Rare childhood cancer hits 3 area families
<http://www.fdlreporter.com/article/20081214/FON0101/812140570/1985>http://www.fdlreporter.com/article/20081214/FON0101/812140570/1985 By Dorothy Bliskey • Special to The Reporter • December 14, 2008 Childhood cancer researchers and Wisconsin Department of Health officials consider it unusual that three Fond du Lac area children who live within 12 miles of each other were diagnosed with a rare form of childhood cancer nearly at the same time. The disease neuroblastoma is a rare and deadly form of cancer that strikes about 650 children nationwide each year. Three area families, each with a child suffering with high-risk stage four neuroblastoma, have hopes for a better year ahead. The youngsters have tolerated a regimen of treatment since being diagnosed in April and May of 2008. For the past seven months, Lieym Bovee, 1-year-old son of Tom and Angie Bovee; Lydia Ford, 4-year-old daughter of John and Bernadette Ford; and Lilyana (Lily) Barthuly, 4-year-old daughter of Josh and Penny Barthuly, have endured extensive surgeries and aggressive chemotherapy in preparation for stem cell transplants that will hopefully save their lives. Stem cells In the process, their own stem cells are removed, stored and returned to replenish their bone marrow with good cells once chemo and surgery have chased the cancer cells from their bodies. "On the surface, three cases in Fond du Lac looks excessive," said Dr. Leslie Robison, a researcher who is chairman of the department of epidemiology and cancer control at St Jude Children's Research Hospital in Memphis, Tenn. "But to evaluate this cluster, you really need to look back at the Fond du Lac area and determine the occurrence of neuroblastoma over time." Robison noted that that neuroblastoma represents only 8 percent of all cancers among children and strikes 1 in 100,000 children annually. "It could be a random event, but state statistics are required to determine the degree of excess these three cases may represent," Robison said. "It's very rare." Laura Stephenson, who gathers and tracks cancer statistics for the Wisconsin Department of Health in Madison, reports that 53 children statewide were diagnosed with neuroblastoma during the five-year period from 2000 to 2004. Two of those 53 children were from Fond du Lac County. According to American Cancer Society statistics, childhood cancers in Wisconsin during a five-year period from 2001 to 2005 claimed the lives of 26 children statewide. "We don't have statistics that show Fond du Lac County specifically because there were three or fewer deaths from childhood cancer in that time frame," said Jen Thompson, health promotions coordinator at the American Cancer Society branch in De Pere. "Milwaukee County, for example, had five deaths." Lydia, Lieym and Lily are all being treated at Children's Hospital in Milwaukee. Lily Barthuly received the first of two stem cell transplants there in late October. Lieym Bovee received his stem cell transplant around Thanksgiving. Lydia Ford will receive her transplant soon. "She's about a month behind the others," said Bernadette Ford, her mother. Research study The three children are enrolled in a research study in which a specific drug is being tested, and the effectiveness of having two stem cell transplants versus one is being analyzed. Children in the study are picked at random as to who receives more than one stem cell transplant. Of the three children, so far Lily is the only one slated to receive two transplants. The parents of Lydia, Lieym and Lily think it is odd all three children were struck with such a rare cancer at nearly the same time and locale. "Almost anyone I talk to thinks it's really strange to have three cases in the area," said Penny Barthuly, Lily's mother. "I do, too. Some nurses I talked to think it's strange and wonder if there isn't some cause in our area. Doctors, however, just think it is coincidental." Bernadette Ford said, "We were told that there are always lots of funds available for healing and cures, but that there's not usually as much funding for researching the whys." The three cases of neuroblastoma are also on the "radar screen" on a state level. "Yes, it's unusual," said Dr. Henry Anderson, chief medical officer for the Wisconsin Department of Health, Division of Occupational and Environmental Health. "For a disease that rare, even one occurring is unusual. But with so few numbers statewide, analysis on a national rather than state level would make more of an impact. Trying to find commonality in so few can be futile. But there could be an interest from researchers at the university here. What you can do with a rare disease is to find out who is studying it." He noted that so far, there are no proven chemical or occupational causes to neuroblastoma. The cause How important is learning the cause? "It's extremely important," said Robison, from St. Jude Children's Research Hospital. "Only by understanding the cause do we have potential to look toward prevention. However, we need to recognize that even by understanding the cause, we still might not be able to prevent it." Closer to home, medical experts agree that finding a cause is the only way to prevent a disease. "As long as we don't know causes, we're not going to have prevention," said Dr. Meghen Browning, pediatric oncologist at Children's Hospital of Wisconsin and assistant professor at the Medical College of Wisconsin. "But if we could find and reduce contributing factors, which is very different from causes, we might reduce pediatric cancers." Browning says the timing of the diagnosis of the Fond du Lac area children seems unusual. "But chances are high that it is a statistical blip," Browning said. "No pediatric cancer cluster has ever been identified. It seems, unscientifically, that we see things run in streaks. We'll have a series of patients with a specific tumor, then not see that tumor again at all for a few months." Most cancer researchers, Browning says, believe that a combination of multiple events such as toxic exposures, along with susceptible genetics, might be a cause of cancer. However, that theory, she says, is unproven. "Pediatric tumors are, in general, not inherited. But we don't know if a slight lack of resistance to cancer might be. Some of those events might be toxic exposures, but we don't know that, and it would almost certainly have to be a combination, rather than any one exposure." Statistical rarity Bryon D. Johnson, Ph.D., who is also on staff at the Medical College of Wisconsin and works as an investigator and researcher at Children's Research Institute, indicated that the three Fond du Lac area cases of neuroblastoma all at one time are a statistical rarity. "Based on current knowledge, the three cases would be considered as coincidental," Johnson said. "It doesn't appear that the environment plays a major role. Since the cause of neuroblastoma is unknown, there is nothing on the horizon for preventing the disease." Johnson says research in his laboratory is centering on novel ideas for treating high-risk neuroblastoma, with the focus on immune-based therapy. "This involves learning how to make a person's own immune system see their cancer as foreign and destroy it," he said. "In my opinion, it is likely that new and effective treatments will probably consist of several different strategies that work together to be effective." Help for digging deeper into potential causes and cures for neuroblastoma arrives in the form of research. The American Cancer Society provides funding for it. Currently, the ACS has six researchers around the nation studying neuroblastoma at a cost of $4.5 million. "One of those researchers is housed at the University of Wisconsin in Madison," said Jen Thompson. "And 20 percent of her research grant is on neuroblastoma. "The American Cancer Society's Web site (<http://www.cancer.org>www.cancer.org) has clinical trials that may potentially be open to the (Fond du Lac area) children diagnosed." In a positive light, the parents of Lily, Lieym and Lydia are facing the New Year with hope for better health for their children. So far, the youngsters are marching through the aggressive treatments with innocence and resiliency only a child can exhibit, as illustrated recently on the caringbridge Web site where Lieym's mom, Angie, frequently writes. Hospitalized and suffering with a sore mouth and digestive tract and vomiting blood, Lieym paused for politeness. "He is still not eating anything," Angie wrote. "But, if this says anything about Lieym, he feels so crappy but still said, 'Bless you' when his dad Tim sneezed." <*}}}>< <http://www.halfthekingdom.org/please%20donate.html>Donations are needed and very much appreciated <*}}}>< <*}}}>< <http://www.holypostage.com/>Holy Postage <*}}}>< <*}}}><<http://www.halfthekingdom.org/>Half the <http://www.halfthekingdom.org/>Kingdom!<*}}}>< Lord, may everything we do begin with Your inspiration and continue with Your help, so that all our prayers and works may begin in You and by You be happily ended. We ask this through Christ our Lord. Amen. --~--~---------~--~----~------------~-------~--~----~ Please note that I do not send or open attachments sent to this list. You received this message because you are subscribed to the Google Groups "Catholics on Fire" group. 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