Jaimee, Trent and their sons, six-year-old Ted and four-year-old Jack were living the typical life of a young family in Freshwater.
Ted was starting school, Jack was watching old-school Scooby Doo cartoons and having fun in daycare while the parents were just getting into the swing of raising two young ones.
That was until Jack was diagnosed with stage IV Neuroblastoma cancer.
So far, Jack has successfully fended off the cancer, leaving only a few cancerous cells in his bone marrow, but with Neuroblastomas’ 50 per cent relapse rate, the fight is far from over.
The family has started a GoFundMe which has amazingly already seen over $80,000 in donations in just eight days, but it’s still a far cry from their goal of $500,000, which is crucial for the expensive treatment currently only available in America.
Jaimee and Trent initially noticed something wrong with Jack when he came home from daycare with a limp last April.
The pair took him to multiple doctors who mistakenly gave their son antibiotics to counter what they thought was a virus due to his spiked fever.
But the grim reality of their situation soon set in following screams in the night.
“He woke up one night, actually, he didn’t wake up, he was screaming.
“I thought he was having a nightmare and I said to him, it’s okay Jack, it’s just a nightmare and he said, no mummy, I’m hurting,” Jamiee retold.
The couple called an ambulance and after a series of tests at Sydney Children’s Hospital they were delivered the terrible news.
“Four doctors walked into our room to let us know that he had Neuroblastoma,” Jaimee said.
Trent continued explaining the diagnosis, barely able to make the words leave his mouth.
“It found a, they found a primary mass around his kidneys, and then yeah, sitting in a room where…”
“To sit there and hear the extent of cancer that he had at the time was, we were just numb,” Jaimee finished explaining.
Neuroblastoma is cancer that starts in early nerve cells called neuroblasts, they soon grow into cancer cells that form into a tumour.
Almost all cases of Neuroblastoma happen in infants younger than 5 years old and around 40 children are diagnosed with the disease every year in Australia.
The cancer usually originates in the adrenal glands just above the kidneys affecting heart rate, blood pressure and other crucial functions.
For Jack, a large sized tumour was discovered above his kidneys, it spread to his lymph nodes, bone marrow and his bones.
The toddler endured eight rounds of chemotherapy with tremendous success.
“His primary tumour started off the size of a grapefruit and it was reduced basically to the size of a grape,” Jaimee said.
“All of the bony cancer that he had has all gone, and now he just has a few cancer cells left in his marrow.”
Jack will start immunotherapy next week to hopefully clear up the remaining cancer cells in his bone marrow.
Unfortunately, even if the treatment is a success, Neuroblastoma has a 50 per cent relapse rate that can plummet the chances of survival to just five per cent.
There are drug options that could half that – but they are expensive and only available in America.
Jaimee and Trent have not given up hope and are fundraising as much as they can to achieve their goal of $500,000.
“We’ve set up Behind the Bear Campaign, we’ve always called Jack, our baby bear.
“We thought if we set up a campaign around Behind the Bear a Fight for a Lifetime, which was really designed to be twofold, one, our bear and getting the money for our bear, but also to help raise awareness for all the other bears that are behind him that need treatment,” Jamiee said.
The family has also started a GoFundMe that has raised almost $83,000 in just eight days.
“I think we’ve looked every day and just cried really, because we’re just so humbled by the support we’ve had effectively by our local community and family and friends… it’s given us so much hope” Jamie said tearfully.
“It’s through the power of the people that we have this fight for Jack,” Trent added.
They’ve also partnered with rare cancers Australia, to enable tax-deductible donations as well as taking a hands-on approach, setting up local events such as a corporate golf day at the end of May and casino nights and Brewery Bears Days.
A gala ball will be held in mid-June where many items of value will be auctioned off, including a painting from local artist Fiona Chandler, who had a helping hand from Jack and his older brother Ted.
The multiple fundraising efforts are far from excessive, due to the extremely expensive nature of the treatment.
DFMO and the Bivalent Vaccine have been tried and tested in the States, in December 2023 the Federal Drug Agency approved DFMO to treat Neuroblastoma.
The drugs decrease the relapse rate of the cancer to 25 per cent and are trademarked under the name IWILFIN which represents the two boys, Will and Finn, who survived as a result of the treatment.
Dr Scholler, who is the leading doctor for the treatment, operates from Penn State University Hospital.
The vaccine is available at Memorial Sloan Kettering in New York City, the leading hospital for Neuroblastoma global treatment.
For DFMO treatment two daily tablets are to be administered to the child, while the vaccine needs to be reapplied 6-7 times, both over two years.
The constant expensive drugs paired with the multiple trips to the US for treatment are what make the $500,000 fundraising goal by the family necessary.
The faster the family can raise money for treatment the sooner they can go back to enjoying those important years of development.
Young Jack should’ve been enjoying those special times in early life, making new friends in daycare and experiencing all the world has to offer for the first time, instead, he has spent the last nine months undertaking gruelling cancer treatments.
But not without a brave face.
Jaimee and Trent expressed the tenacious attitude their toddler has exhibited throughout his treatment.
“It’s sort of hard to encapsulate all that Jack is, we’ve always called him crackerjack, because we’ll never quite know what you’re going to get,” Jamie said.
“He’s got a tendency, in a comical way, to fire doctors – Toby who’s the head oncologist had to write himself up to be fired as well,” Trent laughed.
But Jaimee was quick to contribute to Jack’s sweet side too.
“He also has a beautiful caring nature to him, he loves to share.
“Not long after he was diagnosed he got really upset one day because he thought that his friends at daycare might be missing out on the books he used to take, so we went in one day and took some books into his friends so they wouldn’t miss out.”
Jack’s older brother Ted has played a huge role in supporting his sibling through this troubling time.
“His brother is the best big brother ever!” Jaimee said.
“He comes into hospital and sometimes he’ll sit with Jack and he’ll watch the treatments that Jack’s going through and give him brotherly support.
“Jack and I have been in hospital for six months, so Ted’s been without his mum and his brother for really long periods of time, and his level of maturity and strength has been amazing.”
