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A quest for answers

By Katie Worth
Pacific Daily News
[email protected]

June 27, 2005 - "Dad, my hair's starting to fall out. It's on my pillow," said 10-year-old Caitlin Spracklen to her father matter-of-factly."

Paul Spracklen leaned down and touched his daughters hair, thick and blond, and long enough to drape past the middle of her back.

Yeah, I know, honey, he said gently. We knew that would happen when you started the chemo.

Caitlin paused. Well, do you think you could do me a favor and brush it all out?

Spracklen looked at his daughter blankly. What do you mean? he asked.

Well, if we brush it, we can save it, and we can send it to the wig company, and some other little girl can have it who might need it.

For a moment, Spracklen just stared at his daughter as they stood in her room in the childrens ward of Balboa Military Hospital in San Diego.

Finally, nodding, he said Yeah, lets do that, honey.

Spracklen sat down behind his daughter and began pulling the brush through her hair in careful, tender strokes. His eyes rimmed with tears as hair came out in threads and clumps. He felt shattered by this girl of his whose little body was waging a fierce war with the leukemia inside her. This girl who, facing a likely death, still managed to think about some other kid down the road who might need a wig.

Tears trailed down his face. Spracklen wept as his daughters hair fell in strands through his fingers.

As told by Lt. Paul Spracklen

In March 2002, when Caitlin was first diagnosed with leukemia cancer of the blood the Spracklens thought of it as a horrible, but isolated, incident. They would soon learn this, tragically, wasnt the case.

In the months following Caitlins diagnosis, Spracklen would learn of more than 10 other children who had been diagnosed with leukemia and other rare cancers. Some survived; others did not.

What did all those children have in common? They had all lived in military housing areas on Guam.

The Spracklens had lived in the Apra Heights military housing complex in Santa Rita from 1998 to 2000 while Spracklen, a lieutenant in the Navy, served on the USS Frank Cable. When his orders changed, the family moved to San Diego, and they were still living there when Caitlin got sick.

After Spracklen began to learn about other sick children, he asked the Defense Departments investigations arm to do a study on the incidence of leukemia among families who had been stationed on Guam.

After a prolonged and sometimes arduous effort on Spracklens part, the Navy finally released the results of that investigation. In their initial search through the militarys medical databases, the Navy had found some 17 military children whose families had been stationed on Guam and who were later diagnosed with leukemia.

However, after looking at the 17 cases more carefully, investigators eliminated all but seven of those children from the study for a variety of reasons, such as their parents were Air Force, not Navy; the diagnosis had been changed; their parents had since retired from the Navy; or a Guam duty station couldnt be established for some reason.

But even with the seven cases retained, the Navys Bureau of Medicine and Surgery said the incidence could be defined as a cancer cluster because it was higher than the national average.

The Navys Surgeon General asked the Air Force to do a similar study for Air Force dependents. In October 2003, an Air Force office in Texas produced a memorandum on the results of that investigation.

The Air Force calculations suggested that Air Force children on Guam were three times more likely to develop ALL (Acute Lymphocytic Leukemia) than the national average. However, there were not enough cases included in the study to be statistically significant, the memo concluded.

At the same time the Navy released the results of the investigation, it also published a fact sheet summarizing the results. The fact sheet stated that the leukemia incidence on Guam was not large enough to indicate that a problem or an unusually elevated leukemia rate exists.

Spracklen doesnt agree. He believes something really wrong may be going on in the military housing areas on Guam, something that has taken childrens lives.

When Lt. Spracklen learned of his daughters diagnosis, he was on an aircraft carrier floating in the North Arabian Sea.

Spracklen had just gotten off watch when a friend on board called telling him to contact his wife because one of the Spracklen kids was apparently in the emergency room.

Oh, great, Spracklen recalls thinking. My boys gone and broken his leg again.

But when he reached his wife in the childrens ward of Balboa, he wasnt met with a groaned story of a roughhousing little boy. He was met instead with a choked silence. His wife could barely talk. Finally, she passed the phone to a doctor.

No, no broken bones, he learned. And it wasnt spunky 7-year-old Michael or his toddler Sabrina, who had just turned 3.

It was his eldest, 10-year-old Caitlin. Caitlin of the boundless energy, Caitlin of the tea parties with dolls and daddy, Caitlin of the thick blond hair and quick, wide grin. Caitlins red blood cell count was significantly low, and she had virtually no functioning white blood cells or platelets left in her small body.

Spracklen knew what that meant: hed worked as a chemistry and radiological controls assistant on a nuclear-powered aircraft carrier and had been trained in blood chemistries. He knew that a low red blood count and no immune system meant only one thing, and the news sideswiped him, leaving him feeling frazzled, horrified, scared, devastated.

So you suspect its cancer or leukemia? he asked the doctor.

The doctor replied that he did.

Spracklen waited three torturous days for the ship to dock in Bahrain and took the first flight home. He spent those three days combing through everything he could get his hands on about leukemia.

When he wasnt reading, he prayed, hard.

Spracklen had been home for only a few days when he got the first inkling that something bigger may be going on.

Caitlin was already tired of the hospital food, so he went downstairs to pick up some McDonalds. As he was walking back into the childrens ward in Balboa, fries in hand, he saw a woman that looked familiar.

I dropped off the food and went back out and said, Do I know you? You look familiar to me, and she said Yeah, Im Cathy Baughman. We were neighbors on Guam. Thats when I found out that her 4-year-old son Will had leukemia, he said. That struck me as really weird, that we would live on the same street and both of our children had leukemia now.

Will was lucky. He had acute lymphocytic leukemia, or ALL, which is the less deadly of the two most common forms of the disease. About 85 percent of children with ALL survive, according to the National Cancer Institute. Wills leukemia was already in remission.

Caitlin, the Spracklens had just learned, was not so fortunate. She had acute myelogenous leukemia, or AML. Without a bone marrow transplant, only about one in four AML patients survive, the Spracklens learned.

When they met their former neighbors in Balboa, the Spracklens were in the midst of an anxious two-week wait for a test that would tell them whether anyone in the family was a genetic match with Caitlins bone marrow which could determine whether she lived or died.

A bone-marrow transplant would basically double Caitlins chances of survival, but it was a dice-roll whether anyone in the family would be a close enough bone-marrow match to donate. Each of her two siblings had about a 25-percent chance at matching the four out of six proteins necessary for a safe transplant, he said.

That was a very, very long two weeks, Spracklen said afterward, his brow furrowing at the memory. A very long two weeks.

After meeting Wills mom, Spracklen called and e-mailed Naval Hospital Guam to see if the hospital had been treating other children for ALL or AML, but officials there said they hadnt noticed any recent increase in leukemia cases.

The coincidence still seemed strange to Spracklen, but soon it was stashed at the back of his mind because suddenly he had something more pressing to think about: namely, the care for not just one, but both of his daughters.

Miraculously, 3-year-old Sabrina was found to be a perfect, six-for-six blood-marrow match for her older sister.

News of the third case came in August, right after Sabrina underwent the long needle of a surgeon and her bone marrow was dripping into Caitlins blood stream through an intravenous tube.

Caitlins body hadnt immediately rejected Sabrinas bone marrow, which seemed to be a good sign.

Spracklen was on the computer in the playroom of the childrens ward one afternoon when he got the e-mail from his old friend Ken Thompson.

Thompsons teenaged son was real sick, the e-mail read. He had been diagnosed late with AML. The prognosis did not look good.

The news shook Spracklen deeply. Hed known Thompson from way back, and they had later served together on Guam. Hed known his kid, Richard, too. He was a bright, athletic teenager, his fathers only child.

I immediately thought that there has to be some link with Guam. There was no way that I was the only person who knew the only three leukemia cases on Guam that just couldnt be right, Spracklen said.

That same day, he called the Department of Defense Inspector General hot line and asked them to begin an investigation into Guams leukemia rates.

In the months thereafter, he began doing a bit of his own nosing around. He talked to friends and colleagues whod also served on Guam and began sifting through the latest research on childhood leukemia.

When theyd lived on Guam, the Spracklens and the Baughmans had lived in Old Apra Heights in Santa Rita, toward the south of the island. But the Thompsons, who were on Guam from 1998 to 2000, lived at the north end of the island, in

NCTAMS the U.S. Naval Computer and Telecommunications Area Master Station housing area also known as Finegayan.

In his research, Spracklen had learned of studies going on about a childhood leukemia cluster that had sprung up in Fallon, Nev., near a naval air station. Researchers were looking into the possibility that benzene, a component of jet fuel, could have factored in to the cluster. Both Finegayan and Old Apra could theoretically be in the flight paths of Guams airports, Spracklen thought. Could there be a connection?, he wondered.

Spracklen also learned that Guam has unusually high rates of radon, a naturally occurring, odorless, colorless gas that emits radiation as it breaks down. Radon is known to cause cancer if it accumulates in homes.

It was in the midst of this research that the fourth case surfaced. This one hit him like a sucker punch to the gut: The girl had been just a year or two older than Caitlin. Her family had lived down the street in Old Apra. As it happened, he learned of her illness the day she was buried dead of complications with ALL.

It was then that Spracklens doubts ended and his mission began.

Once is a terrible tragedy, twice is a horrible coincidence, three times is enemy action and four times is inexcusable, he wrote friends and colleagues in a mass e-mail the day he learned of the girls death.

He sent the e-mail to everyone he knew, explaining the remarkable, tragic coincidence that he had discovered, warning parents to keep an eye out for symptoms and asking for help in spreading the word.

The mass e-mail met a forceful response. Within a few weeks, as the e-mail circulated through the ranks of service members and their dependents who had been stationed on Guam, Spracklen learned of four more cases of leukemia and an additional three cases of other rare childhood cancers, including two sarcomas and one brain tumor.

All had occurred in the two neighborhoods on Guam.

He also received e-mails from concerned families currently stationed on or moving to Guam: Should they be worried for their children? How could they protect their family from such a horrendous misfortune?

To these, Spracklen and his wife replied as sensitively and as honestly as they could, dispensing information about what signs to look out for, and also about how little is known about the disease and its causes.

There are lots of kids out there who were on Guam who are just fine, Spracklen wrote to one woman who was worried about moving to Guam with her husband and children. My other two kids are a prime example. Right now, its just a huge, tragic coincidence.

As Spracklen was learning more and more through his own research, he was also beginning to hit walls as he asked the military to investigate the situation.

About two weeks after first filing his inquiries with the Department of Defense Inspector General in August 2002, he called back, asking what the status of the investigation was.

The response was that the investigation hadnt begun and would be handled in the order that it was received.

Spracklen recalls feeling the blood rushing to his face.

So you mean to tell me that no matter what the case is, you take it in the order it was received? Youll give a case where a sailor hit his thumb with a hammer the same priority as a case where kids are popping up with leukemia and it could be because they were stationed on Guam? he answered angrily.

Oh no, sir. Well get right on this, the DOD official replied, humbled, Spracklen recalled.

They may have gotten right on it, but the investigation and its results eventually found their way into a bureaucratic quagmire, Spracklen said.

The DOD Inspector General forwarded the inquiry on to the Naval Inspector General, who sent it on to the Navys Bureau of Medicine and Surgery better known to sailors as BuMed. BuMeds Navy Environmental Health Center conducted the study.

The study was completed in March 2003, after which it was sent up to the BuMed chief, who added a few recommendations and forwarded it back to the Navys IG in May.

The Naval Inspector General considers this case closed, the deputy naval inspector general wrote in a letter to the DOD IG that June.

The case may have been closed, but it would take Spracklen nearly nine more months to convince them to give it to him.

After calling and e-mailing the DOD IG multiple times and finally submitting a formal status request, he received an e-mail in September 2003 stating the case had been closed. In order to get more specific information about it, Spracklen would have to submit a formal written request under the Freedom of Information Act.

All right, Ill play their game, Spracklen thought, and he sent the written request.

Several weeks later, he received the reply. The IG sent back every document associated with the case, including all the information Spracklen himself had submitted, responses to him and a couple of internal memos.

They had sent him every document associated with the report, with the exception of the report itself.

After more inquiries and calls, Spracklen still hadnt received what he was looking for. Finally, at the end of January 2004, nearly a year and a half after first filing his complaint with the Department of Defense Inspector Generals hotline, Spracklen wrote one last letter, this time trying to make an appeal from one parent to another.

I would like to see a final copy of the Navy Surgeon Generals report, he wrote. If you have children, I would like for you to take a moment to envision them with a tube implanted into their side. This tube runs under the skin, up their side, across their shoulder and into the main artery that exits the heart. This tube is there to ease the number of needle sticks they will be required to receive for all the chemotherapy, blood transfusions, medications and intravenous solutions they will be given.

Your child has already lost their hair, he continued. They are pasty white in complexion, they have no energy and thankfully sleep most of the time when they arent awake and in pain from sores they develop on the rear and in their mouth as their (intestinal) tract lining disappears from the chemo. They lose a lot of weight. They run the risk of bleeding to death internally due to low platelets counts.

Since they have no immune system, the doctors give them antibiotics that are so powerful they send your child into seizures if the doctor doesnt first medicate them, he wrote. You get to watch as your child receives over 40 pints of blood over a years period and 30 units of platelets.

Spracklen concluded that he felt he had been very patient with the process.

Please see what you can do about getting me a copy of the Navy Surgeon Generals report. Id really like to know how many cases they were able to find. Im certain there are more than eight leukemias, three sarcomas and one brain tumor, he wrote. I just want to know the facts.

A month later, he received the report.

The Navys investigation confirmed at least a few of Spracklens suspicions: There was, it concluded, a leukemia cluster among Navy kids who had lived on Guam.

According to the report that Spracklen finally had in his hands, the investigators had begun by searching the militarys medical databases for Navy children who had lived on Guam and were diagnosed with leukemia from 1993 to 2002.

In their initial search, the investigators found 17 children who seemed to fit this description.

Of those, four had been diagnosed with AML the more deadly of the two most common childhood leukemias, which Caitlin and Richard had been diagnosed with. Thirteen had been diagnosed with ALL, the more common and typically less lethal childhood leukemia, which 4-year-old Will was being treated for and Caitlins playmate had later died of.

Investigators explained that they had looked at the rates of the two diseases separately.

After getting the initial pool of 17 children with the disease, investigators looked more closely at each case to see if they should be counted in the study. Most of those cases ended up being excluded from the study.

Of the 13 cases of ALL, the investigators ultimately retained only five in their study and excluded eight:

s Four cases were excluded because they were Air Force dependents, not Navy.

s One case was excluded because the childs sponsor retired before the date of diagnosis.

s In one case, the diagnosis was confirmed not to be ALL, and in another case, it could not be confirmed whether the child had lived on Guam, the report said.

s The eighth case of ALL was excluded, the report said, because the child had been diagnosed before the study period began.

As for the four AML cases that had been identified, only two were retained. The other two were excluded because, the report said, a Guam duty station could not be confirmed.

The investigation did not identify where on the island the children lived.

The report used the retained cases to determine whether there was a leukemia cluster, using the CDCs definition as a greater-than-expected number of cancer cases in a group of people, in a geographic area or over a period of time.

The Navy used different models to look at the rates and determine whether there was a cluster. One model found that the ALL rate was nearly five times higher than estimated national averages, while another model found a rate about seven times higher than the estimated national averages.

But compared to Navy rates which are about twice national estimated averages the leukemia rate on Guam seemed significantly but only slightly higher than expected in one model, the report said, and not noticeably higher in the others.

Ultimately, the cluster was determined not large enough to merit further investigation, wrote BuMed Chief M.L. Cowan in a memo to the Naval Inspector General.

Although the rate met the definition of a cluster, it was not as high as in many other clusters that have occurred in the United States in the past, Cowan wrote. Prior studies by the CDC on ALL clusters significantly larger than this one have all failed to make an environmental link to the disease.

Because of the smaller size of this cluster and the transient nature of the Naval population with the resulting low probability of finding a cause, the CDC was not requested to attempt to find an environmental link, Cowan concluded.

At almost precisely the time the Navy finally released the report to the Spracklens, the same office that had conducted the investigation published a fact sheet summarizing the investigations results.

The fact sheet, posted on the Navys Guam Web site and made available to anyone who inquired about leukemia on Guam, stated in bold and italicized font that living in Guam does not appear to have increased the risk of leukemia among Navy children studied.

The results indicate that Navy children who have lived on Guam have a similar incidence rate of both ALL and AML as other Navy children world-wide, the pamphlet reads in another highlighted section.

The pamphlet states that rather than compare the rates to the National Cancer Institutes estimate of the cancer rates for the U.S. population, a better comparison is to other Navy children.

(The Navy Environmental Health Center) concluded that other Navy children are the best comparison group for this study because the study group is a subset of this much larger, but similar group, the pamphlet read.

Also put on the Web was a Question and Answer about the leukemia study. One question was Do Navy children have a higher rate of leukemia than children in the general U.S. population?

The answer was direct:

There is no evidence or reason to believe that Navy children have higher rates or risks for leukemia than any other children in the U.S. population, the answer read.

When Spracklen saw this fact sheet on the Navys Web site, he was enraged.

I dont know how they got from there is a cluster to there is no increased risk. Or from the fact that Navy kids have twice the leukemia incidence of the national average to theres no evidence of higher rates, he said, shaking his head.

What theyre really saying is We dont believe theres a problem because we dont want to alarm you, he said.

But the Navy scientists who did the study and wrote the fact sheet said that it was unfortunate that the rate had been described as a cluster because they dont believe it truly is.

We apologize if our statements were misleading, said Capt. Christopher Rennix in a written response to questions about the fact sheet. Rennix was among the epidemiologists from the Navy Environmental Health Center who worked on the investigation.

In retrospect, it is unfortunate that BuMed chose to use the word cluster to describe this study. The statement in the fact sheet is accurate because we believe the evidence so far indicates that there was no cluster. The fact sheet was designed to present all the results in this very technical study report in plain language.

Rennix went on to explain that the five cases of ALL that were retained for the study were spread over 10 years, with only two in a one-year period. A more classic cluster has a few cases over one or two years, and then a period where there are several cases, and then it slows down again. This is how it occurred, for example, in Fallon, Nev., he said.

When asked about the fact sheets statement that there is no evidence or reason to believe Navy children have higher rates of leukemia than other children, Rennix replied the national averages used are simply estimates, whereas the Navy rates are actual.

The (estimated) rates do not include information on every person in the (United States). They are averages calculated using a portion of the U.S. population, Rennix wrote. Navy children are special populations when compared to the rest of the (United States) in that they are highly mobile, very young, and have almost 100 percent access to health care.

The only thing that can be inferred is that the Navy population is different than the general population, he said.

So were the high leukemia rates on Guam caused by random chance or is there really something on Guam making children sick?

This is a question that, unfortunately, we may never know the answer to, according to epidemiologists who looked at the study.

Part of the problem, said Beverly Kingsley, an epidemiologist for the CDC in Atlanta, Ga., is that no one knows precisely what causes childhood leukemia in the first place. The best guesses now are that its caused by a complex interaction between environmental and genetic factors.

And its entirely possible that there are natural cancer clusters, she said, not unlike the grouping of pool balls on a table.

But most experts believe that some things in the environment can increase a persons likelihood of getting leukemia. For example, some scientific evidence point to radiation, tobacco smoke and benzene as possible factors, Kingsley said.

The reality is its been very difficult for scientists to link leukemia clusters to specific causes in the environment, she said.

There have probably been thousands of cancer cluster studies and there probably have been one or two that have actually been able to link something environmental going on, she said.

Making things complicated is that theres usually a lag time of years or even decades between when a person is exposed to a chemical and when they actually get the cancer. By the time the cancer shows up, its nearly impossible to go back in time and measure what was in the environment when the cluster began, she said.

Its almost impossible with the science that we have now to assess what was in the environment when the disease was starting or initiated, Kingsley said.

The mobility of military families complicates the situation as well, because they may be exposed to many environments for just a few years at a time, she said.

When asked whether the community should worry about the increased rates, Kingsley paused to think for a moment.

I understand that they might be upset or thinking that theres something wrong, but at the same time, clusters pop up everywhere, either because of statistical chance or because there might be something going on environmentally. Either way, they do pop up everywhere, she said.

So you could be concerned, you could move somewhere else, and then a year down the road, someone could say we have a cluster in this new town. Is it a real cluster? Not a real cluster? Very hard to discern, she said.

There was a moment, Spracklen recalls, when he realized the enormity and precariousness of what his family was living through.

It was right before the surgeries that would take bone marrow out of toddler Sabrinas little body and put it into Caitlins.

I can still remember, I was sitting there holding Sabrina, making sure she understood that she was gong to be a hero and save her big sister, and I remember thinking &, he paused, hesitating to say aloud the unthinkable.

Its just that sometimes things happen, you know? Sabrina was going under anesthesia. I was running a risk right then of losing both of my girls. Not just one, but possibly both. What do you do there? What decision do you make? he asked.

He shook his head.

I just put my faith in God and went ahead with it, but still, what do you do?

At the time, the Spracklens were counting life in potential tragedies. Today, nearly three years after that agonizing moment, theyre counting life in miracles.

The first miracle occurred long before Caitlin ever got sick: when Sabrina came into the world.

Sabrina had been the Spracklens surprise baby: She wasnt supposed to happen. After the Spracklens had Caitlin and then their boy, Michael, Spracklen had had a vasectomy. Needless to say, he and his wife were shocked and unprepared when, four years later, against all probability, they learned they were expecting another baby.

And what a miracle it turned out to be: Caitlins brothers bone marrow was not closely enough matched to Caitlins to be a viable donor, nor was anyone else in the family. Without Sabrina, Caitlins prognosis could have been terribly, tragically different.

Another miracle Spracklen counts is that Caitlins leukemia was caught early. A few weeks, he said, can mean the difference between life and death, or the difference between a hard fight and a very, very, very hard fight.

One of the biggest gifts has been that the family has drawn closer to its faith.

We couldnt have gotten through this without God, he said. Im not even sure we would still be a family without God.

Other miracles occur daily. Sometimes he thanks his lucky stars that he can nag his daughter to do her homework or argue with her over daily chores.

I get to yell at my daughter. Praise be to God, he said, smiling.

Today, all three Spracklen kids are healthy. In a few months, Caitlin will be entering the ninth grade. Other children have not been so lucky a reality Spracklen is acutely aware of.

Spracklen said he still is searching for answers about what happened on Guam: Whether the cluster was a statistical anomaly, as the Navy maintains, or whether there may have been an environmental factor involved. He acknowledges these may be answers hell never get. In the meantime, however, he will be taking no chances with his family.

When asked if he would ever live in military housing on Guam again, Spracklen sat lost in thought for a moment.

If the Navy gave me orders, I would return, he finally said. But there is no way in Gods green earth that I would move my family back to Guam, because I believe there is a risk there. Im certainly willing to put myself at risk for my country, but I cant do it to my children again.

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