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Wish comes true for Herndon 'honor patient'
By Connie Jo Discoe
Regional Editor
HERNDON -- Looking back, during those dreadful first days a year and a half ago, Melinda and Dan Grafel of rural Herndon could see that, indeed, something was seriously wrong with Isabel. Her pretty blue eyes had great dark circles under them, and she wasn't sleeping well. She looked pale, her grandma said.
Looking ahead, from those same spring days early in 2003, Dan and Melinda had no idea they would become so well versed in medical terms like blood draws, spinal taps, chemotherapy ... cancer ... acute lymphocytic leukemia.
"Medicine was very foreign to both of us. Putting a band-aid on a scratch was as close as I'd gotten to medicine," Melinda said, looking at Dan. "Now it's part of our daily routine."
Isabel was 2 1/2 when she was diagnosed with ALL --the more common type of leukemia. "It's easier to treat, and it has a higher survival rate," Dan said.
Isabel had just moved out of her crib, and she wasn't sleeping well, Melinda said. "She was tired," she said, "but we thought it was because of the transition to a big bed."
"We can see it all now, looking back," Dan said.
Melinda, Isabel and Isabel's big brother, Kade, had traveled to Beloit, Kan., over Easter weekend 2003, for Melinda's grandmother's funeral. Dan was to meet up with them later.
"Easter Sunday night, Isabel was running a fever and acting like her ear hurt," Melinda said.
The next morning, at a pediatric clinic, Isabel was diagnosed with an ear infection and put on antibiotics, but it was her low hemoglobin count (4.4 out of 11) that sent her immediately to Wesley Medical Center in Wichita. Dan met his family at the hospital.
April 21 through April 23, 2003, were filled with CAT scans, Xrays, MRI's, and a bone marrow test that confirmed acute lymphocytic leukemia. Dan and Melinda met with Dr. David Rosen, a pediatric oncologist in Wichita.
"They sent us home for several days, to collect our thoughts," Dan said, and to decide whether they wanted Isabel's treatments in Wichita or Denver. Although they live closer to Denver, it was family ties -- Melinda's mother in Beloit and her brother, Chris, and his wife, Lynne, in Benton -- that made the couple decide on Wichita.
"It was a smart decision," Dan said. "We've had several overnight trips."
One of Isabel's first hospital stays was to implant a chest catheter, through which nurses would draw blood and Isabel would receive her chemotherapy.
"There are no needle pokes, no pain," Melinda said.
The treatment regiment the first four weeks was designed to put the cancer into remission, Dan said. "It worked, and it's in remission even now," he said.
Nearly a year and a half later, Isabel takes a maintenance dose of chemotherapy at home every day, has blood draws in McCook once a week and office visits with Dr. Rosen in Wichita once a month.
Isabel is in Week 73 of a 130-week treatment course. The frequency of treatments changes and dosages decrease in phases throughout the course, Dan said.
"Isabel has responded as she was expected," Dan said.
Isabel will be just past her fifth birthday when she's done with all her treatments.
Possibly the worst time was that first month, Melinda said, when Isabel was put on the steroids that attack leukemia cells. "Steroids are a whole other problem," Melinda said. "Belle was moody and she couldn't sleep. And she was hungry all the time."
Isabel would even wake up through the night wanting to eat, Melinda said. She'd go for a ride around the farm with her dad, and they'd have to take four chicken nuggets with them, Dan said.
"Once we were through May, everything was a little easier," Melinda said.
Every 12 weeks, Isabel is put on steroids again, Melinda said, but it's only for a week at a time, and she doesn't suffer such side effects.
Every 12 weeks too, Isabel undergoes a spinal tap, Dan said, to make sure that cancer cells haven't invaded the spinal fluid.
Isabel's long hair fell out with the early doses of chemotherapy, but it has since grown back. "It went from straight to curly," Melinda said, twirling her daughter's light brown curls around her fingers.
Isabel, sitting on her mother's lab at the dining room table on the family farm east of Herndon, curls up with her thumb and her silk-edged blue-green security blanket. She's still a little drowsy from an early-afternoon nap that snuck up on her after her first week of preschool.
Isabel likes preschool, she says, going to school in Herndon, with her cousin, Kel Grafel.
Isabel's excitement grows; her blue eyes start to sparkle as she gradually wakes up, and she jabbers in her little-girl lisp about her Make-A-Wish trip to Florida: She met Pooh and Minnie Mouse, and Kade got a Shamu the Whale, and Stitch tried to eat her book, and she can name all the Disney princesses on her T-shirt, and she and Kade collected sea shells in Florida.
Dan said, smiling, "She's a normal, happy little girl now."
Isabel and her six-year-old brother Kade collected sea shells on the Florida sea shore when the Make-A-Wish Foundation of Kansas granted Isabel's wish to "meet the real Mickey Mouse."
The Grafels visited Disney World, Sea World, the Kennedy Space Center and the beach, and stayed at "Give the Kids the World" Village, from Aug. 5 through the 10th. "We really enjoyed it," Dan said, "but it sure was hot and humid, for those of us from the 'desert'."
The village was a little amusement park in itself, Melinda said, with duplexes, pools, miniature golf, a game room, a theater, a train, a chapel -- and ice cream all day long. Mickey and Minnie and other Disney characters visit Make-A-Wish kids at the village, Melinda said, and they celebrate the birthday of the "Village Mayor" and Christmas once a week.
"The village was full all the time," Melinda said. "There were lots of kids like Belle -- You couldn't always tell who the Wish child was."
All Village/Make-A-Wish kids wear special identification "fast pass" buttons that entitle them and their families to special parking privileges at Disney World and allow them to go to the heads of the lines waiting to get on Disney World rides.
"Disney World is very aware of the button," Melinda said.
Dan said Kade really enjoyed Kennedy Space Center -- "That's more his thing." Kade also liked Shamu the Whale, and brought home a stuffed Shamu.
Belle says her favorite parts were "seeing Pooh," and "being on the big airplane." And, she giggles, "Stitch tried to eat my book."
One of Dan's favorite parts was flying out of Florida a few days ahead of Hurricane Charley.
Everything on the trip was paid for and arranged for the Grafels by the Make-A-Wish Foundation of Kansas, whose representatives in Wichita are Pat Renze and Pat Greenway.
The Grafels -- and Make-A-Wish -- stress that Make-A-Wish grants wishes for children suffering from "life-threatening" diseases. The child's prognosis need not be terminal, Melinda said.
The Make-A-Wish Web site states: "The Make-A-Wish Foundation of Kansas is dedicated to fulfilling the single favorite wish of Kansas children, ages 2 1/2 to 18, who suffer from life-threatening illnesses." It is the Make-A-Wish Foundation's conviction that a child's wish should be limited only by his or her imagination.
For information on the Kansas branch of Make-A-Wish, call (800) 566-9474 or (316) 838-9474.
The e-mail address is: kansas@wish.org
The web site is: http://www.wishks.org
Isabel has become an "honor patient," or "mascot" for the national Leukemia and Lymphoma Society, which is dedicated to finding a cure for leukemia, lymphoma, Hodgkin's disease and myeloma.
The "Team in Training," within the Leukemia and Lymphoma Society, raises funds for the society. TNT was formed in 1988, when Bruce Cleland of Rye, NY, and a team of 38 fellow runners trained for and ran the New York Marathon in honor of Cleland's daughter, Georgia, a leukemia survivor.
Because of the efforts of Cleland and the Westchester/Hudson Valley TNT Chapter, TNT has grown into the world's largest endurance sports training program.
Sandy Bowersox of Wichita, the coordinator of the Kansas LLS office, said it was the mother of a lymphoma victim who gave to Isabel the bigger-than-life stuffed Mickey Mouse that inspired Isabel's wish to see "the big Mickey," "the real Mickey Mouse."
Sandy said Judy Bickel of Wichita gave the stuffed Mickey to Belle. Judy lost her daughter, Becky, a student at Emporia, Kan., State University, on Christmas Eve 2002. Becky was 22 years old.
Sandy said, as an "honor patient," Isabel is mentioned by TNT fund-raisers in their letter-writing campaigns. "They raise money in her honor," Sandy said.
While funds raised by the groups certainly pay for research that is changing lives, Sandy said, the Leukemia and Lymphoma Society is one of the last charities to offer funds directly to patients for medical expenses.
For more information on the Leukemia and Lymphoma Society and Team in Training, check out the LLS and TNT web sites at: http://www.leukemia-lymphoma.org or http://www.teamintraining.org