Tag Archives: brain tumor

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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