July 6, 2008

Four Poconos Teens Suffer Same Rare Cancer

By Daniel Axelrod, The Times-Tribune, Scranton, Pa.

Jul. 6--TOBYHANNA -- Fifteen-year-old Alexandria "Xandi" Robbins' 5-foot-7-inch frame dropped from 300 to 125 pounds in the 16 months before she died in September at her Tobyhanna home.

Former Tobyhanna resident Thomas Abramouski, 16, now of Moscow, was so tired and weak he fainted into his father's arms in March 2007. Doctors gave him a prosthetic knee.

A few months later, surgeons stopped the crippling pain of Thomas' friend and former neighbor Sonya Whitman, 15, by giving her an artificial knee.

Twenty miles away in Blakeslee, doctors replaced the hip and femur of the teens' classmate Nakia Irving. The 16-year-old's knee had swelled to the size of a brick in the summer of 2006. At the time, Nakia had hugged and comforted Xandi while the same Philadelphia hospital treated both girls.

Since 2006, doctors have diagnosed the four Pocono Mountain-area teenagers with the rare bone cancer osteosarcoma, which appears in just 400 new cases of U.S. children under 20 annually. Tom, Sonya and Nakia's cancer is now in remission.

Now, their parents are anxiously waiting for the state Department of Health to release a recently completed statistical analysis on whether the children are part of a designated "cluster" of rare bone cancers.

Cancer clusters are a greater than expected number of cases within a group of people, a geographic area, or a period of time. The Whitman family requested the state inquiry.

The teens' parents fear some outside toxin or radioactive pollutant might be responsible for the illnesses.

Xandi's mother, Pam Robbins, 51, is battling breast cancer, herniated back disks, carpal tunnel syndrome and diabetes. But the pain of losing her only daughter hurts the most.

Unlike the other children with osteosarcoma, whose tumors appeared near their knees, Xandi's osteosarcoma attacked her brain stem.

"There's something going on here," Ms. Robbins said. "How much cancer has to come into the area before someone says enough is enough already, let's see what's going on? I don't want to see another child die because no one is doing anything about it."

The families formed the Parents Against Childhood Cancer Support Group, www.paccsg.com, to comfort each other, track other Poconos children with rare cancers and find a cause for the cases.

State officials don't know when their statistical analysis on the cancers will be ready, said Stacey Kriedeman, a state Department of Health spokeswoman.

For such an analysis, experts at the department's Bureau of Epidemiology examine the number of recent rare cancer cases in an area. Those totals are compared with incidences between 1981 and 2005, the earliest and latest years recorded in the commonwealth's cancer registry, said bureau director Stephen Ostroff, M.D.

Then investigators develop a baseline rate of how often a certain cancer is likely to occur for a ZIP code, either per 100,000 or per 1 million people, said epidemiologist Samuel Lesko, M.D., the Northeast Regional Cancer Institute's medical and research director.

If the number of cancers in an area is unusually high and there is less than a 5 percent possibility they're due to chance, investigators might test water, soil and air for cancer-causing agents, Dr. Lesko said.

The state receives 50 to 100 inquiries annually from people suspecting cancer clusters, Ms. Kriedeman said, but many are easily explained coincidences.

Some amount of statistical analysis is done on nearly all of those citizens' inquiries. Further environmental testing happens on about five cases annually. Yet a cluster is only identified once every couple years, Dr. Ostroff said.

"Once (a cluster) is identified, it's exceedingly difficult to then say that, 'The reason this pattern is seen is because of x, y, or z,'" Dr. Ostroff said.

Complicating matters, if a cancer's cause was not genetic, humans are generally exposed to cancer-causing agents several years before they get sick.

That makes the toxic or radioactive source harder to locate, especially if an individual lived in many places. Meanwhile, investigators often don't know which pollutants to look for because they don't know what materials cause certain cancers.

Such information offers little solace to the teens' parents.

Bill and Olga Whitman cope by ceaselessly investigating the osteosarcoma cases. Their daughter, Sonya, has been in remission since March following her tumor's removal.

The Pocono Farms East teen was diagnosed last summer. Doctors inserted a titanium rod and artificial knee to replace the joint and a large chunk of the femur they removed.

"My hope would be that, if something is found, it can be cleaned up or dealt with, and the state will do it instead of sweeping it under the rug," Mrs. Whitman said.

Mr. Whitman, who manages a New Jersey water-conditioning company, is sending home and school water samples and pieces of the bone doctors removed from Sonya for radioactivity tests.

Sonya's diagnosis came just a few months after her friend, Thomas Abramouski, had an osteosarcoma tumor removed near his knee. Thomas, who lived four miles away from Sonya at Pocono Farms before moving to Moscow in 2005, has been in remission since December.

"If there is, and we believe there is, a specific cause of this, we want it revealed and rectified," said Lori Abramouski, Thomas' mother. But "we're expecting a fight. We're expecting to have to push" for answers.

Answers are all Nannet Irving wants. Her daughter Nakia was diagnosed with osteosarcoma in April 2006. She has been in remission since December 2006.

"You're not going to tell me that (an osteosarcoma) cell just starts to abnormally grow in a group of children like this," Mrs. Irving said. "It's mind-boggling. It makes you question everything. Is it the environment? The food? The water? The air? It has to have some causing factor."

The Irvings live at Stonecrest Park in Blakeslee. But Nakia attended the same Tobyhanna schools as the other children, around the same time. Nakia, Xandi and Sonya went to Clear Run Intermediate School. Thomas attended Clear Run Elementary School, which is on the same campus as the intermediate school.

School officials say the water is safe at Pocono Mountain School District's buildings. And no parents have expressed any concerns about radioactivity to school officials, district spokeswoman Wendy Frable said.

State law does not require the district to regularly test water for radioactivity because the school has a sedentary, non-community water system, she said. However, the district does conduct testing when new water sources come online. April 1996 tests revealed safe radioactivity levels at the Clear Run campus, Ms. Frable added.

Yet, similarities in the children's cancer cases still worry their parents.

A few cases "of a very rare condition can be very disturbing and upsetting to a community," said Dr. Lesko, of the Northeast Regional Cancer Institute. "But in most cases that's not enough to raise a statistical red flag that something is going on in a community. It can still be by chance."

The state's investigation may provide "a frustrating final outcome," he added. "I hope not, but often the investigation of clusters ends up with no satisfactory answer."

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