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Helping Johnathon Bentancourt

Helping Johnathon Bentancourt

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On September 4, 2019 I was celebrating my 23rd birthday, mum by my side having a biopsy of my neck at the Royal Melbourne Hospital. That last visit to the RMH a doctor who's name I don't remember probably saved my life.

On September 4, 2019 I was celebrating my 23rd birthday, mum by my side having a biopsy of my neck at the Royal Melbourne Hospital. I'd had an average June to September, I could not shake the flu, cold and laryngitis. To top it off a lump had started growing on my neck, it went from an inflamed lymphnode to the size of a grapefruit in in just a few weeks. I'd had an ultrasound and CT scan and they suggested it was a cyst.

That last visit to the RMH a doctor who's name I don't remember probably saved my life.... she said I had the mumps, even though she knew I didn't but was worried about my lump.

The ultrasound technician announced within seconds, this is no cyst.

The next few days were a whirlwind. We were called back in and told I had Burkitt's Lymphoma, highly aggressive but very responsive to treatment, they said. They had booked scans and tests for the following day. We had planned to go to my Aunt's engagement party in Sydney for one last family fun function before reality set in. The day came and went, and we were almost out the door... then the phone rang "you need to come back to Peter Mac, treatment needs to start now".

Mum say's that she is grateful we listened or now, 7 months later she would be wondering if that one weekend is why they say I only have months to live.

The chemo treatments didn't work, my liver and kidney function shut down, from September to November I might have been out of hospital for 5 days.

When the first round affected me so badly, they did some more tests.

On 22 December 2019, I was told there was nothing else the Australian system could do for me and I had 3 months to live.... to top it off I also had a rare mutation TP 53 making my cancer chemo resistant.

I'm not ready to die, I'm not quite done.  In 2019 I just started to get settled.  I met my partner Chris, we had started talking about living together, I want to go back to University and study music...my second love, I want a costco membership.

Chris did some reading and found the CPI-613 study in the US. We are heading there on 9 March. The intial deposit is $50,000 to $100,000 USD with the total cost of treatment and accommodation exceeding by thousands. I'm not allowed to go on my own, and my mum needs to travel with me. 

We are sharing my story because we can’t do it on our own...we need help, I'm just not ready to call it quits yet

Thanks to our supporters

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