At first, Alex Berson was told that the aches in his left leg were just growing pains or children’s arthritis.
The pain came and went, but during a family vacation to Costa Rica, Alex’s leg started swelling, and the pain was not going away.
The Bersons decided to visit a pediatrician for a second opinion.
That pediatrician ordered an MRI, and in late August 2007, after a biopsy at Mattel Children’s Hospital UCLA, the 12-year-old learned that he had non-Hodgkin lymphoma, a type of cancer that affects white blood cells.
“They told me on a Friday,” Alex said. “I waited over a holiday weekend and was admitted Tuesday, Sept. 4.”
Alex had never been hospitalized before, and called the two-week ordeal uncomfortable. He missed almost all of seventh grade and took lessons from home between ongoing chemotherapy.
He has a portacath implanted in his chest, so that doctors have access to a main vein instead of having to restick him each time he goes in for treatment.
Still, he said, the hardest part of dealing with cancer has been the emotional aspect.
“It was definitely hard for myself and for my family. Once you hear the word “˜cancer’ or “˜lymphoma,’ its really scary. Your mind immediately goes to death.”
Now, almost two years later, Alex is back in school. In September, he will have his last dose of chemotherapy, and if his doctors decide he is in remission, he can remove the portacath.
Alex, his family and friends are also working to raise money for cancer research.
On Saturday, Alex will perform at ShredFest 2009, a battle of the bands organized by an even younger crusader against pediatric cancer.
Teagan Stedman, a floppy-haired 9-year-old, met Alex’s sister Emma through Rock Nation, where he takes electric guitar lessons after school.
Teagan and Emma started carpooling, and Teagan came up with ShredFest because he wanted to honor Alex and “find a way to raise money other than just asking people for it.”
“Alex likes music,” Teagan said. “It’s the perfect project.”
Alex, now 14, has been playing bass guitar for more than three years. Even when he was out of school because his white cell counts were too low, he kept practicing.
At ShredFest, Alex will fill in on bass with Teagan’s band, Slatr, for a special performance of Guns N’ Roses’ “Sweet Child O’ Mine.”
Funds from ticket sales will be split between the Pediatric Cancer Research Foundation and Mattel Children’s Hospital, where Alex is treated.
“I was blown away,” Alex said about his reaction to Teagan’s idea. “Before that, I didn’t really talk to him that much, but I just thought it was so generous and kind and amazing.”
Alex’s family contacted Mattel for permission, and administrators enthusiastically backed the idea.
Kathleen Sakamoto, the chief of hematology and oncology at Mattel, said research on pediatric cancer focuses on finding new treatments that are less damaging to the developing tissues of young patients.
Mattel first partnered with the Pediatric Cancer Research Foundation during Dribble for A Cure, which was held at UCLA last November.
Sakamoto said the two organizations share common goals.
“Our vision is to provide better care, improving the survival rates, improving the lives of children who are diagnosed with cancer.”
Sakamoto said pediatricians form uniquely close ties with their patients.
“When I tell a family that their child has cancer, their lives will never be the same. And you immediately form a bond.”
Even after children go into remission, she said, families often continue visiting, and Mattel benefits from supportive families like Alex’s.
Alex’s mom, Tracie, said that her family’s fundraising efforts are “a small trade-off” for the doctors who saved her son’s life.
“The doctors and the oncology group ““ it’s a godsend,” she said. “The way they deal with these children, I don’t think it’s commended enough.”
She said she knows Alex feels good about being able to make even small contributions, and Alex said he is looking forward to ShredFest as a way to be surrounded by the support of family ““ and friends like Teagan.
“I mean, he’s done so much work. It’s unbelievable,” Alex said. “There are no words to describe it.”
Along with negotiating a discount with the Roxy Theatre, Teagan visited the corporate headquarters of several companies to raise the $2,000 to rent out the space.
He also asked the Guitar Center to donate guitars, two of which will be raffled off. The third, signed by Swedish guitarist Yngwie Malmsteen, will be auctioned on eBay.
“He’s a really good guitar player,” Teagan said about Malmsteen, before wailing and strumming an air guitar to demonstrate.
Most of the other ShredFest performers are between 14 and 18 years old, and attend Rock Nation.
Teagan’s mom Kelly said the school has been great about giving the bands extra time to practice and in helping to organize the event.
Even though Teagan wants to play guitar “forever,” he doesn’t want to win on Saturday.
“I want someone else to win,” he said. “I started this thing, so I don’t want to have the complete spotlight.”
Teagan plans to hold ShredFest again next year and hopes the event can spread to other cities.
“Then it’ll help a lot more and make a big difference,” he said.
Email Kuo at akuo@media.ucla.edu