Feb

Max had the standard treatment for Ependymoma which is surgical resection and radiation. Chemotherapy hasn’t been shown to be effective for Ependymoma over the years. He had to be tube fed for 5 months, and had to learn to walk, talk and swallow again - he really started getting better when he got home to Darwin after treatment - home is where he loved.

He had 3 wonderful, magical cancer free years after this time and thrived in every way possible. He welcomed 2 little sisters who he absolutely adored - he was a dream big brother doting over his sisters. He went to preschool and lived a very normal happy active life. Loved the outdoors, nature, animals, fishing, friends, family, play dates and holidays.

When Max was 4.5 years old his tumour returned in the original area after complaining of neck pain. He had a safe full resection of the tumour and it wasn’t recommended he have further radiation or treatment, but instead a watch and wait approach. We had been told Ependymoma was mostly a surgical disease and when we got it all out the second time we thought we might have a chance of beating it.

He recovered very quickly and was thriving again in school - becoming more confident every day.

He celebrated his 5th birthday and was looking forward to starting school the next year - we were so proud of all he achieved despite his setbacks and couldn’t wait to see him in a school uniform - what a milestone.

But sadly, he never got there :(

Friday 27th Feb
In December 2020 we noticed Max’s right arm was going weak and he couldn’t lift it up anymore and his right shoulder was dropped - through all this he never complained and was still smiling and dancing. We had just been on holiday to Hamilton Island and he was just so happy - we were all so blissfully happy.

Then tragically the MRI showed it had spread into his brainstem and spinal cord that couldn’t be removed. After an unsuccessful surgery we were told he would only have a few months to live as it was so invasive in his brainstem.

There was no other treatment or trials offered to us. There was one available interstate, but the team didn’t believe it was worth putting Max through and moving him away from home as it wasn’t showing much promise.

His genetics showed no targetable mutations, and there is no immunotherapy available for Ependymoma in Australia. I tried to ask for the trial available interstate to be given to Max locally in Darwin, but it couldn’t happen.

I was astonished to hear what treatments were available for Ependymoma overseas and not in Australia - we felt really let down.

Who was going to fight for him?

Reality is though the standard of care of surgery and radiation hasn’t changed in 30 years.

Friday 27th Feb

Chemotherapy hasn’t shown to be that effective for Ependymoma. And then at relapse there is no effective treatment options available.

Max couldn’t be re-irradiated as we were told he had the maximum amount, and the risks were too high radiating near the brain stem.

There are 9 different types of Ependymoma and sadly Max had the most aggressive. Posterior fossa type A. And it’s incredibly difficult to treat.

It is incredibly heart breaking that in this day and age in 2023 there was so little we could do - we felt completely helpless and just felt like all we kept getting were dead ends - with no hope.

I called people all around the world and they said the same thing. We could take him overseas for a clinical trial but he wasn’t well enough to travel that far at that point.

Our son took his last breath at home on Mother’s Day 9th May 2021 at 5yrs 9months.

He had walks in his trolley in the garden that day, had his favourite meal fish and chips - then that evening said I love you mummy - lay down to watch a movie and never woke up again - we read his favourite book Tiddler by Julia Donaldson during his last breaths. By the time we finished, he was gone.

Our amazing vibrant boy was no longer.

Our lives have never been the same since.

Friday 27th Feb

Sadly, Brain Cancer kills more children than any other disease. I just want to shout it from the rooftops, we desperately need change.

Max absolutely loved fishing and we wanted to start something in his honour so our beautiful courageous boy would never be forgotten with also the goal of raising money for Brain Cancer Research and to help NT families going through the same.

We started Max’s Cast for a Cure Fishing Competition in Darwin which we have run for 2 years. We are pleased to donate this year 40k to the Brain Cancer Centre in Max’s honour to Misty Jenkins lab with a focus on Ependymoma.

We chose the Brain Cancer Centre because of the incredible work Misty and her team are doing with Car T therapy for Ependymoma. We really want to see some sort of change that can soon be applied to children fighting this disease. Something needs to be done and soon.

Max was the most beautiful son, big brother with the kindest most gentle soul. He radiated love and happiness. He never once complained after all the things he went through - always had a smile on his face and was dancing until the day he passed away. Our hearts are so so broken he is no longer with us. He is so incredibly missed, and we feel shattered this happened to our family. We have a Max sized hole in our hearts now he’s gone.

No family should ever go through this tragedy, and we hope to make some positive change to help change the statistics for Paediatric Brain Cancer in Australia.

The Kirby family and Max’s Cast for a Cure

Thank you to my Sponsors

$161.07k

Opening Donation