All Children's Hospital Telethon

Willie

Willie

It was a different time, a different place. And after all these years, he was - in some ways - a different person.

Willie

But standing in the warm embrace of people who'd helped him battle for his life, Willie Marshall felt like he was back home - at his "second home," All Children's Hospital.

"Instantly, it took me back to being 16 years old," Willie reminisced. "It's all positive thoughts and memories. This place is different - nothing like it was back then. But you see familiar faces and it lets you know that these people are passionate about their job. They love what they do."

Back in 1995, Willie was a high school football star who broke his leg on an Immokalee playing field. After months without healing, Willie was sent to All Children's Hospital in St. Petersburg. His leg had broken because of a cancerous tumor called osteosarcoma.

"I thought - OK, I'll lose my leg. But not my life," Willie said back then.

In the care of then-pediatric oncology director Jerry Barbosa, MD and a team of pediatric nurses and providers, Willie was enrolled in a national Children's Oncology Group drug trial aimed at reducing the odds his cancer might reappear in his lungs. Through that grueling year, Willie lost more than twenty pounds but gained lifelong friends among the doctors, staff and fellow patients he met while being "a guinea pig," as he liked to joke.

Eighteen years later, there's still so much left to learn.

Small Numbers Make Lengthy Studies

"Those big multi-institutional trials through the Children's Oncology Group are fantastic - they're very important for answering the big questions," explains All Children's pediatric oncologist and researcher Damon Reed, MD. "Unfortunately, for osteosarcomas specifically, there's not been a lot of success with the trials the last couple decades."

Reed's research, funded through a grant from the Pediatric Cancer Foundation, pulls together Tampa's Moffitt Cancer Center, All Children's Hospital and eight other pediatric hospitals around the country to match the safest, most effective and best tolerated medicines with pediatric cancers. His work focuses on the group of tumors called sarcomas - cancers of the muscles, bone and fat. Osteosarcoma - the type of tumor Willie had - is just one of more than 50 sarcomas. Overall, the occurrence of sarcomas is rare - about 1% of all cancers in the nation. They're somewhat more common in children, accounting for 10-15% of all pediatric cancers.

Because these tumors are so rare, Reed explains, it can take years to identify and enlist enough patients for an effective drug trial. "Even working with countries throughout Europe and other parts of the world, it can take eight to ten years to answer these questions. It takes about 800 patients and about ten years to conduct just one of these studies. So for example, results of a 2003 trial will be coming out this year - and that's just the preliminary results, not all the answers.

"The last few trials for osteosarcoma did not yield any big breakthroughs. We hope to learn a lot more about the disease. But there may have been some missed opportunities along the way."

Preserving the Clues

There's no shortage of drugs that are already known to have some impact on cancers, says Reed. Part of the problem is that not every cancer - every tumor - every osteosarcoma - develops the same way in different people. It may be a matter of matching the right drug or combination of drugs with the right patient. But how do you determine that match?

Reed and many other researchers believe the tumors ultimately hold all the clues. "There's something in the DNA or the RNA or proteins that has taken it from its normal course. But without tumor specimens, we're just guessing."

That's one reason why All Children's is actively working to build a biorepository for blood and tissue samples, along with supportive programs in bioinformatics and proteiomics to help researchers assemble data and tease clues from the samples . "It's critical," says Reed. While other institutions nationwide are considering similar initiatives, Reed says, "I think we could help lead this effort."

As rare as these cancers are, imagine if we had been able to preserve specimens from Willie's tumor and the hundreds of other young patients who've been diagnosed in the past twenty years. "We probably weren't that savvy back in those days," Reed reflects. "But if we had been able to store specimens in a way that's efficient - with all the genetic codes for the osteosarcoma, the DNA - all the messages that signal the cancer to continue to grow, the RNA - and all the actual machinery of the cells, the proteins - if we would have had that, perhaps we could have unlocked a few more secrets along the way."

Reed emphasizes - in order to make progress - the time to collect tumor specimens is now. "Even if the biorepository just stores blood and tissue specimens, we may well have new technologies in the near term that will be able to unlock some secrets. If we don't start collecting and storing specimens now, then we'll be in no position to better the odds for the next patient like Willie that comes along."

A Long Way Here, A Long Way to Go

Up on the seventh floor of the new All Children's Hospital, now 34-year old Willie was getting a tour of the Vincent Lecavalier Pediatric Cancer and Blood Disorders Center from his former physicians, Drs. Jerry Barbosa and Nanette Grana.

"These rooms are humongous! And Room Service on the TV screen? That's high tech!" Willie said with a smile. He should know comfortable accommodations. Willie was vacationing from his job with Hilton Worldwide Hotels in Manila, Philippines. He comes home to Florida three or four times a year, but this was his first trip to All Children's Hospital since it moved to its new site in January of 2010.

"It's different! I mean, nothing like before," he recalled. "But it's different in a way that shows how much All Children's has grown. It shows the support All Children's has from the community for the great things they do for kids.

"All Children's will always be dear to my heart. It's never left my hear,' Willie said with thanks for all those who've contributed to making the hospital what it is today. "If it wasn't for your generosity, who knows what would have happened with my life? So I truly thank you for that. And for the folks that are thinking about giving, please give.

"To this day, All Children's making it a lot easier for kids and their families - knowing that they can come to such a great place and the best efforts will be put into helping their children to get well. Yet we all know, the more research we have and more we can change things, the better it will be for all of our children in the long run."



Children's Miracle Network - the alliance of premier hospitals for children Logo - Click to visit the web site All Children's Hospital is a member of Children's Miracle Network Hospitals, which represents children's hospitals across North America. Our Telethon shares the courageous stories of our young patients, who are at the heart of it all. No matter which part of the hour you call, your entire donation stays with All Children's Hospital to benefit children from your community.
Contact Us   |   Telethon Stories   |   Donors   |   Share Your Story   |   Join In!   |   About ACH


©2014 All Children's Hospital - All Rights Reserved  

Link to Telethon Homepage Join us on Facebook, Twitter, or Flickr Visit the News Channel 8 Website Children's Miracle Network Donate Now!