The St. Jude Story: Suffer the Little Children : Devastated Twice

Devastated Twice Watching it on TV, you couldn't get your mind around the devastation in the aftermath of Hurricane Katrina. But imagine that you lived in the area and your child was being treated for life-threatening cancer.

Would his medical records be destroyed by the flood? Would the hospitals be able to function? Would there be enough doctors and nurses to go around? Families who had lost everything else were desperate not to lose a child too. As rescue operations lagged and hope dwindled, one medical center went into action: St. Jude Children's Research Hospital in Memphis.

Briana Cuevas, a beautiful, green-eyed straight-A student, was diagnosed with Hodgkin's lymphoma on July 21, four days before her 11th birthday and five weeks before the hurricane hit. Her mother, Alissa, says that before these life-altering events, she and her husband, Greg, and their kids Kylah, 1, Landon, 3, and Briana were a typical busy family in Long Beach, Mississippi. Landon would be racing through the house in his Spider-Man pajamas, pretending to be Captain Hook, with Kylah in hot pursuit, clutching her Barbie dolls. Briana might be in her room on a tie-dyed blanket, listening to her favorite CDs by the country band Rascal Flatts, and IM'ing her friends. "With both of us working, we'd get home, have dinner, do baths, get everybody to bed -- that's maybe two hours with the kids every night," says Alissa. "You feel guilty because you're not spending enough time with them."

During the summer, Briana wasn't feeling well, but her symptoms were vague. At first her mom guessed it might just be moodiness from the onset of puberty. Doctors thought her swollen lymph nodes might signal mono. That led to more tests and a PET scan, which revealed large tumors in her chest and spleen. When the former Miss Pre-Teen Mississippi was finally diagnosed with cancer at Children's Hospital, New Orleans, it was shocking and devastating. But when Hurricane Katrina followed Briana's third dose of chemotherapy, the family's whole world fell apart.

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The Cuevas family wasn't alone. There were probably 200 or so kids with active cancer in the Gulf Coast area, estimates Joe Mirro, MD, chief medical officer of St. Jude. Without access to their medications or treatments, they could be at serious risk. "When your kid has cancer, you've already been through one hurricane," he says. Now many families were going to have to prepare for another one. He knew he had to do something to help them -- and fast.

At Children's Hospital, 16-year-old Kyle Bergeron was continuing his valiant struggle against acute myelogenous leukemia, or AML. Since he was first diagnosed in March, he'd been home in Luling, Louisiana, a total of only five weeks. A musical theater buff, he had last performed in Joseph and the Amazing Technicolor Dreamcoat. Bald and reed-thin from the industrial-strength chemo, he had also just undergone a stem-cell transplant from his twin brother, Logan. He was in the isolation unit while he waited for his immune system to slowly rebuild itself. Vulnerable to infection, he could not afford to expose his weakened body to any germs.

His mother, Vicki, remembers, "I was in complete denial that Katrina was really coming. Up until the last minute, I kept saying, 'It's going to turn away.' " She and her sister and sons hunkered down on the fourth floor of the hospital. "God had gotten us through so much already," Vicki says, "that I just couldn't see him letting us down now."

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Before the hurricane, Ronnie King, 22, was playing Mr. Mom in Harvey, Louisiana, to his 13-month-old boy, Mason. D'Anna Holmes, 21, Mason's mom, was in France doing an internship as a requirement for her major in international business and French at Xavier University. Ronnie was holding down the fort. But something was wrong with their bright-eyed little boy. Born premature at 26 weeks, Mason had been hospitalized for the first four months of his life. But now, his usually high energy level had decreased, he wasn't gaining weight and his abdomen was distended.

In August, soon after D'Anna had returned home from her internship, Mason started throwing up and went all day without eating. The couple took him to the ER at Children's Hospital, where an x-ray showed that his liver was grossly enlarged. On Saturday, August 27, Mason was diagnosed with hepatoblastoma, or liver cancer. "Emotionally, we were shocked," Ronnie says. "But we had to hold it together. A hurricane was on the way."

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After Briana's third chemo treatment at Children's Hospital, it was clear that Katrina was not going to change course. "We knew the power would go out, and that Bri couldn't be exposed to any bacteria," says her mom, Alissa. "We had to leave. I packed four days' worth of clothes. My husband, Greg, thought that was too much." They drove to Atlanta. When the hurricane hit, it destroyed their Long Beach neighborhood. But they did not know the fate of their home. "We didn't have a clue what was going on. All we knew was that Briana's next treatment was supposed to be on Thursday. What were we going to do?"

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At 12 feet above sea level and with heavy metal storm shutters in place, Children's Hospital was ready to weather the storm. But the families inside weren't so confident. Kyle was in isolation, and no one could see him without wearing a mask and gloves. "The hardest part was having to see my friends through a window," he says, "or on the phone."

When Kyle was first diagnosed with leukemia, his mom said to him, "I will be with you every step of the way. Your pain will be my pain, and I'll try to take as much of it away from you as I can." As the hurricane approached, she never left his side. She couldn't reach her husband, Charlie, because neither cell phones nor land lines were working. "I knew he was probably OK," says Vicki. "But I just needed to hear his voice. I was near the breaking point."

They were moved to the inside of the hospital, away from the biggest windows. It was very dark because of the storm shutters, so it was hard to tell day from night. The electricity was out, but Vicki's sister, Sherry Duvall, had a radio, and one nurse had a lantern. "The wind was horrific. At one point, something hit the windows with a really loud bang, and I was so afraid this was it." Luckily, the window didn't break, but the storm seemed to go on forever. "The wait was the worst thing," she recalls. "But then, suddenly, we were all right." Kyle says that he had felt the bed shaking, but still, "they were the nervous wrecks. I was the calm one."

They had food, and plenty of bottled water. They were able to shower by lantern light -- till the water supply stopped running. But it soon became clear that they would have to get Kyle to a safer place.

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In another part of the hospital, Ronnie, D'Anna and baby Mason had also waited out the storm. Mason clutched his little beanbag monkey, Alfred, who had been by his side since birth. "I was expecting it to be a lot more scary," says D'Anna, who had survived hurricanes before at her mother's house in Gulfport. "I didn't understand how bad things were." After the levees had broken, someone plugged in a TV in the lobby where a generator was working, and Ronnie finally saw just how devastated the area was.

Help on the Way In Memphis, doctors at St. Jude were preparing a special medical team to dispatch to their small affiliate clinic in Baton Rouge. "It was the closest place to New Orleans that could take care of kids who had cancer," says Dr. Mirro. He knew they'd have to beef up the facility to handle the flow. His team loaded medical equipment, furniture, supplies and medicines into trucks. On the Sunday after the hurricane, they set up the clinic.

"I was so frustrated watching it all on TV," recalls Chris Sinnock, who has been a social worker at St. Jude for 26 years. "So when I got the call asking if I'd consider going to help out in Baton Rouge, I jumped at the chance to take some action -- to do something." Everyone pitched in and unloaded the trucks overnight. "Nobody was above or beneath any task," she says. "The staff just gelled." Within a day, they created a clinic that could handle two hospitals' worth of pediatric oncology patients. And soon the patients started flowing in.

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As a radio marketer, Alissa Cuevas had organized many fund-raisers for St. Jude over the years. She had a contact there, and he suggested she call Joe Mirro about what to do about Briana's treatment. "So I call this Joe Mirro," she says, thinking it's some lowly facilitator, "and we're talking away, and it's not till later that I realize he's the chief medical officer of St. Jude!" But it worked. Alissa, Briana and Kylah got on a donated Angel Flight to Memphis that Friday, while her husband, son and two dogs drove up from Atlanta. By the next day, Briana was having her much-needed chemotherapy. The family waited in agony to learn if the large tumors in their beautiful girl had shrunk.

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Dr. Mirro says there was no favoritism involved in determining which patients went where: "Children are children. They're kids with cancer, and we're going to treat them all equally, making decisions based on medical need." In that first week, they saw 120 patients at the Baton Rouge clinic, and referred many of them to other facilities that could handle their long-term care. Forty-five were flown to St. Jude in Memphis.

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Vicki and Kyle were reunited with Charlie in Baton Rouge, where they learned that their home in Luling was standing but the roof was torn apart. Then they were flown to St. Jude in Memphis; Kyle had to remain in isolation there to rebuild his body from his stem-cell transplant. His oncologist at St. Jude, Ray Barfield, says that AML is a high-risk leukemia, and the treatment is rough. No one knows what Kyle's long-term chances are. It takes up to a year to develop a fully working immune system. Until then, certain viruses could be lethal to him. His new cells could see his own tissues as foreign and decide to attack them. "But Kyle's a wonderful guy," he says. "I have enormous admiration for him. Having been in a hurricane at one of the most vulnerable periods of transplant and continuing to have a sense of humor and a smile -- it's amazing to see."

His mom agrees: "There have been so many times where we could have lost him. Earlier this year, when he had septic shock and infection spread throughout his entire body, somehow he fought it off. Even the doctors said that Kyle must have a guardian angel."

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Ronnie, D'Anna and baby Mason, still clutching Alfred the monkey, also found their way to Baton Rouge and were routed to St. Jude in Memphis. Some of D'Anna and Ronnie's friends and family lost everything in the hurricane, but the house they lived in with a great-aunt survived.

Only about 200 children a year get the kind of tumor Mason has, says his doctor, Jeffrey Dome, and he has a long road of treatment ahead. But his prospects are much better than those of an adult with a liver tumor. Ronnie says his bond with Mason is very strong and they'll get through it together. "When I found out D'Anna was pregnant, my goal was to be the best dad I could be. With Mason sick and in the hospital, I vowed to myself never to leave him alone, no matter what he's going through. That keeps me going."

Mason must undergo two to four months of chemo before having surgery to remove the tumor. That will be followed by several more months of chemo. If all goes well, there's a good chance he'll be cured. If not, he may need a liver transplant.

"We're well grounded in our faith," D'Anna explains. "There's no reason for people to feel sad about us. Mason is in good spirits, we're in good spirits -- and there's no doubt he's going to beat this."

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Briana's hometown of Long Beach was demolished in the hurricane, but her family learned their house was still standing. They drove down to view the damage and saw many neighborhoods that were completely destroyed. "Our three-year-old's school is a slab," says Alissa. "Our church where we were married and all our kids were baptized is gone. When I saw that, I knew we would not go back."

Her husband, Greg, is looking for a job in Memphis, and Briana is enrolled in public school, where she's quickly making friends. "Briana has the charming, outgoing kind of personality most people want," says her mom. "But she also tries to keep all her feelings in and be strong for everybody. I'm trying to teach her that it's OK to be weak once in a while." That lesson hit home when the two were in the car and a song sung by Rascal Flatts came on the radio. It's all about a young girl who has just learned she has cancer, and includes the lyrics "Sara Beth is scared to death, as she sits holding her mom." Briana finally said, "Mom, that's how I feel."

Briana had no medical records when she arrived, says her doctor, Melissa Hudson. (No one could yet access the records that were stored in the evacuated hospitals in New Orleans.) "Luckily we had very informed parents, and the regimen she was on is very standard and appropriate." Still, they decided to do a PET scan to see how the tumors were doing.

Briana actually fell asleep in the scanner. Afterward, she said, "I'm feeling a little tired, but I guess I'm OK." As her siblings raced up and down the halls of the hospital, she added, "If only I could bottle their energy ..."

Then the good news came: "Her PET scan was negative," says Dr. Hudson. "The tumor had shrunk so much that we weren't even seeing activity on the scan. The lymph nodes had shrunk considerably too. We're very optimistic about her long-term outcome."