When doctors told 9-year-old Little Silver resident Lilly Daneman she wouldn't be able to swim again after being diagnosed with Ewing's Sarcoma, a pediatric bone cancer, she was determined to prove them wrong.
Back in the pool after two years of treatment and swimming with a metal rod in her leg, Lilly's latest mission is to spread the word that kids need better cancer treatments. Having gotten over 1,000 children from beach clubs up and down the northern Monmouth County coast to sport gold caps at their home meets this summer, early signs are she's going to succeed at that too.
“Swimmers Go Gold to Cure Kids Cancer” has raised over $12,000 for the Make Some Noise: Cure Kids Cancer Foundation by selling the caps (which are gold to symbolize childhood cancer) for $10 to swimmers participating in the North Shore Summer Swim League and beach clubs from Sea Bright to Long Branch.
Lilly's mom, Gerri Daneman, and Paul Buerck, who coached Lilly when she was on the Monmouth Barracudas year-round swim team, said the idea came together quickly in early June. Their goal is to fund research that develops better children's cancer treatments, as current protocols are nearly 30 years old.
"The main thing that we're trying to get across to people is that we need pediatric research funds because the only money we get is through the private sector," said Gerri Daneman.
"Drug companies do no research for children's cancers because they can't make money on it. There's not 100,000 kids that were diagnosed with cancer, there's 14,500, but that comes down to two classrooms of kids a day."
The cause is personal to Buerck, as multiple people in his life have been affected by cancer. His college roommate is the oldest living survivor of Ewing's Sarcoma. Two students at the school he teaches at in Ocean have gotten Leukemia. In addition to Lilly, another little Barracuda, Rachel Kovach, also came down with Ewing's Sarcoma.
"Personally I got sick to my stomach because you think 'no that can't be happening'," said Buerck of when Rachel received her diagnosis in January 2011, not long after Lilly's May 2009 diagnosis.
"It's kind of all around me so that's why I need to be involved and I need to find a cure. There's no reason that there can't be one," said Buerck.
Daneman said she floated the idea for gold swim caps and the next thing she knew, Buerck had sent out an e-mail to the whole North Shore Summer Swim League, getting every swim team to agree to host a "Swimmers Go Gold" meet.
"Personally for me, I'm a father, I'm a coach, I deal with the kids all the time and I don't want to see any child or a family or parents have to go through that, so if we can get out and find a cure, it'd make it better for everybody," said Buerck.
Lilly enjoyed dancing and swimming before experiencing a pain in her leg discovered to be a cancerous tumor in her femur. She spent over 100 days in the hospital, receiving 14 rounds of chemotherapy under the care of Dr. Aaron Weiss at Robert Wood Johnson in New Brunswick. Dr. John Dormans at the Children's Hospital of Philadelphia (CHOP) performed the limb salvage surgery that replaced her femur with a titanium rod. After extensive physical therapy, Lilly is able to walk and swim again, the only sign of her surgery being a deep scar running the length of her upper leg.
While at CHOP, Lilly met an 11-year-old named Malcolm Sutherland-Foggio, of Morris County, who also had Ewing's Sarcoma. Lilly and Malcolm's moms had found each other online and introduced their children to each other in a hallway in recumbent wheelchairs. Lilly had just come out of surgery, and Malcolm was still in chemotherapy.
Disturbed by a child that had died of cancer in the middle of the night, Malcolm would give his mother Julie (herself a competitive swimmer) the inspiration to form the nonprofit Make Some Noise, which Lilly and Gerri soon joined as well.
"He said 'Mom we need to make some noise about it' and she was like 'wow, what a great name, make some noise'," explained Gerri Daneman.
Survival rate for Ewing's Sarcoma is about 70 percent for non-metastatic (cancer that has not spread from one organ to another), about 15 percent for metastatic (cancer that has spread) and about 5 percent after relapse (return of cancer). Secondary cancers are sometimes caused by the chemotherapy, which involves the administration of toxic drugs that enter the body to kill the cancer, Gerri said.
"Relapse is very severe in her type of cancer. A lot of kids are diagnosed so late because their cells are fast-growing in children so you catch cancers very late in kids. That's why they're hard to cure. They take the adult cancer cures and they super give them to children, they give them more toxic doses because their cells multiply so fast that they want to be able to kill the cancer. It might kill the cancer, but years down the road these kids might suffer lifelong side effects."
Lilly's schoolmate Jack McLoone, also of Little Silver, has childhood Leukemia, and during his treatment he suffered severe neuropathy in his legs. He wears braces on his feet and it is going to take two or three years for the nerves to come back. He has a severe limp and suffers pretty badly, Daneman says, even though he's cured.
McLoone, like Lilly, is undeterred by the setbacks, however, and is playing baseball. Rachel has persevered as well, recently getting back into the pool to race against Lilly, Buerck, and some of Buerck's coaches at Seashore Day Camp in Long Branch.
"The kids are strong willed," said Buerck. "Rachel was told she wouldn't swim and she said 'yes I will' and she did. The kids that have this are an inspiration and I think there wasn't a dry eye on the pool deck when Lilly and Rachel raced, because you see a child who, they're not going to quit, they're not going to give up. These are very strong kids and we can learn a lot from them."
In remission, Lilly has returned to swimming after major rehabilitation, and is competing to a limited degree on the summer Water's Edge Beach Club swim team.
"A lot of the kids here know Lilly. They've watched her come in on crutches, they watched her with no hair. She's been in remission for 22 months," said Daneman.
Lilly, Rachel and Buerck have provided inspiration and support for Nicole Foster, another area girl from Chapel Swim Club who was recently diagnosed with Leukemia in July. Buerck and Daneman hope through Make Some Noise, they'll be able to fund research into the prevalance of childhood cancer, which appears to be cropping up in Monmouth County in ever greater numbers.
"Unfortunately I do believe there's a cluster around here. There's so many kids that are coming down with it that we need to look at it in this area," said Buerck.
Daneman said other nearby cases exist as well, but the children are getting treated at different hospitals, making it harder to identify the cluster.
"A true cluster would mean that it's repetitive, that it keeps happening for years. Four from Monmouth County were diagnosed with Ewing's Sarcoma and being treated at CHOP. You're talking about 600 different kids who are being treated for some kind of Sarcoma every year, but we had four in treatment at the same hospital from this area. That's a lot."
Childhood cancers are the leading cause of death by disease in children 14 and under, according the the American Cancer Association. An estimated 9,100 children will be diagnosed this year. Though a cure may be years away, it should be noted that in 1950, a diagnosis of cancer was a virtual death sentence. Today, with advances in research, eight out of 10 children can now be successfully treated.
Buerck believes "Swimmers Go Gold" could be a critical part of funding new child-specific cancer research, and has a goal of taking the campaign national.
"I'd love to get 5,000 clubs, high schools, colleges, and clubs all around the United States all wearing the caps," said Buerck. "We're trying to get the kids to take responsibility for it. They'll take the information to their athletic director and sit down with their National Honor Society and their clubs in their high school and say that this is something they want to do."
Buerck says he sees great opportunity with 2012 being an Olympic year and swimming getting more attention.
"I plan on traveling a bit nationally to go to some of the bigger clubs to get some of the more elite athletes to wear the caps and recognize it, and see it we can get it all the way to the top," said Buerck.
The broader plans may seem ambitious, but Buerck says getting involved is uncomplicated.
"It's something that's real simple, it doesn't require anything more than sitting at a table and selling the caps."
If your team is interested in getting involved with the "Swimmers Go Gold" campaign, you can e-mail Gerri Daneman at email@example.com. For more information on the foundation, visit their website at makenoise4kids.org.