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Through My Eyes: Behind the Scenes With Charlotte Pediatric Oncologist, Dr. Oesterheld

Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes.  Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer. 

  • Perspective: Pediatric Oncologist
  • Name: Dr. Javier Oesterheld
  • Hospital: Levine Children’s Hospital

Invested day in and night out in kids fighting cancer and their families, Levine Children’s Pediatric Oncologist, Dr. Oesterheld, took over on our social channels (Instagram & Facebook) on 9/17/19 to give behind the scenes thoughts and views into being a pediatric oncologist. He is passionate and he is real. Dr. O is dedicated to bring positive change to kids fighting cancer. 

Meet Dr. O

I’m Dr. Javier Oesterheld, Dr. O for short. I have both the best and worst job in the world. I’m the medical director for our pediatric hematology/oncology/BMT program at Levine Children’s. It is so hard at times to be a pediatric oncologist and be a part of the worst days of a family’s life. Telling a parent that their child has cancer never gets easy. In some ways though, I’m happy to be the one sharing the news because I want the family to know how much we truly care. It’s an honor to be part of their journey throughout the good times and the bad. It’s a privilege to be trusted to provide this care. And it truly is the best job in the world when we get to see a patient ring the bell to celebrate their end of treatment.

It’s hard to describe the emotions I feel when patients come back for appointments looking healthy and strong. They’ve grown hair, they’ve grown taller, they are much more energetic…they look like different kids. But their fighting spirit, personality and strength is still the same as when they were sick in a hospital bed. Kids are resilient, man, and it’s pretty awesome. 

Because we walk alongside patients and families during some of the most vulnerable times of their lives, we grow very close. This may sound cliche, but it’s true: they become family. I have a beautiful wife and two amazing sons of my own…and a whole office full of patients who are also part of my family. This isn’t just a job. I can’t simply leave work at work when it’s time to go home. And nor do I want to, as I believe true empathy is a huge attribute in being a successful pediatric oncologist. I truly care about my patients, and I feel the wins and losses alongside their families. On the especially bad days, my world stops. When I get home, the only thing that helps me cope is hugging my own boys. 

I’d be rich if I had a nickel for every time someone said “oh wow, that must be so sad” when I share my profession. So what did make me decide to pursue medicine, specifically pediatric oncology? Growing up, I knew I wanted to be a pediatrician – no question there. I thought for a while that I wanted to be a pediatric neurologist. And then when I met this one kid in my residency – it just clicked for me. He was a teenager who was scheduled for a leg amputation the next day. I sat with him all night just talking and listening, and when I went home, I told my wife that I thought pediatric oncology was my calling. When I did my hem/onc rotation the following month, my thoughts were confirmed and I never looked back. Here we are, 18 years later. If you see a child go through cancer, you’ll be moved forever, and that’s what keeps me going day in and day out.

Painful Procedures

One of the worst parts of my job is putting a patient through painful procedures, especially younger patients that may not understand why. Ultimately, everything we are doing is to try to save their life – and I remind myself of that on a regular basis. I remind the parents of that too, as it is so hard to watch your child experience pain throughout treatment. A big focus of pediatric oncology is making everything as painless as possible, and I am proud that Levine Children’s puts such an emphasis on this. For example, we have numbing cream and cold sprays that put on in advance of a port access to make it a little better the child. We have a vein finder (pictured) that allows us to see the veins under the skin so we’ll get a vein on the very first try, which prevents extra pokes. We love that we have Reiki therapists who help with both psychological and physical pain. 

Vein Finder

But perhaps the best “tool” we have are child life specialists who are specially trained to help with the psychosocial aspects of a diagnosis like cancer. Paige is our child life specialist in our outpatient office, and Sharon and Andrea are our child life specialists on the oncology floor in the hospital. They will come to any procedure big or small and provide age-appropriate education so kids understand what is happening. The unknown is much scarier!. Child life specialists even help the kids perform the same procedure on a stuffed animal and make a plan with the patient to give the patients as much control as possible. They also provide distraction, so the child can focus on an ipad game or bubbles or whatever they like, instead of focusing on their procedure on the other side of the table. This helps immensely.

No matter what, our patients are always brave. And we always reward bravery. In working with child life, we’ve learned that the most effective way to do this is simply by positive praise! Sometimes we use tangible things like prizes, but we really want to empower these kids, and they respond really well to this. The whole team gets involved – from myself and other providers, to the nurses to the front desk…everyone cheers for our patients!

BMT With a Little Bit of Freedom

LCH BMT Unit

Just last week, we officially opened our expanded BMT and cellular therapies unit. It is a beautiful new space, right on the 11th floor under the watchful eye of our blood and marrow transplant team. We now have 8 specialized rooms (previously 4), and my favorite part of the new space is that our patients no longer have to stay IN their room for their entire admission. The entire unit, including all patient rooms, hallways and the play area are all HEPA-filtered, which clears out germs in the air.  We’re the only children’s hospital in Charlotte that can perform transplants, plus, we’re also one of the only spaces in the entire country that has a safe play space for kids. It may seem small, but it makes a huge difference.

When a child has a BMT or other transplant of some kind, we first give them an extremely high dose of chemotherapy that wipes out their immune system. That means the tiniest little germ can make these little patients extremely sick. To keep them healthy, they have to stay in the hospital until their immune system “grows” back, which can be anywhere from 2-6 weeks after transplant. Previously, they had to stay in their hospital room the whole time. Now, they can wander the halls and go into the playroom, full of toys, technology and more. This is just one way that we try to treat the child as a whole…not just their medical condition. Being able to play and interact with others is huge for a patient (and their family’s) psychological and emotional state. I believe being in a better mental state helps kids heal faster.

Long-Lasting Impact

I’m incredibly grateful to the Isabella Santos Foundation for bringing this state-of-the-art MIBG therapy suite to Levine Children’s. We have a patient in there today so I can’t show it to you “live,” so these pictures are from our grand opening event about 10 months ago. MIBG is a treatment for neuroblastoma and other solid tumors; it’s a painless treatment that involves a very high level of radiation that can only take place in a lead-lined hospital room with specialized equipment. As a result of the Isabella Santos Foundation’s generosity and fundraising, we’re one of just 20 centers in the country who can provide this treatment – really putting us on the map. This allows us to take a giant leap in how we care for children with cancer.

ISF MIBG Room

This therapy suite is extra special for me because I had the privilege of being one of Isabella’s doctors during her cancer journey. When it was time for MIBG, her family was uprooted and separated, as she had to go to another state for this treatment. Her legacy has made it so no other child will need to leave Charlotte for this type of care. What a true gift and longlasting impact.

Leading-Edge Treatments

We’re fortunate at Levine Children’s to be able to provide the most leading-edge treatments, including Phase I clinical trials. Before I became the medical director of the program, I led our developmental therapeutics (Phase I) program, so it is near and dear to my heart. We currently have 70-80 open clinical trials (Phase I-III), and our program is currently the primary investigators on three trials. Clinical trials are designed for all aspects of pediatric cancer: to improve survival rates, side effects, find the right combination of treatments, with the ultimate goal of less cancer and more time. We want to put every patient on a clinical trial because it’s in their best interest, and it’s also in the best interest of the greater good. Every child with cancer is a rare diagnosis, and we want to learn everything we can about the patient to help them and to help all of the kids that will come after them. I also want to be clear – being on a clinical trial does not mean your child is a “guinea pig.” Every single drug is tested on adult patients before pediatric patients, so we have a solid idea of its effectiveness before we ever provide it to a single child. Clinical trials all build upon each other, and cures are built on clinical trials. Every medicine that you’ve ever taken started as a clinical trial. A cool example in the pediatric cancer world is the CAR-T treatment for pediatric leukemia. It started 10-15 years ago as a clinical trial, and now it’s FDA approved…and we’re thrilled to say that it’s coming to Levine Children’s next month. It’s also important to note that we wouldn’t have clinical trials without philanthropic organizations like the Isabella Santos Foundation…so here’s a not-so-subtle plug to donate. Donations fund cures. 

No Child Should Have to Experience This

I’ll start here: childhood cancer is an awful disease and something no child should have to experience. We won’t stop until there is a 100% cure rate. But there has been substantial positive progress made over the years. In 1960, the survival rate for pediatric leukemia was 5-10 percent. Today, it is 80-90 percent. We’ve increased survival rates for neuroblastoma by 15-20%. Overall, 4 out of 5 patients who have childhood cancer will survive. That’s huge progress…although it’s not enough until we’re in a world with “no. more. cancer,” to quote Isabella.  

We’ve also made huge advancements to the child’s treatment experience during this time. Kids are first and foremost, kids. We remember that throughout their treatment. We know more about emotional wellbeing and how stress and anxiety can have physical effects on anyone, but especially a child. That’s why it’s not just about the oncologist – it’s about the whole team, including child life specialists, social workers, navigators, psychologists and more. 

But none of this would be possible without organizations like the Isabella Santos Foundation who provide philanthropic support to make these things possible. From clinical trials to medical equipment to interactive games to stickers and so much more: much of it is funded by donations and the kindness of people who want to help. Thank you for helping. 

Day in and night out… being a pediatric oncologist is one of the hardest jobs in the world. Dr. Oesterheld is changing things for kids fighting cancer. He is doing everything he can to change pediatric treatment and save our children’s lives. But he can’t make his visions a reality without funding. He can’t build programs. He can’t create new clinical trials. Please help fuel his work by donating to thank him.

DONATE

All photos/videos courtesy of Levine Children’s. 

WHAT YOUR DONATION COULD FUND:

-$100 donation could purchase pipettes and petri dishes for the new Pediatric Cancer Translational Research Lab at Levine Children’s.  This lab is going to be a game changer for pediatric cancer research right here in Charlotte. Research effects change. But we need the equipment to make it happen.

-$250 donation could help fund a novel clinical trial at the ISF Rare & Solid Tumor Program at Levine Children’s. Clinical trials are designed for all aspects of pediatric cancer: to improve survival rates, side effects, find the right combination of treatments, with the ultimate goal of less cancer and more time.

-$500 donation could help fund Next Gen Sequencing of rare tumors (rare tumor research) at the ISF Rare & Solid Tumor Program at Levine Children’s. This rare tumor research helps determine what’s happening inside a cancer tumor and how to attack it.

*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES

9/2:  We Have Stopped Making You Aware

9/3:  Through My Eyes: This is Childhood Cancer 

9/3:  Through My Eyes: What Cancer Leaves Behind

9/4:  Through My Eyes: Day In the Life Of Kellie Andrew, Warrior Mom Fighting to Save Her Child From Neuroblastoma

9/5:  Through My Eyes: Behind the Scenes with Aaron Plummer, Dad to RhabdomyosarcomaWarrior

9/6:  Through My Eyes: What My Child About Cancer, What Really Scares This Cancer Mom

9/8:  Through My Eyes: Week 1 Results

9/9:  Through My Eyes: Behind the Mind of a Teenager Fighting Cancer & Social Anxiety

9/11:  Through My Eyes: What It’s Like to be a Young Adult Living With Cancer

9/13: Through My Eyes: What It’s Like to be a Young Adult Supporting a Loved One With Cancer

9/15: Through My Eyes: Week 2 Results

Through My Eyes: Week 2 Results

We hope you are taking the time to read our Through My Eye series this month.  Our month-long childhood cancer series gives you an inside look at what it’s like for kids fighting cancer, their families and those fighting for them.  

Thank you for your support… keep sharing! So far we have raised $15,016 & reached 125,485 people on social this month. We appreciate the action taken and hope to inspire more.

These cancer warriors & their families hear you. They feel the support. We can’t tell you how much little pushes can do in their fight.

“I’ve been honestly overwhelmed by the support, some even from personal groups that followed the page and contacted me or my mom afterward.“ -Nicholas

“To be so young and to be relentlessly committed to each other through THE hardest thing ever is a testament to not only your love for each other,but also your character as individuals. Congratulations on your engagement, Corey and Blythe!” -Paula Takacs Foundation

Let’s keep going, help us do more! Share & Donate.

WEEK 2 PERSPECTIVES:

Monday 9.9: Behind the Mind of a Teenager Fighting Cancer & Social Anxiety

Wednesday 9.11: What It’s Like to be a Young Adult Living With Cancer

Friday 9.13: What It’s Like to be a Young Adult Supporting a Loved One With Cancer

This week we are sharing perspectives from Levine Children’s oncology staff who are invested in working with kids fighting cancer day in and day out. See what it’s like to be a Pediatric Oncologist, Child Life Specialist & Nurse. Perspectives start Tuesday with Levine Children’s taking over our social accounts.

Other Ways to Take Action This Month

 Become an Awareness Ambassador

 Register for the ISF Race, 9/28: 5kforkidscancer.com

WEEK 1 RESULTS

Through My Eyes: What It’s Like To Be a Young Adult Living With Cancer

Corey, diagnosed with Ewing’s Sarcoma at 19 years old, shares what it’s like to be a young adult living with cancer. Learn how his life has changed, what keeps him strong and what cancer has taught him.

Through My Eyes: Behind the Mind of a Teenager Fighting Cancer & Social Anxiety

17 years old. Terrified. Exhausted. On his second time around the cancer block, Nicholas speaks out on what it’s like being a teenager fighting cancer struggling with Asperger Syndrome. This stage 4 osteosarcoma warrior had the courage to step out of his comfort zone to publicly talk about his anxiety. We hope you will take time to read his perspective. It’s real. It’s raw… just like childhood cancer.

Through My Eyes: Behind the Scenes With Aaron Plummer, Dad to Rhabdomyosarcoma Warrior

Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes.  Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer. 

  • Perspective: Cancer Dad
  • Name:  Aaron Plummer
  • Spouse:  Kayla Plummer
  • Daughter:  Merritt Plummer
  • Cancer: Stage 1 Rhabdomyosarcoma, group 3
  • Diagnosed:  03.04.19
  • Treated at:  Levine Children’s Hospital
  • Feels:  Thankful

UPDATE, August 2020:  We are thrilled to share that Merritt is currently in remission and there is no evidence of disease.  

Aaron was featured on our social channels (Instagram & Facebook)  on 9/5/19 to share what it’s like to be a daddy, husband, and provider while helping his daughter fight for no more cancer. It’s real and it’s raw… just like childhood cancer.

My Daughter Has Cancer

“In February the babysitter went to change Merritt’s diaper and discovered what looked like small grapes coming out of Merritt’s vagina.  After a visit to Merritt’s pediatrician she determined that it had prolapsed and sent us to a urologist at their other office to determine why.  That urologist did a quick ultrasound and discovered a tumor in Merritt’s abdomen. After seeing the pediatric urologist at Atrium Main, we were immediately admitted to Levine Children’s Hospital where Merritt had a biopsy surgery, CT scan, and bone scan the following day.”

03.04.19 At 17 months old Merritt was diagnosed with Stage 1 Rhabdomyosarcoma Group 3.  Merritt has been through several tumor removal surgeries, 10 radiation treatments, and is in week 22 of 42 weeks of chemo.

The New Normal…

“It’s so frustrating that Merritt has to see this as her “normal” life because it is far from normal for any child at her age.  I have for years heard people refer to children of Merritt’s age being in their “terrible twos”. I disagree with this term because it is not terrible twos, it is a child that is trying to figure out life itself, their emotions, and why things happen the way they do without knowing how to express themselves.  Now take that and throw the “cancer life” on top of that. Try having an almost two year old trying to figure out how to express the fact they don’t like being held down to have their port accessed or how awkward it feels to be put to sleep each day for 10 days in a row for radiation treatment. Having a child that is going through what most of the world sees as “terrible twos” at the same time as cancer treatment is frustrating as a parent. 

And then the new normals as a parent… No parent should have to turn a deaf ear when their child wakes up screaming and crying for 30 minutes wanting milk, but can’t because she isn’t allowed to eat and drink this morning due to scans. No parent should have to be thankful that their child’s white blood cell count is good enough to go to a fundraiser to benefit them.  No parent should have to sit in the waiting area at the hospital just scrolling through their phone, hoping to make the minutes of waiting not seem like hours…..even though they still do. No parent should have to sit in a post-op area just thankful to have their child back in their arms as they wake up from anesthesia, even though they are fussy with a scratchy throat because they had to have a breathing tube during their MRI. No parent should have to be extremely thankful that they don’t have to ride on the CT scan table with their child this time. No parent should have to pray endlessly for the best possible results from scans that determine future surgery and radiation, but they will not get results until Thursday. No parent should have to be so thankful for their child returning back to their “crazy” toddler self just hours after all of this.  

No parent should have to ever do any of this, but this is what has become our new normals.  No parent should have to we know that there are others out there that haven’t had days as good as ours along their journey.”

The Necessary Evils of Childhood Cancer…

“The toll chemo drugs takes on Merritt’s little body is awful.  The worst has been the chemo burn she gets in her diaper area after certain drugs.  Not being potty trained makes it to where we have to change her diaper every 45 minutes for 12-24 hours after chemo to keep it from burning her so bad.  It gets so bad at times that one week we went through 14 tubes of Desitin diaper rash cream and 4 tubes of prescription diaper rash cream.”

On average Merritt has had a fairly smooth treatment process with little sickness. This day during Chemo week 20 brought vomit and many tears over port access. Imagine physically holding your child down screaming & crying “Daddy Move” while nurses are trying to access the port for chemo. Many parents can explain to you about the heart breaking moments involved in getting their child to comply with their cancer team. The memories of pinning them down will never fade.

The Juggling Act

“Family, work, life and cancer… juggling everything is exhausting.  I am lucky enough to be able to have a work place that is willing to work with me and allows me to be with Merritt at every single treatment and any specific day that is affected by her treatment.  But it is hard to go to work on days that are not affected by it because no matter what… Merritt is always in the forefront of my mind no matter what I am doing. 

We are good about going with the flow and taking things as they come but not having control of your life and a lot of what you are able to do is hard.  Your entire life revolves around numbers like hemoglobin and ANC and things like constant sickness for weeks at a time. So just having to see that controlling Merritt’s life and what she can and cannot do would have to be the hardest part.

Chemo days are the days that the average person doesn’t realize that even when the chemo Merritt receives only lasts for 1 hour that day… it still makes it a 6 hour day round trip from the time we leave the house until the time we get home…and some days the chemo itself lasts for 7-8 hours when we get to clinic at 8 am and are leaving around 4.  Non Chemo days I work usually 10 hour days. I luckily work local, 12 minutes from our house, so if I were needed for anything I could be there fairly quickly. I usually get off work around 3:30 or 4:00. When I get home I first spend a little time with Merritt before taking care of things around the house like mowing the yard, changing the oil in a vehicle, or a long list of other things needing to be done.  I then come in and fix dinner. I like to do this because I know even though I have worked all day, taking care of Merritt can be just as much if not more tiring for my wife. We then eat dinner and then usually play outside with Merritt before going to bed.”

Thankful…

“When you turn on the news, open the newspaper, or read through your social media you see a lot of negative in the world today… but there are still A LOT of good people in the world.  The number of people that we don’t even know that recognize what Merritt is going through and they do what they can do or what they are led to do to show their support for her and us. Whether its an encouraging word or letting us know they are praying for us or anonymously paying our bill at a restaurant.  Even just now, 175 miles away from home sitting in a restaurant eating breakfast and the waitress comes up and tells us that someone has taken care of our bill. It is very humbling to know that there are so many good and caring people out there that just want to help in any way that they can. I am so thankful not for the fact that my daughter has cancer but for the fact that we do have Merritt here with us.  We are able to fight with her to beat this because we know there is a reason for everything and we are seeing this make differences in the lives of others.”

Dear Merritt…

Dear Merritt… aka Fuzzy,

I love you more than anything and everything on this Earth.  I will never forget that first time that I laid eyes on you and got to hold you in my arms.  That was the best feeling ever. It was at that point on that Friday afternoon on September 8, 2017 that I knew God had big things in store for you for your time here on this Earth.  Little did I know just how BIG they were. You have always been the most fun loving kid I have ever seen. You have always been able to put a smile on everyone’s face that you come into contact with and if they get to see you dance their smile becomes bigger than your smile.  I did not begin to learn the magnitude of big things you would do until that Monday morning of March 4, 2019 in Dr. O’s office. The last thing that I wanted to hear come out of Dr. O’s mouth was that dreaded “C” word as he informed us that you had cancer. You have become the strongest person I know.  I know it sounds crazy because I am the one that you call for to get the stool so you can watch your fishys and the one that is there to do whatever you want. My strength is miniscule to yours. It has been tough from my eyes to see you going through what you have gone through, but your strength through it all is what has given me my strength to do the things for you.  Being able see you up and playing within hours after everything, whether it be surgery, chemo or radiation, has been what has been the drive to my strength. My strength throughout the journey with you has made me stronger but still no where near as strong as you. You are truly amazing. You have also touched the lives of so many others, from ones that see you every day to many that have never met you. Your smile, your love of life and everything else about you has affected so many people.  Just being able to see your smile and seeing you dance with what you are going through has made a lot of people realize that the things they are going through in life are minor compared to what you are going through and your attitude is so much better than theirs. I have no doubt that this is just the beginning of what God has in store for you. You have a very bright future. I am thankful that God chose me to be your daddy, I am lucky and honored. We will get through this together and this has made us all stronger.   Always remember that no matter what you will always be my solid rock to lean on.

Love always and forever,

Daddy

If you are a dad reading this and your child has cancer, we applaud you. It is so hard to do what you do to stay strong for your family. Thank you to Merritt’s dad for giving us a glimpse into being a daddy, husband, and provider while helping his daughter fight for no more cancer. This is childhood cancer. Are you aware now?

DONATE NOW

Photos courtesy of Aaron Plummer. You can follow Merrit’s journey with rhabdomysarcoma on his Instagram account, @FightingWithMerritt

*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER

9/2: We Have Stopped Making You Aware

9/3: Through My Eyes: This is Childhood Cancer 

9/3: Through My Eyes: What Cancer Leaves Behind

9/4: Through My Eyes: Day In the Life Of Kellie Andrew, Warrior Mom Fighting to Save Her Child From Neuroblastoma

https://youtu.be/9IC5dijpz2U
Aaron was featured on our social channels (Instagram & Facebook)  on 9/5/19 to share what it’s like to be a daddy, husband, and provider while helping his daughter fight for no more cancer. It’s real and it’s raw… just like childhood cancer.