When Clayton Patton decided to take a prosthetic eye to kindergarten for show and tell last year, his mother knew her son was well on the way to accepting and understanding his disease.
But about four years earlier, when the boy was diagnosed with retinoblastoma, a malignant tumor of the eye, Marge and John Patton were just beginning the process of accepting and understanding what was happening to their then 17-month-old baby.
And they were taking on that task virtually alone, having moved to Houston just five months before. “I was raised in New Jersey,” Marge said. “John was raised in Indiana. We were just crazed that we had been through this.”
Geographically distanced from close friends and family, the couple’s adjustment to life with a newborn, their first child, was complicated by the sudden intrusion of this disease, a relatively rare condition that usually is diagnosed in children younger than 2 years. They felt isolated and frustrated.
It was this frustration that spurred Marge to form a support group for patients and their families, first in Texas and now in Deerfield, where they have lived since March 1992.
The Chicago Retinoblastoma Support Group held its initial meeting in July, with 28 adults and 22 children attending.
The group’s purpose is to put parents of children with retinoblastoma in touch with other parents whose children have been similarly diagnosed. The group also aims to put young patients in contact with their peers.
The need for such a group is evident, agree Chicago-area physicians and social workers, considering the traumatic effects that retinoblastoma often has on the families of patients who have the condition.
“It’s hard on the families, there’s no question about it,” said Dr. Mark Greenwald, a pediatric ophthalmologist at Children’s Memorial Hospital in Chicago. “These families have a significant burden of anxiety to bear. Many of these kids have an eye removed.”
Bob Brasier, his wife Chris and their 20-month-old daughter, Meagan, were at the first meeting. Meagan was diagnosed with the disease about a year ago.
“It’s such a rare thing that you never run into anybody who has it,” said Brasier, of Mt. Prospect. “It’s always good to talk to other parents who have been through it.”
Dr. Robert P. Schroeder, a retinal surgeon at Children’s Memorial, estimates the incidence of the disease at one in every 15,000 to 30,000 children.
Schroeder and Greenwald treat most retinoblastoma patients in the Chicago area. Greenwald estimates that he treats 5 to 10 new cases each year.
Because it’s so rare, it’s especially helpful, Brasier said, to have a way to meet with the few other parents struggling with the same circumstances and to compare notes about diagnosis, treatment and prognosis.
As disheartening as the diagnosis was, the Brasiers did find cause for optimism through discussion with the group. “Out of our support group, our daughter was the only one who could keep her eye,” Brasier said. But like many other retinoblastoma patients, Meagan may face surgery in the future to remove the cataracts caused by radiation treatments, he said.
Pam and Lincoln Shepherd of Algonquin said they are intrigued by Patton’s group and, though they couldn’t make it to the first meeting, plan to attend with their 9-year-old son, Graham, in the future. Graham, diagnosed with bilateral retinoblastoma, had one eye removed and retains limited vision in the remaining eye.
Among others who have expressed interest in the support group are an adult survivor of the disease and newly diagnosed children who are undergoing the most recently developed treatments for the disease. Though their backgrounds and their histories are divergent, they have in common a need to share and exchange information and emotions.
Marge Patton realized this when she put the group together. After she found a meeting place and arranged for everything from baby-sitters to refreshments, she enlisted the aid of two professional caregivers. She prevailed upon Lake Forest clinical social worker Linda Bliwas and Patsy Winicour, executive director of the Cancer Wellness Center in Skokie, to serve as volunteers.
Winicour, a cancer patient herself, said the group “isn’t a therapy group. It’s a self-help group.”
“There’s something so powerless about having a child that’s ill,” said Bliwas, who explained that in her role with the group she helps keep the meeting conversation on track.
John Patton wasn’t sure a support group was for him before Marge organized this one. “I was initially skeptical. I think the men generally have more trouble opening up than the women do.” But, he said, he found he was able to talk about his feelings in relation to his son’s problem.
The Pattons’ story began with the optimism typical of new parents. “He was very bright and very tall and very big,” Marge said of her son. It was no wonder that she and her husband reacted with annoyance when an acquaintance pointed out that there appeared to be something wrong with Clayton’s left eye.
Fear soon overshadowed parental pride when the couple noticed that his eye seemed to wander when he was tired, a symptom of a condition known as strabismus.
They consulted a specialist, who conducted a thorough exam, including a pupil dilation. “Right then and there they said he had a malignant tumor in his eye,” Marge said.
Clayton’s strabismus is the second most common symptom that alerts parents to the condition, said Schroeder, who specializes in the treatment of cancers of the eye.
“Usually they will see a whitish pupillary reflex (a white spot in the pupil). Many times parents will notice it when taking pictures,” Schroeder said.
The condition is due to a genetic mutation that is sometimes hereditary in nature, Greenwald said.
Some patients have tumors in only one eye; about a third of the patients have them in both eyes. Some run the risk of developing tumors in other parts of the body, and some are also at risk of passing the propensity for the disease to their offspring. All patients are checked periodically for recurrences of the disease, even into adulthood. Fortunately, the disease isn’t life-threatening, unless tumors would develop elsewhere in the body. In Clayton Patton’s case, a tumor was found only in his left eye, which eventually was removed.
But before doctors proceeded to that step, he underwent external beam radiation treatment, administered in the hospital under general anesthesia.
“The tumors are very radio-sensitive, so they respond very nicely to radiation” if detected when they are small, Schroeder said. In Clayton’s case, although the tumor was small initially, the treatment wasn’t effective.
Next, lasers were used with a radioactive plaque sutured to the eye and that doctors describe as a “localized method of delivering radiation.”
“He was radioactive. I wasn’t supposed to hold him,” said his mother, remembering this as a particularly trying doctor’s order that she wasn’t always able to follow.
Despite their hopes, Clayton wasn’t responding to treatment.
In August 1989, Marge said, doctors discovered signs of new tumor growth in Clayton’s eye. Surgery was scheduled immediately. Clayton’s left eye was removed, and he was later fitted with a prosthetic eye.
“The standard method of treatment has been removal of the eye,” Schroeder said. “It depends on how advanced the patient is at the time of diagnosis. Usually, when more than half the eye is involved with the tumor, the eye is removed.”
Between 60 and 70 percent of patients who are diagnosed with retinoblastoma eventually have surgery to remove the eye, Schroeder said.
When the Pattons began to recover from the trauma of Clayton’s surgery, Marge requested a list of retinoblastoma patients from the Houston ocularist who fitted Clayton’s prosthesis. It wasn’t long before a support group was formed.
The family moved to Deerfield in 1992, but because Marge was pregnant, it wasn’t until some months later that she asked Clayton’s Des Plaines ocularist, June Nichols, for a list of patients. Armed with 22 names and phone numbers, she said she received a warm reception. “All the people I contacted wanted to (join the support group),” she said. She made all the arrangements, including securing a meeting place.
“My husband and I are doing it solely on our own,” she said. With meetings held about once every two months, she said, “I’ve estimated it’ll cost me $1,500 per year, bare minimum.” She’s currently awaiting word on a grant requested from the Deerfield Lions Club and is seeking other funding.
But cost isn’t the main issue, Marge said. Helping people cope with the sudden, terrifying news that their child is afflicted with cancer is her overriding concern. And introducing retinoblastoma patients to their peers is just as crucial.
“I really like playing and things like that,” Clayton, 6, said of his experience at the support group meeting. “I usually play basketball.”
When asked how he deals with having a disease that distinguishes him from other children who don’t have it, he said, “Well, I feel sort of strong about it. When I’m in a new school, I don’t feel as comfortable.” He began 1st grade at Walden School in Deerfield this fall and, he said, gets more comfortable there as each day passes. “It’s good. I like it.”
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For information on the support group, phone 708-374-9518.
