Nine-month-old Lucas Howard got the flu in the spring of 2002. It wasn't cause for alarm until Lucas went four weeks without improvement and lost 4 pounds. To be safe, his pediatrician suggested precautionary testing.
"It took just one test," says Scott Howard, Lucas' father. "His first scan showed an abnormal brain mass, and Lucas was immediately scheduled for surgery."
Portland's Maine Medical Center diagnosed the tumor as carcinoma of the choroid plexus, which produces the cerebrospinal fluid (CSF) that surrounds the brain and spinal cord.
Choroid plexus tumors are rare, accounting for just 3 percent of all pediatric brain tumors. They appear more often in children less than 1 year old, and become life-threatening when they prevent CSF from circulating the central nervous system or by invading the normal brain. Most are benign, so Lucas's malignant form is even less common, representing only 10 to 20 percent of choroid tumors.
Maine Medical could have continued treatment, but opted to refer Lucas to the care team at Dana-Farber/Children's Hospital Cancer Care (DF/CHCC) for special treatment for this rare disease. DF/CHCC was the best choice because its team of pediatric specialists was easily accessible and experienced, having treated the most pediatric choroid plexus carcinoma patients in New England.
At DF/CHCC, Mark Kieran, MD, director of Medical Neuro-oncology assumed Lucas's care. "Maine Medical did a tremendous job diagnosing the tumor and initiating treatment," says Dr. Kieran. "It was crucial they sent Lucas to us early, which let us begin immediate, aggressive therapy."
Since 1947, Dana-Farber Cancer Institute and Children's Hospital Boston have partnered to care for children and adolescents with cancer through DF/CHCC. Its team of pediatric specialists, including neurologists, neuro-surgeons, neuro-oncologists, and an advanced team of pediatric neuro-oncology nurses, is exclusively trained to care for young cancer patients and dedicated to developing new childhood brain tumor treatments.
Receiving treatment at a pediatric institution is essential, especially for brain tumor care. Pediatric neurosurgeons, neurologists, neuropathologists and neuro-oncologists can diagnose tumors, like choroid plexus carcinoma, rarely seen by their adult colleagues.
"For most pediatric cancers, parents should remain positive," says Dr. Kieran. "Unlike elderly adults, the intent is to cure children, not to buy time."
Scott and his wife, Mary, acknowledged this difference. "The staff in Boston inspired confidence that we could beat this cancer," says Scott. "They focused on cancer's unpredictability and how each child's response to therapy differs instead of odds."
Lucas's treatment at DF/CHCC involved two more surgeries, performed by neurosurgeon Liliana Goumnerova, MD, each followed by chemotherapy. "Surgery removed the tumor mass but didn't prevent its return," explains Dr. Kieran. "What ultimately killed the tumor was a novel drug combination employed at the DFCI."
Lucas last received chemotherapy in the spring of 2003, and his scans have been clear ever since. "Lucas fought back from each treatment; you could tell he really wanted to get better," says Mary. "He wasn't giving up, so neither could we."
The Howards continue to frequently visit Lucas's care team at DF/CHCC's Pediatric Brain Tumor Clinic, where a multidisciplinary team is available to answer all of their questions in a single visit. Because Lucas has shown no signs of relapse since his treatment ended, he will soon transition to the Stop and Shop Family Pediatric Neuro-Oncology Outcomes Clinic.
At the Outcomes Clinic the focus shifts to addressing survivorship issues, not the acute effects of undergoing chemotherapy. Lucas will continue to visit Dr. Kieran and Pediatric Oncology nurse practioner Mary Ann Zimmerman, NP, but he will also begin seeing additional specialists who will work together to preserve and maximize his quality of life as a cancer survivor, including audiologists, ophthalmologists, social workers, neuropsychologists and endocrinologists.
This collaborative care model, a key feature of the DF/CHCC program, extends throughout New England. "After each visit in the long-term follow-up clinic, we send a report to Maine Medical so all of Lucas' doctors are kept up to date," says Dr. Kieran. He also sends one to Scott and Mary.
"Cancer is a complex condition that can leave lasting challenges, so it's very important we're all on the same page," says Dr. Kieran. Though Lucas is lucky, with so many people looking out for him, he's sure to shine.