“By the time we took him to RCH, Ryder’s cancer had grown very aggressively,” Ms Grace explained on the family’s GoFundMe page. “It had spread to every part of his skeleton, much of his soft tissue and in to his bone marrow. He was in pain, everywhere.”
Ryder has since undergone seven cycles of chemotherapy, had a bone marrow transplant and spent most of the past 6 months in hospital.
But despite his positive response to initial treatment, neuroblastoma “is a notoriously recurrent cancer,” Ms Grace said.
“Even with this good response he has a 50% chance of relapsing, possibly even while still in the latter part of his treatment (we’ve been given one opinion that Ryder may be “as low” as a 30% chance to relapse, but this is an opinion only).
“Parents of neuroblastoma children live in fear of every sore limb, every fever, every suspicious symptom, and are terrified of what they might hear with each new scan.”
Ms Grace said their treatment options in Australia are exhausted if Ryder does indeed relapse. However, there is a trial in the US that could be lifesaving. The 12-month trial to test the vaccine is available at the Memorial Sloan Kettering Cancer Centre in New York and begins at a hefty US$160,000.
"Initial data...is showing a great deal of promise - significantly extending remission periods for children who have already relapsed and are therefore at a much higher risk," Ms Grace wrote. "Many are still with us today."
The family has launched a GoFundMe page to raise money for the expensive treatment and cover travel costs. You can donate to the page here.