“I found someone who loved me, I rediscovered my passion for music, I had plans for my life and my partner (Chris Gaenssler) and I were planning to move in together.
“The year looked so promising for me.”
Ardmona’s Johnathon Bentancourt, 23, is describing his plans for the year ahead.
Plans that were abruptly and tragically changed when doctors told him late last year that he had only a few months to live.
“On December 21, 2019, the doctor said, ‘I am so, so sorry but there’s not really anything we can do anymore’,” Johno said.
“They told us we should start looking into palliative care and that I have about three months left — if even that.”
Johno’s story starts in July last year when he found a growth on his neck, which turned out to be a rare type of cancer called Burkitt's Lymphoma.
“The doctors thought it was just a cyst and told me to keep an eye on it,” Johno said.
“But then it grew to the size of an orange and in September I began feeling extremely unwell,” he said.
It was only when Johno could no longer stand that he went to a Melbourne hospital emergency department — just days before his 23rd birthday in September. A doctor treated him and knew something was not right and “it just wasn’t a cyst”.
Johno stayed in hospital for three days and underwent endless tests before he was diagnosed.
“We felt so sorry for the poor doctor who had to tell us,” he said.
Hearing that he had a rare and extremely aggressive cancer was unimaginable but at the time the news came with a silver lining.
While his cancer is one of the most fast-growing types, it usually responds well to chemotherapy.
And because of its aggressive nature, Johno and his family had no time to ask questions. Within minutes he was being poked and prodded so treatment could begin.
“They said to ‘forgive us, as we will start treatment now and we will explain what’s happening while we start your treatment’,” Johno said.
The chemotherapy was so intense that Johno was only able to receive it once.
He was not able to have a second dose because his organs would fail.
And while the lump disappeared, weeks later it returned, which meant Johno was given a new type of chemo.
It was an experience his mum, Terri, said was difficult to comprehend.
“We were sitting there and the nurses were coming in and out all the time and I said to Mel (a nurse), ‘You guys are really busy today’,” she said.
The nurse told Terri the level of care was increased for a ‘high needs’ patient.
“I said, ‘The poor family, it must be so hard for them,” Terri said.
“Then she looked at me and said, ‘Terri, it’s Johnathon — he’s really sick’.”
They were right — and in October, 2019, the Bentancourt family almost lost Johno.
He was rushed from Shepparton to Melbourne — his body was septic and doctors feared his organs were failing.
Terri said one of the nurses told her not to panic as she pressed “the button”.
“That’s what you press to make not only every nurse that is available come running in but every doctor, too,” she said.
“A member of the spiritual team also come in.”
Nurses had to press the button three times that night.
In four months Johno would receive three different types of chemo and radiation treatment.
One pumped through his body for 94 hours straight.
Pain management included morphine, a cocaine-based mouthwash and ketamine, just so he could cope.
Johno lost more than 20 kg because he could not eat or drink.
His throat was covered in ulcers and deteriorating while his liver was starting to fail.
Eventually the lump disappeared again — only to grow back within weeks.
Doctors reassessed Johno’s cancer before Christmas and discovered it had formed an extra mutation that stopped it responding to treatment.
“Not only did we get struck by lightning once, but we got struck by lightning twice,” Johno said.
“The top cancer doctors in Australia had never seen this before."
Now Johno and his family are hoping for a miracle.
Doctors are searching for experimental treatments and/or clinical trials overseas because his cancer is ‘one in a million’ and there is no data about it or any clinical trials in Australia.
Johno and his family are in need of two things — time and limitless funds.
A deposit for an overseas trial costs $100 000 — and even then, trials can take weeks to get into.
Johno is waiting to hear whether a drug company will give him treatment that could buy him more time.
If he gets more time he will use it to find a clinical trial in either Israel or New York.
But the treatment alone costs $10 000 and if it does work, he will need treatment for a few months before the clinical trial can start.
Terri is fearful of what that could mean for Johno.
“We are at the point where we have these options but they are all very expensive and far away,” she said.
“When I think of him going away I think what if he gets really sick and he can’t come back?
“It’s one thing for us to lose him but for us to lose him and for him to be all alone ... but at the same time how can we not take that chance and risk?
“We know we are out on a limb here, but we have to try.”
But Johno’s family know they cannot do it on their own and they know that asking for help is Johno’s only chance at survival.
The family has set up a GoFundMe page to help fund Johno’s treatment. While they have found it heart-warming people want to help, it has been difficult to ask.
“We knew we were in for a hard road in September but it’s absolutely unbelievable to think where we are at,” Terri said.
“And sometimes we forget.”
A Day on the Field — Johno’s Fundraiser will be held on Saturday, February 15 at location yet to be announced in Ardmona.
“Although I’m okay and well now, the cancer is fast-growing,” Johno said.
“My partner’s biggest fear is that he will wake up and roll over and I won’t be there anymore because my heart has given in.”
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