Monthly Archives: September 2014

On the oncology floor, nursing is about “Showing up.”

Mandy and CharlieMandy Drozda joined the hematology/oncology team at St. Louis Children’s Hospital more than thirteen years ago. She started as a registered nurse, and has since become a pediatric nurse practitioner (PNP). She’s gotten married, started a family and cared for hundreds of young cancer patients along the way, and as she tells From the Bedside, she’s still learning from patients and their families every day.

When I got out of school, I was offered three jobs. But I remember my mom saying, “If you were offered the hem/onc job, there’s a reason. You should take it.”

I listened to my mom. I took the hem/onc job, knowing I would need to learn how to be a nurse while learning the specialty – and I loved it. After two years at another hospital, I decided to venture to St. Louis Children’s and see if they had any Hem/Onc positions.  I literally came over, walked into the clinic, and asked at the front desk for the manager. They brought out the head nurse, and I said, “I want to work here, and I need to know how to make this happen.”

I went through interviews and the whole process, and was not hired. But I kept my eye on the division, and I came back the next spring to interview again. I will never forget Dr. Hayashi saying to me, “We didn’t hire you last time. How does that make you feel?” I told him, “I’ll keep coming back until you do.” Needless to say, our interview was complete and as they say, the rest is history. I was hired at that time.

That was more than 13 years ago. A lot has happened since then. I’ve experienced a lot of life. I got married, and I left this job for a few months. I realized I had made a huge mistake, I missed it, so I worked my way back in. Since then, I’ve had three children who have taught me many life lessons which, in turn, have taught me so much about my job.

My third child was born last September, and had a stroke during delivery. He spent five days in the NICU. He’s doing really well now, working hard at his weekly therapies, persevering. We are hoping he will eventually overcome his challenges. But I learned countless, priceless lessons from this situation, and when I first came back to work, it made me listen a lot differently. I learned what I didn’t know about crisis at all before – and that is when there is a crisis, it is all about showing up. If you just walk through the door, show up, and stand there, it starts. Some people need an hour, other families are good to go. Some need something entirely different. It’s my job to figure out how they need to be supported, and to follow through.

Charlie’s family needed something different than most. Charlie came in when he was little bitty. He was full of leukemia in his brain. His wonderful parents love him so much, but both work full time. So in the beginning with Charlie, it was hard, because although they do have a very set caregiver schedule, it was different every day. Mom and dad work, so they were around mostly on a day off, nights and weekends. We knew these parents were not choosing to not be here; they were petrified of losing their jobs and insurance. They were surviving. It hit home to me that if this were my family, the situation would be very similar. I, too, would need to be at work most days. I know that’s what I would have to do, and it would be the hardest thing in the world. So I’d want a care team committed to doing everything inside and outside the box to make sure I was in the loop.

That’s why now, when Charlie is admitted, I try to call mom everyday. We go over everything for the day: what the plan is, what changes have occurred, what her concerns are, etc. That was how I could be present for this family. We just talk and work out the puzzle. We put my pieces into hers, and figure out the plan.

Charlie is a little miracle. He’s just one of those kids that makes me think, “This is why I come to work every day.” I can’t even bring myself to think about what this little boy looked like in the PICU, because he was so full of leukemia. Everything is nearly resolved. All of it. Infant acute lymphoblastic leukemia (ALL) is a terrible disease, but he’s usually smiling or giggling. His progress is amazing.

He’s also a just few days older than my son. And, in the beginning, I wanted to say to his mom, “Quit your job. Come hold him.” But – he’s fine! He doesn’t have leukemia right now. He’s almost to the maintenance portion of his therapy. It doesn’t mean it can’t come back, but he’s pretty much thriving. He could be the small percentage that will sail through and be fine! Watching him go through it and deal with it, and his mom finding the strength to do what she thinks is right – enlisting the many people who love him to stay with him during the day, and trust the team of us here to care for him –it shows that it really does take a village. That village includes not only the friends and family they had before, but now me and the rest of our team.

So many people are involved in caring for these incredibly complex patients. They have their standard appointments and admissions for treatment, and they know who they’ll see for those, but then they rebound with fevers and illnesses, and they see new faces. The nurse practitioners in our division make sure each of these children receives the care they need; regardless of why they’re in the hospital, we’re the glue. Our residents are learning to be doctors; our fellows have huge research and clinical responsibilities. But every time one of our patients crosses the threshold of this hospital, their family knows the PNP they can lean on. Everybody plays a role, but to get to the nitty gritty of each child’s plan, you need to know what’s next. We’re the connection to that. We’re the GPS.  And, by default, we are privileged enough to wind up super close to our families.

These families, more than anything, just want their questions answered, and want to know that we’re all on the same page. Because whether it’s bad news or good, they want continuity of everyone being on the same team, and to know at the end of the day they did everything for their child they could do. That’s all anyone wants to look back on. That’s the greatest reassurance I can offer a family.

I always hear, “How do you do this?” In my mind, somebody has to do it, and either you can or you can’t. The only way to know is by doing it. Then if you do it and love it, there’s no leaving it. There’s nothing else that can ever give back to you like this job. When you look at the cure rate overall, it’s about 70%. So most kids are walking out of here, but you have to come to grips with the fact that 30% aren’t walking out of here. I’ve seen families on both sides of the statistics, so I know that if tomorrow things change, a child’s disease returns– I also know how to support parents down that road too. But just like Charlie’s family, I have no reason not to hope to beat the odds. At the end of the day, that is all anyone is trying to do, beat the odds – find another drug, another curative regimen, another chance. I am lucky enough to call this my job and it is truly my honor to play a role in these children’s lives. Children, like Charlie, are the sole reason that I continue to “show up” everyday.

Cancer nurse continues to celebrate patient she called “the life of the party”

Rema Sous MaloneRema Sous Malone has worked at St. Louis Children’s Hospital for nearly four years. She started as a patient care technician (PCT) while still earning her nursing degree from St. Louis University, and became a nurse when she received her bachelor’s degree in 2011. She’s still in school, now working toward her graduate degree while caring for patients. As Rema says in this post for From the Bedside, she’s met a number of children who have made an impact on her life, but Mert was extra-special. Meredith would have turned 20 today (September 2), and though she’s not here to mark the occasion, Rema and many others continue to celebrate her life.

Most people say that they choose their profession, but I wholeheartedly believe that my profession chose me.

Becoming a hematology/oncology nurse has been a dream of mine ever since I was a child. I distinctly remember sitting in my room and reading books about a little girl who attended cancer camp. I liked reading about her life and what she was going through. Although I never truly understood the perseverance and hope these children have until I started working with them as a nurse, my passion for caring for them started when I was very young.

My dream became a reality when I was hired to work on the 9th floor immediately after college. Working with these children was everything I had imagined and more, and I am truly honored to care for such wonderful people. When I tell others what I do, I often get the response “How can you do that?” I can quickly reply with, “I can’t imagine doing anything else, working with anyone else.”

Over the last almost 4 years that I have been a nurse, I have cared for many children with all different types of diagnoses. I truly believe that every patient that I have taken care of has impacted me in some way. I would be lying if I said there aren’t challenging days, but the kids and families that I take care of, along with my amazing coworkers, make it all worth it.

thoughtful mertA patient of mine who has taught me many life lessons was Meredith. Meredith was diagnosed with Acute Myeloblastic Leukemia in November 2012 when she was 18 years old. I was assigned to be her nurse the first day she was on our floor. I knew we would quickly become close; her personality was absolutely contagious. I cared for Meredith, also known as “Mert” or “Merty” nearly every shift I worked, becoming closer to her as time went on. Not only did I get to know Meredith during her treatment, but I also grew close to her family. Meredith’s parents and siblings were always at her bedside, caring and fighting fiercely with and for their loved one. Mert not only had the constant support of her family, but also her friends. The love and support of Meredith’s friends during her treatment was incredible. They came after school, to keep her up to date with the latest gossip and fashion (which would then be relayed to me), had Gossip Girl marathons and pizza and movie nights on the weekends. Even fighting cancer, Meredith was the life of the party.

Mert finished her treatment in May, went to prom, attended her high school graduation, and began her summer before she was off to Emory University. Her summer was halted when Mert found out during a routine check-up that her cancer had returned. It was an unbelievably devastating day but, just like before, Mert was determined and courageous and knew she was going to fight back hard, regardless of her fear. During the next several months Mert received more chemotherapy, fought vicious infections, and received a bone marrow transplant. Meredith also spent a lot of her time in the PICU, where I would visit her as often as I could. After a long and challenging several months, Meredith courageously lost her battle in November 2013.

Rema and MeredithAlthough I only knew Meredith for a year, she will forever affect me. There are not enough good things I could say about her. She was thoughtful, beautiful and intelligent. She always knew what was going on with her treatment and her body, and always asked questions. She did homework while stuck in the hospital – often scoring much higher on tests than anyone else in her class – and despite the fact that she was hospitalized most of her senior year, she graduated high school without a problem.

Meredith was a fashionista, a singer, and had a wonderful sense of humor. She always kept me up to date on the latest trends, would sing hours of Taylor Swift with her friends (and often times to Dr. Hayashi), and would walk around the floor talking in the infamous British accent she would break into when on Morphine.

Meredith was genuine, loving, and outgoing. The day that I came in to tell her I was engaged, she wanted to know every detail of the wedding planning.

Meredith was courageous, determined, and fearless. Although she knew she had a tough road ahead of her, especially after her relapse, she never complained, never gave up, and always chose to fight for her life.

Mert Boyers lakeMeredith will never know exactly how much she impacted my life or the lives around her. She may have thought that I was helping her, but in reality, she was helping me in so many ways. Being a hematology/oncology nurse can be challenging, but seeing how I can make a difference in the lives of my patients and their families makes every hard day worthwhile. Their hope, their strength, their courage and their determination is incredible. They are the bravest kids I’ve ever met, never quitting, even after the hardest day. Getting to know my patients and their families keeps me coming back for more. Every patient has impacted my life and career in some way, making me realize I should never take a single day or a single person for granted, and I am truly honored that I can take care of them day after day.

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