It's a disease that you don't hear much about, and you don't want to be among the few who usually do.
Local mothers Whitney Ringler of Summerville and Lisa Cates of West Ashley had never heard of neuroblastoma, a rare but aggressive pediatric cancer, until their young sons were diagnosed with the disease.
Ringler recalls the immediate, dire request of the doctor upon telling her the bad news.
"The first thing the doctor said to me was, 'Do not go on the Internet and look it up.' He said just don't do it," she remembers, adding, "And it's true, everything on the Internet (about neuroblastoma) is bad."
It certainly is, for now, a disease that carries a high death rate.
Both mothers said physicians gave their boys only a 30 percent chance of surviving.
Both boys endured brutal therapies and have reached the status known as NED, "No Evidence of Disease." And they have resumed somewhat normal childhoods.
"Somewhat" because both have lost their high-frequency hearing and are being reminded of the disease on a quarterly basis for at least three years by checkups that include a CT scan, MRI, MIBG scan and bone marrow biopsy to make sure it doesn't return. Neuroblastoma, they say, is known to "sleep and hide."
A parent's nightmare
Both Chase Ringler and Cooper Cates offered few obvious clues to the killer that lurked inside their bodies.
Chase was 3 -- a healthy, happy preschooler who hadn't even suffered a cold -- when he started limping on one leg. A week later, he started limping on the other. His doctor suggested getting his hips checked out when a week later Chase woke up with a stiff neck.
With that, doctors told the Ringlers to get him to the Medical University of South Carolina, where in a couple of days, physicians discovered a quarter-size tumor on his adrenal gland. It was neuroblastoma. Further tests showed the cancer has spread to his skull and bone marrow.
"It was Stage 4 cancer. He was covered in it," says Ringler, still in seeming disbelief. "At 3 years old and after a month of limping, he had Stage 4 cancer."
The case with Cooper was different.
Cates took her 6-month-old for a well check, and the doctor started checking around his abdomen.
"I saw his (the doctor's) whole demeanor change," says Cates. "He got quiet. He said Cooper's spleen and liver were enlarged and that he needed to go to MUSC right away. He said it could be anemia or a tumor, and that's all I heard. I knew it was a tumor."
Her instincts were right. After a night of getting X-rays and CT scans, the images were bad.
"His liver looked like Swiss cheese because it was nothing but tumors, and he had a softball-size tumor in his little 6-month-old belly," says Cates.
In their case, the diagnosis of neuroblastoma was better than the original misdiagnosis of pancreatoblastoma (a tumor in his pancreas), which has no cure. At least with neuroblastoma, they had a chance, though doctors had to work fast. Cooper had the N-mic gene that made the cancer even more aggressive.
Saved by clinical trials
Both boys had basically the same treatment protocol -- a clinical trial -- that included multiple rounds of high-dose chemotherapy, bone marrow transplants, multiple rounds of radiation, a treatment of Accutane and a painful antibody therapy.
Ringler and Cates are convinced that the trial saved their boys' lives.
MUSC is part of two major research groups working on pediatric cancers, including the Children's Oncology Group and the Neuroblastoma and Medulloblastoma Translational Research Consortium. MUSC is the only facility in South Carolina conducting pediatric cancer research.
Dr. Jacqueline Kraveka, a pediatric oncologist and researcher specializing in neuroblastoma, says advances already are being made in the treatment for the cancer, which is the third most common pediatric cancer behind leukemia and brain tumors in children under 5.
Kraveka says the work at MUSC is focused on the biology of neuroblastoma and what makes some forms high risk, medium risk and low risk. She noted that both Chase and Cooper had high-risk forms of the disease.
Supporting local research
Because of what MUSC did for the boys, Ringler formed Chase After a Cure in 2009 to directly support the efforts taking place at the research hospital on neuroblastoma. Cates joined her in helping with its first gala, which raised an impressive $45,000. Last year's event raised another $45,000.
They hope to double those proceeds at this year's event, to be held Feb. 19 at the Charleston Marriott's Crystal Ballroom.
The gala isn't the only fundraiser for the nonprofit. Last year, 11 runners raised $11,000 as part of an effort to run the OBX Marathon on the North Carolina Outer Banks. Students at Academic Magnet High School also hold fundraisers.
Kraveka says the money from Chase After a Cure helps out tremendously, in part because pediatric cancer research only gets 3 percent of the federal budget for all cancer research. And neuroblastoma is one of 12 major pediatric cancers.
In 2008, the federal government allocated $4.9 billion for cancer research. Of that, $190 million was for pediatric cancer, and of that, $18.6 million was for neuroblastoma. To put those figures in perspective, a C-17 cargo plane costs $237 million and the salary of the New York Yankees is $206 million.
Kraveka says money donated by Chase After a Cure helps pay the salaries of postdoctoral fellows working on research.
"It's only through research that we're going to learn more about childhood cancers and find cures," she says.
Reach David Quick at 937-5516.
If you go
The third annual Chase After a Cure Gala, presented by Sparc and GE Power and Water, will be 7 p.m. Feb. 19 in the Crystal Ballroom at the Marriott Charleston, 170 Lockwood Drive. Tickets, which cost $75, include an open bar; heavy hors d’oeuvres by chefs from local restaurants, including Halls Chophouse, 17 North Roadside Kitchen, Bocci’s, Wentworth Grill and Saffire Restaurant; live music by Plane Jane; and live and silent auctions. Visit www.chaseafteracure.com.
Cooper Cates was diagnosed with neuroblastoma at the age of six months after the pediatrician found a softball-size tumor in his abdomen during a routine well check.×
Good friends Whitney Ringler (left), founder of Chase After a Cure, and Lisa Cates are working on a fundraiser gala to benefit the neuroblastoma nonprofit.×
Chase Ringler, diagnosed with neuroblastoma at 3, endured eight rounds of high-dose chemotherapy, a bone marrow transplant, four rounds of radiation and Accutane treatments for six months.×