Child has to be isolated during treatment because of high-dose radiation therapy.
AT precisely the time six-year-old Sammy most needed his parents, they were forced to keep their distance because his unique cancer treatment made him radioactive.
Even his favourite blanket and stuffed animal were off-limits, lest they, too, become contaminated.
Two weeks ago, Sammy Nahorny became the first patient at Comer Children’s Hospital to undergo high-dose radiation therapy for neuroblastoma, one of the deadliest paediatric 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 in the US to offer the treatment and the only site in Illinois.
The family made the 10-hour trip from its home in Columbus, Nebraska, to the University of Chicago because surgery, chemotherapy and a stem-cell transplant have not slowed the primary tumour 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% 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 paediatric 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 favourite 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.”
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 five.
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 six-year-old. ... Yep, I broke the rules.”
Amid all the safeguards, it’s easy to forget that at the centre is a 21kg 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 six-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. – Chicago Tribune/McClatchy-Tribune Information Services