A 5K race and pool party makes a difference for children with cancer
Ishan Gala was 14 months old when he was diagnosed with stage IV neuroblastoma, a cancerous tumor that starts in certain early forms of embryonic and fetal cells, at UVA Children’s Hospital in February 2008.
Ishan’s parents, Mayank and Sajal Gala, were devastated at the diagnosis – their only child had cancer, and a cancer they’d never heard of at that. Their disbelief was hardly unusual: According to the American Cancer Society, neuroblastoma is the most common infant cancer and the most common solid extracranial childhood cancer; about 700 cases are diagnosed in the U.S. each year, and it’s rarely found in people over 10 years of age.
And yet, most people have never heard of neuroblastoma. Childhood cancers are difficult to fathom, and neuroblastoma has not been as visible in the media or the public eye as, say, childhood leukemia or brain or nervous system tumors.
“I was so naive to pediatric cancer until it happened to us,” says Mayank Gala, Ishan’s father. “It was one of those things I didn’t even know existed, and we were thrown blindly into this world.”
The Galas moved from Charlottesville to New York City in March 2008 so that Ishan could receive treatment at Memorial Sloan Kettering Cancer Center.
Ishan Gala
Over the next 7 months, the family lived at Sloan Kettering. Ishan underwent two major surgeries and seven cycles of chemotherapy, various bone marrow aspirations, and scan after scan under anesthesia. He took countless rounds of antibiotics, anti-nausea drugs, pain medications and anti-fungal medications. One medication was often needed to temper side effects of another medication. He had inpatient days and outpatient days, late nights and early mornings. Some days Ishan ate; some days he couldn’t.
This sort of intense treatment, says Mayank Gala, was par for the course, and it was both physically and emotionally exhausting for children and their families. When he talks about those few months in the hospital with Ishan, he speaks more slowly, he bows his head, and the memory of weariness flashes across his face.
But the water, he says, brought comfort to Ishan. While in New York for Ishan’s treatment, Mayank and Sajal took their son to a pool, waterpark or splash park every chance they got. “I have so many little videos of Ishan playing in the water,” he says, and his eyes light up when he thinks of his son laughing and splashing around. “The water was a happy place for him, a place where he could be normal with the rest of the kids.”
After treatments at Sloan-Kettering proved unsuccessful, Ishan died at home in Charlottesville on September 6, 2008, just a few days after his second birthday.
“After Ishan passed, I wanted to stay in the fight and make a difference for these kids,” says Mayank Gala. The Galas established the Ishan Gala Foundation, a grassroots organization that raises money to support children who have been diagnosed with neuroblastoma and their families.
And what better way to celebrate Ishan’s life than in his own happy place, in the water, with a pool party?
Each year since 2009, the Ishan Gala Foundation has hosted Splash For A Cure, a pool party and fundraiser to promote awareness of neuroblastoma and raise funds towards treatment. “Everything begins with awareness,” says Mayank Gala. “Once people are aware of a disease, they’ll start donating, start raising funds and supporting the cause. Splash For A Cure leads to awareness, awareness leads to funding, and funding leads to better cure rates.”
The foundation has partnered with ACAC Fitness & Wellness Centers on the event each year, has drawn between 200 and 300 attendees annually. This year, the event will take place in the morning, and in addition to the usual pool party with music, snacks and raffle prizes, this year’s event will include a 5K run. Mark Lorenzoni of Ragged Mountain Running Shop will chair the run portion of the fundraiser.
Neuroblastoma treatment has come a long way since Ishan’s diagnosis seven and a half years ago. Mayank Gala recalls that Ishan was treated with higher doses of the drugs used to treat breast cancer patients. The drugs themselves can be toxic and create future problems (long-lasting infections, infertility, secondary cancers, to name a few) for children who survive. According to St. Jude Children’s Research Hospital, high-risk patients like Ishan have a survival rate of about 50 percent; low-risk patients have a survival rate of 95 percent. Now, the immunotherapies used are less intense and offer a better quality of life for the children who need them. The treatment is better, but it is also extremely expensive (usually around $7,000 to $10,000) and is often not covered by insurance.
“After living in a hospital for so many months, I saw how many couples fought about money and finances, about who’s going to go to work while their child is dying,” says Mayank Gala. “Luckily, I run my own business [he owns a marketing company] and my wife and I didn’t have to deal with that. To alleviate the pressure off of families so that they can focus on what’s important— saving their child’s life, making their child comfortable— that’s where my heart is.”
At this year’s Splash For A Cure Event at ACAC’s Adventure Central, the Ishan Gala Foundation plans to present a $50,000 check to UVA Children’s Hospital to support families who need financial assistance during what is surely the most difficult moment of their lives. These treatments are also now more widespread: the Galas had to leave Charlottesville for Ishan’s treatment in 2008, but now, UVA Children’s Hospital is equipped to treat neuroblastoma and many other childhood cancers and diseases.
Ishan would be 9 years old this coming Friday, Aug. 28, the day before this year’s event. For the Galas, there is no better way to celebrate his birthday than with some water park time and to raise money for kids who are still courageously battling neuroblastoma. Plus, the Adventure Central park has taken on a special meaning to the entire Gala family, which now includes Archer, 4.5, and Eli, 9 months. “Any time I’m at a place with water, I feel Ishan’s presence,” says Mayank. “It’s amazing.”
Splash For A Cure Event Details
Sat., Aug. 29, 2015
8-10:30 a.m.
ACAC Adventure Central, 200 Four Seasons Drive, Charlottesville, VA 22901
Tickets:
$15.00/Adult (13 & older)
$10.00/Youth (ages 3-12)
Children 2 and under FREE
Family Package: $45.00 includes waterpark entry for 2 adults and 2 youth
Race registration:
$35.00/Person online
$30.00/Person if registered in person at Ragged Mountain Running
$50.00/Person day of race
*Race registration includes entrance to the waterpark for the runner, plus one additional waterpark pass
Cville Niche 
Posted on August 24, 2015 by Erin O'Hare
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