January 19, 2006 issue
Waging War on Leukemia
11-Year-Old Sarah Russell Raises Funds for Research and Education
Story by Sally Treadwell
It’s every parent’s worst nightmare—to take your child into the hospital with what you have been told is a stomach virus, to discover that she has leukemia and to watch that child die, less than 24 hours after being diagnosed.
But if Sarah Russell, 11, has her way, Caylee Cepero will be one of the last children to unexpectedly lose her life to acute myeloid leukemia (AML). Caylee, an enchanting little girl with merry eyes and a tangle of dark curls, died at the age of four. She’d had a cold and had been taking antibiotics, but when she started vomiting, a pediatrician missed the signs of AML. A relatively inexpensive blood test might have led to a faster diagnosis—too late for Caylee, but for many children, it could mean the difference between life and death.
Russell hopes to raise $5,000 for research in Caylee’s name during the
next six weeks, and, perhaps more importantly, to help parents become aware of the symptoms of AML and the complete blood count (CBC) test they need to request. She wants to help fund research into the environmental factors that may cause this disease, as well as to spur earlier diagnoses and better care.
Sarah learned about Caylee from her mom, Dawn Wilson, who happens to know one of country singer Kenny Chesney’s band members. A friend e-mailed Wilson to ask if the band member could persuade Chesney to appear at a leukemia research benefit concert to be held in Tampa this March. “Go to the Website (Cayleeshope.com) and take a tissue,” her friend told her. Sarah happened to see the heartbreaking site, and after reading about Caylee, decided on the spot that she was going to help, telling her mother that all she wanted for her birthday on January 16 was a trip to the benefit concert. There she plans to present Caylee’s family with a check for leukemia research and a scrapbook full of the good wishes she is collecting. “There are just way too many sick and dying kids,” she said.
First up on the fundraising circuit was Sarah’s birthday party at CiCi’s pizza on Monday night. “Don’t bring me a gift—just give a donation,” she told her friends. That raised $200 from her fifth grade class at Two Rivers Community School, and an anonymous business donor added another $250.
Sarah has enlisted her friends Kelsey Conrad and Megan McDeavitt (“Caylee’s story made us really sad,” they said) and the trio, wearing trademark fuzzy hats to honor Caylee’s love of hats, plans to place collection jugs around Boone. There will be a couple of barbeque dinners—plans have not yet been finalized—and, as a grand finale, a parent-child dance at Builders’ Plaza on March 4. And they’re going to tell people about leukemia.
“This is like a game of tag, I just told you about Kaylee’s Hope – SOOOO, TAG YOUR IT, go share this with someone you care about,” wrote Sarah.
So now—tag, you’re it.
To donate or to obtain more information, e-mail Sarah at kidscareteam@yahoo.com or call 828-297-3995. Checks made out to Caylee’s Hope, the Kids Care Team, can be mailed to P.O. Box 212, Vilas, NC 28692 or dropped off at any High Country Bank location in Boone.
Leukemia Symptoms & Causes
According to the American Cancer society, leukemia is a cancer of the early blood-forming cells that starts in the bone marrow and then spreads to the blood. “From there it can go to the lymph nodes, spleen, liver, central nervous system (the brain and spinal cord), testes (testicles), or other organs.”
Symptoms
Although the symptoms may have other causes, watch for
• Fatigue, paleness of the skin
• Infection
• Easy bleeding or bruising, including pinhead-sized red dots
• Bone or joint pain
• Swelling of the abdomen
• Swollen lymph nodes
• Enlargement of the thymus that can lead to coughing, shortness of breath or even suffocation
• Headache, seizures, vomiting: Leukemia can spread outside the bone marrow. Headache, poor school performance, weakness, seizures, vomiting, difficulty in maintaining balance and blurred vision can be symptoms of central nervous system leukemia.
• Rashes, gum problems: In children with AML, leukemia cells may spread to the gums, causing swelling, pain and bleeding.
• Extreme fatigue, weakness: Unusual but very serious consequences of AML are the extreme tiredness, weakness and slurring of speech that occur when very high numbers of leukemia cells make the blood too "thick" and interfere with circulation through small blood vessels of the brain.
Causes
AML is not an inherited disease; the DNA mutations related to AML occur during life. Although no definitive cause has been established, childhood leukemia is strongly linked with the chemical benzene, ionizing radiation and various pesticides. A heightened risk is associated with the use of multiple products, including home pesticides and herbicides. Caylee’s family’s water was found to be contaminated with a chemical and the family had to move to a rental house.
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