When it comes to young patients, an open mind is as important as an open MRI, physicians say. Here’s one family’s and one hospital’s case history of kids and oncology.
In June 2004, Terrie Magro was living every parent’s worst nightmare. Her older son, Michael, 13, had just been diagnosed with acute lymphocytic leukemia (ALL). Meanwhile, her younger son, Mark, 11, was deep into treatment for Hodgkin’s disease. Their diagnoses were just 3 months apart.
“It came out of the blue,” Magro said. “Mark was a perfectly healthy kid. And one day in March [of 2004] he says to me, ‘I feel something on my neck,’ and he’s pointing to this lump. My first thought was that he had mono.”
Magro, a former nurse, took Mark to their family pediatrician, who prescribed an antibiotic and advised Magro to monitor the lump every day to make sure it was shrinking. When it remained the same size—7 cm—despite the round of antibiotics, Mark was given a chest x-ray. The exam revealed abnormal cells, and subsequent advanced imaging in the form of a PET scan and a contrast-enhanced CT confirmed the verdict: It was Hodgkin’s lymphoma.
|Mark Winblatt, MD, shows how a VeinViewer Imaging System manufactured by Luminetx uses a near-infrared light that makes the detection of veins easier when inserting needles, helping IV treatments and blood tests be less stressful for pediatric patients.|
Michael’s diagnosis a few months later eerily echoed his younger brother’s. When he began to feel sick one Friday night, Magro assumed that her athletic, sociable son, always burning the candle at both ends, had come down with a touch of the flu. “The pediatrician drew blood, and he had an elevated white blood cell count, but it wasn’t a high elevation,” Magro said. “They gave him an antibiotic, but he wasn’t really responding. And then he developed this annoying cough.”
Again, the Magros went for a routine chest x-ray, but this time it was Michael on the exam table. The diagnosis was right lower lobe pneumonia. “The doctor said, ‘Keep him home from school, make sure he lies low,’ ” Magro said. “But now his whole look was starting to change. He had this … pallor.”
Another chest x-ray a week later showed that the pneumonia had moved into the middle lobe of Michael’s right lung; and a CT followed by an aspiration showed that it wasn’t just walking pneumonia. It was acute lymphocytic leukemia (ALL) with a T cell variation.
“The doctor said, ‘Terrie, this is a serious situation,’ ” Magro recalled. “And I said, ‘Oh, God, help me.’ ”
What Magro remembers most about her sons’ chest x-rays is the apprehension she felt. And, she stresses, the technologist plays an invaluable role in assuaging the fears of both patient and parent. “Insurance drives our industry these days, so nobody has time,” she said. “I know it. I’ve been there. But techs are the first line. Their role is very important. They’re the only contact you have in that office as a patient, because you’re not personally seeing the radiologist.”
Every course of treatment for cancer begins with extensive advanced imaging. Magro’s sons experienced it all: PET scans, CT scans, MRIs, x-rays, sonograms. “By the time we got to the PET scans, the equipment was becoming more intimidating,” Magro said. “They’re giving you something to drink, they need to inject things, and you’re scared out of your mind. Some tests, I was able to be in the room. Others, I wasn’t. So to me, the most important person is the guy sitting in that room behind the glass. You need that person to be calm, to tell you every little thing in short, easy-to-understand sentences.”
Both of Magro’s sons were treated at the Cancer Center for Kids at Winthrop University Hospital, Mineola, NY. Mark Weinblatt, MD, chief pediatric oncologist at the Winthrop Cancer Center, has access to some of the most advanced imaging technology available—nuclear medicine, MRI, 64-slice CT, and a full array of x-ray and ultrasound equipment. But he stresses that the right machinery takes you only so far.
“Young children often have very different fat content in the body,” Weinblatt noted. “Studies designed for adults aren’t as accurate in children, so we have to make changes. We’d also like to expose them to less radiation from the diagnostic studies, as there’s concern about the long-term side effects, so we’ll use more ultrasound, more magnetic fields for MRI scans, and avoid using ionizing radiation. Thirdly, there’s the issue of being cooperative for studies.”
Cooperation is imperative if imaging is to be of any use to clinicians, but children and teenagers aren’t always amenable to the requirements of advanced radiological studies. Magro experienced this firsthand: “Mark had a lot of problems with the CT scans because he didn’t like the stuff they had to drink.” Weinblatt said aversion to contrast material is a common obstacle, and though flavored contrast agents are available, the taste of barium sulfate doesn’t exactly blend well with strawberry.
That’s when you have to improvise.
“We look critically at what information is most important from the study,” Weinblatt said. “If we can get by without oral contrast, we’ll discuss it with the radiologist and let them know exactly what we’re looking for. The radiologists aren’t always happy with the change, but they know it’s more important to have the child cooperate.”
|Paul and Terrie Magro with their son Mark Magro, a young cancer survivor. The Magros founded the Michael Magro Foundation, which benefits Winthrop’s pediatric cancer patients, after they lost their older son, Michael, to acute lymphocytic leukemia.|
Weinblatt notes that teenagers are as susceptible to resisting imaging as their younger counterparts. “They hate the contrast,” he said, “or they have phobias about being in an enclosed space with the scan. They have their own ideas, and they’re adamant. They sometimes won’t listen to their parents, either. We have to get them involved in the decision-making process.”
In Mark’s case, this meant substituting MRI for CT in order to conduct the necessary abdominal and pelvic imaging. “It’s much more expensive,” Magro said, “and you need prior authorization from the insurance company. But Dr Weinblatt got that from them.”
Mark’s course of therapy went well. Hodgkin’s is “the best of the worst,” as Magro put it, in terms of pediatric cancers, and Mark was able to have his entire course of treatment done at the outpatient center. “He was never admitted to the hospital,” Magro said. “He tolerated the chemo and the therapy afterward very well. He had 14 days of radiation at Winthrop, and he did very well with it. They made it kind of fun. That made all the difference in the world. Without cooperation from the patient, it’s an uphill battle.”
Michael’s prescribed course of treatment was far more intensive. ALL in a teenager requires 21?2 years of therapy; at that age, cells are constantly splitting and growing, and what would ordinarily constitute the normal course of growth for the body is suddenly a dangerous risk factor.
The 1-week aspiration looked positive. The 28-day aspiration looked positive. And then Michael began to lose weight because he couldn’t bring himself to eat. His breathing became increasingly labored, and on July 25, when his white count bottomed out, Winthrop had to stop his chemotherapy. Within 2 days, he had to be put on a ventilator, after which he couldn’t speak.
“His pressure got bad,” Magro recalled. “His kidneys started to fail. By Thursday [July 29] they asked us to sign a DNR. They had put him into a low metabolic state, but his oxygen-to-CO2 ratio was completely out of proportion. His daily chest x-rays looked like a whiteout. There was just no exchange.”
That was the end of Michael’s course of treatment. He died the night of July 30, 2004.
Sharon Coritsidis, RN, MSN, CPON, CPNP, is a nurse practitioner at Winthrop; she’s responsible for follow-up care of the patients in the Cancer Center for Kids. She helped found a program called the Generation of Survivors, designed to meet the needs of families and patients who have experienced cancer treatment and are 2 years or more past it.
“We really push healthy lifestyles,” Coritsidis said. “Start now with the good habits, the healthy lifestyle—good nutrition, exercise, no drugs, safe sex. You ask me, I’ll tell it like it is. I’m very straightforward with my kids, and they’re very open to it.”
Like Weinblatt, Coritsidis has extensive experience with negotiating the boundaries of children and teenagers. “You don’t have abstract thinking with kids,” she noted. “You have to be very concrete, very honest. If you’re not honest with a kid, they’re not going to trust you.”
Coritsidis stresses the importance of the transition from pediatric to adult medicine, and her Generation of Survivors program reflects the significance of that juncture. “We want them to be able to go to their adult doctor with a complete treatment summary and say, ‘Here are the recommendations of my oncology group.’ We want it so that they’re not lost when they walk out of here.
“It’s not only chemotherapy, but also radiation therapy the children receive in conjunction with chemo that can cause long-term issues,” she continued. “If you give radiation in conjunction with certain medications, they potentiate each other, increasing risk. Radiation in the abdomen or pelvic region can affect fertility. Radiation in the chest can cause pulmonary fibrosis. Radiation in the head can cause learning issues. We help coordination of care for an easier transition.”
But for the Magros, follow-up hasn’t been merely a clinical process. “To keep ourselves together, we wanted a foundation started in Michael’s memory, and also for Mark, as a survivor,” Magro said.
That’s why she started the Michael Magro Foundation, a 503(c) benefiting Winthrop. An annual fund-raiser brings in the majority of the foundation’s money, which is then used for donations big and small—from a VeinViewer Imaging System manufactured by Luminetx Corp, Memphis, Tenn, a near-infrared light that makes the detection of veins easier when inserting a needle, to televisions and Xbox game systems. “One thing Mike had said when he was in there was they had a Nintendo 64, but by that time it was all about Xbox,” Magro recalled, laughing. “So we donated the systems and games and stuff.”
Other donations focus on the parents of pediatric cancer patients. “If I can just make them smile for a moment,” Magro said, “that’s my goal.” These include gift cards for gas and movies to ease the financial strain on families experiencing the kind of crisis the Magros did.
“It’s taken the negative energy and anxiety and turned it into something positive for us, as a family,” Magro said. “You can put yourself into a corner and fade away, or you can step up and do something. Mark has a life ahead of him. He’s a survivor.”
The Human Component
One theme reflected by Magro, Weinblatt, and Coritsidis alike is that when it comes to dealing with kids, having the best technology is only half the battle.
“The new technology helps,” Weinblatt said. “Open MRI is one example—it’s less frightening and intimidating to a child. That’s one variation on a theme. A CT that takes 3 or 4 minutes? That’s a big deal because then we don’t have to sedate the kids as much. And there are certain childhood tumors that we can now localize using targeted nuclear medicine studies, which helps us find the disease, identify sites we may have missed, and gauge the progress of treatment.”
But Weinblatt stresses that having a cooperative patient trumps the fastest scanners on the market. “We don’t have the most cooperative of patients,” he said, “and that’s the challenge. We have to be very innovative.”
Magro notes that technologists are more crucial than they might think for that very reason. “People in the medical field don’t know how important their roles are. They say, ‘Oh, I’m just a tech,’ but they’re the most important person to the patient and the family,” Magro said.
And Coritsidis emphasizes the importance of connecting with kids to ensure their survivorship is a long-term proposition. “It’s not only a clinical plan,” she said, referring to the focus of her Generation of Survivors program. “It’s teaching them to be proactive and not reactive. If there’s an issue now, you deal with it now. You don’t wait until down the road to deal with it.”
In the end, Weinblatt said, it’s the human component that guarantees the best care. “You have to have an open mind when you deal with kids,” he said. “If you have that kind of approach, you can get what you need.”
Cat Vasko is associate editor for Medical Imaging. For more information, contact .