Marissa went back to St. Jude this spring.
Fourteen years after her leukemia diagnosis and 11 years after defeating the disease, she returned – as an intern – to the hospital that helped save her life. She was pursuing a bachelor’s degree in health information management at UL Lafayette. It requires an internship; she had secured a spot in St. Jude’s Health Information Management Department, which maintains medical records for the 7,500 pediatric patients with cancer, blood disorders and other life-threatening diseases the hospital sees annually.
“I felt like an imposter for a couple of days,” said Marissa, now 22. She thought, “I’m not supposed to be in here. I’m supposed to be in a patient room.”
The internship required her to complete three projects. She did nine during the three-week stint. Those ranged from updating the department’s organizational chart to analyzing budgets. She wrote proposals on staffing needs, and presented her recommendations to senior leadership.
As a patient, Marissa’s initial stay at St. Jude lasted three months. Over the next three years, she traveled periodically to Memphis for checkups while also receiving care at the St. Jude Baton Rouge Affiliate Clinic at Our Lady of the Lake hospital.
The internship was the only time Marissa had been to St. Jude without Tanya, but she didn’t let the workday end without calling her mom.
“She was on top of the world,” Tanya said. “It was magical talking to her.”
David Boudreaux wheeled the family’s Winnebago past the security gates and into the Memphis hospital’s circular driveway. It was after midnight on Sept. 29, 2005. Just hours before, doctors had confirmed the family’s worst fears. Marissa had leukemia.
During her weeklong stay at Our Lady of the Lake, Hurricane Rita came ashore near the Texas-Louisiana border. Though its landfall was 200 miles west, the Category 3 storm inundated the state capital with 9 inches of rain and winds in excess of 100 mph. Marissa remembers the hospital’s flickering lights adding a dreamlike dimension to an already surreal situation.
Under usual conditions, Marissa could have begun cancer treatments at the clinic in Baton Rouge. The storm changed that, and the hospital arranged for the family to go to St. Jude’s flagship in Memphis. Area airports had grounded flights, so the Boudreauxs drove their motorhome. Marissa, sedated with pain medication, slept for much of the six-hour drive while her parents and 12-year-old brother Dillan rode in dazed silence.
Time was critical. Marissa had acute lymphoblastic leukemia. ALL is the most-common form of pediatric cancer. Most patients survive, but it spreads quickly if left untreated.
For Marissa, the disease had a head start, although doctors detected it early. She hadn’t told anyone when abdominal pains began the previous month. She also had bruises on her legs, chest and back, but those were common for such an active child. “I did everything – karate, gymnastics, dancing, cheerleading,” she said. “I was a bunch of energy.”
In the months preceding her diagnosis, Marissa’s brother had a heart procedure. Her dad had a melanoma, the most serious type of skin cancer, surgically removed from his back. Hurricane Katrina hit in August 2005; though the Boudreauxs were not affected by storm damage, family in New Orleans were and had evacuated to Prairieville. “I knew I was sick,” Marissa said. “I didn’t tell anyone because too much had gone on. It was a bad year.”
One afternoon in mid-September, the usually effervescent, energetic little girl arrived home from school and just laid down. “It was not like her,” Tanya said.
Marissa had a low-grade fever and began to vomit. She finally told her mom about the abdominal pain; by then, it had begun to move, “like a snake. You felt it go through your body,” Marissa said.
They went to the emergency room at a hospital in nearby Gonzales. Blood tests showed anomalies. Doctors there recommended taking her to the St. Jude affiliate at Our Lady of the Lake. Within a week, the family was pulling up to the front door of the Memphis hospital.
“There was a team of people waiting outside,” Tanya said. “At the time, I didn’t realize it, but I look back on it now and think, ‘That’s amazing. That just doesn’t happen.’”
Leukemia had barged into their lives so quickly. The sight of the medical staff, assembled and ready to treat her daughter, gave Tanya a semblance of calm for the first time in weeks.
She opened the RV’s window. A nurse peeked inside, and asked, “Mr. and Mrs. Boudreaux, is Marissa in there?”
Roman Catholics consider St. Jude Thaddeus the patron saint of hopeless causes. When the namesake, nondenominational hospital opened in 1962, children in the U.S. diagnosed with cancer faced dire prognoses. Only 20 percent survived; just 4 percent with ALL lived.
Hospital founder Danny Thomas offered hope to the hopeless. The television pioneer and 1950s sitcom star envisioned a place that would provide care, travel, food and housing – at no cost – to pediatric cancer patients and their families.
Today, the overall childhood cancer survival rate is 80 percent; 94 percent of patients with ALL live. Though improved, neither statistic satisfies Dr. Ching-Hon Pui, chair of St. Jude’s Department of Oncology. Pui oversaw Marissa’s care. “Losing even a single patient is unacceptable. We have to work until we can cure 100 percent.”
That work involves continuous clinical trials. Most patients are research subjects, Pui said. “We learn from patients so we can help future patients. Each generation helps the next.”
Marissa joined St. Jude’s lineage of treatment and discovery soon after she arrived there.
Acute lymphoblastic leukemia affects blood and bone marrow. Children develop ALL when their bodies produce too many immature white blood cells. The rapid growth of leukemia cells leaves little room for healthy white and red blood cells and platelets. That impedes the body’s ability to fight infections, exchange oxygen in respiration, and stop bleeding.
To confirm the suspicions of emergency room doctors in Gonzales that Marissa had leukemia, physicians in Baton Rouge performed a bone marrow aspiration, inserting a thin, hollow needle into her hip bone to remove the soft tissue inside.
Later tests showed she had B-ALL, a type of leukemia that affects B lymphocytes, white blood cells found in bone marrow. B cells make antibodies that combat bacteria and germs.
What doctors didn’t know was that Marissa had a yet-unidentified leukemia subtype called Philadelphia chromosome-like, or Ph-like, ALL. A Philadelphia chromosome is a genetic abnormality caused when pieces of two chromosomes swap places. This creates a gene that enables leukemia cells to grow uncontrollably.
Marissa participated in a clinical trial that helped researchers discover the Ph-like ALL subtype. She was among 344 B-ALL patients Pui and colleagues monitored to see how drug therapies affected the number of leukemia cells remaining in bone marrow after treatment. This measurement enabled doctors to adjust the intensity of future treatments.
Researchers now know that about 15 percent of pediatric ALL patients have the Ph-like subtype. Before it was identified, worldwide survival rates hovered near 62 percent. In the St. Jude trial in which Marissa participated, Ph-like ALL survival rates jumped to more than 92 percent.
Doctors used conclusions gleaned from Marissa and the other patients’ cases to develop individualized approaches to treating B-ALL. Now, every patient isn’t treated with the same intensity, Pui said.
“Marissa is very important. If she had not gone through the protocol, we would never have figured out how to properly treat Ph-like ALL. She contributed to our research, just as previous patients contributed so Marissa could get good treatment. We gain information from each of our patients. We are learning every day.”
Shortly after her internship ended earlier this year, Marissa returned to St. Jude for an annual checkup.
While waiting in an outpatient clinic, she sat near a mother and daughter. The girl was about 4 years old. The woman appeared panicked and uncertain. It was a look familiar to Marissa. Tanya and David once had it. “It’s like a deer in the headlights. They were just told their child has cancer. It’s a stare that says, ‘What do I do?’”
Marissa and the woman talked a while. The little girl was diagnosed the previous week. Marissa outlined her own experiences and assured the mother that treatment today is less painful and less invasive than what she received. For example, doctors no longer give injections that pierce leg muscles and nearly touch the bone, or prescribe high-dose steroids such as the one that inflamed Marissa’s pancreas.
“It’s a lot easier now,” Marissa said while recalling the story. “There was no reason for her to panic when I could tell her it’s going to be OK. I didn’t want to tell her that her child was going to live, because I had friends who didn’t. But I wanted her to at least have hope.”