Tackle football practice began this month for Josh Pita. The 8-year-old loves the sport. So much that when he learned in November 2010 he had cancer, he lamented “I can’t play football,” said his mom Laura Pita.
That complaint came after his first question — “Am I going to die?”
The answer was no.
After his diagnosis, Josh had a month of intense chemotherapy and then was in remission from his cancer, acute lymphoblastic leukemia, or ALL, in which the bone marrow overproduces malignant white blood cells.
His experience reflects how new treatments, more research and greater collaboration among doctors have dramatically increased the survival rates for children diagnosed with cancer. In the 1970s, fewer than half of children with cancer would live to see five more years. Now, about 80 percent of children with cancer survive five years or more, depending on the type of cancer, according to the American Cancer Society.
“It’s not easy work, but it is not a mystery,” said Dr. Brian Cauff, the associate medical director of pediatric hematology oncology at Joe DiMaggio Children’s Hospital in Hollywood. “It’s through cooperative groups, enrolling children in clinical trials and learning more about how to treat their cancer,” added Cauff, who treated Josh.
Through collaborative groups, like the Children’s Oncology Group with more than 200 members, doctors have begun to share information and track the effectiveness of new treatments. Cancer in children is rare, making up less than 1 percent of all cancers diagnosed each year, according to the American Cancer Society.
The rarity makes it harder for doctors to conduct studies on their own, especially studies for the even smaller category of hard-to-beat cancers, explained Dr. John Goldberg. He is the director of the pediatric oncology early phase clinical trials program at the University of Miami Sylvester Comprehensive Cancer Center and Holtz Children’s Hospital at UM/Jackson. It is the only program in South Florida that enrolls children with cancer in the earliest phase of new treatments. There are other hospitals that participate in experimental treatments in later phases.
“For a doctor like me, here in South Florida, and I was going to study all kids with ALL and decide what to do, it would be really hard to get 100 patients in a year and see what was working,” Goldberg said. “But if I join with all pediatric oncologists in the country and agree to do a clinical trial as a group we have more statistical power to be able to tell if our treatment is making a difference.”
Leukemia is one of the most common cancers among children. And ALL — the kind of leukemia Josh had — is the most common type of leukemia. About 2,500 kids a year are diagnosed with ALL, Goldberg said. Yet, through groups like the Children’s Oncology Group, doctors have been able to home in on the best treatment.
The protocol Josh followed was laid out by the group. In all, he will complete three and half years of chemotherapy. The first six months are most intense, followed by less intense monthly chemo treatments and oral medicine at night. Because of the collaboration, doctors have been able to determine when it’s most effective and safer to have less treatment. For example, girls with ALL can have just two and half years of chemotherapy, Cauff said. He said research has shown that it’s not helpful for boys to shorten the treatment, but it’s not clear why.
At Joe DiMaggio, which opened a new 24-bed unit for pediatric oncology last year, there is a clinical trial with the Children’s Oncology Group that is “rolling back or decreasing therapy for a very small and well defined group of low-risk leukemia patients,” Cauff said. “Less therapy will hopefully mean the same cure and less toxicity and less long-term side effects.”
Doctors hope the same effort will continue to make advancements with the types of cancer that don’t respond to traditional treatment like chemotherapy, radiation and surgery.
Davie Goldson, 9, recently completed a trial in Miami, in which she took a diabetes medicine to combat a leukemia relapse as she prepares for a bone marrow transplant. Her mother, Suzette Holness, said she recognized the drug, metformin, because her own mother takes it for high blood sugar.
Before, Davie had 2 1/2 years of chemotherapy. Her fraternal twin, Skye, would accompany her to the hospital when she could. If Davie missed class, Skye would bring homework home. In April, the same month Davie was to finish chemo, she found a lump in her lymph node. “At first I was upset but then I thought it could have gone undetected. We would have have had a false sense of hope,” Holness said.
They decided to try a clinical trial, hoping for a better chance of avoiding relapse before the transplant. For the transplant, the twins’ mom has been advocating and urging family, friends and members of their Fort Lauderdale church to sign up at bone marrow drives. The family is waiting and hoping; the first search found no donors, the most recent, 20-30. “
These more experimental treatments try to apply the latest research or apply an existing drug in a new way.
“Just the fact that people are doing research and willing to offer something new to their child gives people hope,” Goldberg said. “I think it’s important to be realistic but you never want to close the door that their child may be cured or get the benefit of a treatment.”
One of Goldberg’s patients, Sam Stokes, travels from Orlando to Miami every two months for a clinical trial. Sam, 17, has alveolar soft part sarcoma. The very rare cancer shows up as a lump in the leg. His dad discovered it when he patted Sam congratulations for a good video game, his mom said. Traditional treatments don’t work with this cancer; people diagnosed usually survive five to 10 years. The family’s oncologist in Orlando suggested that Sam be enrolled in a clinical trial. For the last three years, Sam has been taking a medicine called Tivantinib every day. His tumor hasn’t grown. Before the treatment, his tumor was growing.
“It’s helped him lead more of teenage life,” said his mom, Cindy Stokes. He has a full head of hair, has a summer beard growing, likes to play basketball and video games and has had little side effects from his daily medicine. “We try to lead a normal life, but there is that roller coaster that you’re on.”
Nicole Reyes Haché, 16, traveled from the Dominican Republic to Holtz Children’s Hospital to try a new treatment with Goldberg. She’s taking a drug used for adult onset diabetes to combat the return of her acute lymphoblastic leukemia. She is in a clinical trial through the Sunshine Project, funded by the Pediatric Cancer Foundation in Tampa. Afterward, Nicole will need a bone marrow transplant. The fact the drug was already used by people — just newer for cancer — gave Nicole’s family some peace of mind.
“They assured us it wasn’t something from another world, the medicine,” said her mother Belkys Haché. “Thanks to God, they took very good care with her, a lot of check-ups.”
Nurses and other staff at Holtz take care to support the patient and their family. They recently started a parent advisory council. Two members are moms whose children have had cancer.
“Their job is to make sure the families make it through this as well as they can,” said Karen Strauss, director of patient care services at Holtz Children’s Hospital at University of Miami/Jackson Memorial Medical Center. That includes simple things like refrigerators in rooms and making sure parents and siblings have time to ask doctors and nurses questions as a family.
Said Susan Roberts, nurse educator for pediatric hermitage oncology at Holtz: “Studies have shown if families are more aware of what’s going on, they’re better able to interact with their children and make their child more relaxed and comfortable.”
Last September, a doctor from The University of Texas MD Anderson Children’s Cancer Hospital in Houston came to Miami Children’s Hospital, just outside Coral Gables. Together doctors from both hospitals performed a type of chemotherapy — hyperthermic intraperitoneal chemotherapy (HIPEC) or “heated chemotherapy” — on a child for the first time in South Florida.
The 8-year-old girl had a rare type of cancer in her abdomen. She was treated and then it came back about a year later. So her doctors tried the heated chemo. They opened up her tummy and gave her a chemo bath, putting the poison directly in contact with microscopic cancer cells. Traditionally, chemo is given through an IV or orally.
“Here we applied the chemotherapy to the cells themselves. You irrigate or bathe the abdominal cavity with the chemo. It’s a direct hit to the tumor,” said Dr. Cathy Burnweit, chief of pediatric surgery at Miami Children’s. She helped perform the surgery.
It’s an outside-the-box treatment that has been used more for adults.
Another advance in pediatric oncology has been tailoring treatments by distinguishing subcategories of tumors. Burnweit said doctors can now look at the DNA of some cancers to see if it’s more aggressive or less aggressive.
“We can tailor the therapy to the exact tumor the child has,” she said.
No matter what kind of cancer, or what kind of treatment a child has, a positive attitude and support from friends can go a long way.
“Part of the battle is in your attitude,” said Cauff. “Josh has had a great attitude. That has allowed him to keep going at a faster rate than some.”
His surgeon found the perfect place to install the port where he will continue to receive chemo: near his ribs, where his football pads will protect it during football practice. The return to football marks a major milestone for Josh and his family.
“It means he’s a normal kid. That’s really what it means, life is normal because it was abnormal for a year,” said his mom.