TAMPA, Fla. — As Bay News 9 continues special coverage of Stand Up to Cancer, we take a look at the call to increase funding research for pediatric cancer.
Congressman Gus Bilirakis is pushing for legislation that will do that, he supports the Gabriella Miller Kids First Act 2.0.
It would reauthorize and increase funding for the National Institutes of Health's Kids First initiative. It supports life-saving research of childhood cancer treatments.
The legislation is ready for a floor vote when Congress resumes in September.
Dr. Cassandra Josephson, Director of the Cancer & Blood Disorders Institute at Johns Hopkins All Children's Hospital, says funding is critical.
"Children really are left out of many, many studies," said Josephson. "There’s less than 8% of funding that is given to childhood cancer and that limits the ability to do clinical trials to develop drugs that are specific for some of the specific cancers that hit children."
Josephson was recently appointed as a member of the U.S. Department of Health and Human Services Advisory Committee on blood and Tissue Safety and Availability.
The experts advise on safety issues concerning the use of blood, organs, transplantation and transfusion.
She says working to understand the biology of cancers in pediatric patients is essential.
"As we try to move to a more precision-based medicine, we might be able to limit some of the toxicity, especially for kids that are growing and be able to have them have no late-effects, no secondary cancers," she said.
Kristina and Andy Harshman from Sarasota know the importance of research geared toward children. Their son, Eli, was treated at Johns Hopkins All Children's Hospital for a rare brain tumor.
"It’s been a rollercoaster," said Kristina. "Our lives just got turned upside down immediately."
"The past two years have been all the emotional range you can have as a human, just kind of like exploded, the lowest of the lows, highest of the highs," said Andy. "It was really scary for a long time. And just the relief and everything we had hoped and prayed for is happening right now.”
Two brain surgeries, a clinical trial and months of chemo, Eli is now in remission and excited about kindergarten.
For most families, this milestone is emotional. The Harshman family says it's a miracle.
"I just remember when he was in treatment not allowing myself to think too far ahead because I was afraid," said Kristina. "And I remember his brothers were in school and the thought crossed my head like what if he doesn’t have a chance to go to school.”
The family celebrates Eli's excitement as he beats the odds and heads to school.
Not forgetting the past, his parents look to the future. And they hope for more treatment options for other pediatric cancer patients.
As parents who are also science teachers, they appreciate research investigating new initiatives for children, part of the push for more pediatric cancer research funding.
"Because of the type of brain tumor, he had, is so rare and aggressive that there wasn’t like a normal protocol for it," said Kristina. "So, thank God there had been research studies, a clinical trial before that.”
"I’ve seen how important that research is, taught kids how important that research is," said Andy. "Then all the sudden bam, we’re hit with something, wow the research is something that could potentially save my kid’s life.”
Now, a new chapter of life.
"All these milestones as big as they are in other children, there’s such a heavy, monumental emotion with them just because we’re like wow he’s made it here," said Kristina.
A family making new memories, marking new milestones as Eli heads to kindergarten.
"Just super, super emotional for me," said Kristina. "I know what a blessing he is and what a miracle he is, and he basically defeated the odds and words can’t express how grateful we are every single day.”