Pediatric nurse practitioner champions kids’ cancer clinic
GREAT clinic address late effects
When Shannon and Gary Whisenant were absorbing news of their child’s grim prognosis, they didn’t consider the potential long-term side effects of her cancer treatment.
The couple’s 5-year-old Evan was gravely ill. She would require an extremely tough regimen involving numerous rounds of intensive chemotherapy, total body radiation with extra doses to the brain, more chemotherapy and a bone marrow transplant. Even with a transplant, the odds of Evan surviving five years with hypodiploid acute lymphoblastic leukemia were just one in two.
“We said, ‘just fix her,’ ” says Shannon Whisenant, Evan’s mother. “And then we powered through it.”
Evan bravely survived the treatments. Now 10, the fourth grader appears and behaves like any girl her age. But Evan is not a normally developing child. She copes with multiple late effects, including melanoma, vision problems, diminished lung capacity, disrupted hormone production and other complications – many of which will be with her for the rest of her life.
Fortunately, the family has had ongoing support and care from Kathryn Wells, a pediatric nurse practitioner at the UC Davis Comprehensive Cancer Center. Wells directs a clinic devoted to caring for the late effects of cancer treatment called GREAT, short for Getting Regular Evaluations After Treatment. The GREAT clinic recently got a $75,000 operational boost from Hyundai’s Hope on Wheels.
Children’s cancer treatment more aggressive
"When you are going through it, the worst thing would be to feel abandoned — to not know everything. Kay Wells guides me step-by-step through everything Evan needs."
— Shannon Whisenant, Evan's mother
Wells explains that many pediatric cancer patients suffer late effects because childhood malignancies are treated aggressively.
“They need very intensive treatment to be cured, and they can tolerate the treatment, even more than many adults can,” she says. “And because we are treating them when they are going through growth and development, we need to assess what kind of damage that treatment may or may not have caused.”
The childhood cancer survival rate has surged to 80 percent over the past several decades, but more than 70 percent of the 350,000 survivors will develop adverse health effects, and up to 40 percent of those effects will be severe or life threatening, according to a 2006 study in the New England Journal of Medicine.
Evan’s treatments left her with osteoporosis; she takes vitamin D and drinks milk to maintain and, hopefully, rebuild bone density. She has had three melanomas, skin cancers that must be caught and treated quickly. Radiation to her head caused cognitive delays, making reading more difficult. Her cataracts eventually will require eye surgery. Because of damage to her ovaries, Evan will likely not be able to bear children, and will require hormone therapy to promote puberty.
Fortunately, early effects that limited her kidney and liver function have improved, and although her lung function is diminished, she still enjoys swimming in her backyard pool and playing in the park in her Antelope neighborhood.
The ailments are challenging, but not insurmountable. “It’s who we are,” says Shannon Whisenant. “It’s who she is. But we are blessed. She is here.”
Internet tool helpful
Wells has logged everything in Evan’s “Passport for Care,” an Internet-based tool developed by a pediatrics professor at Texas Children’s Cancer Center that facilitates the comprehensive follow-up medical care for child and young adult cancer survivors.
“I can input the therapy the patient has received and, based on the (treatment) exposures the patient has had, it lists the different sorts of health problems he or she may be at risk for,” says Wells. “It guides us in questions we should ask, physical findings we should look for and diagnostic tests we should consider.”
At Evan’s most recent GREAT clinic visit, for example, Wells checked to ensure Evan got follow-up with endocrinology, dermatology and ophthalmology, and that her blood and bone density tests were up to date. She discussed Evan’s class work and diet, tested her balance and listened to her heart. She provided Evan’s mother with a printed summary of Evan’s treatment history and educational materials on each of the areas of concern.
“When you are going through it, the worst thing would be to feel abandoned — to not know everything,” Shannon Whisenant says. “Kay Wells guides me step-by-step through everything Evan needs. She makes sure we are OK.”