Monthly Archives: September 2013

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.

 

 

From a Pediatric Cancer Nurse: “Why I take my work home.”

When Luke Hofmann was in college, he thought about going to medical school.  But when it came time to pick a profession, he knew he belonged elsewhere.  He went on to nursing school, like his mom and grandmother had done before him.  Since then, he has worked on the hematology and oncology unit at St. Louis Children’s Hospital.  He shares with From the Bedside his experiences with two remarkable families he’s cared for over the last three years.

During nursing school, I did my pediatric clinical at Children’s and I knew that was where I wanted to work. I enjoy the opportunity to take care of not only the kids, but also their whole family.  I’ve always had a tendency to seek out challenges.  The bigger the challenge, the bigger the opportunity to make an impact.  Naturally, working with kids who have cancer presents a lot of challenges, so working in oncology has turned out to be a great fit for me.

While we like for kids to be at home as much as possible, sometimes they just have to be in the hospital.  Unfortunately, some kids have to be admitted on the floor for long periods of time.  As a nurse, this allows me to get to know some of the families.  That’s my favorite part of my job.  I enjoy building the relationships with the kids and families.  Nothing is more rewarding than gaining the trust of a kid and their family.  Cancer is scary.  All the medicine, procedures, time in the hospital, etc. is tough stuff.  But I enjoy being there for them from the beginning to the end…no matter how it ends.  I take a lot of pride in building those trusting relationships with the kids and their families.

I think one of the most important times for an oncology nurse is when a kid gets diagnosed.  The families are in shock and their world is turned upside down.  I take a lot of pride in being able to give them that bit of reassurance that we are going to do everything we can to help them.  When a kid or a parent is having a really rough day, I enjoy being able to go in and sit and talk with them and give them the support they need.

I’ve been at Children’s three-and-a-half years, and I’ve taken care of so many kids that I’ll never forget. They are all inspirational to me.  I wish I had time to talk about them all.  But there are two that really stick out in my mind, Brandon and Cory.

Luke and Brandon

Brandon was diagnosed with leukemia when I first started as a nurse.  In fact, he was one of the first patients I took care of.  I could relate to him right from the start.  Brandon and I are very similar in many ways (even though he was 6 and I was…well, a lot older).  In fact, over the years his mother has come to call him my “brother from another mother.”  We both love hockey and we both like to cause a little light-hearted trouble every once in a while.  Those are two things that led to our favorite activities in the hospital, hallway hockey and squirt gun fights.  What I really liked about Brandon was that he was such a tough kid and that he had this quiet intensity about him.  He took on every challenge like it was nothing.  And that’s how he fought cancer.  You would never even know he had cancer unless he told you.  He was determined to not let it hold him back.  It’s inspiring to see such toughness and determination from a kid who was just 6 years old at the time.

While Brandon was receiving treatment, I became good friends with him and his family.  Brandon is now 10 years old and doing great.  The past two years, he has helped me raise money for the St. Baldrick’s charity (which focuses on funding research for pediatric cancer) by shaving my head.  Last fall, Brandon finished the last of his treatments.  When kids are done with therapy, they get to ring a big bell we have hanging up to celebrate.  Watching Brandon ring the bell is one of my favorite moments in life.

The other kid I always think of is my friend Cory.  Cory was diagnosed with rhabdomyosarcoma in the fall of 2010.  He was the sweetest kid. He was always very calm and had this gentleness to him.  He was the biggest Cardinal fan I’ve ever met.  I loved hearing him talk about the Cardinals.  They could have never won a game, and he would have been cheering for them anyway.  And, I swear, in 2011 when the Cardinals were 10 games out of a playoff spot late in the season, he predicted they would win the World Series.  Cory had the best smile when he was laughing.  He would try not to laugh at my dumb jokes but he put up with me, and when I could get him to laugh, it always made my day.

One of the things I loved most about Cory was his family.  He had his mom, dad and sister, and they were awesome.  Cory was the best big brother to his sister, who he always looked out for.  His sister would be bouncing off the walls and he would just roll his eyes at her, but they adored each other.  His mom was always very composed and tough and his dad was such an incredible dad.  I’ve never seen a father and son as close to each other as they were.  They took great care of him. That family always amazed me.  It’s humbling just to see how tough and composed they were.

Luke and Cory

Unfortunately, Cory lost his battle to cancer in July 2012.  I had the privilege of taking care of him and his family during some of his last days, including the day he passed away.  Days like that are incredibly tough as a nurse, but it is truly a privilege to be there for families during those times.  Words can’t express how honored I am to have gotten to know Cory and to have been his friend.

Brandon and Cory are just two of the kids that I think of every day.  There are so many more, too.  I could go on and on about these kids.  They are just so amazing.  Occasionally people will ask me, “Isn’t it hard not to take it home?”  I always ask them, “Why wouldn’t I take it home?”  If I didn’t take it home with me, I don’t think I would be doing my job very well.  There is certainly a degree of separation one must have at times as a nurse, but I don’t go into work to clock in for 12 hours and then go home.  I want to be there for these kids.  I’m invested in them and their fight.  I am inspired on a daily basis by the kids I get to take care of.  The day that I don’t “take it home” with me to an extent is the day that I will look for another job.  These kids and their families deserve the best from me.

I work with some amazing people.  We are always asked how we can work with kids with cancer because, “It’s so sad.”  I think each nurse has his or her own response to that, but it’s generally a question I just brush off.  It’s a calling.  It’s something I don’t think twice about.  Is it sad at times?  Yes, but it’s also inspiring.  If I have a sad day at work, it only makes me more motivated to come back the next day.  I’ve seen so many amazing moments of humanity, it gives me goose bumps just thinking about it.  Why wouldn’t I do this job?  I don’t ever question my choice in career. I can’t see myself doing anything else, to be honest.

So when people ask me why I do what I do, it’s an easy answer.  It’s for the kids.  It’s for Brandon.  It’s for Cory.  It’s for all the kids I get to take care of.  I am lucky to have this job and get to be around these kids and their families everyday.

Carter’s Song

Brittany RichardsonBrittany Richardson began working as a nurse at St. Louis Children’s Hospital while she was also finishing her master’s degree.  She’s now a pediatric nurse practitioner with Washington University School of Medicine on the hematology/oncology unit at Children’s.  When she was still a bedside nurse, Brittany met Carter and his family.  She tells From the Bedside about the impact he made on her life, and the difference he continues to make for the patients she treats today.

I have heard people say, “Once you’re born and bred heme/onc, you’re always heme/onc.”  I think it’s really true.  Once you enter this profession and get to know our kids and their families, they become a part of you, and your life changes forever.

I met Carter after I began working on the 9th floor.  He was undergoing treatment for relapsed leukemia.  I got assigned to take care of him several times, and I absolutely fell in love with both Carter and his family.  He was spunky and absolutely adorable.  He was full of joy and giggles, and his family was accepting of me and grew to trust me as their nurse.

Carter and PupPupI can vividly recall a CD that we would play over and over again in his room.  It contained a song that had been written just for him containing his name and lots of things about Carter that made him Carter.  We would sing it over and over again.  I’d always joke with his mom that after a night shift, I would wake up singing that song!

The nurses knew the names of all of the stuffed animals that would share his bed.  They had personalities.  So when you were taking care of Carter, you were also taking care of PupPup and his other fuzzy friends.  He had special blankets too, and we all knew to make sure that Carter’s feet remained poking ever so slightly out of the blankets.  (This became so important in Carter’s final days with us.)  I knew that his mother and father loved that the nurses knew these things about him.  I think that demonstrating our willingness to go the extra mile to make Carter feel at home meant so much to his family.  I also think that knowing the names of stuffed animals is one of the many joys of being a pediatric nurse!

Carter had a lot of serious complications and became very ill.  This was an extremely scary time for his family, but they graciously allowed the 9th floor staff to care for them and provide them with support so that they could focus on being with Carter.  Every shift I spent caring for Carter – even the difficult ones – provided me with so much joy and admiration for the strength that their family had.  Carter was always smiling, even on the difficult days.  I hope that if I were going through what he went through, that I would be as happy and as delightful as he was.

The 9th floor staff is unlike any other.  We truly want to do what’s best for our patients and families and want to get to know them.  We do not simply just want to know your name…it’s more than that.  We want to know what you like to eat or drink when nothing else sounds appealing.  How do you want me to arrange the stuffed animals in your bed when I make your bed each day?  What corny jokes can I tell to make you laugh when you aren’t feeling well?  It is those little things that our floor tries to understand about our patients so that we can make this floor feel like home – because for so many of our kids, this is their home for awhile.

You hear a lot of families say, “you’re like our new family now.”  We value that so much.  Not everyone is drawn to this profession.  It truly takes a special heart.  For me, working in the field of pediatric hematology/oncology is not a job – it’s a calling and a passion, and it’s almost truly sacred.  People hear that you work with children with cancer and they say, “how sad and depressing.”  I think that statement couldn’t be further from the truth!  There are moments of sadness and moments of grief, but with those come so many moments of joy and happiness.  It is an honor to walk with a family during such a time of crisis in their life.

Carter spent his final days in our wonderful Intensive Care Unit.  I would often go visit him before and after shifts to spend time with his family and provide a familiar face.  There were many times that I just quietly sat near Carter and held his hand, or I simply just fluffed his blanket so that his tiny toes were peeking out a bit – just like he always liked them to be.  Carter’s journey ended there, but his warm spirit and loving personality lives on with me and the other staff members who knew him well.  I think we can all say that we are better nurses after caring for him.

Carter in GardenI am so proud and honored to do what I do.  My work isn’t always easy, but it is absolutely always worth it.  The families I have met have changed my life and have made me the nurse that I am today.  Isn’t it amazing that, while going through the hardest time in one’s life, one is able to teach someone so much about love, gratitude, and hope?  That is exactly what Carter and his family did for me.  I smile every time I think of him – especially when Carter’s song pops into my head.  That is one song with a tune and lyrics I will treasure forever and certainly will not ever forget.

Childhood Cancer Awareness Month: Cause for Hope

Jenn WoffordJennifer Wofford works as a pediatric nurse practitioner for the divisions of hematology and oncology with Washington University School of Medicine at St. Louis Children’s Hospital.  She received her Bachelors of Science, Nursing degree in 2003 from St. Louis University.  After working with pediatric cancer patients for four years, she shifted to nursing in the emergency unit.  When she received her master’s from the University of Missouri St. Louis in 2009, though, Jennifer knew she wanted to dedicate her career to working with children with cancer.  She joined Children’s shortly thereafter, working both directly with patients and in clinical research at Wash U.  She serves as the member at large and on the steering committee of the Children’s Oncology Group (COG), the world’s largest organization devoted exclusively to pediatric cancer research.  Jenn says a number of families have impacted her career and her life, so as we head into September, which is Childhood Cancer Awareness Month, she talks to From the Bedside about two of the most recent. 

My passion for hematology/oncology goes back to my childhood.  When I was 7 years old, I had a tumor.  I was treated at Children’s, and while I was here, I told my mom, “I want to grow up to be a nurse at St. Louis Children’s Hospital.”  I think my mom reacted like any mother does to the career ambitions of a 7-year-old.  It was my version of saying, “I want to grow up to be a ballerina.”  I think she thought it would pass.  But I knew then I not only wanted to grow up to be a nurse, but a nurse for kids with cancer.  I was lucky that my tumor wasn’t cancerous, and they were just able to surgically resect it.  But from that experience, I knew I could relate with these families.

Having been in this field for a few years now, I’ve heard the phrase, “I can’t believe you do pediatric oncology!” more times than I can count.  But I find it so reassuring to work in a field where I can respond with facts like, “95% of certain types of leukemia are curable.”  So few people realize the hope we see each day.  I love being a part of that process.  I love being able to know that every two weeks I’m going to see a patient.  It’s unfortunate that they’re here for therapy, but then I get to look forward to the point where I see them every three months because they’re just here for follow-up.  Then it’s every six months.  Just yesterday, someone came up here to visit because they were getting ready to start college in a week.  And I feel like that’s so rewarding.  You don’t hear an orthopedic doctor say, “Oh, that mended broken leg, they came up to tell me they were going to prom last week,” or see a patient who was 6 months ago in the ICU and is now up here, getting ready to start 2nd grade next week.  As hard and as challenging as it is sometimes, it would be a lie if I didn’t say it’s one of the most rewarding jobs ever.

Jenn and Galen

It’s so hard to identify just one family or a single patient that has impacted my career and my life.  I feel in so many ways, different families impact different facets.  Every day, I encounter special circumstances.  I have a very large population of teenage boys diagnosed around the same time.  They were all on the same treatment schedule, and I just got to know their families so well.  I feel like I have this bond with all of them.  One has had a really rough go of it, and he’s been admitted now for what feels like months.  I know Galen waits for me and hears my voice, and I see his head poke out in the hallway.  Not once have I seen him with his spirits down about this.  He’s had it harder than so many kids, but he has a smile on his face.  He knows this is a challenge that he’s going to get over, and he’s ready to face it full on.  It brings so many things in my own life into perspective.  I don’t think any of us can say that life is 100% how we planned it or expected it, and not every day goes perfectly.  But when you see things in the grand scheme, and look at challenges that could appear so insurmountable, it makes a lot of everyday problems seem like tiny little anthills.

Galen came in several weeks ago just very, very sick, and went to the ICU.  At that moment, you are on the brink of, “This is as bad as it can get.”  But he’s pulled through, and he’s up here on the floor smiling right now.  It really does give me hope in a lot of different things.  He’s an amazing, remarkable person.  There’s a little girl down the hall right now, and I was talking to her yesterday.  And Galen wanted to know why I didn’t come in to his room and talk to him like I did her, joking around.  It’s just little things like that.  To have a 4-year-old look at you and remind you, “I’m bald right now, but it’s going to grow back,” puts everything in perspective.  When kids that are bald begin to look more normal than kids that have hair – I feel like I know this is my calling in life!

A few days ago, a patient who is 18 got a severe infection in her arm, and orthopedics needed to come up here and evaluate her.  They decided they needed to tap the joint, and they needed to do it emergently.  The patient had asked if I would stay and if her nurse would come in and be there with her.  There wasn’t a question.  Of course I would be there, and of course her nurse was going to be there in the room for her.  And she did fine with it.  The orthopedics doctors couldn’t believe that we were there.  That just goes to show how unique this field is.  Nurses will stay past their shift.  They’ll ask another nurse to watch the rest of their kids because they need to be with one child.  We were all crunched on her bed, and I think she did better knowing there were nurses in there with her.

There are days when you leave work and think, “What a horrible, horrible day.”  But there’s never ever, ever been a day that I can say I left here and thought, “I wish I wasn’t a nurse.  I wish I didn’t do pediatric hematology/oncology.”  There are days I wish I’d been less busy.  There are days when I wish things had been different.  But not one day has ever passed that I’ve wished my career choice has gone differently.  There is so much more hope than people think.   It isn’t always sad.  We are on the brink of so many new things.  We’re looking at the link that genetics plays in cancer, looking at the whole use of targeted therapy in treatment.  To be able to use an agent that isn’t toxic to every cell in the body, but can go in and just target the one particular thing that’s causing the mutation in the cell is really no longer something that is a pipe dream, but is something that is so close and around the corner right now.  We really are closer than we ever thought.  And if these kids can be that hopeful and happy throughout all of this, then there’s no reason for us not to be hopeful.

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