Diplomatic Pouch / February 21, 2014
By Larry Luxner
Michael DeMaio, 18, is a musician, athlete and soon-to-be high-school graduate. He’s also a lifelong brain tumor patient who’s survived 12 surgeries, 37 CT scans and 35 rounds of chemotherapy — and has had at least 350 doctors’ appointments in his life.
On Feb. 6, this brave young man served as master of ceremonies for Bella Notte, an annual extravaganza hosted by the Italian Embassy to generate funds in the fight against pediatric brain cancer. Nearly 250 people from throughout the Washington metro area and beyond defied sub-freezing temperatures to attend this year’s “beautiful night,” which raised about $130,000 through ticket sales, cash donations and a silent auction.
Items at the auction ranged from a Baltimore Ravens “82” jersey autographed by wide receiver Torrey Smith ($180) to a seven-night package for up to four people in a traditional villa in the Umbrian town of Spello ($1,600). Also auctioned off: a private tour of the Smithsonian’s Portrait Gallery for up to 10 guests ($600) and a six-pack wooden case of Sassicaia 2007 Super Tuscan wine ($1,800).
The event was organized jointly by Children’s National Health System and the National Brain Tumor Society (NBTS), both of which are devoted to wiping out a disease that strikes 1,500 to 2,000 American children each year. Despite its devastation, less than 4 percent of the $5 billion spent on clinical research annually goes to pediatric cancer.
“We are thrilled with your presence at the embassy for yet another great event for a great cause,” said Italian Ambassador Claudio Bisogniero, speaking on the second anniversary of his posting to Washington. “Yours is a message of hope for the true heroes of tonight, the little heroes who are fighting — and winning — their battles. We truly applaud your strength. We’re proud of you.”
The ambassador added: “Children’s National is a model worldwide for the commitments it has pioneered. We are all aware that cancer eventually spares no one — not even the most fragile, youngest members of our population.”
One of those people is Michael. Just five days after birth, doctors diagnosed the Washington, D.C., native with water on his brain and transferred him immediately to Children’s National.
“I was not even a year old when the blockage began to grow. MRIs became a regular part of my life,” he said. The tumor became more aggressive in sixth grade when he started losing weight and noticing that his hair was thinning. In the spring of 2010, Michael began radiation treatment at Massachusetts General Hospital in Boston.
“Even though my energy level was low, I continued my schooling with online classes in order to finish eighth grade,” the teenager said. The treatment succeeded, and within a year and a half, his tumor began to collapse.
“Being a part of the brain tumor world gives you a unique perspective on life,” he said. “Many people out there are a lot worse off than I am. I will always have my brain tumor, because it’s inoperable, but that will never let me down.”
Michael’s words moved everyone at Bella Notte — especially Dr. Joseph Scafidi, a pediatric neurologist at Children’s National whose research is funded by the National Brain Tumor Society.
“Your story reminds me of why I entered medicine,” said Scafidi, whose clinical interest is the late effects of developmental brain injury, particularly understanding the pathways to ensure that specific regions of the brain develop properly.
“Some of these pathways become altered, but thanks to recent medical advances, we are now able to target these pathways specificially and treat different tumor types,” he explained. “There are drugs that specifically inhibit these pathways. However, most of the research has just focused on the tumor cells themselves, as well as only adult tissue and not a developing brain model. I am very grateful to the NBTS for seeing the value in my project and supporting my research.”
Bisogniero said that in Italy, the incidence of cancer is rising by 2 percent a year.
“Between two and three of every 100,000 children younger than 15 are stricken with cerebral cancer. More than 60 percent of them fight and survive,” he said. “Pediatric institutions in Italy are racing to bring the numbers down, to improve recovery rates, and to provide the best possible integrated treatments to patients and their families.”
The ambassador named half a dozen Italian hospitals leading the fight against pediatric cancer, adding: “I hope tonight’s event will contribute, through your generosity, to strides in the research and treatment of this illness — and that it will build bridges of hope between the great institutions of this country and medical institutions in Italy.”
Roger J. Packer is director of the Center for Neuroscience Research at Children’s National. He called up more than a dozen children to the podium, each of whom came forward accompanied by their parents, along with brothers and sisters.
Isaac Placeres, 13, of Fredericksburg, Va., struggled with his brain tumor for years, eventually going blind. But now he’s in seventh grade and has completely recovered his sight. He reassured other teenagers facing similar challenges.
“To all the other kids who have brain tumors, don’t worry cause I know what you’ve been through,” he said. “By the time you grow up, you’ll forget all about it.”
Next up was Isabella Impavido of Washington, D.C., who was diagnosed with a brain tumor in 2008, when she was 6 years old.
“My parents explained that I had a weed in my head, and that to kill this weed, I had to take some strong medicine — and let me tell you, it was strong,” she said.
Like Isaac, Isabella has seen a remarkable remission of her tumor, thanks to her participation in a “MEK inhibitor” drug trial. That’s allowed the 12-year-old to finally live a normal girl’s life.
“I have now been taking these inhibitors for a year and a half. The side effects are very minimal, and I do all the things my friends do,” she said. “The tumor has shrunk 50 percent in a year. You can call this treatment whatever you want, but to me, they are magic pills.”
Before concluding his remarks, Packer announced that the Massachusetts-based NBTS has pledged $2.5 million in research grants to help treat high-grade gliomas in children, which are relatively rare but especially vicious. Pharmaceutical companies such as Astra-Zeneca are now on the cutting edge of such research, he said.
“My real hope is that with this kind of partnership, next year we’ll be able to announce more breakthroughs for these children,” Packer told his audience. “These breakthroughs will not only improve their likelihood of survival, but the quality of survival as well.”