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Arundel Business Break

Local artisan stricken with a rare form of leukemia
Wendi Winters - For The Capital
Four-year-old Emma Ziegler steal a kiss from her mother, jewelry artist Sienna Bluewater Samaras Zertuche.

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Published March 26, 2008
Sienna Bluewater Samaras Zertuche is proud of her Greek and Native-American heritage. A few years back, when she had her DNA tested, she was not surprised to find a tiny fraction of her ancestry was Mongolian.
"Where do you think all the Indians came from?" she asked.

The ancestry that's been a source of pride and strength to her is proving to be a stumbling block for the 31-year-old Ms. Zertuche, a member of Annapolis High School Class of 1994. Raised in Annapolis, where she frolicked with her numerous Samaras cousins, she currently lives in Towson.

Early in 2007, just after her 30th birthday and the death of her father, Ms. Zertuche learned she had leukemia.

It is cancer of the bone marrow, where a body's blood cells are produced.

She underwent a harsh, 21-day regimen of chemotherapy for acute myeloblastic leukemia (AML) at Johns Hopkins Hospital, followed by daily 2- to 8-hour outpatient treatments for a month. Doctors subsequently gave her a clean bill of health.

But in a double-whammy, by December the leukemia had returned, and had mutated into an even more rare, more aggressive bilateral leukemia - acute lymphocitic leukemia (ALL).

"Don't take Christmas away from me!" the mother of two begged her doctors as they prepared more procedures. "You've got to think about next Christmas," was the reply.

One hope held out for her is a transplant of cells from an umbilical cord banked at the University of Minnesota Medical Center at Fairview. "Minnesota has banked cords since 1998," she said. "It has more Indians in the area, and there's a match for me there."

In the four-month-long procedure, doctors will wipe out her own white cells and bone marrow cells then completely radiate her body. Afterward, they will inject a double transplant of umbilical cord cells into her. "The cord cells will battle each other, then battle my cells," she said. "I hear the whole process is horrible. When it's all over, I'll be sterile, I won't be able to have any more kids. And I'll have the DNA of the infant who donated the cord."

Finding a bone marrow donor has been a challenge. "Native American minorities represent 1 percent of bone marrow banked nationwide," she said. "There's no numbers on umbilical cords banked, since a mother's ability to donate her newborn's umbilical cord varies from state to state."

Adults with leukemia fare best using stem cells transplanted from a perfectly or closely matched bone marrow donor. Only 20 percent a year find a match. The small amount of blood in a baby's umbilical cord provides stem cells that can be transplanted, helping many other people with leukemia.

If everything had gone according to plan, she'd be in Minnesota now. But, earlier this month, after undergoing another bone marrow biopsy test, she discovered, though her ALL counts were low, the AML was growing fast.

She had planned a big wedding in May to her longtime fiance Scott Ziegler, father of their two children, Chloe Ziegler, 6, and Emma Ziegler, 4. But the recent health problems have pushed the nuptials back, again.

"So I will be going back to Hotel Hopkins for several weeks for a brand new form of chemo called Flavopiridol mixed with a little ARA-C or Red Death, and Mitoxantrone for good measure. Minnesota will just have to wait a bit longer," she said.

Her hair is gone, revealing the tattoo of a tree inked on her neck and back in younger, healthier days. "My kids say I'm beautiful," she smiled. "My hair will grow back. It's grown before."

She has a Hickman port with two lines trailing from her chest, which she flushes every night with Heparin. Since her autoimmune system is weakened by chemo, she is supposed to wear a facemask in public - even when her kids kiss her.

Her aunt, Joanne Samaras Brew, sister of her mother Karen Samaras, has rallied friends like artist Myra Copus and all the relatives she could find to raise funds for her niece. They've set up a Web site to provide updates and raise funds. The site is www.savesienna.org. The address is: Sienna Zertuche Medical Fund, 13 Silverwood Circle, No. 5, Annapolis, MD 21403.

Tearing up, Ms. Zertuchesaid: "Friends send checks. People I haven't seen since elementary school."

On May 30 through June 1, the relatives are manning a fundraising booth for Ms. Zertuche during the annual Greek Festival. The weekend festival attracts over 15,000 people to Sts. Constantine & Helen Greek Orthodox Church on Riva Road in Annapolis.

Self-employed as a jewelry artist and owner of Blue Water Designs, Ms. Zertuche creates beautiful jewelry and clothing from precious metals, stones and fine fabrics. She's learned she can continue her work sitting in a hospital bed. She has insurance, but it's a constant battle arguing what procedures the company is willing to pay and which ones they won't.

When she does travel to Minnesota for the transplant, the cost just for the two-hour operation is a minimum of $350,000. Total expenses could zoom to a million dollars and beyond. "We're not going to let money dictate Sienna's future," declared her Aunt Joanne. "You're worth more than a million dollars."

"I'd given blood for years. I'd much rather give than receive. I love to help people," Ms. Zertuche said. "Being the one who needs help is very humbling."

Ms. Zertuche wants more than fundraising support.

She'd like to see more Americans register with the Bone Marrow Registry or donate their newborn's umbilical cords. In Baltimore, there are three places people can call to set up their registration: at the Kimmel Cancer Center at Johns Hopkins (410-955-8893), at the Sinai Hospital's Lapidus Cancer Institute (410-601-4710), and at the Greenbaum Cancer Center at University of Maryland (410-328-1230). Additional information is online at www.bonemarrow.org or www.bmtinfonet.org .

"The love and support you get from unexpected places is overwhelming," she said as daughter Emma snatched an unmasked kiss. "When cancer is with you, it's a lot easier to take the good every day."

Wendi Winters is a freelance writer living on the Broadneck Peninsula.

- No Jumps-

 

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