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Taylor working hard at just being a kid
By MICHELE MILLER, Times Staff Writer It was just before Valentine's Day when we last saw Taylor Johnson. Then she was busy making pink and red construction paper hearts to hand out to classmates at Kids' Stuff Preschool in Land O'Lakes. The next day the school hosted a bike-a-thon for the family to raise money -- some $8,000 -- for mounting medical expenses incurred to treat Taylor's neuroblastoma, an aggressive form of childhood cancer that Taylor had been diagnosed with 16 months earlier. After surgery for an abdominal tumor, six rounds of chemotherapy, radiation treatments and two stem cell transplants, Taylor was headed to New York, where she was going every three months to undergo antibody treatments at Memorial Sloan-Kettering Cancer Center. By mid December, 6-year-old Taylor was at it again -- still fighting cancer -- and still making hearts. This time she was drawing heart bouquets -- one to give to her mom, who was home looking after her younger brother, Landon, and another for her dad, who was coloring beside her while the latest batch of chemicals dripped into her veins in the playroom at All Children's Hospital in St. Petersburg. "Make a star," she told her dad as she handed him a yellow crayon. "One with no lines in it." "She's always drawing hearts and flowers," said her dad, Jeff Johnson. "And people. When she draws people, they're always smiling. That's really amazing. For a kid who's been through so much, you'd think she'd be drawing all mad faces, but everybody's always happy in her pictures." Drawing is one of Taylor's favorite things, along with the television show Rugrats, the movie Shrek, Barbies, Beanie Babies, stinky (Swiss) cheese, her cats, Lovey and Sweetheart, and the pink blanket that she always brings with her because "it smells like home." Oh, and she likes to fish, too, especially out on the gulf with the whole family. "I caught a flounder big enough to keep last time," she said proudly. Then there's school. The best days are when she can go to school, said Taylor, who now attends kindergarten at Lake Myrtle Elementary School. But with a schedule that has to revolve around blood tests, clinic visits and chemotherapy treatments that wipe out her immune system, getting more than a few days in a row is a rarity -- and sometimes a little risky. "I get a lot of homework," said Taylor, adding that she really doesn't mind. While the Johnsons still struggle with the ever-increasing medical expenses not covered by insurance, saving their daughter's life while allowing her to be a kid is the latest, and most important balancing act they face. There will be more rounds of chemotherapy for Taylor. "But that will only keep her in remission for a certain amount of time," said Taylor's mother, Angie Johnson. There is some hope in an immunotherapy trial at Texas Children's Hospital in Houston. A sample of Taylor's bone marrow was sent there to see if a vaccine could be grown to help her body fight the cancer. "There's a 50 percent chance that will work," Mrs. Taylor said. "It's still a new treatment, but it's something we can at least try because the doctors told us that the chemo alone is not going to do it. It's not going to keep (cancer) away." Although the future holds uncertainty, "her spirits are still good," Mrs. Johnson said. "This is just a way of life for her," her father said. "She's quite a kid; she's always happy. She just goes with it and that helps us." Taylor stays entertained with arts and crafts her parents provide while she is in the hospital. "We know just about all the nurses there," Mrs. Johnson says. "We know almost all the families there. It's kind of our home away from home. But I know she wishes she could go to school every day and just be a normal kid." That's why the Johnsons brought their daughter to school on the last day before winter break even though her blood counts were at their lowest point. The risk for infection was great, but the children were going to make gingerbread houses, a very special activity. "We didn't want her to miss that so we decided we were just going to put a mask on her and bring her in," her father said. "If someone was coughing or sneezing, we'd be right out of here," said Mrs. Johnson, who came along to help. But it wasn't a problem. Taylor was happy to dole out the gumdrops and chocolate candies as decorations for the gingerbread houses. She was even more delighted to be greeted by her classmates, who donned their own masks. "See, no one's different here," said Taylor's teacher, Elizabeth Blum, as Madi Grybek walked over to hug Taylor. The kids didn't mind wearing the masks, said Mrs. Blum. "They were so excited when I told them she (Taylor) was coming in," said Mrs. Blum. " "Whatever it takes,' they said, to have Taylor here."
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