The first shock for 17-year-old Theresa Hodapp is that it was bone cancer, not running, that was causing the pain in her leg.
"I was shocked and upset and I knew that my running season would be over and my life would be completely different," she said.
There was a second shock about her cancer treatment. While MD Anderson surgeons used the newest techniques to save her leg, the chemotherapies she got were old -- really old. One was used on children 40 years ago, and the new one was 20 years old.
"I was shocked. I started crying," said Theresa's mother, Kathy Hodapp.
"I wish there were more chemos out there. I'm hoping that one of these can be effective and treat me," Theresa said.
"In the last 20-plus years, there's been one new drug that's been approved for children with cancer," said Dr. Eugenie Kleinerman, head of the MD Anderson Children's Hospital.
Dr. Kleinerman says the FDA focuses too much on safety and too little on children's survival.
"To worry about that this drug may stunt the child's growth -- a dead child's not gonna grow either," Dr. Kleinerman said.
Take Theresa, she is getting only one new drug called Mepact. It's one Dr. Kleinerman helped almost 30 years old! It's not even FDA-approved yet because Dr. Kleinerman says the FDA contends it's not safe enough. But it's safe enough to keep kids from dying. Studies show Mepact reduces the death rate by 30 percent.
But now the drug, developed here and first used at MD Anderson in 1984, is approved for children in Europe and Mexico but not in the United States.
Theresa gets Mepact on a compassionate-use basis because she's in the hospital where it was developed.
"Anything to help me out, I was going for it," Theresa said.
"And that gives me hope. It gives me a lot of hope," Kathy said.
If more drugs for kids were out there, Dr. Kleinerman says they'd have more success stories like the survival rates for leukemia.
"We've made no progress in brain tumors, in sarcomas, in neuroblastoma, in myeloid leukemia," Dr. Kleinerman said.
To make progress, she challenges the FDA to change its rules.
"Have children and adults all begin, first in human trials at the same time. We would save five to 10 years!" she said.
Theresa has radiation ahead, and lung surgery to remove spots of cancer there.
"Saying our prayers and hoping that the radiation and the surgery will get it all," said Theresa's father, Stephen Hodapp.
Because old chemotherapies aren't likely to cure her.
On Friday at 8am, Dr. Kleinerman will ask a congressional panel in Washington, DC to find ways to speed up new cancer drugs for kids.
