“Our family motto has always been, "Try different things", "Plan and do everything you can" and "SIU" (suck it up when things do not work). We moved to Australia purely as an adventure, we thought it would be good for the kids to get out of their comfort zone and adjust to a new way of life,” explains Ambika.
In September 2021 after complaining for a month about a small lesion on the floor of his mouth that was making it hard to eat anything spicy, Balaji was diagnosed with squamous cell carcinoma, an oral cancer.
Balaji had surgery in October 2021 where part of his tongue along with the lesion on the floor of his mouth was removed and replaced with a radial flap from the left arm. He recovered well after the surgery and was discharged in early November 2021. He then underwent 35 days of radiation needing a nasogastric (NG) tube for nutrition towards the end of treatment.
Sadly, in mid-May after several hospital stays due to facial swelling and resulting in an emergency tracheostomy, a PET scan and biopsy confirmed that Balaji’s cancer had returned.
The advice from Balaji’s cancer team was to either do nothing and enjoy the last few weeks with family or consider having chemotherapy and immunotherapy. Determined to explore all options the family was prepared to self-fund immunotherapy treatment after learning that Balaji was not eligible for it under Medicare as his CPS score was 0 (CPS or ‘combined positive score’ is a test used to help identify patients eligible for immunotherapy treatment.)
“After finding out that Balaji could not get immunotherapy under Medicare, we were prepared to self-fund treatment but were told that this could only be done as an outpatient.
“Balaji was too sick to be an outpatient and our preference was always to keep him in the public hospital system, the nursing and support staff were amazing, they had cared for him since diagnosis and knew him best.
“In order to get around the outpatient rule though we decided to try moving Balaji to a private hospital but they did not have beds to take care of tracheostomy patient and so he couldn’t be transferred.”
Tragically on 12 June 2022, only a few weeks after finding out his cancer had returned, Balaji died. His family was devastated that the outpatient rule prevented them from having the satisfaction of trying everything possible to bring him home.
“This was a case where Balaji and our family were fully aware of the risks, we had nothing to lose, we were able to fund the treatment but unable to purely because Balaji was not an outpatient. Where is the sense in that? I feel I could have had Balaji with me for some more time and he would have had the satisfaction of trying everything he could to come home to his family. What happened to Balaji and our family makes me unbearably sad.
“The Australian health care system has so many advantages and leads the world in so many ways. However, there are some issues that need to be called out and improved to better help everyone.
“Balaji never gave up on recovery no matter how long or how painful the journey. His goal never changed from healing and coming home. Balaji till the end was about trying everything that may help him.
“I’m sharing our family’s story because I would hate for other people to go through what Balaji did, which is not having the chance to try every avenue available to fight their cancer.”
Thank you for Ambika for sharing Balaji and your family's story.
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To learn more about Immunotherapy click here .