Many areas of nursing require a unique kind of toughness. It’s not always easy to stay focused on the patient and family in front of you and prioritize their needs, especially when you’re working with many different patients at the same time. The patient and family want to feel they are your only responsibility of the day. As a pediatric nurse practitioner who cared for children with cancer, I was able to do that despite the variable sadness and joy I experienced throughout the day.
I worked with many different patients at many different places in their journey. Sometimes I would see a patient with a new diagnosis, a relapsed or progressive disease, a routine visit, or even a child at the end of life—all in the same week or day.
The mindset of being ever-present with patients and families has helped me discover who I am. It’s opened up more avenues for me than I ever thought possible.
Families want to have the reassurance that you’re in the right state of mind to care for their child in the moment they need it most. Oncology practice walks a fine line between empathy and total immersion with families. Those families become ‘our’ patients due to a complete life-altering diagnosis. They will forever remember the day that separates their old life from their new life. As a caregiver, I became part of that. I needed to make sure I gave each individual patient and family my best.
I’ve been interested in oncology ever since my first job. When you graduate from a nursing program and go into a hospital setting, you are immediately asked what kind of floor you want to work on. Many choose a hospital first because of the vast opportunities to utilize your college training and experience. Often, new grads like myself will start out on a medical/surgical floor because of the wide range of patient work ups, diagnoses, and family experiences that happen each day.
The medical/surgical floor is often where oncology patients are placed. When I first fell into working with oncology patients, I quickly realized I had the mindset and skills to care for these individuals. I often received as much, or more, than I felt I gave. I never doubted myself or thought about doing anything else.
Besides working on a general adult oncology floor, I also worked on an adult/pediatric bone marrow transplant unit early in my nursing career. Sometimes children would have inherited conditions and more than one child from the same family would come through for a bone marrow transplant. Those families especially left me with a lasting impression. They continued to persevere despite incredible odds as they walked the terrifying path of transplant for the second time.
For the last 17 years of my nursing career, I was a pediatric nurse practitioner at a hematology oncology clinic in Minnesota. It was the largest clinic in the five-state area, so we saw a lot of patients. I specialized in oncology, which was my primary patient population.
I often spoke with families about their child’s diagnosis. There's something humbling about working with these families given a life-threatening diagnosis. They’re extremely vulnerable and you learn so much about them in those first couple days—some things that their own family and friends might not even know. They may feel they are at their lowest of lows. You’re dealing with not only their child's diagnosis, but the family dynamic that comes into play.
Throughout therapy, many parents ask for next steps or what happens when the child presents with certain symptoms. Sometimes it’s serious and urgent enough that you have to move forward with what you know to be the best care for that child, regardless of the protocol. Sometimes, if not life-threatening, a provider must reference the protocol.
It’s important never to imply that a protocol or words on a piece of paper take priority over a patient.
It’s a constant balance between proper care on protocols that allow us to learn the overall wellbeing of a child, keeping them safe, and helping their family understand that the protocol is there for the child’s best interest.
Parents want to know many things upon receiving a diagnosis, including how or why their child became sick, the treatment options, the cure rate, the chance of death, and the side effects. Even though they’ll initially ask those questions, and it may give them a frame of reference, they soon realize all that matters is their child. Even if there’s a 90% cure rate, they wonder if their child is in that 10% group. If their child is in the unlikely group that relapses, statistics and odds come to mean so little.
I think the number one thing that keeps providers, nurses, and staff interested in clinical or bedside care is that patient and family interaction—I know it’s what inspired me day in and out. But one summer, as I wrapped up a great experience with a family, I had this feeling that I could leave patient care and everything would be okay. I never experienced that feeling before that day. I thought to myself, “I've got a good chunk of time left.” Either I'm going to be a clinical provider for the remainder of my career, or maybe now is the time to consider something else.
I started to think about the fact that patient care didn’t need to be my definition of being a nurse practitioner anymore. I felt at this point in my career, caring for patients didn’t have to just be at the bedside. Maybe I could find another form of care by doing something else.
Both my daughters just graduated and passed their nursing boards to become RNs. As they look toward their future, I always tell them to be open to opportunities and meeting new people.
You just never know when it might lead to something great. Even if it feels like a negative experience, you still will learn from it.
When the opportunity came to join PRA, I opened myself up to it, even though it was unfamiliar territory. It seemed to check all the boxes I was curious and excited to explore. It focused on pediatrics, oncology, knowledge of trials, and best of all, it seemed to be a position that would capitalize on my past career rather than be a lateral move.
In all my years as a pediatric nurse practitioner, my knowledge and understanding of CROs was limited. Now that I’m in this role, I know there’s a place for past care providers to be involved in this space. Their experiences definitely strengthen trial development.
In my current role at PRA, I think of those families and all the complexities that come to mind regarding their knowledge and understanding of clinical trials. I am so proud that PRA, and specifically the Center for Pediatric Clinical Development, acknowledges that. They’re the experts on making pediatric trials better, improving means of communicating trial possibilities to families and making sure we do our best to get meaningful data.
I believe our industry needs to continue focusing on human aspects and interactions within all of our trials. Trials need to be easily understood and specific so that providers and parents can follow them without confusion or varied interpretation. I suspect that the most easily understood trials will be more welcome and applied at sites.
Pediatric oncology is an area that operates off of limited resources. It’s a rare disease by definition in the US because less than 200,000 children are diagnosed every year. Many first line standard of care treatment recommendations have been in place for 10, if not 20 years. While they may be the best-known treatment options, they still may only have a 70-80% cure rate.
For example, for a child with an incomplete resected low-grade brain tumor, his or her first line treatment is 15 months of outpatient therapy. This is the same treatment regimen used 17 years ago when I started in pediatric oncology practice. Those 15 months are long, where they have to come in every month, sometimes every week, throughout therapy. If the tumor recurs or starts to grow, they move on to a different treatment. That can sometimes lead to many more repeated therapy recommendations if it doesn’t stop the tumors regrowth once and for all. But for now, this is the best treatment option we know.
I’m passionate about advocating for new therapies for patients like these where we can simply do better. It’s time for new therapies that especially help relapsed patients, patients that don't have good first line therapy, and patients who are treated on several different regiments.
To do this, collaboration is really important. In the past, the industry has acted independent and very siloed. Between consortia, sponsors, drug companies, and even private institutions like advocacy groups and CROs, we have started and need to continue to work together.
In my heart, I know I can handle all aspects of oncology—the successes, failures, easy days, and hard days. Things vary day to day, but always circle back to the seriousness of a diagnosis or the family dynamics and resources. Regardless if I’m caring from the bedside or from afar, having a handle on my feelings is important for any provider to remember, especially in the world of oncology. Now, at PRA, I’m capitalizing on my experience not only as a pediatric nurse practitioner, but in oncology as well. I didn't have to give up my passion for oncology for this role because it builds upon my experience.
With this opportunity, I still get to do pediatric oncology and I still get to support families. I am content knowing that I'm working on the front end, developing effective pediatric trials while thinking on a larger scale for families who I treated in the moment. I may not be treating them in person anymore, but I don't need that affirmation from the family to tell me “thank you.”
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