As a nurse practitioner for the past seven years, I have had the privilege of being able to help many families through one of the most difficult times of their lives.
My area of specialization and interest is working with children and families faced with the diagnosis of a solid tumor, such as neuroblastoma or Wilms tumor.
Solid tumors are complex conditions that require a full team of specialists to treat. Families are referred to us from all over Michigan and sometimes beyond. Often, prior to being sent to us, they may have experienced a long, frustrating and seemingly endless journey towards a diagnosis. As a professional and as a mother, I have always found it frustrating to see families who, having bounced around from appointment to appointment, are exhausted and scared when finally arriving at U-M. Even after their numerous appointments, they still possess little formal information about their child’s condition or disease.
One of the great things about the University of Michigan, and one of the reasons why so many families come here, is that we are home to some of the country’s finest pediatric surgeons and oncologists. Patients here have access to doctors who actually specialize specifically in solid tumor treatment. Many of our specialists are part of prestigious national committees that develop best-practice treatment recommendations for these conditions, and some devote a significant portion of their time to lab research to uncover new insights about solid tumors. This is an incredible place!
While we realize that most parents are willing to do anything for their child, even if that means running across our campus from clinic to clinic or making repeated trips to Ann Arbor to meet with the various doctors that can help them, we have always felt that these families deserve better.
U-M’s doctors, nurses, and care team members have a culture of always wanting to do a better job of caring for our families. In the case of children with solid tumors, we wanted to not only improve the overall care of the patient, but also make it more convenient and less WORK for families.
The result, in this case, is the C.S. Mott Children’s Hospital Solid Tumor Oncology Program. We created a “multidisciplinary” program in which pediatric specialists who have extensive training in treating solid tumors (surgeons, oncologists, neurosurgeons, social workers and physical therapists, among others) get together in a single clinic once a week, or more often if needed, so that families can see everyone they need to see in a single visit. Then, and this is one of the most exciting parts, the physicians and other team members meet together and participate in an interactive, group-driven conversation allowing the physicians to determine the best recommendation for treatment, and challenge one another to think beyond “medicine as usual.”
As the program’s nurse practitioner, I have a pretty unique role. Not only do I provide direct patient care, but I also function as a sort of clinical concierge for each patient and family. I make sure that all members of the team have access to the information they need to manage their child’s care, help coordinate appointments and diagnostic exams, and educate families regarding their diagnosis and what to expect along the way.This is particularly meaningful to me as a nurse practitioner, because I have always felt that one of the most important parts of my job is to empower families with knowledge. The more a family understands about a particular disease, diagnostic test, or procedure, the better able they will be to cope and spend their energy helping their child get better.
We can already see the difference this new model is making for families. When we had our first clinic day a few weeks ago, we saw a young man with a new possible tumor diagnosis. By the end of the day, his diagnosis was confirmed and an entire team of specialists had met to devise a treatment plan. He met with fertility specialists the next day to address specific concerns related to his particular disease, and on the third day he was in the operating room to have his tumor removed. His family went from confused and unsure of what was going on to feeling certainty, awareness, and relief knowing he was getting the care he needed quickly and from the right people.
It’s part of the Michigan Difference. People who work at Mott are always asking, “How can we do this better?” Thanks to this clinic, my colleagues and I within the Solid Tumor Oncology Program get to do just that.
What was something about your diagnosis and treatment that made the experience a positive one? Use the comments section below to let us know.