By James Savage for La Louisiane, The Magazine of the University of Louisiana at Lafayette
“Mom, do I have cancer?” Marissa Boudreaux asked the question no parent wants to hear, much less confirm.
Tanya and David Boudreaux had said little during the half-hour drive from Our Lady of the Lake Regional Medical Center in Baton Rouge to the family’s home in nearby Prairieville. The diagnosis that their 8-year-old daughter had leukemia staggered the couple into silence.
Marissa’s question roused Tanya from her unspoken anxiety. The thousand thoughts that had raced through her mind suddenly gave way to absolute clarity.
“Right then, I decided I would never lie to her,” Tanya recounted. “Whatever she asked me, I would tell her the truth.
“I said, ‘Yes, you do,’ and Marissa said, ‘Oh, OK.’ She never believed she wouldn’t beat it. She never believed it was something she wouldn’t overcome.”
By early evening, the Boudreauxs were bound for St. Jude Children’s Research Hospital in Memphis.
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.”
Marissa takes Spencer Boyer’s photo – and his memory – everywhere.
In May, as she walked across the stage in the Cajundome Convention Center to receive a bachelor’s degree in health information management, an image of Boyer was on an iPhone tucked in her pocket.
Spencer was a native of Abita Springs, La., about 70 miles northeast of Marissa’s hometown of Prairieville. He was diagnosed three weeks earlier than Marissa, in September 2005. His ALL affected T lymphocytes, white blood cells that help fight infections, while her leukemia affected B cells.
The pair met at St. Jude and bonded “like Velcro,” Marissa said. Spencer was 12, the same age as Dillan, Marissa’s brother who remained at home in Louisiana during her stays in Memphis. Spencer was slightly ahead of Marissa in treatment, so she peppered him with questions. His explanations alleviated her jitters.
“The beginning is the rough part,” Marissa said. “It’s when you feel terrible, and you look terrible, and your eyebrows and hair are falling out, and you don’t know what is going on.”
Spencer’s cancer was more aggressive and further along than Marissa’s. Poor reactions to chemo and other drugs left him listless and downtrodden for longer periods than other patients. That was unacceptable to Marissa. “I was that kid who wanted everybody to feel better. I wanted to be his medicine.”
Using the base of her IV pole as a skateboard, Marissa would roll past Spencer as he sat in a wheelchair, and “he would perk up and we’d go have some fun,” she said. “He would forget about what was going on for a little while. And he did that for me, too.”
Joan Boyer, Spencer’s mother, recalled her son comforting Marissa in the “medicine room,” the dreaded area in the hospital where patients received injections, chemo and other drugs. “Spencer would always try to be near Marissa to try to help distract her” from the pain and nausea that resulted.
When Spencer was bedridden, she invaded his room armed with Nerf guns. The resulting battle “made such a ruckus that I thought the nurses would put them out,” Joan Boyer said.
Spencer relapsed in 2007 and underwent an unsuccessful bone marrow transplant. He died on June 12, two months shy of his 14th birthday.
The Boyers installed a tile memorializing Spencer in a St. Jude corridor. It’s at the base of a mural of the hospital’s namesake and reads: “To my St. Jude family. Thank you. I love you, Spencer Boyer.”
Every day during her internship, Marissa walked past the tile. Without fail, she touched it and told her friend hello.
Tanya Boudreaux remembers only one time when Marissa’s confidence waned during her battle with leukemia. She had pancreatitis, an inflammation of the pancreas caused by a high-dose steroid she received as treatment. The excruciating condition confined her to the St. Jude affiliate clinic in Baton Rouge for weeks.
“She was in the bed,” Tanya recalled. “She was crying because it was hurting, and she kept asking, ‘Why? Why is God letting me feel this pain?’ I told her, ‘Baby, I don’t know. I don’t know today. But maybe one day, we’ll know why.’”
Marissa now knows why.
“I’ve helped so many children. They found newer, better, faster, painless cures because of what I did, and what countless other children like Spencer did and sacrificed for. I would never change it. I would never take it back. Ever. Who would I be otherwise?”
Although more than a decade separates Marissa from leukemia, aftereffects remain. Some are sensory, others more serious.
She can’t tolerate the smell of Purell, though other hand sanitizers are OK. Alcohol wipes, used to sterilize skin before an injection, make her cringe more than the shot does. She can’t swim in saltwater because it reminds her of the saline used to clean her Mediport®, the access point once located on her chest where she received chemo.
She has stones in both kidneys and her gall bladder. She has low bone density. Most leukemia patients have secondary cancers later in life; hers arrived at 17, when doctors discovered and removed precancerous cells on her cervix.
The most-apparent reminder of Marissa’s cancer journey is the length of her hair. When she began chemotherapy, and her hair began to fall out, the 8-year-old refused to allow herself to be photographed. To hide her baldness, she amassed an extensive collection of hats and a blonde wig marketed by the TV show Hannah Montana.
“That’s the age you are building your identity, how you see yourself and how you want to be seen. It’s not conducive to that process to be bald,” Marissa explained.
Today, her hair is 32 inches long, and is never any shorter than her hip. It’s both “a safety blanket and a trophy,” she said.
“It’s a safety blanket because being bald made me feel naked and exposed. It made me feel ugly. It’s a trophy because I’m still here. I lost it and it grew back. When people ask why my hair is so long, I tell them, ‘Because I’m a survivor’ and leave it at that.”