If you saw Patrick Kelly, a healthy, vibrant 28-year-old ironworker from Bellaire, OH, playing with his two young children, it's unlikely you'd guess that less than two years ago he was fighting for his life. After smashing his hand at work, Patrick had an MRI to find out why the wound wasn't healing as expected. When the results suggested—and a second MRI confirmed—that the bones in his hand didn't look quite right, Patrick was sent for blood tests. It turned out that his white blood cell count was extremely high.
A week later, levels of his hemoglobin—the oxygen-carrying component of red blood cells—started to drop, and Patrick discovered his spleen was enlarged. Oddly enough, he didn't have any other symptoms. But in May 2010, he was diagnosed with chronic myelogenous leukemia (CML), a disease in which bone marrow (the spongy tissue inside bones) makes too many white blood cells.
The doctor who was treating him was leaving the practice, so Patrick was transferred to West Virginia University (WVU) in Morgantown, about 90 minutes from his home. Within a week, he met nurse and patient navigator at the WVU Mary Babb Randolph Cancer Center Pamela Foy—the woman who would guide him through his often-confusing and occasionally difficult treatment.
Patrick didn't respond to three different oral medications for CML—which usually put patients in remission for years—so he became a candidate for a stem cell transplant. A national search was launched for a donor, but a match couldn't be found. So in August 2011, Patrick had a double umbilical cord blood transplant, which came from women who had donated their newborns' cord blood. "Pam explained every step of the process, which made it a lot less stressful," recalls Patrick.
After the transplant, Patrick's white blood cell count dropped precipitously, leaving him vulnerable to infection. He had to go on a low-microbial diet (which requires that everything—even vegetables—be cooked to kill any bacteria), practice scrupulous hand washing and wear a mask in public. When his blood counts got too low, he needed several transfusions.
Patrick also developed painful blisters all over his mouth, making it impossible to eat or talk for nearly three weeks. "That was the most stressful thing that happened, and it helped that Pam had warned me about it ahead of time," he says. "I had to have five lines of IV medications and nutrients running all day long." Pam gave Patrick tips on how to cope and reassured him that the blisters would go away.
"My favorite part [of being a patient navigator] is the teaching," says Pam. "I love talking with patients and their families. [As nurse navigators], we develop strong bonds with our patients. Patrick is quiet and smart like my husband, and we developed a comfortable, trusting relationship. I really grew to love Patrick and his wife, Jennifer."
Many patients get attached to their navigators. In fact, "Sometimes a doctor will say, 'So-and-so is asking for you because she wants a hug,' " says Pam. "Every patient is a VIP. Often I know their kids' names, their parents' names. It's fulfilling."
For Jennifer and Patrick, Pam was a godsend. "She was a blessing," says Jennifer. "If we were in the middle of something, Pam would stay to finish, however late it was." Pam also went the extra mile to help the couple during their pregnancy. Jennifer unexpectedly became pregnant with the couple's second child while Patrick was taking the CML medication. With Pam's help, Patrick's medical team contacted the drug manufacturer and worked with Jennifer's ob/gyn to monitor the baby for birth defects. Jennifer gave birth to a healthy baby girl in September 2011.
In that same month, Patrick got more good news: His CML was in complete remission. "It was mind-blowing," recalls Patrick. "I didn't expect it that soon."
Pam's next challenge: helping Patrick get back into the swing of things after he goes home (he had to stay near the hospital after the transplant). Patrick and Jennifer take comfort in knowing that Pam will be there to help. "We were blindsided coming into this, and Pam helped us every step of the way," says Jennifer. "She feels like family to us."
They're nurses or social workers who help steer cancer patients through the labyrinthine journey from diagnosis to treatment. In recent years, many hospitals have added patient navigation services, which are offered at no extra charge to patients. By 2015, the American College of Surgeons' Commission on Cancer will require cancer centers to offer patient-navigation services to meet accreditation requirements. Navigators set up doctors' appointments and lab tests, give people the information they need to make difficult treatment decisions, help them cope with treatment side effects and provide physical and emotional support to both patients and family members.
To find out how a nurse navigator could help you or a loved one, go to aonnonline.org [6].