At 20 months, Ava Krajewski was a typical toddler, a tremendous fan of Dora the Explorer and Little Einsteins, who climbed everything she could get her hands on. In the following four years, she’s become an active, outgoing six-year old who can barely contain her love of ballet and gymnastics. As it turns out, that’s a remarkable achievement.
That’s because in the interim, Ava overcame acute lymphoblastic leukemia (ALL). Fortunately, ALL is one of the most curable cancers, but treatment takes several years—and there are often setbacks along the way. It is a tribute to the love of her parents, the skills and compassion of hundreds of professionals at the Joseph M. Sanzari Children’s Hospital, and her innate resiliency that Ava not only survived this ordeal, but is disease-free and flourishing.
For the Krajewskis, the diagnosis came out of the blue. Just a week after they noticed she was running a slight fever, they found themselves sitting down with Dr. Frances Flug, who became their primary pediatric oncologist through her treatment and follow up. "I was in disbelief that this was happening to our daughter," says her mom, RoseAnn.
Treatment started a few days later—and the first year was hard on everyone. In the course of her chemotherapy, Ava developed nutritional deficiencies and multiple infections including fungal sinusitis, which meant that she was in and out of the hospital. She needed assistance from virtually every pediatric specialty, from neurology to infectious disease to ear, nose, and throat. "Children with cancer are among the sickest we see," notes Dr. Michael Harris, director of the Institute for Pediatric Cancer and Blood Disorders and one of Ava’s physicians. "That’s why it is so important that our Children’s Hospital has the depth and range of expertise among its physicians and nurses that it does."
The Krajewskis were not simply impressed by the competence of the medical staff. They appreciated their compassion. "Ava’s doctors and nurses always spent as much time as we needed to answer our questions, and they were great with Ava," says her dad, Charlie. "For instance, whenever we came in, Dr. Flug always made a point of first examining Puppy, Ava’s stuffed animal, which never failed to bring out a smile."
In the meantime, the Krajewskis read everything they could find about ALL and Ava’s complications, immersed themselves in the literature of clinical trials, and did everything in their power to make life for Ava and her older brother CJ as normal as possible. In this, they were aided by the Institute’s child life therapists, social workers, and psychologists. "Our role is to help families adapt to their new circumstances, and connect them with resources in the hospital and locally that can help them," says Adrianna Acosta, the Krajewskis social worker.
Indeed, building a community of care around patients and their families—a fundamental principal throughout HackensackUMC—is especially critical when providing intensive, long-term treatment for children with leukemia. "We always say it takes a village to care for one of these children," says Carlie Cord, the advanced practice nurse who coordinated her care.
And Ava’s parents were appreciative. As Charlie Krajewski notes, "In two and a half years that Ava was being treated for leukemia, we spent a lot of time at the hospital and in doctors’ offices. It makes a real difference when you’re treated like family."
Ava’s doctors and nurses always spent as much time as we needed to answer our questions, and they were great with Ava.
The operation happened so long ago that Ondrej Masek could barely remember it. When he was a boy of 12 in what is now the Czech Republic, Ondrej underwent surgery to repair his breastbone. More than 25 years later, his family’s recollection of the operation was one of the factors that saved his life after he woke up one morning with a tear in his aorta.
Initially, all Ondrej felt was a worrisome pain in his upper chest—but as the pain intensified, his chin and left arm became numb. That made up his mind. "I asked my wife to call 911," Ondrej recalls, "and I started chewing an aspirin because I thought I had a heart attack."
Given his symptoms, that was not an unlikely diagnosis. "Patients who come to the emergency room with an aortic dissection often present like someone with a heart attack," says Dr. Gabriele Di Luozzo, the surgeon who later stepped in to repair Ondrej’s aorta.
In the short time it took for Ondrej to travel from his home in Rutherford to HackensackUMC, his condition deteriorated dramatically. Though he remained conscious, his lungs were filling with liquid, and he started to cough uncontrollably. When the aorta tears, it changes shape, distorting the aortic valve. The resulting increase reverse flow through the aortic valve causes fluids to fill the lungs—a classic sign of heart failure. It was the worst moment in his life—a moment Ondrej can hardly bear to think about—but it was also a turning point.
As soon as Ondrej arrived, Dr. Chana Gable-Selmon’s Emergency and Trauma Center (ETC) team started to stabilize him, and each successive specialist to arrive clarified his diagnosis. Suspecting an aorta tear, Dr. George Stoupakis, the cardiologist in the ETC, sent him for a CT scan rather than to the cardiac catheterization laboratory, the normal procedure for heart attack patients. Despite Ondrej’s coughing, CT scan technicians managed to secure an image that was clear enough to confirm Dr. Stoupakis’s suspicions.
It was when Dr. Jock McCullough, the cardiac surgeon on call, had a conversation with Ondrej’s wife, Alice, about his medical history that the last element of Ondrej’s diagnosis snapped into place. Ondrej’s breastbone repair was an indication that he had connective tissue disease, which almost invariably leads to an aorta tear in otherwise healthy adults. Dr. McCullough contacted Dr. Di Luozzo, who had joined HackensackUMC as director of its Thoracic Aortic Aneurysm Program just weeks before, and asked him to perform surgery.
Dr. Di Luozzo was exactly the right choice for Ondrej. He specializes in aorta reconstruction for people with connective tissue disease.
Knowing Ondrej’s history crystallized Dr. Di Luozzo’s approach. During eight hours of surgery, he replaced the damaged section of Ondrej’s aorta with a Dacron tube and carefully seated Ondrej’s valve in the tube so that it once again closed properly. "One of the advantages of this approach," Dr. Di Luozzo says, "is that Ondrej can go back to leading his life. He won’t need blood thinners."
But of course, Ondrej’s life was changed forever by the experience. "I was very lucky to have been taken to HackensackUMC and given a second chance," he says. "Now I take nothing for granted. Life is precious to me in ways I couldn’t have imagined before."
Need a quote.
Having follicular lymphoma has not slowed Mary Riskind down. First diagnosed with the condition in 2004, she has continued to serve her community as director of the Bergenfield Public Library and is past president of the Bergen County Cooperative Library System, a consortium of 74 public libraries.
But if the disease did not slow her down, the treatment certainly gave her pause. Mary’s lymphoma recurs periodically, each time necessitating a course of chemotherapy—and one of the mainstays of her therapy has been a drug called rituxan. Though Mary has received multiple times infusions of rituxan since she was diagnosed, despite having developed reactions to the drug that required some adjustments to her treatment. Some of these known reactions to rituxan include nausea, shortness of breath, flushing, and lower back pain.
"You put up with the side effects because you feel that you’re doing something about your disease," she says. "But during an infusion, I could predict when I would start feeling terrible. It was a frightening, miserable experience."
Mary’s response to rituxan is unusual—and her physicians tried a number of different approaches to moderate it, for instance giving her additional fluids, premeds and steroids before the infusion. These efforts were only partially successful, forestalling her reaction but not preventing it.
This fall, Mary’s oncologist, Dr. Andre Goy, chairman and director of the John Theurer Cancer Center and chief of its Division of Lymphoma, referred her to Dr. Mary Ann Michelis, the chief of allergy and immunology at HackensackUMC. Dr Goy was interested in helping Mary out through a desensitization protocol Dr. Michelis was using. "Rituxan is a key component of the treatment for someone with Mary’s lymphoma," Dr. Goy says. "We wanted to find a way for her to tolerate it more easily."
As part of the desensitization protocol, Mary receives a very dilute solution of rituxan. Only gradually, over the course of the next seven hours, is it increased to full strength. During her first infusion session, an oncology nurse sat with her to monitor her reactions. "We use similar desensitization protocols for other kinds of chemotherapy," Dr. Michelis says. "We’re always looking for opportunities to improve patient care."
Although the infusion took much longer than it normally does, in Mary’s case most of the side effects were gone—and her nurses have followed this protocol for subsequent treatments. "It makes a huge difference in how I feel afterward," Mary says. The day after her last treatment, for instance, she worked for 12 hours and had several meetings the next day. "It’s not that I wasn’t tired, but I was able to do what I needed to do for work," she says.
But Mary points out that the desensitization program was also a relief for her husband, who sat with her during her infusions watching her experience her reactions. "He would come home as exhausted as I was," Mary says. "I can’t tell you what a difference desensitization has made for him as well as for me."
Dr. Goy explains that rituximab is a monoclonal antibody, which targets a receptor at the surface of the lymphoma cells and helps the immune system get rid of the lymphoma. Some patients develop an initial but transient reaction the first time around, though in some patients reactions to rituxan worsen and eventually prevent further administration of this key drug. In Mary’s case, she had truly benefited from rituximab previously and definitely needed more treatment. The ability to draw on specialists from around HackensackUMC, as he did in Mary’s case, is one of the strengths of the care at JTCC. "By nature, the complexity of cancer care, requires a multi-team approach, including expertise in other areas like infectious disease, imaging, immunology and pathology, among others," he says. "This multidisciplinary platform is one of our strengths that enables us to provide tertiary and quaternary care in very complex oncology patients and improve their outcomes."
This multidisciplinary platform is one of our strengths that enables us to provide tertiary and quaternary care in very complex oncology patients and improve their outcomes.
Derrick Straughn had no idea anything was wrong until he had his first and only seizure. After that, events moved quickly—when a CT scan revealed that he had a brain tumor.
A few days later, he was rolled into an operating room at HackensackUMC for Dr. George Kaptain to perform the delicate operation required to remove the tumor while protecting his language and motor skills. A neurosurgeon, Dr. Kaptain shares responsibility for leading The Brain and Spine Institute at the John Theurer Cancer Center with Dr. Samuel Goldlust, a neuro-oncologist.
In Derrick’s case, Dr. Kaptain’s mission was to remove as much as possible of what was later identified as a glioblastoma multiforme, a common but invasive tumor that sends tendrils deep into surrounding brain tissue. As necessary, the anesthesiologist adjusted Derrick’s awareness, allowing him to respond to requests from the speech pathologist. "This enabled us to avoid critical areas, especially in places where the tumor infiltrated the brain," Dr. Kaptain says.
Derrick remembers the experience vividly. "I was conscious enough at times to answer questions and move my hands," he says.
Because it is so aggressive, it is impossible to cure glioblastoma, even with the current gold standard for treatment of surgery and a combination of radiation and chemotherapy. It is, for patients like Derrick, that the cancer center collaborates with researchers throughout the world to offer a selection of clinical trials. In fact, John Theurer Cancer Center offers more active clinical trials for glioblastoma than any other facility in the Northeast.
The trial that best fit Derrick’s situation tests a vaccine that prompts the immune system to attack cancer cells that bear a unique biomarker found in one third of all glioblastomas including his. Derrick is married, has two grown children, and a little granddaughter. At 48, he has everything to live for. After considering his options for a week, he opted to participate. Almost a year after surgery, Derrick is tumor free and doing well. "I’m feeling great," he says.
Derrick appreciates the caregivers at HackensackUMC as well as the care they deliver. "I feel people at the hospital make a real effort to connect, which makes it easier going through everything." Lori Cappello, the research coordinator of The Brain and Spine Institute, embodies this approach. "I try to build unique relationships with patients like Derrick," she says. "They need a go-to person—and that’s me."
One goal in making clinical trials available to patients at HackensackUMC is to offer options that go beyond the standard of care. But as Dr. Goldlust says, "Our clinical trial program also gives us the opportunity to advance cancer treatment for all patients." The knowledge generated through Derrick’s trial and others like it offers hope that one day physicians will be able to cure glioblastoma or manage it like a chronic disease.
That’s why HackensackUMC has dedicated the resources needed to create the extensive infrastructure—including people as well as facilities—required to offer a broad selection of trials. "Coordinating clinical trials is time and labor intensive," Dr. Goldlust says. "But clearly, our institution sees the value of cancer research and has invested in it. I know that’s why I’m here."
I feel people at the hospital make a real effort to connect, which makes it easier going through everything.
It was a love story, pure and simple. John and JoAnne Valenti met almost 50 years ago at St. Joseph’s Feast in Lodi, married, and raised a family. When John fell ill with cancer last year, their love sustained them even as John grew weaker and spent more and more time in the hospital. The healthcare team at HackensackUMC made it their mission, not simply to provide the highest standards of care, but also to do everything they possibly could to enable the Valentis to continue supporting each other, just as they had for most of their lives.
"They were a very sweet couple," says Dr. Suhel Ahmed, the internist who was John’s primary physician. "In these situations, we see it as our purpose to help make the wishes of our patients and their families a reality."
Caring for John took a physical and emotional toll on his family. Near the end of John’s illness, JoAnne was diagnosed with congestive heart failure, and the Valentis both found themselves in the hospital. Not wanting to worry her husband, JoAnne told him she was feeling the complications of a lingering infection. At the suggestion of their nurse, Besarta Lumani, the hospital arranged for them to be on the same floor, making it easier for them to visit each other—and find some comfort in each other’s presence.
"Even as he became weaker, I wanted John to feel he had control over his life," Besarta says. "And I wanted to help JoAnne so that she would have no regrets. At HackensackUMC, we all give 110 percent to make the people in our care—including their families—as happy and as comfortable as possible."
A case in point is Denise Patoir, a nurse in the Emergency and Trauma Center. With her colleague Jessica Sarubbi, she helped arrange for an ambulance to bring John to HackensackUMC when he was admitted for the first time. "I got to know John then, but I also used to visit him when he was in the unit," she says. "I ended up feeling that I’ve known him for years."
It was a gesture the family appreciated. "Being ill was hard for my father," says the Valentis’ son John. "By dropping up to see him so often just to say hello, the nurses at the hospital made sure he felt that he still mattered."
When it became clear that the end was close, Keri Fitzpatrick, the nurse manager on the floor conferred with Midge Grady, the administrative director of nursing, and they cleared the way for JoAnne to move into John’s room. She insisted her son push their beds together. And as John passed away, JoAnne lay by his side, held his hand, and comforted him. "He was too tired to say anything, but I knew he could hear me," she says.
"The Valentis’ devotion at the end, holding hands as he slipped away, transformed a painful event into one that was peaceful," Dr. Ahmed says.
JoAnne can’t speak more highly of the care that she and John received. "Besarta was very good to both of us, as were all the nurses," she says. "They were kind and very attentive." For their part, the members of the HackensackUMC team are proud to be part of an organization that values this level of care. "When I met John, it was clear from what he said that he was being treated with respect and compassion," Midge says. "Isn’t this what we want for all our family members?"
Besarta was very good to both of us, as were all the nurses. They were kind and very attentive.
The day after Kathleen Boehm learned she had bone cancer in her upper arm, she had an appointment at HackensackUMC with Dr. James Wittig. If she hoped to save her arm, he was the person to see. Dr. Wittig is one of only a handful of orthopedic oncologists in the tri-state region who is experienced in performing complicated limb-sparing surgeries.
"From that point on, things started to move quickly," Kathleen recalls. The diagnosis was confirmed within a week. She learned she had an osteosarcoma, a form of bone cancer more commonly found in children than in adults. A few days later, she met with Dr. Andrew Pecora, her medical oncologist. Within three weeks of her initial visit, he put her on chemotherapy. "I felt paralyzed by the shock," she says, "yet there was comfort in knowing that my team of doctors was moving forward as rapidly as possible to save my life."
Her situation was indeed serious. "Kathleen’s tumor was far enough along that she was at risk of her cancer occurring elsewhere," Dr. Pecora says. "In this situation, the best approach is very aggressive chemotherapy—high doses relatively closely spaced." Children tolerate this kind of regimen relatively well. For adults, it’s an ordeal. But if successful, the chemotherapy would set the stage for Dr. Wittig to rebuild her arm and save her limb.
"Kathleen was extremely brave and determined," Dr. Pecora says. "We agreed that we would treat her as long as it was medically safe to do so, and she let nothing get in the way of her receiving the right dosage at the right time." The patient and physician built a relationship founded on trust. "Dr. Pecora said he could help," Kathleen says, "and I had confidence in him. I felt like I was in the best place getting the best treatment."
Halfway through the nine-month course of chemotherapy, when the swelling caused by the tumor was almost imperceptible, Dr. Wittig operated. Dr. Pecora’s chemotherapy had succeeded in destroying the entire tumor, which made it possible for Dr. Wittig to stabilize her shoulder and save tissue that he used to reconstruct her muscles and provide more function to her arm. "The surgeries I perform are very complex, but I’ll draw on whatever tools I can to improve my patients’ lives," Dr. Wittig says. In addition to orthopedic surgery, he borrows techniques from a variety of fields including plastic, vascular, and neuro-surgery."
It’s now eight months after the end of her chemotherapy, and Kathleen is doing well and is hopeful about the future. She’s been married for 32 years, with three children in their twenties. "I’m planning on be there for the wonderful things that will be in their lives for years to come" she says.
The kind of integrated treatment that proved so beneficial to Kathleen is typical to the kind of care patients receive at John Theurer Cancer Center. "We’ve organized the cancer center around teams of disease-based experts," Dr. Pecora says. "The team coordinates the care for the patient and can call on other expert teams to help as needed to provide individualized treatment."
Equally important, Dr. Pecora believes, is the cancer center’s focus on treating the whole person, not just the disease. The patient library with a librarian to help patients, the cooking studio where people learn to create more healthful meals, the exercise studio where they can pursue the connection between mind, body, and spirit—all these facilities are not amenities, but essential service.
"When patients like Kathleen come to see us," says Dr. Wittig, "we take a holistic approach, focusing on them as human beings and not just on their disease." That is something that Kathleen herself can attest to. "I was treated with so much kindness and consideration," she says. "I felt safe being at the cancer center because everyone was intent on taking care of me, both physically and emotionally."
I was treated with so much kindness and consideration.
When Kari Duerr went in for a checkup at nine weeks, her obstetricians were alarmed by what they saw. They weren’t very explicit about their diagnosis, but they were unanimous in recommending that she terminate her pregnancy immediately.
Without a clear explanation, Duerr and her husband, Terry, refused. Instead, they embarked on a journey of self-education and second opinions that eventually led them to Hackensack University Medical Center and Dr. Abdulla Al-Khan. By the time they met with Dr. Al-Khan, they knew Kari had a placenta accreta.
Scarring from Kari’s previous Caesarians—she had four children at home—had disrupted the natural barrier that normally seals off the uterine wall. Rather than attach to its surface, her placenta was growing through it. Because of the extensive blood supply that the placenta requires, removing a placenta accreta can be accompanied by massive hemorrhaging.
They were in the right place. The director of the Division of Fetal Medicine and Surgery, Dr. Al-Khan had established the Center for Abnormal Placentation at HackensackUMC for just such cases as Kari’s. "We heard a completely different story from him," Kari says. "From the first moment I walked into that building I knew the baby would be okay."
Dr. Al-Khan is one of the world’s leading experts in the surgical management of patients with placenta accreta. "Fifty years ago, a placenta accreta was highly unusual," he explains. "But with the increase in Caesarians, it’s been on the rise." Dr. Al-Khan’s life’s work is to develop the procedures needed to treat women with placenta accreta successfully.
As part of this effort, Dr. Al-Khan has established a research laboratory to better understand the underlying molecular processes that determine the course of placenta accreta. He and his senior scientists are exploring the use of new ultrasound techniques and identifying biomarkers to provide earlier diagnosis. "No one else besides HackensackUMC has the patient volumes to do these kinds of studies," notes Stacy Zamudio, Ph.D., one of the researchers.
Dr. Al-Khan’s expertise was well in evidence in Kari’s care. In other settings, patients with placenta accreta receive 20 to 30 units of blood during surgery. At HackensackUMC, Kari required none. His thorough grasp of the dynamics of caring for someone in her circumstances was also reflected in the close management of her treatment. Kari traveled to Hackensack once a month from her home near Syracuse. "We coordinated care with all her caregivers at HackensackUMC and those at home," says Alison Forte, Dr. Al-Khan’s nurse. "Our goal was to make sure we used her time during her visits efficiently, minimizing the time she was away from her family."
Two weeks before she was scheduled to give birth to her son, Will, Kari checked into the hospital and spent another three weeks in recovery. A nurse herself, Kari was impressed by the competency of Dr. Al-Khan’s staff and moved by their compassion but adjusting to the needs of individual patients is at the heart of his approach. "I never had care like this," she says. "I had everything I needed."
Kari has recovered completely from her surgery, and Will is flourishing. "He’s a perfect baby," she says. "I told Dr. Al-Khan, I would take Will any way I could get him—and he was happy to oblige."
From the first moment I walked into that building I knew the baby would be okay.
When Florence Fleischman considers the women in her family, she sees a legacy of cancer. Her mother is a breast cancer survivor, an aunt died of breast cancer, and her grandmother died of uterine cancer. In 2005, she was diagnosed with breast cancer herself, and underwent a lumpectomy, followed by radiation. But as time went by, each successive mammogram appointment became an occasion for dread.
In 2010, Florence decided to put an end to the anxiety by having a double mastectomy. "My kids were in high school, and I have a loving husband and a great career," she says. "I didn’t want to spend the rest of my life worrying about whether the cancer would come back and kill me."
Her intention was to have breast implants inserted immediately following the mastectomy, but her plastic surgeon, Dr. Kari Colen, determined that Florence’s skin had been weakened by the radiation, which ruled out implants. Dr. Colen instead suggested DIEP flap reconstruction, a new program that she was organizing at HackensackUMC with Dr. Joshua Levine and Dr. Haman Usal. If Florence agreed, she would be the program’s first patient.
DIEP flap reconstruction builds on previous surgical techniques that use a wedge of fat, muscle, and accompanying blood vessels, usually from the abdomen, and refashions it into a breast that is supple and soft. The key to a successful flap procedure is establishing a blood supply to the transplanted tissue, so muscles are used to take advantage of their blood vessels. xAdvances in microsurgery, however, now enable surgeons to extract the blood vessels alone, leaving the muscle in place. This paved the way for DIEP flap reconstruction, which uses only abdominal skin and fat.
"Because we leave the muscle and the abdominal fascia intact, the patient’s anatomy remains normal," Dr. Colen says. "As a result, her postoperative pain is less, her recovery is quicker, and she has no functional deficit. And as a surgeon, DIEP flap reconstruction has the advantage of giving you more flexibility in placing and shaping the breast."
Florence was confident in choosing HackensackUMC for DIEP flap reconstruction because she understood how much preparation had gone into launching this program. Dr. Colen and Dr. Usal both performed the procedure many times with Dr. Levine, one of the pioneers of this procedure, and they led extensive training sessions for every nurse and technician on the team. Even though each surgeon had mastered the entire procedure, they decided that, whenever possible, they would operate as a team.
A few months later, Florence had her DIEP flap reconstruction. "I was absolutely thrilled with the results," she says. "Between the mastectomy and the reconstructive surgery, I am a different person. The relief I feel is amazing."
Drs. Colen, Levine, and Usal have since performed almost 300 DIEP flap reconstructions at HackensackUMC. With three experienced surgeons working together in the operating room, new procedures developed by operating room nurses and technicians, and the quality of postoperative care, the outcomes are exceptional. "We have a success rate well over 99 percent," says Dr. Usal. "That’s what we want for our patients."
We have a success rate well over 99 percent. That’s what we want for our patients.