Trent and Jaimee have endured a living nightmare for over a year, spending countless hours fundraising money for medication to save their five-year-old son, Jack, from cancer relapse and advocating for better treatment options in Australia.
Things were finally looking up. Jack, their youngest, had nearly completed his treatment for stage IV neuroblastoma cancer and the Freshwater family had surpassed their ambitious goal of raising enough money for his costly overseas treatment to, hopefully, prevent it ever returning.
But once again, much like when Jack came home with a limp from daycare just over a year ago, they received harrowing news from their doctor that would completely blindside them.
“Jack has, in fact, relapsed.” The words fell out of his mother’s mouth.
“The scans showed a couple of weeks ago that he has four new lesions on his bones.”
“Chemos hit him hard early, which we’re getting our head around again,” an exhausted father added.
It was just four months ago when Manly Observer interviewed the family of four to help raise $500,000 for a cancer treatment only available in the United States, which could significantly reduce the chance of relapse.
Jack has stage IV neuroblastoma cancer – a disease primarily prominent in children. It has a 50 per cent relapse rate, which means, in Australia, survival can plummet to as low as five per cent.
But the Thompson family had already endured too much to be affected by this. They have already learnt that hope floats.
“Hope is everything really,” Jaimee explained.
“We have to just work day-to-day. It’s the fight. We still have a fight. We just have to keep on fighting.”
“I think when we originally had the conversation with our doctors in the hospital about Jack’s relapse, it felt like there was little hope. And then when you look wider than Australia, you realise there actually are a lot more options available.”
“It is quite easy to take yourself down some dark paths, but that doesn’t work,” Trent continued.
“We have to just work day-to-day. It’s the fight. We still have a fight. We just have to keep on fighting.”
Much like the DFMO treatment which was only available in the US – and could halve the relapse rate of Neuroblastoma – groundbreaking treatments are reportedly happening in Europe.
Trent and Jaimee discovered a hospital in Rome which provides CAR T Cell therapy, a process involving taking a patient’s stem cells, re-engineering them and putting them back into their body, binding to cancer cells and killing them.
The procedure has an 82 per cent success rate, but it’s not compatible for everybody. Fortunately for Jack, this wasn’t the case.
“We found out on Friday, from a hospital in Rome, that Jack is a good candidate for CAR T Cell therapy,” Jamiee said.
“Our oncologist, the words that he used were like, Rome has cracked the nut.”
“We found out on Friday, from a hospital in Rome, that Jack is a good candidate for CAR T Cell therapy.”
And once again, there is another hurdle to clear.
“But… it is expensive,” she added.
Stepping into the Thompson’s Freshwater residence for the second time was not much different from four months ago.
It is your typical Northern Beaches styled house, conformed into a home by the quiet chaos of discarded toys and the muffled discomfort of a father and his eldest son thawing themselves out from a soccer match that all parties believed should’ve been rained out.
Tucked away between the wall and the couch, you could see but not find the youngest son on his iPad who declared not to be in the house. An order which was obeyed by all except the newest addition to the family, a black cat, which Trent ensures is a good luck omen, by Scottish standards.
“He’s sad about his hair, to be honest. This is the third time he’s lost his hair.”
“He’s sad about his hair, to be honest. This is the third time he’s lost his hair,” Jamiee explained to excuse her son’s dissociation.
Jack’s attitude is warranted. His cancer journey was seemingly ending. He was running around Freshwater, as he did over a year ago, but his new medication has caused him to slow down.
It’s obvious to see Trent and Jaimee are exhausted; who can blame them?
Despite this, much like the first time Manly Observer entered their home, we were welcomed by positivity and gratitude, eager to work towards a solution.
How does a couple maintain such hope through constant crisis? A few reasons, it seems, but one was clear as day.
“Our boys have always had a great relationship, our eldest Ted and Jack, but seeing them playing together and conversing. It’s very sweet,” Trent expressed proudly.
Not long after the interview commenced, six-year-old Ted joined Jack on his iPad in his fortress of solitude.
“The hard thing about cancer siblings is they really become the best friend of the child that has cancer because we really can’t see too many other people, given Jack’s immunocompromised state,” Jamiee explained.
“And Ted has just stepped into that role just so unbelievably beautifully.”
Ted not only faces the possibility of losing his only sibling but is continuously separated from his mother when she has to spend weeks at a time in the hospital when he’s unable to join.
Times of crisis are difficult. It’s a moment of untapped and mixed emotions, fuelled by conflicting decisions.
Ted’s behaviour is not unusual as the apple does not fall far from the tree. Spending sometimes weeks apart, as tough as it is, seems to have only strengthened the bond between Jamiee and Trent, a mother and father, who would unanimously do anything for the survival of their son.
“The strength that Jamiee continually puts into this, the research, the hard yards with hospitals, with Jack’s emotions, both boys, my feelings, the weight that is on your shoulders, I’m in awe,” Trent said.
“The fight that mothers have in them it’s a force to be reckoned with.” Trent turned to a teary Jamiee, placing his hand on hers. “Thank you.”
It’s no wonder the community backed this family to the extent they have.
The public has raised close to $600,000 through fundraisers, Behind the Bear campaigns, Rare Cancers Australia and GoFundMe.
But the family is not out of the woods yet. Jack still needs to recover from his four lesions, to continue to be a good candidate for the treatment in Rome.
Fortunately, the doctors have said the young gun is responding well to the medications, leaving the larger issue to be affording the rest of the overseas treatment.
“We have unfortunately had to adjust our fundraising goal to $700,000,” Jamiee said.
Around $550,000 would go towards the treatment while the rest is dedicated towards travel as they would need to visit Rome five times and live there for three months.
“It is really hard to have to come back out and ask for more again when everybody has been so incredibly generous. But we know that we have to do it in order to save Jack’s life,” Jaimee said.
“The worst possible thing that I could imagine is having to come home and tell Ted that the medicine that Jack has been having is not working for his little brother anymore.”
If you’d like to donate to a cause worth fighting for, you can do so here.
