"Your Child Has Cancer"

An hour after whisking the girl into the emergency room, however, doctors emerged with news that shook Amber Baginski’s world to its core. Caitlyn was suffering from a brain tumor. “And the news just kept getting worse,” says Amber, of north Naples. While nearly 75 percent of brain tumors are benign, doctors at North Collier discovered that Caitlyn had stage III anaplastic astrocytoma, an especially aggressive malignancy resistant to treatment and with a high recurrence rate.

“I was completely numb,” Amber recalls.

Childhood cancer is a crash course in extremes. A family will be ruthlessly tested, over and over again, on how to answer the question, “Why?” as well as on their definitions of words like normal and hope. Along the way, most parents will learn a great deal about the programs and services available from official agencies as well as the invaluable support offered freely by relatives, friends, neighbors and strangers. To succeed often means more than just beating the disease; it also means providing sick children with steady doses of regular kid stuff while managing adult stresses. The test begins the moment any parent hears the words, “Your child has cancer.”

Darlene Ann Grossman left her 16-year-old son Jonathan’s bedside for just a moment to move her car from Tampa General Hospital’s valet parking area. It was May 2005, and the Fort Myers mother and son were already several weeks into a labyrinth of MRIs, X-rays and blood tests, trying to determine why a knee injury Jonathan suffered in a soccer tournament that April hadn’t healed properly. While Darlene drove to a long-term parking spot, the surgeon breezed into the boy’s recovery room. The physician matter-of-factly told the lone teenager the results of his biopsy. Jonathan had osteosarcoma, a form of bone cancer.

Darlene struggled to control her anger at the doctor’s insensitivity and her disbelief at the news. “When you have a 16-year-old varsity soccer player, you think it’s a soccer injury. But no, it’s cancer.” Darlene says Jonathan was already dealing with the disappointment of being diagnosed with diabetes five years earlier. Her son was angry. “And I thought, ‘God, this is a little much,’” she says. “Then you start reading, probably more than you should, and you find out that there are only 900 cases [of this kind of cancer] diagnosed each year. And you start thinking, ‘Why my child?’”

Darlene and Amber are among an increasing number of parents asking, “Why?” According to the American Cancer Society, cancer is now the second leading cause of death for U.S. children. The most common cancers in children, according to the latest ACS study are leukemia, brain and other nervous system cancers, soft tissue sarcomas, non-Hodgkin’s lymphoma and renal tumors. The National Cancer Institute, meanwhile, reports an overall increase in the incidence of children diagnosed with all forms of invasive cancer over the past 20 years; from 11.4 cases per 100,000 to 15.2 per 100,000. The reported hike in childhood cancer cases may be due, in part, to better screening and diagnosis. And the ACS report reveals that the survival rate for most childhood cancers has risen dramatically in the past 25 years.

Overall, five-year relative survival rates for children with cancer rose from just 58 percent in 1977 to nearly 80 percent in 2002, a reason for hope, the ACS study points out. Hope was about all kade Kaba had in August 2006, shortly after her daughter, 12-year-old Assta, showed her mother a painful bump on her left leg. She took the girl to the emergency room and waited. A transplant to New York City from the West African nation of Guinea, where few have even heard of cancer, Kade, a student nurse, got the awful news a short time later. Assta had osteosarcoma, which had metastasized to her right tibia and etched a malignant shadow on her right lung. Because of the cancer’s progress, doctors pegged the chances for survival at less than 25 percent.

“You don’t know why,” Kade says. “You’ve done everything right, taken your child to regular checkups and watched over her. When you have a healthy kid, you never expect this.” Despite the devastating news, Kade forged ahead with plans to move from New York to Naples and start a new life for Assta, her eight-year-old son, Lounceny, six-year-old daughter, Sire, and herself. The recently divorced single mother knew leaving a network of family and friends would be difficult. But Kade concedes she wasn’t receiving the emotional assistance she needed from her own mother, who believes cancer is the result of superstition. As Kade explains, her mother believes that someone has stricken her loved ones because, “cancer is not something that just happens.”

“My mother was adding to [the stress] instead of helping me through it,” says Kade. Her mother insisted that only prayers, petitions for blessings from their mosque’s imam (priest), and money sent back to Guinea for sacrificial offerings could save Assta. “She actually believed that treatment was unnecessary,” Kade says. Ten days after Assta’s diagnosis, the Kaba family moved to Naples. On Aug. 21, Assta received her first chemotherapy treatment at Jackson Memorial Hospital in Miami, which the New York hospital had recommended. Using a borrowed car to drive across Alligator Alley every day and trusting in the kindness of her new neighbors to provide after-school care for Lounceny and Sire, Kade knew the commute wouldn’t work. She pleaded with the medical staff to help her find treatment closer to Naples.

Dr. Emad Salman provides just such treatment. Salman heads the Pediatric Hematology/Oncology Center at the Children’s Hospital of Southwest Florida in Fort Myers. Founded in 1997, the program is one of only nine state-certified children’s medical service centers. With its strong commitment to delivering advanced therapies and world-class specialists in a local facility, it has also become the epicenter of the lives and hopes of families like the Baginskis, the Grossmans and the Kabas. “We provide state-of-the-art technology, even though we’re a mid-sized facility. But we have big-sized needs,” Salman says.

Indeed, Salman’s facility is bursting at the seams. Like the schools and roads in Southwest Florida, healthcare is playing catch-up to meet the area’s extraordinary growth. Laura Ortiz, the hospital’s nursing director, says the biggest challenge is finding enough beds for young patients. The center now boasts child-friendly hematology/oncology inpatient and outpatient centers, child-life programs and the Yawkey Children’s Counseling Center.

Those offerings are a godsend to Lee and Collier county families dealing with childhood cancer, especially the 60 percent who, like the Kabas, have few financial resources and little or no insurance. “We take care of families who have absolutely nothing. Some of them come to us with vegetables for payment,” says Dr. Kim Shimoda, psychologist and director of the Yawkey Center. “They can’t give money, but they’re so appreciative and want to give something back.”

A referral to Salman at the Children’s Hospital brought some semblance of normalcy back to Kade’s and Assta’s lives. Thanks to the proximity of the facility, Kade can spend weekdays at the hospital with Assta after her other two children board the 7:30 a.m. bus to Big Cypress Elementary, drive back through the thick snarl of I-75 traffic to meet her children’s afternoon bus, and then return to the hospital with Sire and Lounceny for some evening family time.

On the second floor overlooking the hospital’s atrium, there’s a primary-colored jungle gym and playground, where Kade’s two younger children chase off energy banked during the car ride from Naples. Then they go up two floors to visit with Assta, hospitalized four to five days a week to receive chemotherapy. After a quick hello to their sister, Sire and Lounceny run across the hall to plunder the large playroom. Assta shows her mother the spelling test that she scored a 100 on.

On a night when Assta is released to go home, a joke-cracking nurse in athletic shoes and pink, poodle-splashed scrubs whisks in to disconnect the elaborate network of tubes from Assta’s tall, slender frame. A navy blue scarf wrapped regally around her head accentuates her angular face. Jeans, blue and white fuzzy socks and the SpongeBob T-shirt she wears contrast the stark elegance in her face and her long limbs. She’s deeply reserved, even around her favorite nurse, and speaks only in shy whispers. She hopes to eat chicken or, specifically, hot wings, her favorites, when she gets home.

Several months after the Nov-ember 2006 surgery to replace Assta’s left femur with a donor bone and after more than 30 rounds of chemotherapy, this is a snapshot of what normal now looks like in Kade’s family—and it seems to be working so far. Kade is profoundly grateful for the kindness people both in and out of the hospital have shown her family. “My neighbors always offer to help and to be there after school for the kids if I am running late, or to bring dinner over. And the nurses here make it easier to leave Assta at night because she has more of a bond with them than she did at the Miami hospital.” She also credits the financial assistance of a family friend, her children’s teachers, charitable gestures from community businesses, and her trust in Salman’s care as additional reasons her family is adapting so beautifully to their new life.