 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
|
Aaron and Levi
The Sweet family's medical odyssey really begins with Aaron, their oldest child. After a brief illness, Aaron was diagnosed with diabetes at age 2, while the family was living in Texas.
In 1995, the Sweets moved to Powell. They sought a team approach for Aaron's ongoing care, and they found it in the practice of David Nickels, M.D., pediatric endocrinologist on staff at Children's Hospital. In the team approach to diabetes care, patients see not only the pediatric endocrinologist but also a social worker, dietitian and diabetes nurse educator. Each of the team members plays a key role in ensuring the patient and his family understand and follow through with the treatment and nutritional needs of the child. Aaron sees the team through the Diabetes Clinic, one of Children's Hospital's outpatient clinics for chronically ill children who require regular care in an outpatient setting. A couple of years ago, Aaron began using an insulin pump, a newer method of delivering the insulin he needs daily to stay well. The pump eliminates the need for insulin injections. He was "skittish" about trying it, but now he likes the freedom the pump offers and is happy he made the switch. Although Aaron's care primarily comes through the clinic, he did have one inpatient admission a few years ago, when he experienced diabetic ketoacidosis, a condition where he had high blood sugar and ketones in his blood system that could affect the heart, brain and kidneys. He was in the Pediatric Intensive Care Unit and then on the Second Floor general medical unit during his two-night hospitalization. Because of Aaron's condition and his brief inpatient stay, the Sweets had already developed a great appreciation for and confidence in Children's Hospital. But they certainly didn't expect their needs for the hospital to take such a serious turn.
But the limping continued over the weekend, and Levi began to turn pale. On Monday, September 10, Rhonda made an appointment to see one of the pediatricians in their group. Blood work indicated Levi apparently had leukemia. By mid-afternoon he was in a patient room at Children's Hospital, having been sent directly there to undergo more thorough testing. By late that evening, the Sweets had spoken with Ray Pais, M.D., pediatric hematologist/oncologist and director of the Children's Hospital Hematology/Oncology Outpatient Clinic, and were "pretty sure" Levi had leukemia. The most conclusive test — bone marrow biopsy — was scheduled for the next morning, September 11. The biopsy was taking place as the terrorist attack on America was under way, and the Sweets watched some of the events unfolding on a hospital television. "Dr. Pais came out to talk to us while the TV was showing the planes that had crashed into the World Trade Center," said Levi's father, Thomas. " We were aware of it, but our minds were a little muddled in the fact that we were sure our son's health was critical." Levi was diagnosed with acute lymphocytic leukemia (ALL). The good news was that ALL is "the good one, the best one there is," according to Rhonda. The cure rate for ALL is 70-80 percent. Levi immediately began treatment for ALL, and he is now in remission. He has a "roadmap" of care that spells out every part of his treatment, from the daily medications he must take to how often he visits the clinic. He is also enrolled in a nationwide treatment study. Although Levi was placed in the more difficult study protocol, meaning his treatment is more intense, the family believes it is important for Levi to participate. "We believe it will help others 10 years down the road," Thomas said. |
The day was Tuesday, September 11, 2001. As their fellow Americans were agonizing over the terror of that day, the Sweet family was facing another sort of agony — a diagnosis of leukemia for the family's youngest child. Ironically, the family's oldest child found his young brother's diagnosis something of a relief because it is a highly curable disease — unlike his own chronic condition.
Aaron had not exhibited the usual symptoms, such as excessive drinking and frequent urination. If he had exhibited such symptoms, his mother, Rhonda, likely would have recognized them, because she is a nurse.
On Friday, September 7, 2001, Rhonda noticed Levi limping around the house. "Since Levi is the youngest of three boys, we assumed the biggest one had squashed the little one," she remembers.