At the time, the Marshalls thought little of the oddity. "I knew babies' eyes change a lot during the first year," says Nanci, who helps administer farm programs for the U.S. Department of Agriculture in the nearby town of Anthony. But later that month, when she took Madison along with her to pick out a new pair of glasses, she had the optometrist take a quick look at her baby's eyes. "Is this really something I should worry about?" she asked. The doctor, thinking that Madison might be showing early signs of a congenital cataract, suggested that Nanci make an appointment with a pediatric ophthalmologist in Wichita, 85 miles away.
There, on March 30, after reviewing the results of Madison's CT scan, Dr. Joseph Beck gave the Marshalls the news. Their only child had what he termed a bilateral retinoblastoma. Although Nanci could tell from his tone that the condition was serious, she says, his description was tactfully vague. She finally found the courage to ask: "Is this cancer?" It was—in both eyes. "We were shell-shocked," says Mike. And for good reason. As the Marshalls would learn, retinoblastoma is a fast-growing cancer of the retina, which occurs exclusively in young children and strikes as many as 300 of them each year in the U.S. If left undiagnosed and untreated, it eventually kills its victims. But even for those who survive with proper medical care, there is another danger: the loss of one or, in rare cases, both eyes. "We were terrified at the thought that we might lose our child," says Nanci, "but just as frightened at the prospect of her winding up blind."
Fortunately, the team of doctors also had hopeful news. An innovative treatment was available that could save Madison's sight as well as her life. For decades, retinoblastoma was primarily treated with radiation, a procedure that was reevaluated in the late 1980s when it was shown to increase the likelihood of secondary cancers. In the 1990s, doctors began to use chemotherapy as the primary form of treatment, and augmented it with cryotherapy and lasers. Within the last few years, thanks to these combined advances, as well as new, pinpoint-accuracy radiation, doctors have markedly improved the chances of preserving a young patient's sight. Today, because of their improved medical arsenal, "we probably save two out of three eyes with retinoblastoma," says Dr. Barrett Haik, 50, director of the eye clinic at St. Jude Children's Research Hospital in Memphis, one of the nation's leading facilities for treatment of the disease.
On Monday, April 2, after being referred by Dr. Beck, the Marshalls packed suitcases and duffel bags with clothes, diapers and baby bottles and took the 70-minute flight to Memphis. Two days later at St. Jude, Madison underwent a two-hour eye examination, the first of several tests to determine the extent of her tumors. Dressed in a white cotton hospital gown, "she looked like a little angel," says Nanci, who carried Madison into the operating room. To prevent her from squirming and possibly damaging her eye during the exam, she was given anesthesia. Even so, the procedure was "terrifying, for her and for me," says Nanci. "I had never seen her put under before, and I could see she was scared when they put the mask over her. She didn't understand what was going on. Then she was out. And I went outside and bawled."
Two days later, at 6:30 a.m., in a brightly lit room furnished with lots of stuffed animals, Madison, again anesthetized, had an MRI to determine if the cancer had spread to her optic nerve or her brain. "She had that look of terror again," says Nanci. "I can't blame her. She doesn't like to be held down." Nurses gently cradled her until she fell asleep, then slipped her tiny body into the MRI box. At the same time, doctors tested for cancer elsewhere in her body by extracting fluid from her spine and marrow from her hip bone. When all the scanning and probing was done, the diagnosis was clear. Madison's right eye contained a relatively small tumor; her left, a moderate-size one, as well as a detached retina and what doctors call vitreous seedings—tiny pieces that break off the main tumor and can take root elsewhere. Explains Haik's partner, Dr. Matthew Wilson, 37: "They're like dandelions blowing in the wind."
If retinoblastoma is detected early enough, it can be treated relatively simply either with laser or cryotherapy, in which a probe cooled to -75° with nitrous oxide is placed onto the white of the eye, freezing tumor cells. But by the time most children are brought in for diagnosis—that is, when they show the so-called white reflex that Nanci noticed in Madison—"you already have a detectable tumor in the eye," says Haik. "Then you are forced to use more aggressive therapies."
A week after Madison arrived, her kidneys were checked to make sure that they were functioning well enough to cleanse her body of chemotherapy toxins. Then, after she underwent another chest X ray and CT scan, the Marshalls met with St. Jude pediatric oncologist Dr. Carlos Rodriguez-Galindo, 39, who prescribed a comprehensive course of chemotherapy: seven rounds to be administered intravenously at three-week intervals. A pediatric surgeon had already inserted a semipermanent intravenous line into Madison's chest, and a nurse showed Nanci how to change her dressing and flush the line. "It was upsetting to see your baby with a cord hanging out of her chest," says Nanci. "But it was better than the alternative—her getting stuck with a needle every time." At 5:30 p.m. on April 10, in a first-floor outpatient treatment room, the chemotherapy drugs Vincristine and Carboplatin were inserted in Madison's IV and, over the next four hours, dripped slowly into her veins.
Two days after her first treatment, and 10 days after arriving at St. Jude, Madison and her parents flew back home. At first she was fine. But soon the normally cheerful baby couldn't sleep, and began to fuss and spit up her food. Within days "she lost 3 pounds—from 18½ back to 15," says Mike. Less than a week later at a Wichita hospital, she was given a blood transfusion to replenish her blood cells and platelets. A few days after that, as Nanci and Madison waited for a checkup, Nanci was combing her daughter's thick, dark hair when it began to fall out in chunks. "I about cried as I was sitting there," says Nanci, who saved the strands as a keepsake along with the curls from Madison's very first haircut.
Four and a half months into the treatment came a sign that the Marshalls' prayers were being answered. In a darkened operating room at St. Jude, doctors sedated Madison, took pictures of her eye with a special camera and projected them onto two monitors. There the digital images were compared with those from her early visits and showed that Madison's tumors were beginning to recede. "See all those dots?" Dr. Haik asked a roomful of specialists who were also involved in treating Madison. "Those spots are where the tumor used to be. You can see a deep demarcation line, like a high-water mark."
Over nearly six months of chemotherapy, Madison returned to St. Jude every few weeks for her two days of treatment. Nurses administered an antihistamine to help her sleep during chemo, and if she grew cranky afterward, her parents soothed her with a favorite green teething ring. Some days she grew listless after receiving her drugs, but at other times she would play with toys and try to take her first steps in the family's Memphis hotel room—and chew whatever she could put in her mouth. "She lost her hair and got her teeth at the same time," says Mike. Despite her progress on chemo, doctors also gave her three cryotherapy procedures and four treatments in which a diode laser is used to blast the tumor. "In order to completely get rid of an advanced cancer like this one," says Rodriguez-Galindo, "you have to use a multidisciplinary approach."
While Madison was undergoing her ordeal, friends in the Marshalls' farming community were helping them pay their share of Madison's treatment. Though St. Jude routinely covers medical expenses not paid for by insurance, along with some transportation and housing costs (the tab so far: $75,000), the Marshalls still faced thousands of dollars in out-of-pocket expenses for travel and medical supplies. Nanci's friend Cari Jo Patterson, 32, an equipment operator for the Kansas state department of transportation, spearheaded a local effort that has raised nearly $10,000 for Madison through a special golf tournament and an auction.
Patterson also put pickle jars in local stores with the little girl's picture on one side and what she calls a "not very good" poem on the other: "Let's help Madison/ She is not yet one/ She is fighting cancer/ And has no funds." Yet another auction netted $2,700, drawing bids of $195 for a coconut cream pie and $170 for a lemon one. Neighbors staged a $50-per-couple triathlon of bowling, shuffleboard and pool. "We have a tremendously supportive community," says Nanci with a smile.
Finally, on Aug. 28, Madison finished her last chemo treatment, but it made her violently ill. She was rushed to the hospital three times, once with a 104.5° fever, and on Sept. 2 she received her second blood transfusion. Two weeks later an eye exam revealed the good news: In her right eye the original tumor had all but dissolved. In the left, though doctors found two new seed tumors and quickly destroyed them with cryotherapy and lasers, the main tumor was already dead. "We were blessed to be placed in the hands of these doctors at St. Jude," says Nanci. "We had angel wings guiding us where we needed to go."
Because Madison is still too young to talk, it's impossible to know what she can or cannot see. But doctors are hopeful about her ultimate prognosis. Wilson believes that there is an 85 percent chance of saving Madison's right eye with excellent vision and a 70 percent chance of saving her left, in which she'll have enough vision—mostly peripheral—to read part of a standard eye-exam chart. That may not be perfect, but "it'll be a help in later years when she learns to drive," says Wilson. "We fight for all the vision we can save."
In the event that her tumors do begin to spread or recur, doctors have other possible remedies. They can attach small radioactive implants the size of rice grains near the tumor on the outside of the eye. These implants have fewer side effects than traditional radiation, says Rodriguez-Galindo, but a refined version of the old technique can be used if the implants fail.
More worrisome is the knowledge that the same genetic defect that led to Madison's disease may someday also cause her to develop other forms of cancer, as it does in some retinoblastoma patients. "The retinoblastoma gene works not only in the eye but everywhere in the body," says Wilson. What that means, says Haik, "is that we have a commitment to follow these children closely for a lifetime."
Still, the Marshalls believe they have much to be grateful for. They take comfort not only from Madison's medical progress but also from doctors' predictions that she will survive her ordeal without any longterm psychological effects. "Children react the way their parents do," says Wilson. "If you treat a child as handicapped, the child will be handicapped. But Madison's parents are very stable individuals. Her potential is boundless."
In fact, chances are that when she is older she will have little memory of the remarkable medical effort that went into preserving her sight. For now, of course, no one knows exactly what Madison is thinking, since her conversation is limited mainly to the words "Mommy," "Daddy" and "Amen."
But sometimes, as on one recent morning, Madison is able to give at least some indication of how she's faring. When her mother went into her room to wake her, the little girl sat up in bed and made a pronouncement of sorts. "Happy," she said. And then, as if to underscore the point, "Happy. Happy."
Giovanna Breu in Memphis