Your children are playing outside. You hear a car’s tires screech on the street. And for a few minutes, until you locate all your children, the world moves in slow motion and your body is numb.
For the last two years, that is how six-year old Olivia Anagnostopoulos’ parents, George and Jessica have felt. In July of 2013, after a few months dealing with stomach aches and fevers, Olivia was diagnosed with Ewing’s Sarcoma, a rare pediatric cancer.
“This has been emotionally devastating for the family,” George said. “It’s something you never want to experience. We are in that constant panic mode that never stops. You’re always scared that this is going to take your daughter’s life.”
Although the Anagnostopoulos family has tried to remain positive with Olivia, and her four-year old sister Lilly, the family has had to climb mountains to get Olivia the treatment she needs to survive.
After her diagnosis at St. Louis Children’s Medical Center, Olivia was taken to Sloan Medical Center in New York for surgery and chemotherapy to eradicate the tumor in abdomen and the spots on her liver.
Then, after 10-months of treatment, Olivia was given a clean bill of health.
A few months later, a tumor was found in her sinus cavity, indicating the cancer had once again invaded her body.
Now, after another year of treatment, which included chemotherapy and radiation, George and Jessica are taking their daughter to Germany so that she can receive immunotherapy treatments.
George said Olivia has gone through the protocol for a cancer that has recurred. But now that Olivia can no longer receive chemotherapy treatments to keep the cancer from returning once again, the family has found hope in the immunotherapy treatments, which may find her body’s deficiencies and provide treatment to boost her system so that the cancer will not return again.
“Our options (in the United States) as far as treating her are limited,” George said. “The treatment options in the US are limited because the FDA wants the treatments to go through clinical trials.”
But because Olivia’s cancer is not active at the current moment, she is not eligible for any clinical trials in the United States. George also said it would be hard to put his child in a clinical trial because “only 50-percent get the actual treatment and the other 50-percent get the placebo.”
“Why would you put your child into something when you’re trying to save their life?” he said. “You don’t know if your child is getting treatment or not.”
While in Germany for eight weeks, Olivia will first go through genetic testing, which will hopefully provide a treatment plan for her. She will then spend the last few weeks in Germany receiving the treatment. George expects she will have to return to Germany to receive follow-up treatments.
But the immunotherapy treatments will also come at a great cost to the Anagnostopoulos family. George will stay in Mahomet to work, just to keep their benefits up. And although they have received some assistance from insurance for traditional therapies here in the United States, the Anagnostopoulos family will have to foot the $90,000 bill for the treatments in Germany.
“The only thing I care about is getting my daughter treated to get her cured,” George said. “These treatment are really an act of desperation on our part. We’re desperate to find whatever we can to save her.”
“Although we’re acting out of desperation, we are still trying to find the best course of action because the decisions we make will affect the rest of her life,” he continued. “We’ve thought about and researched everything thoroughly.”
George said support networks with parents going through the similar situations have been a powerful resource through this process. He also said Olivia would continue treatments here in the United States, if there were any available.
“We don’t have much of an option,” he said. “And we want to treat her with what’s available now.”
George and Jessica are hopeful that research in the United States will continue to be funded so that additional cures can be found. He is hopeful that some new treatments, like viruses being planted in cancer cells, will prove to successful.
Jessica, Olivia, her sister Lilly and grandma will leave for Germany this week. George will be able to visit them while they are there.
Olivia, who has suffered permanent damage from chemotherapy treatments, looks forward to the day she can go to school with her peers so that she can study to become a doctor. She would like to help other kids overcome cancer.
“I am certain that if she is given a chance to live, that she will make a difference to everyone she touches,” George said.