Tag Archives: pediatrics

Grief and Gratitude: A parent’s perspective

Each month at St. Louis Children’s Hospital, a team reviews a number of nominations for a nursing award called the Daisy Award. Doctors or nurses typically nominate their coworkers for this recognition, but one recent nomination came from a parent. The words Colleen Miller wrote so beautifully illustrate the love and care the staff at St. Louis Children’s Hospital have for each patient, and the unparalleled love and dedication the staff see in the families who entrust them with their most precious gifts. With Mrs. Miller’s permission, we are sharing her letter of nomination. 

I am a nurse. A proud graduate of the old Jewish Hospital School of Nursing. I have been on the WashU Med Center campus for over 21 years. I have worked with adults in a variety of settings and seen many things over the years…some tragic and some wonderful. I have cracked ribs doing CPR, I have watched people die and watched people survive.

During all my years as a nurse I have never witnessed a more amazing group of dedicated professionals than those in the CICU and 7W.

image7Our only child was born via IVF in 2010. She was a much prayed for blessing who lit up our lives. At the age of 6 months, two days before Christmas, a fever and wet cough led to a chest X-ray in the ER. Our lives changed forever when we were told Layla’s heart was significantly enlarged. I worked cardiac, I knew what dilated cardiomyopathy was.

She was immediately taken to the CICU. When I handed her over to the nurse, I knew those hands were the best I could have placed her in. This was the night we first met Dr. Allan Doctor. His calm demeanor and thorough explanations made this awful experience the best it could have been.

Layla spent her first Christmas in the CICU. Her first glimpse of Santa was from her hospital crib. She was anointed on Christmas Day by Fr. Gray. By New Years we were out on 7W digesting all that was happening and all that was to come. 11 days after her admit, we blessedly took her home.
Over the years Layla had a number of stays in those two units. Each admit was difficult but all the while we knew we were blessed to have these wonderful people caring for our most precious gift.

By August of this year, at the age of 4, Layla’s heart was in need of more advanced treatment.

The time had come that had always loomed over our heads.

The time we feared the most.

The time we knew, that from here on out, my husband and I had zero control of what lay ahead.

Layla went into cardiac arrest during her cardiac cath on August 27th. Despite the amazing efforts of everyone, Layla passed away 11 days later. This time her 11 day admit ended with her going to her forever home.

She left this world the same way she came in…myself, my husband, a doctor and a nurse in the room.

Instead of the utter joy and elation when she arrived, this event was full of unbelievable grief and despair.

There are many things I will remember and learned from this last visit….

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I learned that when Dr. Canter rolls his eyes at you it means he likes you. I must be his favorite person.

I learned that many of the doctors watch the monitors in real time from home in the middle of the night and call with concerns.

I will remember the nurse who spent time with Dada and grandma washing Layla’s hair after the EEG machine was removed.
I will remember the nurse who put a bow in her hair. No one could wear a bow quite like Layla.

I will remember Mary Mehegan, RN, being in the room when we were told the damage Layla’s brain had suffered was too much…that our hopes to be listed for a transplant were gone….that we would not be taking our little girl home. She was crying along with us.

Mostly I will remember the final day. I will remember Dr. Doctor coming in on his day off, a Sunday morning, before he took his own children to Sunday school to be with us when we stopped the meds and pulled the ventilator….knowing it was like coming full circle as he was there the very first night of this journey.

I will remember Alli. Oh Alli, such a difference she made. She was only with us the final two days but she was placed there for a reason. Words cannot express the compassion she showed.

Alli stopped the IV meds, Alli pulled the breathing tube and Alli cried with us like she had known Layla forever. Like she knew her as the spunky smiling girl we did. She knew how much Layla was loved and how she will be missed so terribly.
At a moment in time that will be forever ingrained in our hearts…Alli will be there.

image6I had mentioned in passing at one point that Layla always preferred to be on my left hip and over my left shoulder. When she took her from me for the last time, Alli said “She liked the left shoulder, correct?” She placed my most precious gift over her left shoulder and walked her down to the OR for organ harvesting.

Watching Alli walk away with my sleeping doll over her left shoulder, snuggled in a blanket was a moment that cannot be described. Unbearable grief yet blessed and full of gratitude.

This was not how Layla’s story was supposed to end, but as usual, she had her own plans. Her time here was brief, yet poignant.

She was so loved by so many.

She lit up the room with her smile.

She taught many lessons to all who met her…whether to be a better parent, to not sweat the small stuff, to appreciate every little accomplishment or to fight like crazy with a smile on your face.

Some people live 80 years and don’t make an impact. Layla did it in just 4.

For us… Alli did it in 2 days. Our gratitude is unending. Thank you Alli, from the bottom of our broken hearts. You made a difference. You made the end of this journey a little more bearable…a profound accomplishment by simple gestures that will stay with my family forever. You should be commended for your dedication and amazing care during the most difficult time of our lives. You will never be forgotten.

“Hope anchors the soul.” Hebrews 6:19image8

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.

“One of a kind kid” inspires occupational therapist

Nicole Weckherlin joined the team in the Cerebral Palsy (CP) Center at St. Louis Children’s Hospital four years ago. She spent the decade prior working with kids with CP in the school system. As an occupational therapist, Nicole says these children have always motivated and inspired her, because therapy can make such an impact on their lives. Jansen is one such child.

We always say the greatest resources that we pass onto our patients are the ones patients have given us. Jansen and his family truly embody this.

NicoleJansenJansen has been a patient here for quite some time.  He has a diagnosis of spastic quadriplegic cerebral palsy and is dependent for mobility, transfers and self-care.  While he may be a very involved kiddo, his family surely doesn’t treat him like that, nor does he treat himself like that.  They have high expectations for him, and he certainly gives it right back to them. To say the least, I’ve been so impressed with him and his family.

Jansen and his family live about three hours away with an incredible community around them.  Recently, his community put on a huge fundraiser to help Jansen and his family. After collecting the proceeds, his family then turned around, came to our clinic and presented us with two iPad Modular Hose mounts. Jansen has one and whenever they come to the hospital, people stop and ask, “Where did you get that?” So here’s a family that took the opportunity to use their own situation to help others. Jansen’s mom simply asked that we find a good home for them, seeking no acknowledgment or anything in return.  This family has also donated other equipment such as Jansen’s stander and gait trainer for others to use. What a great example of paying it forward.

Jansen’s family truly defines what we at the Cerebral Palsy Center have hoped for: that their appointment is not just a doctor’s visit, but the chance to become part of a network and a community. We can give advice, information and consultation, and while perhaps there’s a level of expertise we may have, we haven’t lived the day in and day out taking care of a child with special needs. That’s a well-needed and invaluable perspective.

Jansen, though living with special needs, is a bright little guy with the coolest sense of humor. Once when at a Botox treatment, Jansen brought his Spiderman figurine to help him be strong for his series of shots. As a huge superhero fan, Jansen showed us powers of his own, bravely taking on the shots without any fear.  Afterwards, when asked if it hurt, he stoically replied, “I’m Spiderman, of course it didn’t hurt!” Only Jansen…he’s a one of a kind kid.

Transporting precious cargo

Tiffany MellenthinTiffany Mellenthin, RN, joined the St. Louis Children’s Hospital team in 2012 as a nurse on a critical care neonatal/pediatric transport team. In addition to having six years of experience in emergency/critical care, Tiffany also has a 3-year-old daughter. Almost immediately after completing orientation, she encountered a situation that made her realize how life can change in an instant.

I was on my last week of orientation with the transport team in March of 2013 when I met the Mazzola family. My partners and I were dispatched to an outside hospital to pick up a previously healthy little girl who was just diagnosed with a brain tumor. Her name was Abigail, and she was around 3 ½ years old – about the same age as my daughter. That is something that has definitely struck a chord with me since I joined the team: how a child can be ‘fine,’ and then all of the sudden develop this huge problem. It doesn’t seem fair. And the fact that she was so close in age to my daughter hit a little closer to home for me than some of our other calls.

My partners (Erin Juenger and Amy Henschen) and I arrived at the outside hospital to find Abigail finishing her MRI. We spoke to her clearly distraught parents, and tried to do our best to explain what was going to happen next for their family. As a mother, I really felt for Abigail’s parents, and tried to make sure they understood everything we were going to do before we left. Both of Abigail’s parents rode with us to Children’s, and we let her mother ride in the back to stay close to her. Amy and I explained everything we were doing, and what she should expect when she arrived at the PICU. When we arrived at Children’s, multiple things were happening, not only in Abigail’s room, but in other areas of the PICU, as well. I stayed with Abigail’s parents and tried to answer questions the best I could while they settled Abigail into her room.

Abigail leaves St. Louis Children's Hospital after surgery to remove her brain tumorBefore I left the unit, Abigail’s mother came up and hugged me with tears in her eyes. She told me I was an angel, and that we had just saved her daughter’s life. After Abigail’s surgery and while she completed rehab, I made a point to see her, and was amazed at her progress. Right before Abigail was discharged home, she ran up, hugged me, and said, “Thank you.” Those are the types of moments that make me and my wonderful co-workers on the transport team love what we do.

The Mazzolas are an amazing family. They were always at their daughter’s bedside, and have even done some amazing things to pay it forward, raising money for other patients in the hospital. It’s such an incredible thing to know they went through such a traumatic life experience with their daughter, and because of the care that was provided at St Louis Children’s Hospital, they want to turn their experience around and help others.

Working on the transport team, we see families at some of their most vulnerable times. We are sent to pick up children who have suffered a traumatic event of some sort, whether an accident, relapse in a disease, or something unexpected. It reminds me daily that anything can happen at any time, and definitely helps remind me to be thankful that my daughter has so far been healthy. I can’t help but think about how blessed most children are and, more importantly, how things can change in a second.

Abigail’s mother, Erin, recently wrote about the impact Tiffany and the rest of the transport team had on her family:

“One of the transport team members, Tiffany, made it a point to visit Abigail the entire time we were in Children’s.  She had told me that she had a 3-year-old daughter herself and I think was alarmed at our story.  In a way, I think her visits helped her to heal as well, and to close the chapter on her book that everything was going to turn out ok.  I think these people are the ones that are so easily forgotten, but in a way, they are the ones that take you to safety.”

Today, Abigail is doing well. She recently graduated from kindergarten, danced in a recital, and caught a fish with her dad.Today, Abigail is doing well. She recently graduated form kindergarten, participated in a dance recital, and had a successful fishing outing with her dad!

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