KEARNEY — Siena Bonk keeps a handy stash of peanut butter crackers, Skittles and apple juice tucked in her school backpack.
She also keeps a glucagon pen handy to ward off a diabetic coma.
Siena, 11, has Type I diabetes, formerly called juvenile diabetes. Her pancreas produces no insulin, so she cannot process blood sugar. Insulin is necessary for survival.
A sixth grader at Horizon Middle School, Siena is permitted to carry her phone to class to monitor her blood sugars. Her blood sugar range should be between 80 and 120. When blood sugars soar, she gets a migraine headache. When they plummet, she gets shaky and dizzy and feels like she might pass out, so she heads to the office, opens her backpack and eats something to get those blood sugars within safe ranges.
She wears a tiny device on her abdomen that reads her blood sugar every five minutes. She transmits those readings to her parents, Mark and Christine Bonk; two of her grandparents and a fifth person of her choice. Those recipients can be changed if necessary.
She also sets alarms to go off if her blood sugar changes significantly. Siena then texts her mother to let her know she got to the office safely. “She’s responsible. She can take care of herself if she’s feeling yucky,” Christine said.
A three-year fight
Siena was 8 years old when she was diagnosed with Type I diabetes, but at first the symptoms took a back seat to her father’s health concerns. Five years ago, Mark, the former dining director at Northeast Community College in Norfolk, was home with a virus when Christine came home and found him unresponsive. Frantically, she called 911. EMS experts revived him, but Mark spent weeks in intensive care. He had to learn to walk, talk and eat all over again.
While he was recovering, Siena became cranky. She began walking in her sleep. She drank enormous quantities of water. Her mouth had a fruity smell. Christine assumed she was reacting to her father’s health trauma, but, just to be sure, she took Siena for a check-up. Her pediatrician said she was fine.
The next year, the Bonk family moved back to Kearney, where they lived before moving to Norfolk. Siena was having temper tantrums, which are rare for an eight-year-old, so Christine took her in for a checkup.
“The doctor took a urine sample and did bloodwork. We went to Jimmy John’s to have lunch,” Christine said. “As we were eating, her doctor called and said, ‘Get Siena to the hospital right away. She has Type I diabetes. She will be OK, but we need to get her to the hospital.’”
Christine, who had been sick with a virus that year, too, was in disbelief. “I thought, ‘What now? What could be going on?’” she said.
CHI Health Good Samaritan admitted Siena and hooked her up to saline and insulin. Her blood sugar readings were sky-high. Her A1C average was 14.9, far higher than the normal 5 or 6.
During her four days in the hospital, she had to go 24 hours without eating. “I cried,” Siena said.
Just one week before the new school year at Kenwood Elementary, Mark and Christine headed home with Siena to begin a new chapter in their lives.
‘Like having a newborn baby’
Siena learned to give herself insulin shots by practicing on a new stuffed teddy bear. At first, she was squeamish about the needle, “but I got used to it,” she said.
Mark and Christine poked Siena’s finger 10 times a day to draw a drop of blood to check her blood sugars, including at every meal, before bedtime, and at midnight and 4 a.m. “Overnight is when a lot of kids’ blood sugar drops low, but even to this day, hers goes really high at night, and an alarm goes off,” Christine said. “It was like having a newborn baby.”
Within seven months, Siena got a device that simplified keeping track of these critical numbers. And, in time, she scored a perfect five on a diabetic nutrition test.
The internet has simplified life for Type I diabetics. The Bonks check the carb content and glucose in various foods on their phones. They can scrutinize a picture of a plate of food to determine how much insulin Siena needs in order to eat it. “Otherwise, we do our best to guess,” Christine said.
Siena must avoid some foods, like cupcakes at birthday parties. She can eat a little pasta, pizza and bread, but they contain a lot of grease, and “we know her blood sugar will be high after she eats them,” Christine said.
Siena added, “I can eat anything I want as long as I give myself insulin so my blood sugars don’t get too high.”
When she first was diagnosed, Siena saw an endocrinologist at Children’s Hospital three or four times a year. She now goes every six months.
Soaring health costs
All this comes at great cost. Even with insurance, the Bonks spend several hundred dollars a month for pump supplies, but insurance doesn’t cover everything, like the little alarm Siena has in case her blood sugars plummet. “That device gives parents peace of mind,” Christine said.
One prescription covers just three vials of insulin, or $400 worth. Without insurance, it would cost $1,300 a month.
The Bonk family, which includes Fisher, a freshman at Kearney High School, always carries needles and insulin. They keep sugar snacks in the car. “We have checklists. We have so much to keep track of,” Christine added.
Still having fun
Despite her diabetes, Siena is a typical sixth grader. She plays softball. She plays tennis year-round in an indoor league. She has taken ballet and tap lessons. This summer, Siena attended a camp in Gretna for children with diabetes.
During sports activities, Siena must be carefully monitored, but Christine said teachers and coaches have been great about that. “We have way more control over this than we did three years ago, but we still learn new things all the time,” Christine said.
Siena, who dreams of becoming a hairstylist, also has been adopted by the “college diabetic network” at the University of Nebraska at Kearney. The Bonks help the students organize their annual April walk to benefit the American Diabetes Association.
Since her diagnosis, Siena has been admitted to the hospital only once, for one night, when her blood sugar stubbornly refused to come down.
“Everything affects her blood sugars. Taking a test. Getting nervous before a softball game or getting mad at her brother. Getting sick could affect her blood sugars,” Christine said. “Anything we take for granted can affect her. She could die if we don’t take care of that.”
The Bonks know that researchers have improved diabetic treatment and are closer to a cure. “Siena stays active and eats pretty well. We’ve been pretty blessed so far,” Christine said.