CureSearch for Children's Cancer funds and supportstargeted and innovative children's cancer research with measurableresults, and is the authoritative source of information and resourcesfor all those affected by children's cancer.
Source: The Tufts Daily
February 11, 2010 (Boston, MA) - Usually busy with people streaming in and out, Hotung Café was virtually silent for 10 minutes aside from the voice of senior Sebastian Gillen. Gillen was speaking at the Feb. 3 Relay for Life kickoff event about childhood cancer and the need to raise funding for cancer research. Gillen, a pediatric cancer survivor himself, devotes his free time to raising awareness of the disease at fundraising events.
Born in South Boston, Gillen had a relatively normal childhood for the first eight years of his life. After moving to Westchester, N.Y., however, he began having chronic pain in his stomach and back that affected his daily life. The pains continued but were undiagnosed.
“I couldn’t stand up to play the violin in our school’s orchestra and I went to the nurse’s office every day,” Gillen said
When his pains worsened and he began experiencing symptoms like heartburn, stress and lactose intolerance, Gillen and his mother went to the doctor’s office to undergo further tests. Using an ultrasound, the doctor found a tumor and called Gillen’s mother with the devastating news.
“They told us I probably only had a week to live,” Gillen said.
Though his prognosis was dismal, Gillen’s family resolved to try any treatment options that could save him, thereby beginning his long, arduous battle against pediatric cancer.
Gillen checked into The Mount Sinai Medical Center in New York and was immediately sent into surgery. After examining his tumor, doctors explained to Gillen’s family that they could not operate: The tumor was the size of a football and was wrapped around his heart. Attempting to remove it would be too dangerous.
Gillen was eventually diagnosed with stage IV neuroblastoma, which is a fast-growing cancer of the sympathetic nervous system that can spread to the bone and bone marrow. As an eight-year-old, Gillen did not understand what was happening to him.
“I didn’t know anything at the time,” Gillen said. “All I knew was that I had to redo all these tests all over again.”
Gillen’s doctors considered a variety of treatment options that could potentially prolong Sebastian’s life, including a risky open-heart surgery. They ultimately decided on a cutting-edge cancer treatment being offered by the Memorial Sloan-Kettering Cancer Center in New York.
“I was very, very lucky, because [Sloan-Kettering] is the best place to be treated for what I had at the time,” Gillen said.
Gillen’s treatment lasted one-and-a-half years. He underwent surgery, radiation, immunotherapy and six rounds of chemotherapy. He experienced debilitating side effects like Crohn’s disease, type-one diabetes, arthritis and autoimmune diseases. Fortunately, the treatments were effective and succeeded in shrinking his tumor. By the time his doctors removed it, it was only the size of a walnut.
According to the Pediatric Cancer Foundation, though cancer is the leading cause of disease-related death for children under the age of 19, it is still relatively rare. Approximately 35 to 46 children in the United States are diagnosed every day with some form of cancer. Annually, 10,500 children below the age of 15 and 3,700 adolescents are diagnosed with cancer.
The most common forms of pediatric cancer are leukemia, a cancer of the blood cells and brain cancer. Gillen’s form of cancer, neuroblastoma, is very rare, with about 700 new cases introduced in the United States every year, according to Sloan-Kettering’s Web site. Of those cases, most are found in infants.
As a survivor of pediatric cancer, Gillen’s main objective is to refuse to let the subject be ignored. One organization Gillen is passionate about is the St. Baldrick’s Foundation, which aims to raise funding for childhood cancer by having people shave their heads.
“It started out with these Irish guys at a pub, drinking and betting,” Gillen said. “One guy, who had this massive amount of hair, bet his friend that if he didn’t raise $10,000 he would cut [it all off].”
Since its inception in 2000, St. Baldrick’s has grown exponentially, with $16.6 million raised in 2009, and more than $1.3 million in 2010 alone. In 2009, 30,619 males and 2,751 females shaved their heads at 630 different events around the world.
Gillen also works with CureSearch, which links the Children’s Oncology Group with the National Childhood Cancer Foundation in order to fund research and find a cure for childhood cancer. Every year, CureSearch hosts the Gold Ribbon Days in Washington D.C., bringing patients, survivors, supporters, families and researchers to lobby Congress for more funding.
CureSearch also holds an annual golf tournament called the “Shark Shoot-Out,” hosted and founded by legendary professional golfer Greg Norman. All money raised by the tournament goes toward CureSearch, with a total of $11 million raised to date.
In December, Gillen was asked to speak at the tournament’s fundraising dinner, using the same speech he made at Hotung Café. Norman thought it was “the best speech ever” and asked for a personal copy of it.
Gillen’s close childhood friend Zara Waldman, a graduate of Emerson College, said that Gillen’s talent for public speaking and his inquisitive, caring personality have always been apparent.
“Seb had, and still has, the ability to make people believe that the money actually helps, the awareness actually helps, that those dollars and minutes really become lives prolonged and medical knowledge enriched,” Waldman said. “His zest for life is most definitely contagious.”
According to Gillen, the most important success supporters can achieve is to raise awareness, even though money is always helpful.
“[Pediatric cancer]’s not a thorny issue; it’s pretty clear cut,” he said. “People don’t like talking about it, and for good reason. No one likes to think about children in hospitals with IVs up their arms, but it’s something that we can fix, something that just has to be.”
- Christina Lou
Shelby GosnellCommunications Manager Email Shelby(240) 235-2205