Pediatric Cancer: Military Families Search for Answers

On Jan. 7 th of this year, Amanda Whatley showed the world what childhood cancer looks like in a military family. “My name is Amanda Whatley, and my husband is a United States Marine. From July 2007 through November 2010, we lived in the Laurel Bay Housing Community while he was a drill instructor at Marine Corps Recruit Depot (MCRD) Parris Island in Beaufort, S.C. Our daughter Katie has cancer…and actually, there are eight children who have been diagnosed with cancer in the last few years that also lived in the Laurel Bay Housing Community.” [embed]https://www.youtube.com/watch?v=vEoghElE5_A&feature=share[/embed] Amanda, who received her daughter's cancer diagnosis in January 2015, goes on to explain that the purpose of the video was to tell Katie’s story with the hope that it would be shared with other military families that had been stationed in the area. Since this video hit the web, an additional five families have come forward with a connection, bringing the total to 13 and counting. An Unexpected Connection Melany Stawnyczyj’s 4-year-old son, Roman, was diagnosed with cancer in 2012. Her husband had also served as a drill instructor at MCRD Parris Island, from 2005-2008, and lived aboard Laurel Bay as well, where she and Amanda became fast friends. In fact, Melany and Amanda were actually pregnant with their children at the same time. Both families have since moved away from the Beaufort area, but in true military life fashion, their families have remained close . When Roman was diagnosed, Amanda was of course saddened by this, and supported her surrogate mil-fam from afar. When she was faced with her own child’s diagnosis after an emergency surgery due to organ failure, Amanda had a very candid conversation with the ICU physician, telling him that they had a really good friend whose son has cancer and that made it easier to explain to Katie what was going on. Upon learning that both women were pregnant at the same location and that both children were only a few weeks apart in age, the doctor urged Amanda to discuss this information with Katie’s oncology team because he didn’t think it was a coincidence. More Families Come Forward When Amanda and Melany discussed the potential connection between Roman and Katie’s cancers, the two quickly came to the determination that they needed to look deeper. Melany had been researching a potential correlation and found that there were underground storage tanks (UST) buried beneath the homes aboard Laurel Bay. These USTs were used to heat homes in the past, but have not been used in decades. The tanks have leaked Benzene, a known cancer-causing agent, into the soil surrounding the homes they were meant to heat. Amanda explains in the video that the Benzene leak is “ not a conspiracy theory; it is fact ” since documents of these leaks can be found in a simple Google search, having been put out by the government. There are memos, PowerPoint presentations , environmental clean-up orders and even meeting minutes from state health agencies, all available on the internet. Melany continued her research and found several other families whose children were diagnosed with cancer. She and Amanda decided it was time to take this information the Navy and the Marine Corps. In March of 2015, there was a meeting between the families and base officials regarding the potential connection. The family made a request in that meeting, asking that the military notify current and past residents about the investigation into this issue. An agreement was made that there would be an investigation, but it would appear that little progress has been made since that meeting…until Amanda had learned that yet another child that had resided on Laurel Bay had received a cancer diagnosis. Current Updates The families had received monthly updates about the investigation since that March 2015 meeting, all of them saying that there was no new information and that the investigation was still ongoing. Melany informed the investigation team’s point of contact about the new diagnosis, and it was his lack of response that threw Amanda over the edge. “He didn't even really acknowledge that another child had just been diagnosed with cancer, ” she said. That’s when she decided to make the YouTube video, which has been viewed more than 49,000 times. The Concerned Military Families United By Pediatric Cancer is a Facebook page that was created by Melany in an effort to fill the gap of information and find ways of reaching out to current and past residents. “It's a complete shame that we, the families suffering, are the ones who have done all the outreach and awareness,” Melany stated. In the time since the video has been posted, this story has been featured on FOX , CBS , Yahoo , Military Times , USMCLife , The New York Daily , state and local news outlets and countless blogs across the country. There have been reports that British military officials have requested soil samples from the investigation as well, since they have military families living aboard installation housing in Beaufort. Marine Corps Air Station (MCAS) Beaufort leadership has responded to the media attention by holding two Townhall events and has since created a resource website . It was this public relations effort that led the Navy to put out guidance to military healthcare providers worldwide, making them aware of any current or former Laurel Bay residents seeking care. Providers have been advised that physical exams for patients concerned about possible exposure to contaminated soil should focus their attention on the thyroid, lymph nodes, heart, lung and abdomen in order to establish a baseline of health. The Bigger Picture At this time the investigation is still ongoing, and base officials are reluctant to release all of the data as it begins to trickle in. “I have tried to avoid providing incomplete or inaccurate information, which could have caused speculation,” states the MCAS Commander, who also resides aboard Laurel Bay. Although it is understandable that installation officials don’t want to create further speculation, the only way to truly eliminate that is to provide information as it filters in. Much of the information that is already available is enough to create confusion without clarification or additional context. People often rely on assumption to fill in the blanks if they aren’t able to view a situation in its entirety. But as Melany states, “We’re not scientists, we’re just trying to get information.” She is requesting that the raw data be released as it is received by officials. While this would typically stray from normal procedures, there really is nothing "normal" about a situation like this…especially as it pertains to families who have since moved from the area to fulfill their obligations to the military. “As military families, we move from duty station to duty station, complying with the military orders given. Our military families diagnosed with childhood cancer are like any other military family who move.” She goes on to add that reports to state health agencies are made only in the state where the diagnosis is received. In this case, “South Carolina would not have counted each of our diagnoses because another state has claimed it. The state and federal organizations need to recognize and clarify this” when they don’t see an increase in the cancer rate for that area. “Reporting otherwise, is disservice to all military families,” Melany states. I reached out to the Center for Disease Control (CDC) regarding their role in identifying cancer clusters in a population that wasn’t stationary for very long. I wanted to know because my Marine family was also stationed in Beaufort and we lived aboard Laurel Bay as well….for EIGHT YEARS. In my inquiry, I posed the question: “How does the CDC determine if there is an unusual spike or trend in a diagnosis based on a specific location when those individuals aren’t diagnosed until after a relocation? How can a correlation between hazardous contamination and subsequent cancer diagnosis (or cluster of diagnosis) be made if that population isn't stationary long enough to determine a correlation?” I received a fairly generic response that didn’t even address the mobility of the military community. They stated that state health agencies are the “first level of response,” meaning the states are responsible for identifying potential clusters and then follow up with the CDC. According to their response: “A cancer cluster is a greater-than-expected number of cancer cases that occur: A. Within a group of people; B. In a geographic area; or C. Over a period of time.” If a diagnosis is only tracked in the state a person is diagnosed in, the potential cause could (and does) go unaddressed. The CDC, along with state health agencies, should start looking at different ways to track the health events that impact our community across the board. As of today, even with the recent push of new information from base officials, there is still much confusion in the Laurel Bay Community. Residents have reported they will call one point of contact only to be referred to someone else, or their inquiries aren’t being addressed. Conflicting information is being given about specific resident addresses and some residents have reported never receiving information on their soil sample results…only to be told later that their levels were high and are still being investigated. The entire purpose of this article and the goal of the families involved, is to promote awareness to those who have and do live aboard the installation. At this point all parties are cooperating with one another, but families are looking for more transparency in the process, to include notifying new residents so they are able to make informed decisions about their living arrangements. They would also like the option, depending on the circumstances, to be let out of their leases if contamination is found, and for investigation officials to have a more aggressive approach to outreach. From the families involved and their perspectives, they just want answers and they want to inform others to make sure this doesn’t happen to other families. Melany and Amanda, as well as the other families, just want to make sure that other families don’t go through what they had to endure.because even ONE more cancer diagnosis is one too many. If you have questions or concerns regarding the Laurel Bay Health Study , email base officials at laurelbayhealthstudy@usmc.mil If you or someone you know believe your family may be affected, message the administrator of the Concerned Military Families United By Pediatric Cancer on Facebook. For more information about childhood cancer, visit the link here . Connect with us on Facebook!

Pediatric Cancer: Military Families Search for Answers

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