Special girl leaves legacy of love
Four-year-old Katelynne Smith battled an inoperable tumor with courage and a smile. This is the story of the bond she shared with her mother in the struggle.
By BETH N. GRAY
Published June 23, 2005
[Times photo: Maurice Rivenbark]
Star Ostermeyer displays a photo collage of her daughter Katelynne Smith (photo right) who died June 14. Ostermeyer was photographed in Katelynne's room. The 4-year-old was diagnosed with brain stem glioma, an inoperable tumor at the junction box of the brain stem. Her mom said we "were like peanut butter and jelly, I never did anything without her."
MASARYKTOWN - Star Ostermeyer learned her way around a lot of Tampa Bay area hospitals as she tried in vain to find a diagnosis and later a cure for her ill daughter.
For 18 months, the 28-year-old single mother carried Katelynne Smith from doctor to doctor, diagnosis to diagnosis, treatment to treatment.
A week after the death of 4-year-old Katelynne, Ostermeyer, who lives off U.S 41 in Pasco County, chose to tell her story to help other parents of terminally ill children. She hopes that they can learn from her persistence as she tried in vain to save her daughter's life.
The mother first took then 3-year-old Katelynne in October 2003 to Spring Hill Regional Hospital. Formerly energetic, the youngster had turned lethargic and sleepy. She couldn't keep her balance.
"She was walking into stuff. She'd get really excited and get head-heavy and fall over," Ostermeyer said.
Katelynne (pronounced Kate-lin) was diagnosed with an upper respiratory infection, given a dose of antibiotics, and sent home.
Within six days, daughter and mother were back at the hospital.
The medical staff "said I was an overactive parent," Ostermeyer recalled. They told her, "Go home."
But Ostermeyer persisted.
"Parents know when things aren't right," she said. So, she took Katelynne to All Children's Hospital in St. Petersburg.
"The nurse told us, basically, "she's fine. She's probably getting over a cold, the imbalance from fluid in her ears.' "
Ostermeyer solicited letters from the staff at her daughter's day care center, attesting to the tyke's changed physical condition. She wanted to prove that she wasn't being overprotective. Armed with the letters, Ostermeyer carried her daughter to University Community Hospital in Tampa, where a doctor ordered a CAT scan.
"When the doctor comes in carrying a box of tissues and she's already crying, it kind of hits you," said Ostermeyer, who took an indefinite leave from her job with a mortgage company to care for her daughter.
The diagnosis back at All Children's Hospital: stem glioma, an inoperable tumor at the junction box of the brain stem. The tumor was cutting off fluid from her brain.
"The neurosurgeon said she was born that way," Ostermeyer said.
According to the St. Jude's Children's Hospital Web site, brain stem tumors account for about 10 percent of pediatric brain tumors. Surgery is generally not possible. Even with radiation, problems usually recur in six to nine months, as happened with Katelynne. Survival beyond 12 to 14 months is uncommon. Katelynne became one of those uncommon cases, but only by a little.
Surgeons first implanted a shunt to drain the fluid into her stomach where it could be dealt with naturally.
Then came three months of chemotherapy, five days at a time.
"We pursued alternative medicines, herbs, etc.," said Ostermeyer. Without results, the youngster underwent 33 radiation treatments, accompanied by steroids, at St. Joseph's Hospital in Tampa.
Katelynne's weight ballooned under the steroids treatment.
"She got really heavy, but the whole time it didn't change her," Ostermeyer said. "She was still smiling and happy and loved everybody. She said she was going to be strong like the (Incredible) Hulk."
In the middle of fighting for her life, there were happy moments. The Children's Dream Fund sponsored a trip to Walt Disney World in Orlando. Katelynne's dream was to see the castle.
Soon afterward, physicians recommended another round of chemotherapy.
"(It) causes a lot of other side effects," said Ostermeyer, refering to vomiting, yeast infections and thrush, a fungal infection in the mouth.
"Katelynne kind of came to the conclusion that she didn't want to take chemo anymore," her mother said.
"It came to me quality of life was more important than quantity of life. That's a big decision a parent has to make," she said.
"I fought over that. (But) reading every piece of paper, it was like the doctors told me, it was terminal. She was never guaranteed one more day of life on this earth with chemo.
"I decided to make her life as normal as possible. Believe me," she added. "It was hard not to be angry.
"I was afraid to hug her too tight, to love her too much. I got a kiss and a hug and an "I love you' every night."
A big dose of love served both of them.
"She got to be a fully functional 4-year-old," her mother said. "She fought for every day she had, with happiness. She spent minimal time in the hospital. Her place was always right beside me."
Ostermeyer said her daughter had a unique relationship with everyone she knew. Katelynne's father, Damien Smith of Land O'Lakes, had limited involvement in his daughter's care, Ostermeyer said.
"Believe me, that little girl loved her daddy," she said. "He was not her father; he was her daddy."
It was easy to love Katelynne, friends said.
"She interacted with people great," said Melissa Ellerbee of Land O'Lakes, Ostermeyer's best friend for 12 years. "It didn't take a couple of minutes to be around her and they fell in love with her. Anything she did or said (was) with a smile."
When the child's condition deteriorated, Ostermeyer spoke to her about death.
"I told her if she couldn't be strong like the Hulk anymore, she could go be with God," Ostermeyer said. "That was our personal belief and she understood. It was fortunate that she could go with God and not go off with suffering."
While at home lying in her mother's bed on June 13, Katelynne slipped into a coma. She was surrounded by dozens of people: relatives, friends, hospice caregivers.
"So, when she went she was at peace. She was sleeping," said her mother.
Katelynne died June 14.
"She would not like us to be sad," she said of the girl nicknamed Katie Bug.
"She sang happy birthday to me for my birthday (June 9). It broke my heart, but my only regret is that she couldn't make it to July 7 so I could sing happy birthday to her."
Beth Gray may be reached at firstname.lastname@example.org
[Last modified June 23, 2005, 00:45:20]
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