Her valiant fight against leukemia is helping other children throughout the country win their cancer battles.
By Greg Raver-Lampman
When Damon and Laura DeSue brought their 3-year-old daughter Lexi to CHKD for treatment for cancer, they had no idea that her doctors played key roles in the world’s largest pediatric cancer research organization.
Damon insists he would have sought out the best treatment, regardless of location or cost.
“We would have done the best for Lexi,” Damon said. “We would have gone anywhere.”
Fortunately, state-of-the-art treatment was available right here at CHKD.
“Traveling across the country to get treatment for Lexi would have made an already horrible situation much harder,” Damon said.
While many in the community know that CHKD’s cancer specialists treat all forms of cancer in children, far fewer know about CHKD’s wide-ranging participation in the multi-national Children’s Oncology Group, an ambitious research cooperative involving more than 200 hospitals in North America, Australia and Europe. The Children’s Oncology Group allows doctors at CHKD access to and participation in innovative clinical research trials that patients receive at many of the best-known cancer research centers, such as the Mayo Clinic or Johns Hopkins.
“This research effort is an amazing success story involving thousands of doctors all working together toward the same goal,” said
Dr. Eric Lowe, the group’s principal investigator at CHKD. “Pediatric cancer, once considered a death sentence, now has a survivability rate of 80 percent, thanks largely to this kind of cooperative research.”
Among the beneficiaries: Lexi DeSue.
While no cancer case is typical, Lexi’s illustrates how a family’s life can unravel with the utterance of a single word. In Lexi’s case, that word was leukemia.
Like the families of many of CHKD’s cancer patients, before the diagnosis the DeSues had only a vague awareness of the services CHKD offered. A CPA, Damon directs the tax department at Dollar Tree. He filled his weekends coaching his 6-year-old son Tyler’s football and baseball teams. Their teenage daughter, Candice, had an active schedule that included playing high school soccer. Lexi, the shy and even-tempered baby of the family, kept close to her mother.
One night in April 2008, Lexi woke up crying with pain in her back. “The pain would last for three days then go away for four,” Laura said. When this continued, Lexi had some blood tests and was referred to the Children’s Cancer and Blood Disorders Center at CHKD.
At CHKD, Laura entered the colorfully decorated outpatient center where children with cancer were being treated. “These poor kids,” she whispered on the phone to Damon, who drove in from his work to meet them there.
Soon after Damon arrived, doctors gave them devastating news: Lexi had leukemia.
This can’t be, Laura thought, making an effort to focus. There’s no way.
Even as the DeSues absorbed news of the diagnosis, they had to make rapid decisions about medical procedures that needed to be performed – a bone marrow biopsy to determine the type of leukemia, a lumbar puncture, more blood tests, drugs to drive down Lexi’s dangerously high white blood count.
“We had a lot of responsibility and a lot of decisions to make in a really short time,” Damon said. When the doctors left them alone, a 9-year-old cancer patient, Hannah Kjelvik, came to the door. “I just wanted to give you a hug,” she told Laura.
In the whirlwind of activity that consumed those first days, there was no thought about the best place to go for treatment. The DeSues knew they were already there.
Lexi was stabilized as doctors confirmed a diagnosis of acute lymphoblastic leukemia. Pediatric oncologist William Owen discussed Lexi’s treatment. He told the DeSues that Lexi could participate in a research study that would give her access to the cutting-edge protocols recently shown by the Children’s Oncology Group to be the most effective at treating her type of leukemia. By participating, Lexi might also help refine the best treatment currently available.
The DeSues agreed. With that, Lexi was enrolled in a pediatric trial of a treatment for acute lymphoblastic leukemia currently being used in other major pediatric facilities. When Dr. Owen said they could seek a second opinion from any hospital in the country, they declined. “It was a gut feeling,” Laura said. “These were people you could trust.”
During the first few days, the DeSues met many other doctors and discussed the clinical trial with them as well. One of those physicians was Dr. Lowe, who acts as CHKD’s point man in designing and coordinating childhood cancer research studies that sometimes have patients spread across the globe.
Lexi’s protocol is one of over 70 ongoing cancer research projects at CHKD that bring ground-breaking treatment to Hampton Roads’ children suffering everything from bone cancer to brain tumors.
“This is a huge deal for the parents,” said Dr. Lowe. “It’s a huge deal for the institution. My job is to see that children diagnosed with cancer get the best treatment available. If we didn’t have these research projects, we’d be sending almost all our patients to other hospitals.”
Like the majority of pediatric cancer research protocols, Lexi’s did not involve brand new drugs, but minor alterations in how the existing drugs were administered. In fact, vincristine, one of the primary compounds used in Lexi’s treatment, was approved by the FDA almost half a century ago and is used in other cancer therapies in combination with other cancer-fighting drugs.
The key to pediatric cancer research is often a mind-bendingly intricate choreography that tests the effect of altering dosage, timing and sequence of medications that have often been in use for decades.
During the first phase of the research trial, for instance, Lexi received vincristine on days 1, 8, 15 and 22. She took daily oral chemotherapy from days 1 through 28. Another chemotherapy drug was given on day 4. She received chemotherapy into her spinal fluid on days 1, 8 and 29. Some days, the drugs were given orally, some days intravenously, some intramuscularly, some into the spinal fluid. And those were just four of eleven medications.
The treatment protocol is divided into phases, and each phase is blocked out in cycles. With each phase, the medications and sequencing change. On the DeSues’ kitchen counter sit half a dozen bottles of chemotherapy drugs, steroids and antibiotics. The DeSues have to dispense them at precisely the right time, regardless of what they’re doing. Often, they have to come to CHKD for administration of IV chemotherapy and tests to measure blood levels of the drugs and the effect on the white blood count.
While the precise times dictated in the protocol might appear excessively rigid, minor adjustments tested through such research have produced astonishing results.
“A single cancer research project seldom produces a giant leap in survival that makes headlines,” Dr. Lowe said. “It’s gradual, cumulative, like climbing one tiny step at a time to reach a mountaintop.”
Today, thanks largely to such approaches, Lexi’s form of cancer has a survival rate of 94 percent. But researchers, including those at CHKD, hope to push it one step higher.
Needless to say, the process is extraordinarily time consuming, expensive, and requires hundreds of tests and reams of paperwork not covered by insurance. While the National Cancer Institute provides some funds, and the Children’s Oncology Group funnels donations to member hospitals, local donors play an enormous role in keeping these efforts alive.
“If we didn’t have donors willing to fund cancer research at CHKD, our program couldn’t survive,” said Dr. Lowe. “Fortunately, we’ve had tremendous support from the community over the years.”
Today, Lexi is in full remission, continuing on a maintenance regimen of medications she will take until July. Over the course of treatment, Lexi has blossomed into a bundle of energy who peppers visitors with questions.
While the DeSues feel gratitude that they could stay in the area for their daughter’s treatment, they’re also heartened that Lexi may help other children diagnosed with cancer in the future.
“I’m proud,” Damon said. “Lexi has contributed more in her four years than most people do in a lifetime.”
Drs. Lowe and
Owen practice with Children’s Specialty Group PLLC at CHKD.
This story was featured in the first quarter 2010 issue of KidStuff, a publication of Children's Hospital of The King's Daughters.