Fighting for his life in isolation

(MCT) CHICAGO — At precisely the time 6-year-old Sammy most needed his parents, they were forced to keep their distance because his unique cancer treatment made him radioactive. Even his favorite blanket and stuffed animal were off-limits, lest they, too, become contaminated.

In Aptil, Sammy Nahorny became the first patient at Comer Children's Hospital to undergo high-dose radiation therapy for neuroblastoma, one of the deadliest pediatric cancers.

The treatment confined him to a room of less than 200 square feet, lined with 450,000 pounds of bricks that contain lead. Every inch — including the floor — was covered in paper or plastic, as well as any object Sammy touched, such as video games and the remote control. For five days, Sammy was mostly alone, waiting for his radioactivity levels to drop closer to normal.

"Not being able to snuggle him completely breaks my heart," said his mother, Erin Nahorny. "It's probably the worst feeling I have experienced. … He gives me these puppy dog eyes and just wants me to hold him."

Erin and Chris Nahorny interacted with their son primarily through a closed-circuit TV monitoring system and walkie-talkies. They helped care for Sammy and made brief visits, but they could not linger or comfort him the way they wanted. Only one parent at a time was allowed in the room, for a total of about 40 minutes a day between the two of them.

When his mother or father entered his room, she or he would don a disposable gown, gloves and shoe coverings and stand behind a large lead shield, covered with yellow tape usually associated with crime scenes.

Despite the hurdles, the Nahornys consider themselves "so fortunate" to be at Comer, one of about a dozen children's hospitals nationwide to offer the treatment and the only site in Illinois.

The family made the 10-hour trip from its home in Columbus, Neb., to the University of Chicago because surgery, chemotherapy and a stem-cell transplant have not slowed the primary tumor and growth of neuroblastoma cancer cells, which have spread to Sammy's bones and bone marrow, physicians said.

And so this is the couple's "Hail Mary." They have put their lives on hold — he's in manufacturing, and she's a social worker — because they have run out of options. The radiation therapy has been shown to have a 30 to 40 percent response rate for patients.

"You can read all the statistics you want," his father said. "But all you really care about is how it affects just one."

MIBG, short for metaiodobenzylguanidine, is a compound that can be combined with radioactive iodine and delivered intravenously, where it has been effective destroying neuroblastoma cells while sparing surrounding healthy tissue, said Dr. Susan Cohn, a pediatric oncologist at Comer and one of the nation's leading experts on the disease.

While the infusion process takes only about 90 minutes, it imposes a daunting burden on the family, typically requiring a three- to five-day hospital stay. Young patients are mostly confined to their beds, alone in their rooms while waiting for their radioactivity to diminish. Any beloved toy that accompanies them would need to be quarantined for up to six months after treatment or thrown away.

The family decided to keep Sammy's favorite stuffed frog at home. "We bought him another frog," his mother said, "but he wouldn't have any part of it."

The Nahornys had to do more than keep their son occupied under trying circumstances. Anyone who entered the unit was exposed to gamma radiation emitted from Sammy's body — from his urine, saliva, even perspiration.

For medical staff, radiation exposure is an ongoing occupational concern. So the parents must sign a contract and agree to be trained and take on many caregiving duties, such as dispensing medications and emptying his catheter into a lead-lined box.

The Nahornys both wore a gadget — called a dosimeter — to monitor their exposure, which they dutifully logged into a notebook every time they left. How meticulously they followed the rules would greatly affect the health risks to them and others. One lapse — for example, walking out of Sammy's room without first removing the paper booties — could contaminate an entire hospital corridor.

Given all the upheaval, the treatment is not for everybody, Cohn said. "To be eligible, a child must not just have a tumor that can take up MIBG but also be in the room alone safely."

The pediatric oncologist has devoted her career to attacking neuroblastoma, and offering the therapy has been her dream since arriving at Comer seven years ago. When Sammy became the inaugural patient in room K651, staff members crowded into the hallway to witness the event.

"Now, patients will be able to stay in Chicago, close to their family, friends and other support," Cohn said.

While the Nahornys still had to trek from their home an hour west of Omaha, it's much easier than traveling to Boston, where Sammy received MIBG last summer. The couple stayed at a hotel and mostly talked to their son through a 3-inch-thick door instead of having access to the adjacent hospital room and cutting-edge communications, which Comer offered.

MIBG has been around since the 1990s but in recent years has become the first-line treatment for high-risk cases like Sammy, fueling growth nationwide, said Dr. Araz Marachelian, medical director of New Approaches to Neuroblastoma Therapy's operations center at Children's Hospital Los Angeles.

Still, access to treatment is limited because of all the rules and regulations surrounding a very high dose of radiation.

"It's very complicated and a huge investment," Marachelian said. "You need to have really good radiation safety officers looking out for the staff, the family, the entire hospital. Is it worth it? Of course … because it's a child's life."

Sammy's illness started with complaints about his neck in June 2012. The next month, he was in the emergency room with stomach and leg pains, dismissed as constipation and growing pains. On July 30, he became one of the 650 cases of neuroblastoma diagnosed every year, usually in children younger than 5.

The hospital and the family are allies in making the protocol as kid-friendly as possible. Sammy didn't have much of an appetite, but he had access to frozen pops and chocolate milk. The Nahornys transferred their Netflix account to Comer's iPad, allowing Sammy to spend hours playing video games. Bingo is on the hospital's in-house TV network, in which a doctor calls out the numbers. Then, staff members bring a cart around stocked with prizes to the anteroom, just beyond Sammy's door. From his bed, he chose Hot Wheels and a memory card game.

The night shift, though, can be the toughest. Nurses talked to Sammy through the intercom, but the majority of nocturnal duty was up to the Nahornys.

"On that first night, he asked if I could please hug him before he went to sleep, and I could not say no," his mother said. "It's too much to expect from a 6-year-old. … Yep, I broke the rules."

Amid all the safeguards, it's easy to forget that at the center is a 47-pound boy who barely dents the mattress. The sign taped to his door listed his career aspirations as FBI agent, firefighter or bobsledder.

After four days, Sammy learned he could not yet be discharged because his radiation level was still too high. He expressed his frustration as only a 6-year-old can: by hurling his plastic dinosaur at the door.

On Good Friday, though, the Nahornys got good news. Sammy could leave his room, and the family would be back home in time for Easter.

But even 600 miles from Chicago, restrictions still hovered like a cloud. For the next couple weeks, Sammy must keep his distance from his siblings, 9-year-old Ella and 3-year-old Jacob, and make sure he doesn't inadvertently share food or utensils because he still will have traces of radioactivity.

"It's tricky," his mother said. "I don't want him to feel bad, but I don't want his brother and sister to think he has something scary, either."

The Nahornys created a foundation called Sammy's Superheroes to increase awareness and funding for pediatric cancers. On June 22, Sammy is scheduled to throw out the first pitch at Wrigley Field, which has him "super-excited," according to his mother.

"We just want to ensure he has as much quality of life as he can, for as long as he can."

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