Kaylin McGuire has a favorite saying: “Excuses are the nails in the house of failure.”
The credo perfectly captures the special brand of grit the 21-year-old embodies. Diagnosed with bone cancer in her jaw and palate seven years ago, Kaylin leans on this trait constantly to cope with chronic, insistent pain from numerous facial reconstruction surgeries, some of which have required taking bone and tissue from her legs.
But she also relies heavily on her unwavering partner in pain care: St. Jude Children’s Research Hospital. At every step of Kaylin’s journey—from chemotherapy and radiation in the early months to ongoing procedures today—clinicians from the St. Jude Pain Management Service have alleviated her suffering by drawing from a robust toolbox of treatments. These range from oral and IV medications to nerve blocks and pain patches to non-drug approaches such as physical therapy, deep breathing and distraction.
To divert her focus from her hurting body, Kaylin busies herself with creating beautiful beaded bracelets by the hundreds, which she sells or gives as gifts.
“I still have pain, but I don’t think about it as much,” says the aspiring nurse. “I don’t know what I would do without the pain team. They make sure I have everything I need and that I’m comfortable.”
Standout program nationwide
Pain is an unwelcome—but never unchallenged—companion to many illnesses and treatments tackled at St. Jude.
Cancerous tumors can painfully press against nerves, bones and organs, while conditions such as sickle cell disease can prompt agonizing pain episodes, when crescent-shaped blood cells clog normal circulation. Meanwhile, treatments such as radiation can burn skin and mucus membranes, while chemotherapy side effects can include searing nerve pain. The pain can be short-lived when linked to surgery or other procedures, or lasting when triggered by illnesses or treatments.
But no matter how it arrives, pain is taxing to both body and soul.
“Cancer survivors report that the most distressing experience they encountered during their treatment was their exposure to painful procedures,” explains Doralina Anghelescu, MD, medical director of the St. Jude Pain Management Service. “If pain isn’t well-controlled, your heart has to beat faster, you consume more oxygen and your body produces more stress hormones, so there are physiologic consequences as well.”
Launched formally in 2000, the service stands out as one of only a handful of similar programs at children’s hospitals across the United States. St. Jude clinicians refer their patients to the program, which encompasses anesthesiologists, pharmacists, nurses, physical therapists and psychologists. These experts work together to treat complex pain issues or track major surgical cases that have a high likelihood of acute pain after surgery.
Stepped approach to pain relief
The multidisciplinary team decides on pain relief options by first categorizing each case as either nerve- or tissue-based pain. From there, they take a stepped approach, first using over-the-counter analgesics and moving on to morphine and other opioids when necessary.
When indicated, local or regional pain blocks are used at the same time as systemic drugs. Clinicians also complement medications whenever possible with physical therapy and psychological interventions such as teaching relaxation techniques.
“We’re constantly pushing the limits because we still encounter situations where we’re scratching our heads wondering what else we can try,” Anghelescu says. “We don’t feel we have everything we need yet. Clearly there’s a place for drug development, and eventually I think gene therapy will play a role in pain management. There’s a lot of space for innovation.”
New Pain Board bridges gap
The newest enhancement to the Pain Management Service is the recent creation of a Pain Board designed to bridge the gap among clinicians treating various forms of pain and to help educate caregivers on the best strategies for treating complex pain patients.
“The intention is to be a board similar to the concept of a Tumor Board, where clinicians in various disciplines sit around a table and review patients’ imaging and clinical status to look at all the options for pain management and come up with a plan,” Anghelescu says.
During her seven years of treatments, Kaylin has absorbed as much about the St. Jude ethos as she has about methods to control and calm her pain. She’s laser-focused on someday becoming a nurse practitioner at St. Jude, partly to right the wrongs she experienced at another hospital where nurses didn’t believe her descriptions of how bad her pain really was.
“We need nurses who understand how we feel and who understand how to work with patients and get them out of pain,” she says. “At St. Jude, I feel like they really listen to me.”
From Promise, Autumn 2017