The most disturbing part of Rachel’s story is that there seemed to be nothing wrong.
Rachel Kavlie looked like a normal, healthy 2-year-old when her parents brought her in for what they thought was a routine checkup in August 2012. What they learned next taught them that nothing would be routine for years to come.
At that checkup, Rachel’s pediatrician ordered blood drawn for a standard battery of medical tests. When the external lab tested the blood that was sent, lab personnel called the pediatrician’s office after hours with the message “She needs to be seen immediately. Her numbers are way out of whack.” The toddler’s white blood cell count was 62,000, where a normal reading would have been between 4,500 and 10,000.
“I was in the West Palm Beach airport, sitting in a restaurant when Kerry [my wife] called and said, ‘There’s an issue with Rachel’s blood.’ As soon as I heard the numbers, I knew it was a bad thing. My dad’s a physician, so I’ve been around medical terms all my life. Sitting there in that restaurant, I started to cry,” said Lucas Kavlie, who is assistant vice chancellor of academic services at South University and Rachel's father.
Rachel has acute lymphoblastic leukemia. To make matters worse, even for a leukemia patient, her white blood count was extremely high – shockingly high for a child who literally had yet to show any symptoms of illness. Those numbers went higher overnight between the phone call from the pediatrician that sounded the alarm and her first visit to pediatric oncologist/hematologist John Whittle, M.D., at The Children’s Hospital at Memorial University Medical Center.
Any child with leukemia has a serious health problem, but Rachel’s white blood count was so high that she was considered high-risk even in this group. A faint glint of a silver lining showed in that dark cloud, however: her high-risk status qualified her for clinical trials that might possibly improve her odds in the struggle that lies ahead of her.
“When they told us about the clinical trials, I said ‘I am all for this, but it is up to my wife.’ She said if we can do a trial and help save someone else too, let’s do it,” Kavlie said.
Acute lymphoblastic leukemia requires aggressive treatment, but the outcome is usually good. J. Martin Johnston, M.D., who is director of hematology/oncology at The Children’s Hospital, said Rachel’s likelihood of cure with standard treatment is on the order of 85 to 90 percent, and the protocol being studied in her clinical trial might improve those figures further.
Clinical trials are rigorously supervised national studies that serve as the final evaluation of new medications or treatments as they make their way from the laboratory to general patient use. Patients must meet the criteria of the study and even after they are accepted into a study, they may not know whether they are in the control group or the one receiving the drug under study. It is all part a strict scientific protocol to give a true picture of the effectiveness and safety of new treatments.
Now, Rachel is a few months into what will be a 27-month regimen of chemotherapy. She has been hospitalized three times since her diagnosis – not surprising given the intense treatment that is front-end-loaded into the leukemia treatment cycle. Most of the time, she is back at home in Savannah, where she has a little girl’s dream bedroom and a firm grip on her favorite floppy, slightly worse-for-the-wear stuffed animal. Her older brother, Joshua, is 5 and recently started kindergarten. The family is settling down into the “new normal” of life in cancer treatment.
"We moved from some fantastic hospitals in the Chicago area prior to Rachel’s diagnosis, yet here we found individualized attention and highly trained, specialized staff that cares for our whole family’s needs through the specialized treatment dedicated to saving our daughter’s life,” said Kavlie.