Tag Archives: parenting

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.

“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!

Defining Miracles

Chris Hoover, RN, BSNChris Hoover has more than 22 years of experience as a nurse, specializing in women’s health, labor and delivery, family planning and high-risk obstetrics.  An experience during the birth of her first child inspired Chris to choose this career.  The labor and delivery nurse caring for Chris had such compassion and kindness that Chris decided she wanted to do the same for others.  She went back to school, earned her nursing degree and was lucky enough to work in the same labor and delivery unit she had delivered in years before with the very same nurse who inspired her.  Two years ago, she joined the Fetal Care Center, a collaboration among St. Louis Children’s Hospital, Barnes-Jewish Hospital and Washington University Physicians.  As a nurse coordinator, she works with families facing enormous uncertainties in their pregnancies, many of whom have had a major impact on her life and career.  Today she tells From the Bedside about one such family, the Mannings, one of the first families she met after joining the Fetal Care Center team.

Dr. Joanie Rosenbaum’s question was anything but simple.  “What would a miracle look like to you?”  For Matt and Brejida Manning, the answer came quickly.  Matt’s words were spoken quietly but with much emotion, “To hold our baby girl alive.”  From that moment on, the goal was clear.

The Mannings were one of the first families I met after starting at the Fetal Care Center.  I had worked in labor and delivery, so I got to know many families over the years.  But this was different.  Bre was 29 weeks when we first met her, and as a nurse coordinator I would spend extensive amounts of time with her and her husband, walking alongside them through one of the greatest challenges of their lives.

Their baby girl, Gracie, was diagnosed at 20 weeks with Trisomy 18.  Trisomy 18 occurs when there is an error in cell division which results in a third copy of chromosome 18.  This extra material is present in every cell in the body and is associated with the abnormal development of many of the baby’s organs.  About 50 percent of babies diagnosed with Trisomy 18 do not survive until birth.  Only approximately 10 percent of children with Trisomy 18 survive beyond the first year of life, and many of those who do survive, many have serious health problems.

The Mannings came to the Fetal Care Center after another institution had told them there was nothing they could do for Baby Gracie. Hearing Matt define their miracle that first day, was an “a-ha” moment for me.  Doing nothing was not an option!   There is always something we can do.  We can listen, educate, encourage, and support our families.  Listening is the first step in determining how we move forward with the family and identifying what they want for themselves and their baby.  When Matt defined their miracle for us, their goal became our goal.  The Fetal Care Center team was going to do everything we could to make sure they got their miracle.

Of course these cases can be controversial.  We talk about quality of life, but in this job you realize that’s so subjective.  How do you determine what is quality of life?  This is especially true when the child isn’t even born yet.  It’s my job, and the job of everyone at the Fetal Care Center, to give the family all of the information we possibly can to make sure they understand the impact of their decisions.  The next step is to support them in the decisions they make.  We always tell them that it is a process and we continuously evaluate and communicate about what we know and expect through the pregnancy and beyond.  The plan is individualized and is reflective of the parents’ wishes.  However, when we meet this baby, it’s like starting from scratch.  It’s time to reevaluate.  We try to anticipate what’s going to happen and what the outcome is going to be, but we never know until we meet the baby.

With Gracie, we certainly didn’t know what to expect.

Delivery day was very intense.  We had more discussions about the plan for Gracie and there were lots of expectations.  Emotions were mixed.  For Bre, she wanted to keep Gracie inside, because felt that she was safe as long as she carried her.  There was quite a bit of fear and anxiety and yet we wanted it to be joyous because it was Gracie’s Birthday!   Matt and Bre knew that whatever time they were to have with her was precious, so we wanted to celebrate that.  There were tears of fear and sadness, but there were also tears of joy that day.  In the midst of it all there was calm and the quiet strength in the knowledge that we were going to meet Gracie and she would tell us how to proceed.  The plan was that we would follow her lead.

When Gracie was born and she was handed her off to the Neonatal Intensive Care Team for evaluation and assessment.  Initially, she wasn’t doing very well and I wasn’t sure she would make it out of the delivery room.  The NICU team eventually took her to Bre and placed her in her arms.  As Bre was holding her, Gracie took a couple of breaths and then amazingly enough she started crying!  So we all breathed a collective sigh of relief, and said, “Okay then, apparently Miss Gracie wants to spend some time with us!” After that, I knew that whatever happened, Matt and Bre would have those beautiful memories of meeting, holding and kissing their beautiful baby.  That was priceless.

They were able to hold Gracie for about half an hour before she was transferred over to the St. Louis Children’s Hospital NICU with her dad and the neonatal team.  Baby Gracie was greeted in the hallway by her big brother, sisters, grandparents, aunts, uncles, pastor and friends as she took her first ride through the hallways to her own room.  These amazing people continued to support the family through the coming days of Gracie’s life.  Church services were held in the hospital Chapel and friends came to visit.  The outpouring of love was powerful to watch.  There were often lines of people waiting to see Gracie.

In addition to the many weeks we had spent getting to know the family leading up to Gracie’s birthday, we were able to spend more time with them after she was born.  Gracie was in our NICU for 40 days.  Every time I gave a tour to another family or if I had an extra minute I’d stop in and say, “Hi.” I knew my day would be better because I had been to see them.  Every time, I’d look at them in amazement.  They handled everything with such grace.  Before I met them, I wondered how I would handle something like that.  Putting myself in their shoes, I thought that I wouldn’t be able to breathe or function.  Now, when I think of facing something similar, I look at the Mannings as an incredible example.  You focus on what’s good and the blessings in your life and you make every minute count.  My new perspective is that you have to face the grief and demonstrate the kind of strength and commitment that Matt and Bre demonstrated.  They were clear in their goals and made sure that Gracie’s life mattered to everyone they came in contact with.  Gracie was a person, not a diagnosis. They showed so much courage, love and character that it gives me hope that I can honor that by doing the same.  The Mannings were the first, but they weren’t the last family that has, or will touch my life and change the way I look at things.  There have been many more since.  Each special in their own way, but I thank Gracie for teaching me so much in the beginning that I can now pass on to other families.  I am a better nurse, but, even more, I am a better person because of her influence.

On November 19, 2012, Gracie’s team decided she could go home with her family.  Her parents were taught to manage her care and she was set up with hospice services.  Gracie had a DNR in place for no compressions or intubation, but she received full comfort measures.  We received word on December 7th that Gracie had died peacefully.  While we’re all sad that Matt and Brejida did not have more time with Gracie, we are grateful for two months they had getting to know and love her.  And we’re grateful we got to know them and be a part of their community.  Sharing in the celebration of her life was a privilege.  Just as we celebrated her birth, we share in the sadness of her loss.

What I take away from my experience with Gracie, Bre and Matt is that when we help our families reach their goals, we succeed.  When we offer our support to them, we succeed.  When we touch the lives of even the littlest of souls, we succeed.  We just have to learn to measure success in a different way.  The challenge is to recognize those areas where we can make the most difference and take the first step to helping our families reach their goals and be a part of their miracles.

What would a miracle look like to you?  For Matt and Brejida it looked like this:

Gracie

Parenting Kids with Cancer

Debra Spoljaric always wanted to be a “baby nurse”, but after her rotation at St. Louis Children’s Hospital, she knew she was meant to work with kids with cancer.  She says she could tell right away that the nurses loved not only their jobs, but the kids, too.  She received her nursing diploma in 1991, and started working as a floor nurse with the hematology/oncology team at Children’s right away.  She became a full time pediatric nurse practitioner with Washington University in 2004.  She has dedicated much of her career to working with children with brain tumors, and shares her experiences with two patients and their parents with From the Bedside.

When people ask me how long I’ve been here, I tell them I’ve been around forever.  I feel like I have!  While I was working on my nurse practitioner degree, I was also working as a nurse with Wings, our pediatric hospice program.  And that’s when I fell in love with the brain tumor kids.

I’ve always had a heart for oncology, but as I was wrapping up my program, Children’s was hiring into the neuro-oncology position.  Initially, I thought, “I don’t know if I can do it.”  It would be 24/7, working in it, living it.  But the brain tumor kids are so inspiring.  Whether they survive or don’t survive, they always seem to embrace the life they choose for themselves.

So much of that goes back to their families.  I’ve not only encountered inspiring patients over the years, but so many inspiring parents – parents who are under enormous pressure to make life-altering decisions with huge consequences for their kids – and I’ve watched so many do it with enormous grace.

Morgan with her mom, KristinWe had one little girl, Morgan, who was diagnosed a couple years ago with a glioblastoma multiforme (GBM).  That diagnosis is almost always dismal.  Statistically speaking, patients don’t survive long term.  Her mom was essentially a single mom, and from the very beginning she was all about embracing Morgan’s quality of life.

Morgan’s mom was just the perfect mom, if you can say that about people.  Morgan was still disciplined, she still had a bedtime, she went to school, she said, “Yes ma’am.  No ma’am.”  GBMs are nearly always fatal, but that didn’t keep Mom from treating her child like a 4-year-old who would survive – which is what we, as a neuro-onc group, teach our families.  Until your tumor tells us otherwise, we’re planning for you to live to 120 years old.

Debra and MorganThis family embraced that, and from day one it was all about quality of life, moving forward with treatment, and making it through.  Morgan did great.  She responded well to therapy, and while she suffered a few deficits, she adapted to those changes.  She went back to preschool.  She embraced life.

She finished her course of treatment and would come back for routine scans.  Before she even started to show symptoms, though, our neuro-radiologists could see the tumor was starting to grow again.  At the time, we didn’t have any clinical trials open here, so we looked for options elsewhere, and sent the family to another hospital for an open trial.  But when Morgan got there she told her mom she just wanted to come home.  She wanted her team.  Mom, again, chose to put Morgan’s quality of life and her comfort first.

Morgan

They came back to St. Louis, and we threw everything we had at this tumor.  She responded well initially, but when it came to a point where things stopped working and Morgan didn’t want to come to the hospital anymore, we supported her mom in the decision to transfer care and send her home.

Morgan was 6 when she died peacefully at home.  But for the years she was alive, her mom allowed her to embrace her life.  She treated her kid like she was living, but also acknowledged when things weren’t going well and helped her through the challenges.  She was just an amazing, amazing mom.

"Benjamin the Brave" during treatmentWe had another kid, Ben, who had a different kind of tumor, but a similar situation.  Ben was diagnosed with a medulloblastoma, a tumor in the back of his head.  His prognosis was much better than Morgan’s, but his journey would be dotted with its share of hurdles.

From a provider’s standpoint, all we can do is provide the nuts and bolts of it.  We provide the information, but parents have to make the decision and live with it for the rest of their lives.  Ben’s mom was also wonderful at hearing what we had to say, processing it, and choosing what was best for her kid.  She researched the options, and chose what she felt was in her family’s best interest.

Ben and his sister during treatmentMeanwhile, though, she’s managing the same everyday struggles that overwhelm even the best of us.  She was a single mom raising two kids, living with her parents, trying to work, coming here – then throw in the financial stresses of therapy co-pays and special eating needs and ER visits for fevers – but she handled all of it, and is raising a well-behaved, well-mannered young man who still has time to act like a kid.

Ben todayBen’s doing well today.  He’s taking Tae Kwon Do, and is improving.  He still has issues, gets tired, etc.  He’s about three years out, and there are always little bumps in the road.  But mom is grateful for the knowledge and answers we can provide, and recognizes that this is lifelong.  There are late effects from his treatment, but she embraces that, and understands that sometimes we don’t have all of the answers.  Together, though, we’re still a team, and we’re working on it.

In my time working with oncology patients, I’ve seen a child with liver cancer who was given a 1% shot at survival make it.  I’ve also seen a girl with a type of leukemia with a 90% cure rate die.  Those are the reasons I tell my families that statistics don’t mean anything.  And these are parents who took that to heart, and raised their kids like normal kids.

We tell our families you have to focus on today.  But it’s easy for me to sit here and say that, because I’m not living your life.  We’re hoping for tomorrow and planning for tomorrow, but just like parents of perfectly healthy children, you can’t let your kids take advantage of you because they know they can.  Set limits.  At the same time, take them for an ice cream cone and let the laundry sit for a day.  Go to a movie.  Snuggle with them.  Because if you’re raising good kids, who really cares about the dishes in the sink?

In 2010, when Ben was nearing the end of his treatment, he documented his time at St. Louis Children’s Hospital using the “Kid Cam”.  The resulting video is a look at Ben’s experience through his own eyes.

 

 

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