Ben
Imagine heading overseas on the trip of a lifetime with your four children, to have them spend Christmas with their grandparents for the first time – and within days your three-year-old son is diagnosed with cancer and you have no hope of ever returning home.
This was the experience of Australian-born Peter Morris who had met his wife, Melanie, in the US, and who was raising children Sam, Madeleine, Ben and Alexandra in Costa Rica in 2017.
“We were here at the end of 2017 for a three-week trip to see my family,’’ Peter said. “I grew up here, and my parents and my sister and extended family are still here. It was the first-time our kids had experienced an Australian summer. During all those plans we had for Christmas, seeing fireworks and hanging out with family and that kind of thing, it became increasingly difficult, because Ben was having these unexplained vomiting incidents.’’
On Boxing Day, they took Ben to hospital. He made a quick recovery, and his parents were embarrassed to have taken him there.
“Then by the middle of January, we were back at hospital. Within 24 hours, we'd been moved to intensive care, and Ben looked to be the sickest kid in the hospital. About a day later, we went into a conference room in intensive care where they told us that the scans were showing that he had cancer.’’
Ben was diagnosed with Burkitt’s lymphoma, a rare and highly aggressive cancer which can develop in a matter of days.
Learn more about Burkitt’s lymphoma here.
“What we saw when we looked into Burkitt lymphoma is it's the fastest growing human tumour,’’ Peter said. “So, to us it was like the Usain Bolt of cancers. But we were being told that was a good thing. It grows fast and chemotherapy is something that works on the fast-growing cells. Still, it was going to be a really aggressive and difficult form of treatment.’’
Over the next six months, Ben was in hospital for 96 nights. Sometimes he would be on chemotherapy for 22 hours at a time, over a five-day period.
“A lot of people have some exposure to someone receiving cancer treatment, but each cancer is so different, distinct, unique. For Ben, unlike a lot of the cancer treatments that we'd seen in our family or friends that had had cancer, there was no break. There was no respite for him.’’
Ben went into remission after six months, but Peter says nothing was ever the same. Their oncologist, Dr Luciano Dalla-Pozza, who is on the Board of Children’s Medical Research Institute, said it would be preferable they stayed in Sydney under his watchful eye.
“If the cancer were to come back, there's no additional medicine that's being held up the doctor's sleeve, there's no there's no other alternatives. And so basically, the cancer is aggressive. If it comes back, it's really dire, medically speaking.’’
It is the uncertain nature of cancer which has inspired the family to become part of this year’s Jeans for Genes campaign to support the work done at Children’s Medical Research Institute.
“When a family gets a diagnosis of cancer, when you hear those words like we did, ‘your kid has cancer’, there's nothing else you can do. There's a binary question in your mind – ‘is my kid going to survive or not?’ And the research that has been done 5, 10, 20 years before, that is the only hope that you have for your kid's survival. And it's the only thing that matters, right?
“For us, it was the brave decisions of parents of kids who died from cancer as well as kids who'd survived cancer, contributing to and supporting research. It was policymakers and school kids. It was whoever that said they wanted to support research that had built that foundation, so our little boy's doing well today.
“So, for us, research is critical. I think one of the defining memories of my life now is that moment receiving the diagnosis that Ben had cancer. And one of the things I'm most thankful for is the investments that other people made before us.’’
The family were the first they knew to go into voluntary isolation, when COVID-19 broke out, making sure their four children did not leave their property to protect Ben’s suppressed immune system.
“There's almost this line in our lives between when we received that diagnosis and after we had it. And so, in small and big ways, we've changed a lot as a family. And that diagnosis was a game changer for us in terms of the future.
“Like my family’s crisis in 2018, I am convinced the COVID-19 crisis in 2020 is a moment that we will all remember for the rest of our lives. So will our kids. Our family’s journey was a moment of clarity. We realised that some things we obsessed about were completely unimportant (like the latest drama at work). And we saw clearly there were precious things in our lives we easily overlooked (like the gift of time with our kids). Many people made sacrifices to love our family during our crisis and we will never forget it.’’