Peninsular Thinking

PORT ORCHARD — Kay Arens is quick to point out that President Barack Obama on his visit to Seattle Feb. 17 knew nothing of the drama that was unfolding at Seattle Children’s Hospital, as baby Kamryn Elizabeth Aubrey of Port Orchard lay waiting for her heart transplant.

Kamryn is now doing quite well, but her medical complications place a financial burden on her parents, Kelli and Mike Aubrey. Arens, a friend of the baby’s family, called to note a fundraiser concert Saturday in Gig Harbor.

Kelli Aubrey is quick to point out that, contrary to some stories going around, the president’s arrival did not delay the surgery. It did add one more layer of anxiety to an already tense situation.

Kamryn was perfectly normal at birth and for her first two weeks of life. Then suddenly she went downhill. Her breathing became labored, and she was lethargic. She didn’t eat or cry normally. On Christmas Eve, her feet started turning blue.

The Aubreys rushed Kamryn to Mary Bridge Children’s Hospital in Tacoma. The baby’s temperature was 94 degrees. Tests on Christmas Day revealed a heart defect that turned out to be left ventricle noncompaction dilated cardiomyopathy. The condition involves defective development of the heart tissue, resulting in ineffective pumping of blood. The prognosis for patients is poor, and a heart transplant typically is needed.

Kamryn was a “surprise,” the youngest of five in the Aubrey family. Kelli and Mike have been married 23 years. Kamryn was born not long after both, who are social workers, had been laid off from a Gig Harbor foster care agency. Mike has since found work with the state.

The Aubreys leaned heavily on their faith in the weeks after Kamryn was hospitalized. Kelli began a detailed blog, and a local prayer chain grew … and grew. Before long, people in Africa, China, Russia, Scotland and the United States were pulling for Kamryn. Kelli and others cite the hand of the Almighty in the baby’s overcoming long odds no bookie would back.

“This is a child that should not have survived this,” Arens said. “Even people who aren’t religious came forward and are praying for this baby. She surpassed any expectation anybody ever had.”

Miraculously, a compatible heart became available less than two weeks after Kamryn went on the waiting list. It was none too soon, as the baby was failing fast.

“This is difficult to think of someone losing a child to help ours,” Kelli wrote on the blog. “This is what we will do for another family if Kamryn doesn’t make it through all of this. It is hard for me to think about and difficult to write. But God is in control and we are committed to His path.”
On Feb. 17, the day of the surgery, Kelli and Mike walked their 9-week-old daughter down the long corridor to the operating room.

“I kissed her little head and told her to ‘be good.’ Mike kissed her, too. And then we walked back to her empty room and sat down. Although I didn’t like the empty room, I was at peace.”

The Aubreys were notified by phone messages throughout the long surgery of each hurdle cleared, including the announcement that the transplanted heart was beating.

“The piles of wadded tissues and empty Starbucks cups tell only part of the story of the day,” Kelli wrote.

Obama, whose visit included a stop at Boeing’s Everett plant, spent the day talking about economic recovery. The hospital’s transplant coordinator told the Aubreys she had to do “a lot of finagling to get the heart here,” but the surgery wasn’t stalled as a result.

“There’s some misconstrued ideas that the president may have delayed it,” Kelli said. “But I don’t know that he did. I actually don’t think he has that kind of clout.”

Kamryn arrived back home March 28, and she is back to the “sweet” personality her parents knew before she fell ill. She is physically delayed due to weeks of hospitalization but is catching up.

Kamryn continues to require ‘round the clock care, including a complicated regimen of medication. Kelli must stay at home, and the loss of her income, plus some uncovered medical costs and transportation to Children’s, is weighing on the family.

Breath of Aire, a Christian music group, will play a benefit concert for Kamryn at 7 p.m. Saturday at Chapel Hill Presbyterian Church, 7700 Skansie Ave., Gig Harbor, with donations accepted.

You can also make donations on the blog about Kamryn,
www.prayingforkamryn.blogspot.com. As with all charitable giving, donors should do enough research to satisfy themselves of the legitimacy of the cause.

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Brynn writes:

Today I wrote a story about the rise of pertussis, or whooping cough, cases reported in Kitsap County. According to data from the Kitsap Public Health District, there have been 21 cases reported from December 2011 to March 19.

Compare that to the 11 cases reported for most of 2011 (from January to November) and you can see why health district Director Dr. Scott Lindquist referred to the jump as an “obvious increase” in usual cases.

In his report Lindquist doesn’t address why we might be seeing this increase, but doing a little research online it seems the reason we’re seeing a resurgence of this disease is because people aren’t getting vaccinated against it. That includes parents who consciously choose not to immunize their infants because of the risks associated with the vaccination, or adults who were vaccinated during their younger years but never got the shot again — after a number of years the immunity of the shot wanes and needs to be re-administered.

If you’re not familiar with whooping cough, or its symptoms, here’s what the Centers for Disease Control and Prevention has to say:

Whooping cough is a serious and highly contagious respiratory disease that can cause long, violent coughing fits and the characteristic “whooping” sound when a person gasps for air. It takes a toll on anyone, but for infants it can be deadly. In 2010, 27,550 cases of whooping cough were reported nationally with 27 deaths — 25 of which were infants. Worldwide, there are 30‐50 million cases of whooping cough per year resulting in about 300,000 deaths.

Yesterday I spoke with one parent who with his wife chose not to get their newborn immunized against the disease. The conversation didn’t fit into the story I wrote about Kitsap seeing a rise in cases, but I wanted to provide his perspective on why they opted not to immunize their 11 month old daughter Edythe.

Bremerton residents Kevin and Adele Connally aren’t against vaccinations, but after doing some research they decided not to immunize themselves, or go through the immunization schedule for their daughter against whooping cough.

“I’m not actually pro- or anti-immunization,” Kevin Connally said. “I’m just anti some immunizations.”

Connally said he found research that showed the whooping cough vaccine can be damaging to one’s immune system and cited statistics from a California study that showed people who were immunized against the disease still caught it.

I asked our local health district about this, and they said it’s true people who are immunized can catch the disease, but often the symptoms are milder and typically its the people who were immunized but the potency of the vaccine has waned that are susceptible — that’s because it’s been a number of years since they were given the shot.

The debate over whether to immunize against the disease is not unique to America, nor is it new. I found this abstract on the National Institutes of Health’s website. It looks like it’s from a medical journal article published in the 1980s, but its topic is relevant today:

There has been extensive debate in Great Britain regarding the risks and benefits of routine infant immunization against whooping cough. As a result of highly publicized cases of brain damage alleged to have been caused by the vaccine, immunization acceptance rates have dropped dramatically and epidemics of the disease have recurred.

On the basis of a review of the current state of knowledge on whooping cough, the vaccine, and vaccine safety, the authors conclude that the dangers of the disease outweigh any known hazards of the vaccine. Although whooping cough is less important a cause of death and disability at present, it remains a potentially lethal disease that should be controlled.

The safety of the vaccine is an especially critical question, however, since it is being advocated for use on a mass scale in previously healthy children. The results of studies such as the National Childhood Encephalopathy Study suggest DPT vaccination is associated with a greater frequency of acute neurological illnesses than would be expected by chance. On the other hand, most cases of such complications were not time-associated with DPT vaccination and may have resulted from the less purified vaccines used in the past.

The most critical element in decision making is the readiness of parents and doctors to accept the fact that active preventive measures such as pertussis immunization sometimes carry unavoidable risks that have to be weighed against the risk of nonintervention.

The Connally’s measured the risks to benefits, and decided against giving their daughter the series of shots that start at 2 months. Instead they made a conscious effort to do everything they can to keep her, and themselves, from catching it.

That includes breast feeding Edythe, which research has shown boosts a child’s immunity by passing along antibodies from the mother, among other benefits. While she’s still breastfeeding, Connally says they also feed Edythe solid foods that are known to boost her immunity, including a diet rich in vegetables and fruit, and fiber to help build “good cultures in her gut,” Connally said.

While they made the choice not to immunize Edythe, Connally was up front with me in our interview and told me they think she could currently have whooping cough. They don’t know how she caught it — possibly from kids at church or in the neighborhood, Connally said — and they won’t know until they hear back from the doctor what the test results show. They took her in on Wednesday to be checked out.

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Justine Avery is tired of living with a ticking time bomb. Avery, who carries the BRCA1 genetic mutation, has an 85 percent chance of developing breast cancer. The disease killed her mother Sandy Avery, first wife of Kitsap County Assessor Jim Avery, in 1989, when Justine was 9. So Justine has decided to get a prophylactic (preventative) bi-lateral (both sides) mastectomy.

The date of the surgery, Thursday, has been set for some time. Justine has approached the impending procedure with courage and a sense of humor. A 1999 South Kitsap High School graduate who lives with her husband Rob Sands and works in Seattle, Justine was feted by friends at a recent “Ta Ta to the Ta Ta’s” party. Her BFFs who put it together “made a very naughty cake.”

“I’m very supportive of it. I think it’s a very wise thing to do,” Jim Avery said of Justine’s decision.

Justine, who also has a 40 percent chance of developing ovarian cancer, has kept friends and family up to speed with a blog. Part of her motivation in going public with such a private matter is that she has been part of two studies on genetic predisposition toward ovarian cancer, and she hopes to raise funds for the Marsha Rivkin Center and Fred Hutchinson Cancer Research Center. Because of the research, high-risk women like her can get free screenings twice a year, something not covered by insurance.

Justine’s raised nearly $4,000 toward a goal of $10,000. That’s not counting about $2,000 raised from the Ta-ta party, with part of the donations coming from the sale of ta-ta-tinis … two olives. The support of friends and acquaintances — some of whom she hasn’t talked to in years — means a lot.

“It’s kind of made me feel at peace with my decision,” she said. “It’s kind of made me realize that what I’m doing is the right thing. It’s the right decision.”

More importantly, Justine said, she wants to share information with and offer support to other women who may have the gene, or who like her have already been tested and face some tough choices. Justine is not telling others what to do. On the blog, she simply shares the back story of her bold decision.

Her mother was diagnosed at age 38 (Justine is now 31). “I don’t remember a time when my mother wasn’t ill,” Justine said. And yet that didn’t stop Sandy Avery from living a full life. “It was always in the background. She was a wonderful mom with a great spirit. The cancer didn’t stop her, up until the last hour. She was a great mom.”

The aggressive cancer spread to other organs, and Sandy Avery died after six years of rigorous treatment. Other family members who developed cancer were her aunt, who survived breast cancer diagnosed in her 40s but later died of ovarian cancer, and her cousin, diagnosed in her 30s, who is a cancer survivor.

After her cousin’s diagnosis, some members of the family were tested for the “breast cancer gene” and found a positive link. Justine’s older sister, who escaped the BRCA1 gene, urged her to get tested, but Justine resisted, at least at first.

“Maybe to some degree I have always felt it was only a matter of time before the other shoe dropped,” she wrote on the blog. “Maybe it was because I was sick of the anxiety of going to get my boobs squeezed between two pieces of glass once a year and I figured that if I didn’t have the gene, I would not have to revisit this for at least another 12 years; or maybe it was to shut everyone up already…. Regardless, I truly believe the decision I made 3 years ago at the age of 28 is going to save my life.”

Justine is quick to point out that cancer caused by the gene is relatively rare. “Only 7 percent of breast cancers are caused by a genetic mutation (BRCA1 and BRCA2). If someone in your family has been diagnosed with breast cancer, it most likely means they are part of the other 93 percent. It’s when you see patterns of early diagnosis that you should start to consider genetic testing.”

Justine’s gut reaction to the whole situation: “This sucks! … Up and down for sure. I’m dealing with the suckiness of it all. I have a wonderful family who has helped me sift through the decisions I’ve been confronted with.”

Justine outlines the choices facing women who test positive for the gene. The first is vigilance in the form of frequent mammograms, MRIs, blood tests and ultrasounds.

“I am so thankful for the constant screening. My mom didn’t have the opportunities I have. But to be honest I’m getting tired of it,” she wrote.

The second option involves a five-year course of a chemotherapy drug called Tamoxifen, which results in early (and temporary) menopause, cutting her cancer risk in half.

“The last option may seem ‘radical’ to some: a bilateral prophylactic mastectomy. In other words, amputation of my precious boobies, because they will most likely kill me. I have chosen the latter of the three.”

Back to the time bomb analogy, there’s a 15 percent chance that, like on the cartoons, a little white flag saying “boom!” will pop put of the bomb, all that worry for nothing. But there’s really only one way for Justine to control the outcome and avoid a diagnosis she calls “unacceptable.”

“I still am haunted by the fact that I’m cutting off two perfectly normal (and quite lovely I might add) breasts for something I ‘may’ get,” she wrote. “But here’s the thing, ‘may’ in this circumstance means an 85 percent chance … That also means I only have a 15 percent chance of not getting it. I will sit at a craps or blackjack table for hours but I would never play those odds.”

Justine wants to have children and so is delaying a decision on removing her ovaries at this time. She knew you’d want to know.

According to Justine’s oncologist, about 50 percent of women with her type of family history elect prophylactic mastectomies, and about 80 percent get hysterectomies once they are done having children.

Since genetic screening has only recently become more common among families with a strong background of breast/ovarian cancer, Justine hopes writing about her experiences will help other women navigate this new frontier in women’s medicine.

“I am actually the first one in my family who is ‘choosing’ to do this preventatively. It can feel lonely sometimes,” she wrote. “This is my way of not only documenting this time for those in my family that may come later, but also helping to create awareness of breast cancer.”

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This will be your Friday Afternoon Club heads up a little early. The Rotary Club of South Kitsap plans a “Bay Street Bash” at 6 p.m. Saturday at the Port Orchard Pavilion, 701 Bay St.

The Mardi Gras-style event features casino games, a light Cajun-style dinner and activities. There’s a no host bar.

Tickets are $40.

The Rotary Club hosts exchange programs and has scholarships for local students, as well as international feeding programs and disaster relief. The club is involved with a mission to help Kenyan villages get clean water and sanitation.

“Here in Port Orchard we take life’s basic necessities for granted, but for much of the world such things are an everyday struggle”, said club President Kyle Morkert. “We hope the good folks in South Kitsap and throughout the region will join with us to make a difference through this fun and exciting fundraiser.”

In conjunction with the Bay Street Bash, MoonDogs, Too will host a “Bling a Bra” event. This a is widely used type of fundraiser for breast cancer, according to MoonDogs owner Darryl Baldwin.

Individuals and businesses can decorate bras; the respective entry fees are $10 and $25. The glamorous bras will be on display at MoonDogs from Friday through March 3, when the winner in each category will be announced. Votes cost $1 apiece and all proceeds go to the American Cancer Society.

The individual winner will get a Victoria’s Secret basket. The business category winner will receive a plaque from MoonDogs at this year’s Relay for Life, set for June 1 through 2. This is MoonDogs’ third year to participate in South Kitsap Relay for Life.

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Is Kitsap County a healthy place to live?

You can sound off on this question through the end of today (Aug. 15) in an online survey posted by Harrison Medical Center, Kitsap United Way and Kitsap County Health District.

The survey seeks residents’ opinions on the importance of a host of factors related to health: substance abuse, seat belt use, crime, education, transportation … even arts and culture, to name a few. Surveyors want to know if you’re satisfied with your life here in Kitsapland, whether you think it’s a good place to raise kids or grow old. What are the barriers to health, you’ll be asked to comment. What do you like about living here? What don’t you like?

I estimate the survey would take about 5 to 15 minutes to complete.

And what will they do with all the information they gather? The three main sponsors, with nine other participating agencies will use survey data to identify the community’s consensus on health priorities. Agencies involved will then collaborate on ways to tackle problems and foster those things that make us feel healthier.

So, I’ll ask here, “How healthy are ya feeling Kitsap?”

What are the five top things that contribute to your sense of health and well-being?

What are your five top barriers to health?

What governments or agencies would you think are in the best position to make Kitsap a healthier place to live?

And finally, if you’ve lived elsewhere, how does Kitsap compare for healthy living? (see poll on homepage of this blog)

P.S. Speaking of healthy living, my car is in the shop, so I decided to ride my bike to the foot ferry. All was going well until I got a flat tire about halfway there. I walked the bike the rest of the way, ready to call the whole thing a complete fail. But Fred Karakas of Olympic Bike & Skate fixed the tire in jig time, so I was only a half-hour later than I thought I’d be. With construction on Highway 3 set to begin Aug. 22, I’d consider doing it again, but I’m obviously on a learning curve. Lesson # 1: Bring a flat repair kit.

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Tricia Moen, a South Kitsap High School graduate, was only 39 years old when she died May 6 of colorectal cancer. Moen, a producer at KOMO News was mourned by her colleagues, who celebrated her “quirky” humor and positive attitude, even during her difficult treatment and eventual progression of the disease.

Moen became an outspoken advocate for colon cancer screening, and as recently as March, appeared on KOMO’s HealthWatch to advise people not to delay having a colonoscopy. Guidelines from the American Cancer Society recommend regular colon screenings beginning at age 50. But even people under 50 should be concerned about colorectal cancer, Moen said.

“I’m a perfect example anyone can get it,” she said in the HealthWatch interview.

The ACS recommends you discuss your health and family history to determine what colorectal cancer screening schedule is best for you.

In Moen’s obituary, her family wrote, “To honor Tricia’s memory, there are two things she would like you to do: first and most important, get your colonoscopy; second as you have been blessed by knowing her, please “Pay it Forward” by making a donation to komonews.com/tricia.”

In an article published Friday, the New York Times reported that insurance companies are recording record profits, “enriched in recent months by a lingering recessionary mind-set among Americans who are postponing or forgoing medical care.”

Higher deductibles appear to be driving some patients’ decisions on when to seek care. One doctor interviewed for the article said he’s noticed a distinct change in patterns of his patients’ health care consumption.

“I am noticing my patients with insurance are more interested in costs,” said Dr. Jim King, a family practice physician in rural Tennessee. “Gas prices are going up, food prices are going up. They are deciding to put some of their health care off.”

King added patients are becoming more thoughtful about their medical needs. For example, fewer are “asking for an MRI as soon as they have a bad headache,” the article says.

Reining in medical costs by reducing unnecessary procedures will benefit consumers in the long run, so the theory goes. “People are realizing that this is my money, even if I’m not writing a check,” King said.

Looking at it strictly from a perspective of cost, however, too much delay could result in higher treatment costs later.

Looking at it from a patient’s point of view, I must admit I was reluctant to get a colonoscopy, but, at 55, was pretty much ordered by my doctor to do so. As many will testify, it was no big deal. Bowel preparation keeps you close to the bathroom the night before. On the day of the procedure, they give you some good drugs. You make a few tasteless jokes with the doctor if you’re so inclined. You go to sleep. You wake up, and it’s over.

If the doctor does find precancerous polyps in your colon, in many cases, they can be cauterized and treated on the spot. As mentioned, the schedule for re-screening depends on the results of the test and your health history.

My condolences to Tricia’s family, friends and colleagues. And thanks to Tricia for sharing this information.

I would be interested to know how many of you have postponed seeking medical or dental care due to cost within the last two years. Take the poll on the homepage of this blog. Comment below, if you care to, with your thoughts on health care consumption.

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The video that went with today’s story about Kitsap Applied Technologies was inadvertently omitted from the web page. The video is now attached. Hope you’ll check it out.

County funding for the nonprofit company, which provides employment for severely disabled adults, is in jeopardy, because KAT did not measure up on a multifaceted evaluation, conducted by the Kitsap County Developmental Disabilities Advisory Board.

Chris Henry reporter

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Here’s a picture of all 100 employees of South Kitsap Fire & Rescue decked out in pink T-shirts. October is Breast Cancer Awareness Month. The shirts were purchased by the firefighters union and each employee made a $10 donation back to the union to be donated to Breast Cancer Awareness. Pictured are members of Local 2876 uniformed Firefighters and Inspectors, Local 2876 non-uniformed members from Fleet, Facilities, Clerical and Information Technology, members of the Battalion Chiefs Local 3819, and non represented employees.
“Everyone came together for this worthy cause,” said Battalion Chief Mike Wernet.

SKFR Support Breast Cancer Awareness

There has been plenty of backlash against the ubiquitousness of the pink ribbon campaign. A report on the Huffington Post from 2009, for example, advises consumers to “think before you pink.” Some companies, the report says, “just slap some pink on their packaging and a “Breast Cancer Awareness” emblem, but don’t take it a step further by donating any proceeds.” The article includes a link to Breast Cancer Action, which tracks donations to the cause.

I’m not suggesting that SKFR’s efforts are anything but noble. But the press release kicked off a conversation in the newsroom that surely comes up every October. Why does breast cancer get all the attention? What about other types of cancer? What about other diseases?

What are your thoughts on pink ribbons? Why do you think the campaign has been so successful? What could promoters of other causes learn from those promoting Breast Cancer Awareness?

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I just submitted a story on concerns among Manchester Elementary School staff about the seemingly high number of cancer cases, past and present, among students at the school. The story will run tomorrow.

At least a dozen current or former Manchester students have had cancer of various types. The school even has a memorial garden for students who have died of cancer and other causes. About 30 adults in the area also are known have had cancer. The prevalence of the disease in various forms raised a red flag among school staff, enough so that teacher Ann Giantvalley decided to investigate.

Giantvalley, a Manchester resident, represents the school on Kitsap County’s Manchester Citizens Advisory Committee. She shared her concerns with the county’s board of commissioners and eventually with the state Department of Health. DOH epidemiologists, using confidential information in the Washington State Cancer Registry data bank, conducted an in depth analysis of known cases within school district boundaries, and on July 2 they reported back to Giantvalley with their findings.

According to the report, brain tumors among children in the age group from birth to 19 years occur at four times the rate expected among the general population. Two of the 4 cases were diagnosed within the past two years. State and local health officials have concluded, however, that — sad though the individual cases may be — the statistical anomaly is not cause for alarm or an investigation of possible environmental causes. Little is known about the cause of brain cancers. Researchers are looking at genetics, lifestyle and the environment. Radiation has been identified as a possible cause.

The Kitsap County Health District responds to 3 or 4 reports of possible “cancer clusters” each year, according to health district director Scott Lindquist. His office welcomes such reports, and Lindquist said he’s glad there’s a comprehensive process in place for addressing such concerns and identifying possible environmental factors triggering illness in population groups in Kitsap County. With state budget cuts, he said, those services are in danger of being cut.

I’ll explain more in my story about why the state’s report hasn’t triggered an all out investigation of the Manchester environment. Below is the report, which was sent to Giantvalley on July 2.

Cancer Report

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