Hunter Pietrowski has an aggressive form of brain cancer -- that's spreading.
Hunter's mom, Tiffany Pietrowski, took the family's battle to Facebook right after she received the news from doctors at Duke Children's Hospital that the state Medicaid office was refusing to cover Hunter's treatment.
Mother of this Wake Forest teen holding out hope state reverses decision to deny him a potentially life-saving brain cancer treatment. At 11 pic.twitter.com/sMmY03OgDq— Joel Brown (@JoelBrownABC11) October 21, 2016
"This cute little boy right here -- his life is worth it. His life is worth the cost of the stem cells," Tiffany said in the video post she recorded with Hunter in his hospital bed.
Hunter was diagnosed in June with Medulloblastoma.
Doctors successfully removed a golf-ball-sized tumor from his brain. But the cancer was so aggressive-- it had already spread to Hunter's spine.
Hunter's parents say Medicaid initially approved Duke's treatment plan for Hunter -- including aggressive radiation and chemotherapy. The plan requires regular stem-cell therapy so Hunter's 80-pound body can bounce back quickly enough for the faster rounds of adult-dose chemo.
"So we said, OK, that's our best bet. Let's go, let's start," Tiffany Pietrowski said.
But Wednesday, Hunter's parents say Medicaid reversed course.
"We arrive here yesterday afternoon for his first round of chemotherapy and we were notified that Medicaid is not currently going to cover his stem cell recovery," said Hunter's dad, Adam Pietrowski.
Tiffany Pietrowski received an email from Duke, explaining the state Medicaid's office decision for denial. She said Medicaid calls the stem-cell treatment "experimental" and "unnecessary."
But Hunter's doctors tell her that without the stem cells, the boy's success rate drops from 70 percent to 30 percent.
"A 40 percent jump to me is crucial. He's 13, I don't want to see his rate drop. I don't want to see him die," Tiffany said, barely holding back tears.
Father Adam agreed.
"It's got to be all or none," Adam Pietrowski said. "You can't do half of the treatment and not do the other half. You've got to do the whole thing for it to work."
ABC13's sister station ABC11 was unable to reach representatives at the state Medicaid office because of the late hour. They wanted to know exactly why the treatment is not covered. And how much Medicaid would have to pay for it.
Meantime, Hunter's parents are reaching out to state lawmakers for help. And at the same time, they're comforting their son -- hoping for a change of heart.