Photos by Chris Long
Kai Dimino is a survivor. At age 5 he began suffering seizures. Soon doctors diagnosed him with oligodendroglioma – a rare form of brain cancer that constitutes only about 4 percent of all childhood brain cancers – and surgically removed most of the walnut-sized tumor that developed in the left temporal lobe. After 70 weeks of chemotherapy to shrink the remaining mass, the tumor began growing back three months later. Kai then endured six more weeks of radiation – and beat the disease for good.
While cancer remains the number one cause of disease-related death in children, cancer therapies have dramatically improved over the past three decades. With the help of chemotherapy, radiation, surgery and improved supportive care, more and more people like Kai, now 19, are surviving childhood cancer. Today an estimated 80 percent of children treated for cancer will become long-term survivors, meaning they are cancer-free five or more years. This is a marked improvement compared to 50 years ago when only a fraction of children overcame the disease.
But the very same treatments that cure cancer patients put them at risk for long-term health problems. Powerful but toxic childhood cancer treatments such as chemotherapy and radiation may have a lasting impact on a child’s developing brain, eyes, ears, lungs, heart, liver, gastrointestinal tract, kidneys, bladder, skeletal, reproductive and endocrine systems. About two-thirds of survivors will suffer at least one late effect, many of whom require ongoing medical support, and about one-third will experience a serious or life-threatening late effect.
The Late Effects/Survivorship Program at Children’s Hospital’s Craycroft Cancer Center helps these patients – including Kai – increase their chances for a healthier future. The program provides a comprehensive evaluation of the cancer survivor’s health and academic and social development, as well as patient education about their diagnosis, treatment, potential late effects and how to maintain good health.
Only a handful of such programs exist in the state. Children’s program is the only one between Los Angeles and the Bay Area. It is open to any childhood cancer survivor who has ended treatment for at least three to five years, whether treated at Children’s or another facility.
“It’s not just enough to survive cancer as a child,” said Dr. John Gates, a hematologist/oncologist who heads Children’s Late Effects/Survivorship Program. “We want to help them have the best quality of life after cancer.”
Significance of Late Effects
Although known to be an issue facing survivors for many years, the significance of late effects was brought to the forefront in 2006 when results of a Childhood Cancer Survivor Study were published in the “New England Journal of Medicine.” The study – a multi-institutional patient group composed of long-term cancer survivors diagnosed with a pediatric malignancy between 1970 and 1986 – found that nearly 75 percent of pediatric cancer survivors will develop a chronic health issue within 30 years of diagnosis. About 42 percent will experience severe, life-threatening, disabling or fatal conditions, such as heart attacks and second cancers. In fact, only about one in three survivors remain healthy.
In addition to physical late effects, a host of psychosocial issues may emerge in survivors of childhood cancer. These include cognitive impairment, especially if a child received radiation to the brain at a young age, and long-term educational, behavioral, social and vocational problems.
Health complications are usually driven by the type of treatment the child received rather than the type of cancer. Children who had similar therapies will be at risk for similar problems later in life regardless of their diagnosis. In addition, childhood cancer is different than adult cancer largely due to differences in age and development. “Radiation performed on an adult brain, for example, is less toxic than on a 3-year-old’s brain that is still developing connections and processes,” said Dr. Gates.
In the United States, cancer is diagnosed in more than 12,500 children and young adults under 20 years old each year. About 270,000 childhood cancer survivors live in the U.S. – a number that is rapidly growing.
Children’s Hospital’s Late Effects/Survivorship Program addresses the many needs of this expanding population. Performing a thorough, 2 ½ hour evaluation, program specialists review the childhood cancer survivor’s medical charts, treatments/dosages, areas in the body that the treatments targeted, imaging history and medications. They give the survivor a physical examination, process lab results, and assess for any learning problems, vocational limitations or socialization difficulties. To make the transition to adult healthcare a little easier, they also help teen survivors as needed to find the appropriate primary care physician and/or specialists for their condition.
Program participants are encouraged to complete the evaluation once a year. “We tailor the program to each individual survivor,” said Jocelyn Alsdorf, program coordinator and a nurse, noting that participants interact with various medical professionals, including hematologists/oncologists, other pediatric subspecialists, nurses, dieticians, social workers and more. “We help them with what to expect and how they can maintain or improve their health for the rest of their lives.”
Based on survivors’ exposure to childhood cancer treatments, the Children’s Oncology Group (COG) – a cooperative research collaborative of about 235 medical institutions that works to identify cancer causes and pioneer new treatments and cures – provides a risk panel that pinpoints late effects to which survivors may be prone. A member of COG, Children’s uses this information to educate cancer survivors about these risks and how to minimize their effects now and in the future.
A nearly $24,000 grant from the St. Baldrick’s Foundation helped Children’s fund Alsdorf’s position to coordinate this care and contact survivors for follow-up clinical trials that will evaluate long-term health effects of childhood cancer treatments. “The beneficial feedback will improve treatments for all children,” said Alsdorf.
Although Kai overcame his brain cancer as a young boy, he didn’t notice ill effects from the treatments until his junior year in high school. “That was the most challenging time for me,” recalled Kai during a recent visit to the Craycroft Cancer Center. “I realized that I have difficulty with abstract reasoning and concepts, which I know now has to do with that part of my brain that received radiation.”
Now balancing a full load of college classes with a part-time job, athletic interests and a social life, Kai is intent on keeping healthy and strong. While he obtained treatment for his brain tumor years ago at another hospital before he and his family moved to the Central Valley, the Fresno resident receives follow-up care at Children’s and participates in the Late Effects/Survivorship Program.
Kai’s program evaluation included various assessments, from checking his hearing, eyesight, hormone levels and kidney function, to discussing how to improve his diet, exercise and sleep habits for optimum health. Alsdorf even provides participants information on how they can maximize their education, such as confirming whether they qualify by law to have extended time to take academic tests, and identifying scholarships available specifically for cancer survivors.
“Children’s survivorship program is very comprehensive,” said Kai, who completed his first evaluation earlier this year. “I received a customized packet with information just pertaining to me. Everyone is so friendly and helpful – they want us to succeed.”
Kai’s mother, Joan Dimino, a nurse at the Craycroft Cancer Center, is thankful that her son is involved in the program. “After beating cancer, there’s always that fear that the cancer is going to come back,” she said. “The packet for each survivor helps them know what they can do to minimize that possibility and signs to look for. Education is freedom.”
Breaking the Barrier
An excellent student who made the dean’s list, Kai is pursuing a double major in psychology and theater. Naturally interested in introspective analysis and human behavior, he also enjoys expressing his creativity through the theater.
With the support of Children’s Hospital’s Late Effects/Survivorship Program, and his family and friends, Kai has never felt better about his life or the future. “Some people thought I wouldn’t be able to function very well when I got older because of the effects of the cancer treatment on my brain,” said Kai. “But I was determined to break that barrier, to prove them wrong. I work extra hard to achieve excellence and improve my performance.”
For more information on Children’s Hospital’s Late Effects/Survivorship Program or how to support it, contact the Craycroft Cancer Center at (559) 353-5480 or the Hospital’s Foundation at (559) 353-7100.