Honored Kid Leon is one tough cookie. He’s fought childhood cancer not just once, but twice, and this time, Leon and his family hope it’s gone for good — thanks to an immunotherapy trial run by Leon’s buddy Dr. Daniel Lee, an investigator with the Stand Up to Cancer – St. Baldrick’s Dream Team.
Leon and St. Baldrick’s researcher Dr. Daniel Lee share some smiles.
Everything changed one hot summer day in Colorado. Leon was spraying his cousins with a water gun and playing with the hose. Then the 9-year-old slipped on the slick deck and fell hard.
It was a badly bruised hip, said the doctors in the emergency room. It will heal. But it didn’t. Leon’s grandmother, Lisa, watched her normally active grandson walk gingerly and even resort to crutches.
Then she watched Leon get tired more quickly than a kid should. And then she watched him sleep. He slept and slept.
“And I knew then,” Lisa said. “I was like, ‘I think he’s sick again.’”
St. Baldrick’s Scholars Dr. Alex Huang and Dr. Agne Petrosiute are studying how switching off a protein could lead to new treatments and cures for kids with brain tumors. Read on for more about their unexpected discovery, its implications for immunotherapy, and why Dr. Huang compares himself to those fuzzy little bears in Star Wars.
Dr. Agne Petrosiute (left) and Dr. Alex Huang study how the immune system can be harnessed to fight pediatric brain cancer.
Dr. Alex Huang likens himself and his colleague, Dr. Agne Petrosiute, to Ewoks battling the Death Star.
“We are the Ewoks that found the controller on this planet, and all of a sudden the Death Star cannot put up the shield anymore,” he said. “And so now, Luke Skywalker can go in there and blow it up.”
It may seem like a curious explanation, but it fits.
Ambassador Phineas’ dad, Carlos, shares what the family has been up to this past summer, and he looks back at where their family was 10 years ago — and where they might be now if it weren’t for the immunotherapy clinical trial that saved Phineas’ life.
Ten years ago I was nearing the end of the worst summer of my life.
Like most college freshmen, Mitch Carbon is excited to be getting a fresh start. But unlike his peers, just two years ago, he didn’t think he’d live to see this day. Read on for more of Mitch’s story and the clinical trial that saved his life — all made possible by YOU.
When Mitch Carbon was a junior in high school, he was preparing to die.
This month marks three years since Rex was diagnosed with neuroblastoma, and the 4-year-old and his family are celebrating. Why? Because thanks to a St. Baldrick’s-funded immunotherapy treatment, Rex still shows no evidence of disease. Read on for more about rambunctious Rex and his incredible childhood cancer journey.
Rex was diagnosed with childhood cancer when he was just 18 months old. Now he’s a high-energy, fun-filled 4-year-old.
For 4-year-old Rex, everything is go big or go home.
“He runs everywhere. He doesn’t just take steps, he leaps. He doesn’t have an inside voice, just an outside voice. He throws everything, breakable or not,” his mom, Lesley, said.
Yesterday, Ambassador Phineas’ dad, Carlos, joined more than 200 childhood cancer advocates on Capitol Hill to drum up support in Washington for kids with cancer. He opened up about what it’s like to have two children diagnosed with cancer, how research saved his son’s life, and why he won’t stop telling his family’s story. Read his powerful speech below.
Carlos with his son, Phineas. Phineas was diagnosed with cancer when he was 4, six years after his sister Althea died of childhood cancer.
I live in Chapel Hill, North Carolina, but like most of my neighbors, I’m not actually from North Carolina. Chapel Hill is a college town where new people come and go every year.
Whenever my wife and I meet people for the first time, one of the first questions we get asked is, “So, how did you end up in Chapel Hill?”
When I hear that question, I always freeze for a second because I have to decide carefully how I want to answer.
“Our son would not be with us today if it weren’t for St. Baldrick’s,” says Phineas’ dad, Carlos. Read on to see how research saved the little boy’s life.
NEW VIDEO: Phineas’ Story >
On a recent mountain bike ride with a friend, 7-year-old Phineas was sailing along when he decided to take a risk and pedal over a bridge not meant for bicycle traffic. He wiped out in a big way.
But without so much as a single tear, he picked himself up, dusted himself off, and got back on the bike.
Compared to what this boy had been through two years before, that was nothing.
Just mentioning herpes might make some people a little nervous, but in this story, herpes is the good guy. Read on for more about St. Baldrick’s Scholar Dr. Gregory Friedman’s work on a genetically altered version of the virus that could be the next targeted therapy for kids with brain tumors.
Dr. Friedman smiles with a young patient in an exam room at Children’s of Alabama.
St. Baldrick’s Scholar Dr. Gregory Friedman discovered that the herpes simplex virus, with a few modifications, will kill pediatric brain cancer cells — without causing cold sores.
During a unique internship with St. Baldrick’s Scholar Dr. Dean Lee, Ambassador Lauren ran experiments on her own blood, leveraging her childhood cancer battle to further research into a cure. Join Lauren in contributing to childhood cancer research.
Ambassador Lauren was able to study her own blood during her internship with St. Baldrick’s Scholar Dr. Dean Lee.
“I thought it was really cool,” she said.
When a 23-year-old leukemia patient ran out of treatment options, she joined an immunotherapy clinical trial supported by the St. Baldrick’s Foundation. You can help fund the research that saved her life. Get involved.
Lynsie after undergoing the immunotherapy treatment that saved her life.
It was hardly the news the 23-year-old expected to hear after having spent so much of the last eight years fighting for her life.
Lynsie had been diagnosed with acute lymphoblastic leukemia, or ALL, when she was 15. She fought it into remission twice. But by the third time it came around, her doctors told her it had become resistant to chemotherapy.
The standard treatment for relapsed ALL involves a bone marrow transplant, but Lynsie would have to be in remission for them to do the transplant. It seemed her only option was to hope for a miracle.
That is, until her doctors told her about a new phase 1 immunotherapy clinical trial funded in part by the St. Baldrick’s Foundation.
Older Posts »