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Surfers rally for Bay Shore boy battling rare cancer
As Bay Shore’s Sarah Lindner stood on the sand in Long Beach on April 19, watching her 6-year-old son take his first surf lesson, she said he smiled for the first time in weeks.
“It meant the world to me to see him do the one thing he wanted to do,” said Lindner, 25. “We don’t know when the next opportunity will come for this.”
That’s because her son, Aaron Sisa, would begin an aggressive chemotherapy regimen just days later in hopes of shrinking a malignant brain tumor that has threatened his life.
“Does chemo hurt?” Aaron asked his mother the following Wednesday while she explained the procedures he would undergo. Inquisitive, Aaron also had questions about intravenous systems, stem cells and blood transfusions.
“He’s very smart . . . he’s like his own little advocate,” she said.
Earlier this month, Aaron was diagnosed with choroid plexus carcinoma. His doctor, Mark Atlas, a pediatric neuro-oncologist at Cohen Children’s Medical Center in New Hyde Park, said there have been fewer than 100 cases reported in the last 20 years.
“This is rare amongst the rare, so there is limited amount of data on it,” he said.
Lindner said her son’s doctors are unable to give her a survival rate or prognosis. A neurosurgeon removed 90 percent of the tumor, but had to leave the rest because it was too close to the brain stem, Atlas said. Aaron will need to have another surgery, he said, but first, doctors want to try to shrink the tumor by hitting it with five rounds of aggressive chemotherapy, a treatment plan that will stretch over months.
“We’re cautiously optimistic it will respond to the chemo, “ he said.
At the very least, Aaron would be spending the summer in and out of hospitals, and wouldn’t be able to participate in the surfing camp he had been looking forward to for months. So with less than two weeks until Aaron would begin chemotherapy, his mom set out to get him on a surfboard.
But after calling around to surf shops, none had a winter wet suit that would fit Aaron and the ocean was still too cold to send him in without one, she said. She said she came close to flying her son down to Florida so he could surf there, but then the local surfing community came to the rescue.
Tommy Grimes, the owner of Island Industries, a Massapequa-based company that manufactures surfboards and other watercraft, saw a Facebook post about Aaron’s story and immediately sprang into action. He was able to track down a children’s winter wet suit at a friend’s store, Beach Breakwater Surf, in Rockaway Beach. Then, he rounded up a few fellow surfers to take Aaron out for his first lesson.
Grimes said the conditions were perfect that day -- a light wind was creating “cruiser type waves,” ideal for a newbie like Aaron. They paddled out about 60 feet, formed a protective circle around Aaron, and pushed him into the waves.
“He was nervous in the beginning, but then, he started to get comfortable,” said Grimes, 23, of Massapequa.
After 30 minutes the group returned to the beach to give Aaron a break, but Grimes said the boy was eager to get back in the water. They spent another 90 minutes in the water while a family friend captured the experience on video.
“The last wave, we got him up a little bit on his feet,” Grimes said.
“It was cool,” Aaron said.
Grimes and his buddies also showered Aaron with gifts including a surfing backpack and a trophy, and they’re working on making a custom board for him.
“He’s a friend now,” Grimes added.
The surfers plan to visit Aaron in the hospital, but mostly, they’re looking forward to the day they can take him back out into the waves.
“I’m glad there are people out there who are willing to stop everything for a child,” Lindner said.
Seeing her son take to the waves, she said it renewed her hope and strength for what lies ahead for her family.
“To see him out there so determined reminded me that he never gives up,” she said. “I have to think this is the beginning, not the end, and hopefully . . . in the near future, he will be standing up on that board.”
To follow Aaron’s journey, visit 1ofakindkid.wordpress.com.