Leisl Stone made the mistake of asking the surgeon what her toddler son, Jayden's, chances of survival were following the removal of brain tumor earlier this year.
"Do you really want to know?" the surgeon replied. Jayden, at 18 months, was beginning a battle against a form of pediatric cancer so aggressive its survival rate is less than 10 percent. Leisl and her husband, Danny, of Perth, Australia, felt sick themselves as they watched the chemo drugs bombard their third child's tiny body following the surgery. He contracted meningitis and neared death, but still the chemo had to continue, lest an errant cell left after the surgery push the cancer back into the forefront.
Then it was time for radiation. Leisl wanted to know the side effects of radiation coursing through his developing brain. "He'll need an aide at school. He's not likely to graduate high school. He won't be able to process math," Leisl remembers the radiologist in Australia telling her. He'd likely need hearing aids. His vision could be damaged.
But the worst news from the radiologist was yet to come. "She said, in not so many words, that none of that's your concern because he won't live long enough to see the side effects," Leisl says.
Danny and Leisl were horrified.
After scouring the Internet, Leisl came to the conclusion that Jayden needed proton therapy. Proton therapy is a form of radiation that targets just the specific area where the cancer is, while minimizing the damage to the surrounding tissues. For someone like Jayden, whose tumor was buried deep within his brain, protons offered the chance for the radiation to get to the remaining cancer cells while not damaging the surrounding brain like conventional radiation would.
Unfortunately, proton therapy isn't available in Australia, so the search led the family to the CDH Proton Center in Warrenville, one of only 10 such centers in the United States. Recently, as Jayden underwent a daily round of proton therapy, Chicago Parent documented their child's fight for life.
Danny and Leisl want others to bear witness to the indomitable spirit of the spunky toddler from Australia.
"I can't let myself fall down," says Danny, "when he continues to stand up. He leads the way."
Below we've included a slideshow featuring a timeline of one
of Jayden's hospital visits. To view the captions that go with each
photo, click 'show info'.
Liz DeCarlo is the senior editor at Chicago Parent.
See more of Liz's stories here.