I was hoping you could help me get my son’s story out to the world. On the 26/8/2020 , my 5 year old little boy was diagnosed with a cancer called neuroblastoma. It’s on his right adrenal gland, and wraps around very important arteries in his kidney and leading to his heart. My son’s cancer is inoperable and is categorised as a stage 3 cancer.
My son has already received his first round of chemotherapy and will have at least 3 more rounds followed by surgery and radiation. This chemotherapy doesn’t come without risks to his kidney, liver and heart function. My little boy has a complicated form of Neuroblastoma in the form that it is growing like a low grade tumour, but it’s genetics are that of a aggressive one. It is pressing down on his kidney and up on his liver causing him pain.
My partner and I have both had to leave our jobs and travel over 300km to the nearest hospital that does paediatric chemotherapy, leaving behind our home and jobs. We can receive some treatment at our nearest local hospital, however they do not do paediatric chemotherapy – our own capital, Canberra hospital, does not do chemotherapy..
I have had to leave my job permanently and it’s possible my partner may have to as well, he’s working when he can, but appointments complicate that. Our income has split in half, receiving only $130 a fortnight in carers payment. Due to me previously being in work, we’re not ‘eligible’ for any crisis payments.
To add to this ordeal, we have also been advised that our home needs extensive repair as the house is separating in half due to an expansion joint sinking. We currently live in public housing and despite our extensive issues with our house, have had next to no help or support getting our house fixed. Due to this we, on top of our son needing chemotherapy, may need to relocate.
We have created a GoFundMe fundraiser and a page called ‘William’s journey through Neuroblastoma’ we would really appreciate help getting word out as our family desperately needs help. I’ll link the pages below if you feel like reading more about our story.