Madeleine Martin has a rainbow on her tummy and a button on her chest. That’s how the precocious toddler explains the semi-circular scar on her abdomen and the catheter embedded just below her collarbone. In a voice of angelic innocence, Madeleine assures her parents that St. Jude is going to fix her tummy.
For 2-year-old Madeleine, that’s all she needs to know.
The world is a bit more complicated for Madeleine’s mom, Katie. Thirty-three years ago, she, too, was a patient at St. Jude Children’s Research Hospital. Now Katie is reliving the experience through her daughter.
During a routine checkup in 1979, a pediatrician discovered a lump in Katie’s abdomen. Within days, surgeons had removed her right kidney along with a large, cancerous mass called Wilms tumor, or nephroblastoma. Doctors advised Jay and Mary Jellison to take their 18-month-old daughter to St. Jude for further treatment, which would include chemotherapy.
“We wanted the best care for Katie,” Mary says. “The doctors and staff of St. Jude offered hope to all children with cancer. It was a bonus that St. Jude paid for our gas, hotel room and meals; that was amazing. We got the best care, and we didn’t have to pay for any of it.”
Every two weeks, the family made the trek to Memphis so that Katie could receive chemotherapy and meet with her oncologist, Judy Wilimas, MD. Because the hospital did not have long-term housing available in the 1970s, the Jellisons drove home immediately after each checkup. Mary vividly remembers those seven-hour car trips. “The protocol was quite different then,” she says. “Katie would receive her chemo, and on the drive home she would start feeling nauseated, often getting sick in the car.”
As she matured, Katie enjoyed excellent health, but remained vigilant.
“Growing up, I was told to be cautious because I had only one kidney,” she recalls. “I wasn’t supposed to go horseback riding or do contact sports. I stopped soccer at the sixth grade.”
Eventually, Katie embarked on a career in health care. “I knew I wanted to be in the health field from the time I was itty bitty because I loved St. Jude so much,” she explains. “The whole reason I became a pediatric nurse practitioner is because of my experiences with the nurse practitioners there.”
In 2009, Katie and her husband, Justin, welcomed a beautiful baby girl into their lives. Although Madeleine seemed perfect, Katie worried that the baby might develop cancer. Even though the odds of having a child with Wilms tumor were negligible, the possibility haunted Katie. Last fall, she traveled to Memphis to participate in St. Jude LIFE, an ambitious research project that aims to identify the long-term effects of childhood cancer and its treatment. During one appointment, Katie confided her concerns to Tim Folse, MD, of Oncology. “If it will make you feel better, Madeleine could have an ultrasound,” Folse told her. “Why don’t you talk it over with her pediatrician?”
After discussing pacifiers and potty training and sleep issues during Madeleine’s annual checkup, Katie broached the subject of an optional scan. An ultrasound was scheduled for October 12.
Justin knew Madeleine’s odds of having Wilms were miniscule. “While I was blowing leaves in the yard, I was thinking, ‘We’re just going to be throwing money away. They’ll find out everything’s fine, but I’ll write the check, and then we’ll have peace of mind,’” he recalls.
The morning of the procedure was fraught with petty irritations. A fussy toddler. A misplaced insurance card. A traffic jam. After the procedure, both mother and daughter were exhausted. They waited for the results. ...And they waited. What was causing the long delay?
Finally, a technician called Katie to the phone.
Madeleine’s pediatrician was on the line. To Katie’s amazement, the physician was crying. “I don’t know how to tell you this, but there’s a mass on Madeleine’s left kidney,” the doctor told Katie. “They think it’s Wilms because of your history.”
Soon the doctors arrived with worse news. They had detected lesions on both kidneys.
Madeleine’s grandparents were astounded when they heard the diagnosis. “Back in 1979 when we found out Katie had cancer, we were in total shock. This one was a double shock, plus déjà vu,” Mary Jellison says. “We had assumed that was all behind us. Now our daughter would have to go through the same thing that we had—only this one was even trickier, because they had found it on both of Madeleine’s kidneys.”
Justin, Katie and her parents unanimously agreed to request a referral to St. Jude—a decision based not only on the institution’s reputation for clinical excellence, but also on its research emphasis.
“Katie’s dad and I both work for research organizations,” Justin explains. “Of course, we believe that Madeleine’s going to make it, but at the same time, it’s good to know that what they learn from her will help other kids.”
When the family arrived in Memphis, Katie’s St. Jude physician provided Madeleine’s oncologist, Lisa McGregor, MD, PhD, with pertinent details about Katie’s treatment.
“When I said Katie’s name, Judy Wilimas went to a book where she had kept information on all of the old Wilms tumor patients,” McGregor says. “She immediately gave me a summary of the treatment that Katie had received three decades ago.”
Madeleine soon began six weeks of chemotherapy treatments. Afterward, using the nephron-sparing procedures that he had helped pioneer, Surgery Chair Andrew Davidoff, MD, removed four masses from Madeleine’s right kidney and five from the left, while sparing as much healthy kidney tissue as possible. The operation was much more complex than the procedure Katie had undergone in 1979, which had involved complete removal of a kidney.
“Even though the imaging may look a little foreboding, more often than not, we’re now able to save normal kidney on both sides,” Davidoff says. “That was the case with Madeleine.”
Two masses on Madeleine’s left kidney were Wilms tumor; the others were nephrogenic rests, which are lesions that have a high likelihood of becoming cancerous. The operation left Madeleine with two-thirds of her left kidney and three-fourths of her right.
“She has more kidney than I have, which is wonderful,” Katie says.
Unlike her mom, Madeleine should one day be able to ride horses, play soccer and participate in any other sport she chooses.
“She’s not at greater risk than anyone else is of injuring her kidneys,” Davidoff explains. “I wouldn’t give her any activity restrictions.”
Because of the bilateral lesions and her genetic predisposition, Madeleine has a higher risk of recurrence than her mother did. To further explore the rare familial link, Christine Odom, a genetic counselor at St. Jude, set up a battery of genetic tests and coordinated the family’s enrollment in a Wilms tumor genetic study.
As a result of the increased risk factors, Madeleine is now receiving additional chemotherapy.
Justin compares his daughter’s treatment to a boxing match. “The initial chemo before surgery is like they’re just jabbing the cancer over and over in the same spot,” he says. “They’re testing it, trying to get a reaction and softening it up. Then they do the surgery, and they come back and do some more of that jabbing, but they start mixing in different punches and getting it off balance—body blow, head shot, work the kidneys—get in there. It’s low dosage and then it’s a mix of drugs, and then at the end they give bigger doses. That’s what I call uppercut time. They’re throwing the biggest punches they can to knock it out.”
Symbol of strength
For the most part, Madeleine appears to be unconcerned about the epic battles occurring on her behalf. The tiny girl derives joy from the simplest actions—whether it’s singing “Twinkle, Twinkle, Little Star,” hurtling down a playground slide or judging the heft of a ball. She constantly delights friends, family and caregivers with her advanced language skills, her ebullience and her keen powers of observation.
Playing in the bathtub one evening, Madeleine begins rubbing soap across her scar. “What are you doing?” asks Katie.
“Madeleine wash scar off. Madeleine make tummy smooth,” the toddler responds.
“Sweetheart, you can’t wash off your scar; it’s part of you now, and it helped to make your tummy all better,” Katie gently explains. “It’s a beautiful scar, and it shows your strength and courage.”
Madeleine contemplates those words. A few weeks later, the little girl inspects her reflection in the mirror.
“Madeleine has a rainbow on her tummy,” she announces.
“Yes, that’s right! Madeleine has a rainbow on her tummy,” Katie exclaims, reaching out to hug her daughter. “And it’s the most beautiful rainbow I’ve ever seen.”
Enveloped in her mommy’s warm embrace, that’s all Madeleine needs to know.
Reprinted from Promise Summer 2012