This is a story about a Brainwave Child called Jack. Jack was just 3 years old when he became unwell.  His symptoms were  lethargy and vomiting, but as the second child in childcare with a big sister at school, it was diagnosed as gastro. But then it kept happening. He had lost weight and his skin was a grey colour. After the second trip to the ER he was admitted to his local hospital.

After many days in hospital, he became very unwell. His parents were told that if he started to vomit bile, they would have to take some action. Sure enough he did, and was transferred to Monash Medical Centre, where after 5 days they found out he had brain cancer.

His Mum recalls that night. She had no idea how long her son should have spent in the MRI – but after 3 hours – with Doctors running back and forwards – she finally learnt that Jack had  2 large tumours on his brain, and sugar coating – small tumours all over his brain and down his spine.

Just 2 days later they operated and partially removed one of his large tumours. The second tumour was too close to his pituitary gland and could not be removed. Jack lost his ability to see and couldn’t move initially. He could hear, and could make himself understood by his family.

From there the plan was to start chemotherapy. Just before the chemotherapy was due to start they had an emergency. His breathing stats kept dropping and another MRI discovered that the second tumour was growing so quickly that it was blocking his breathing signal. They had to do surgery to put in a shunt to help him breathe.

His Mum said “We asked, is he going to die? The Doctors did not say yes or no. We then asked to see Jack before the surgery but when we got to the room he was already gone”.

Thankfully the surgery did not go on for longer than anticipated. Jack started his chemo on life support.  Although Jack had a common brain cancer, it was very rare for it to be so aggressive, and also rare that there was more than one. It was high risk.

Jack’s family were never given odds, they lived from one moment to the other.

They were in hospital from July until February the following year. Jack had to relearn how to walk and talk.

Jack is a Hawthorn fan, and he was watching a game together with his family. His beloved Hawks were losing to Collingwood and Jack’s eyes started to tear up. This was the first sign that Jack had thankfully got his eyesight back (don’t worry the Hawks won the game!).

Jack was moved to the Royal Children’s Hospital, and underwent chemo with stem cells, to aid his recovery.

This was followed by 6.5 weeks of radiation. Jack was so little – he had to have a general anesthetic with every treatment. This caused multiple other medical conditions. The tumour on his Pituitary gland affected all his hormones. He had problems with his Adrenal glands and developed sodium based diabetes. This also damaged his growth hormones, and ability to produce steroids.

If Jack became unwell, he couldn’t fight it on his own, so his long journey in and out of hospital continued.

Jack left hospital in a wheelchair but he learned how to walk again, albeit very gaited. Putting on clothes by himself was tricky. He started at a special school, with nurses to meet his needs and this gave his parents comfort that he would be okay.

Then 2020 and COVID-19.

During the hard lockdown Jack had another setback. He could not move his left arm and both legs stopped working. An MRI revealed a stroke in his brain stem, and this has significantly affected his dominant left side.

“Our Jack does not do anything by halves,” said his Mum. Jack was in hospital for 85 days, and it was a “really horrible time”.

Still in the midst of curfew, even his Mum and Dad were restricted to single visits for 5 weeks before the restrictions were eased. Jack’s sister was not allowed to visit for the whole 12 weeks Jack was there.

Jack’s independence was completely gone. Having lost the ability to use his left arm, and only being able to take a few supported steps with his left leg, Jack cannot even use a walking frame. The wheelchair is essential for getting around.

Jack is now back at school 3 days a week, the other two days he is in therapy. His Mum is dependent on the wheelchair taxi  to take him to specialist appointments during the week. He is too heavy for her to try and lift into their car.

NDIS is yet to confirm funding to modify a car to accommodate a wheelchair.  The family car is too small however, and the family has to find a way to buy a new car suitable for modification.

This is where Brainwave comes in and it is only thanks to the generosity of really caring people like you that we are able to support children, their families and their special needs.”

You can change a child’s life like Jacks by making a tax deductible gift today.

#changinglivesmakingwaves.