Tag Archives: health

Working among heroes

Dani Brewster, RN, works as a nurse on the hematology/oncology floor at St. Louis Children’s Hospital. Over the years, she and her coworkers have repeatedly heard different versions of the same question: “How can you work somewhere so sad?” According to Dani, “sad” is the last word she would use to describe her job. She tells From the Bedside about one very special young man, SuperSam Santhuff. SuperSam was Dani’s neighbor before he was her patient, and his story was told throughout the second season of The Frontline for Hope.

As a child, the word “cancer” was a part of everyday life for me. My younger cousin, Dylan, fought his battle with leukemia with the utmost of determination. Although I was young and sheltered from many of the scary things he went through, I heard about these wonderful nurses and doctors who stood by his side throughout it all. They were amazing in my young eyes; almost like superheroes helping him in his battle. Little did I know how very wrong I was. Spending one day, even one hour, on a pediatric oncology floor can make one realize just who the superheroes really are.

photo 2I have learned more about life and how I should live it from these little ones than I can ever thank them for. Sam Santhuff, or Super Sam as many know him as, and his family are no exception. The Santhuff family and I were neighbors when Sam and his twin sister, Ava, were babies. We were reunited when he began treatment on our floor for Rhabdomyosarcoma. That reunion with Sam and his family would change my life forever.

Sam went through eight months filled with numerous rounds of chemotherapy, proton treatments, radiation, and six surgeries before relapsing with this monster of a disease days after they had declared him disease free. He continued his battle through more chemotherapy and a bone marrow transplant. Sam’s battle with cancer ended September 14, 2014. But I refuse to say this young man lost his battle to cancer. In so many ways he conquered and rose above what cancer tried to drain from him. He rose above it, touched lives through it, and is now with the God he spoke so freely about… cancer free.

This is Super Sam through my eyes…

Sam, at his young age, faced the weight of cancer with the soul of someone much older than himself. His faith was miraculous. For such a young boy to be able to speak so openly about God and the place he holds in his life puts my actions of faith to shame. He didn’t speak of God as a “side note” or someone he heard about. He spoke about him with intention, as someone who he relied on to get him through the day. I struggled my whole life placing my worries in God’s hands as I was told to, but Sam, at the age of 6, has shown me how.

photo 1His sense of reasoning was astounding for such a young boy. Through pain of injections, nausea, long hospital stays or just plain crummy days, he could reason that these things had to happen for him to get better. This reasoning would be a battle for a mature adult.  Through this reasoning and understanding Sam also taught me a valuable lesson as a nurse… to slow down. Sometimes the tasks of the day just consume you as a nurse. You think that the only way to get through the day is by going 60 miles a minute and doing five things at once. The more and more I took care of Sam, heard his questions, and saw the comfort a little discussion about a shot or medication could bring, I realized how much a little patience and explanation could make on a little one’s day.

Sam’s giggle was contagious. And yes… throughout all of these treatments I heard this giggle often. How amazing…He laughed in cancer’s face. With every smile and every giggle he might as well have looked at cancer and said, “You didn’t win today!” Preceding these giggles was usually a witty remark that would make everyone’s day a little brighter.

photo 3And last, but certainly not least, Sam’s heart is indescribable.  I was about to give him a shot in his leg to boost his immune system cells one day when he gave me a beautiful flower he picked out himself. He wasn’t thinking of his battle… he thought of me that day. He wasn’t thinking of the battle he just had with cancer at the hospital, either, when he insisted on helping a homeless individual on his way home another day.  He faced more stresses in a day than you or I could ever comprehend; yet, he took time to think of others and to love others like we all should.

Sam’s battle grew stronger and stronger but his character never changed. He continued to give out “beef cake” hugs to those who loved him even through the pain. He was more concerned about the young boy coughing in the hallway, wishing he would get better, than worrying about the results of his final PET scan. Sam was a young man mature beyond belief, full of strength, full of faith, and full of love. He was witty, quite the jokester, and could light up the room within a matter of minutes. He was brave, polite and courteous, yet impeccably strong-willed. Sam was completely selfless. I have never met another individual who challenged me more to be a better person. He challenged me to slow down and embrace each moment in my day, to find faith, to love others and put them above my own struggles, and to smile in the midst of an awful day. Sam will make me a better nurse.

The little souls that wake up each morning determined to fight, they are amazing to me.  A giggle coming from the room down the hall, the sound of a motorized tractor making its rounds around the hallway, the faint drone of Mario cart on the wii, a ringing bell, these are the sounds of heroes not letting cancer win that day. I have heard too many times, “Isn’t it hard to work there?” or, “Isn’t that so sad?” To anyone who has ever asked, I am answering you with some questions of my own: Who wouldn’t want to work alongside their heroes every day? Who wouldn’t trade some hard days to have your life touched by some of the strongest, most inspiring individuals there are?

I wouldn’t trade this for the world.

 

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!

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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