Tag Archive for: pediatric cancer

Through My Eyes: Behind the Minds of a Family who is Fighting a Terminal Childhood Cancer Diagnosis

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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 Mom & Dad
  • Name: Tom & Lynn Barron
  • Daughter: Mackenzie, 4 years-old
  • Cancer: DIPG
  • Diagnosed: June 22, 2018
  • Treated at: Levine Children’s Hospital

In April of 2018 Mackenzie fell off a stool and hit her head. After tests and an MRI, she was diagnosed with DIPG a year ago in June.  DIPG (Diffuse Intrinsic Pontine Glioma) resides in the PONS region of your brain. There is NO CURE. NO CHANCE OF SURVIVAL and NO real treatment plan.  Mackenzie has completed 30 days of radiation and is currently on a clinical trial all in hopes of slowing progression and stabilizing the tumor.  

Mackenzie doesn’t have a bald head from chemo. She runs around with high energy like any other healthy 4 year old.  Doctors gave Mackenzie 12-18 months to live… that was 15 months ago. During this time, the Barron family has learned what is truly important to them. They choose to hold tight onto their faith and belief in miracles. Mackenzie’s mom and dad were featured on our social channels (Instagram & Facebook) on 9/22 & 9/23/19 to share what’s going through their head as they move through uncertain times, We are Childhood Cancer Parents. We Are Not Ok. We also shared perspectives from her sister and brother perspectives: How a Little Sister’s Terminal Cancer Diagnosis Affects Siblings Too.

[#ThroughMyEyes | Lynn Barron] “It feels so surreal at times that we are in this world. To look at her and know she is terminal, I simply cannot comprehend. She looks normal. Acts normal. The ONLY thing telling me otherwise is her MRI scans and the diagnosis the doctors have given us.  

Some days I think I am in denial of the truth. Most days, I know the truth that a monster is living in her head. Currently that monster is dormant to the best of our knowledge. It is not impeding any of Mackenzie’s functions: her eye isn’t turning in, she hasn’t lost her balance, she walks and runs normally, and the headaches haven’t started.   The only pain she complains of is her feet hurting, which is a side effect of the drugs she is taking to keep the tumor stable. We know everything can change in a blink of an eye. Just like it did Friday, June 22, 2018 when our world flipped upside down.

I feel broken. My whole life changed in an instant.

I feel lost because there isn’t a protocol to follow, there is no journey that others have walked down that lead to her getting better and ultimately healed and becoming cancer free.

I hold tight to my hope and faith. Knowing we aren’t truly alone, that God is walking along side us. Sometimes carrying us.

I feel blessed.  I have the privilege of being Mackenzie’s mom. Kayla’s mom and Noah’s mom

I feel different.  Mackenzie’s story is different than any other we have read about.”

[#ThroughMyEyes | Tom Barron] “DIPG is commonly considered the most ugly, unforgiving, nastiest cancer on the planet. LOCKED IN, that’s how these kids pass away. They are completely aware of their surroundings and because of where this disease is located, they lose all functions that we take for granted; eye sight, the ability to swallow. The ability to talk, walk, sit up and move any fashion. It’s location and it being “diffused” makes it impossible to even attempt to remove.

I’m so scared she is going to suffer.

I’m sad my mouse will never get married, she won’t have children of her own, she won’t learn to drive, she won’t attend elementary school, no first day of school pictures, she will not have the life she deserves. 

Failure and desperation sets in and my heart prays for this to all be a bad dream. All of these together make me feel isolated, all alone in a world I don’t understand, don’t comprehend.”

[#ThroughMyEyes | Lynn Barron] “I’m so scared of the unknown. Not knowing how this will end. What will our journey be?  Will she follow the statistics like most DIPG kids do? One day waking up and she has trouble walking or starts having massive headaches. What then? What will we do? Will we follow protocol and put her on steroids because the headaches are too much for her to bear?  Or is it better not to put her on steroids – which is the lesser of two evils. Neither one will heal her. That is the worst part of this. NOTHING we are doing will HEAL her!

I’m so scared her not growing up. Being robbed of watching my child grow. Missing all the key milestones you look forward to as a parent.  The first day of Kindergarten, to every first day of school thereafter. Her first school dance, first boyfriend, prom, graduation, going off to college, getting married, having kids and watching her blossom into an amazing person she is destined to be. 

I don’t want her to suffer or be in pain that I cannot take away or make better. She doesn’t deserve this, none of these kids deserve this. 

What scares me more is losing her, watching her decline, watching her die, lying her to rest, and then living the rest of my life without my baby girl. I don’t think I can do that, I don’t want to do that. I don’t want to be those parents.”

[#ThroughMyEyes | Lynn Barron] “Because Mackenzie was 3 she was asleep for each radiation treatment.  EVERYDAY for THIRTY days (5 days a week for 6 weeks) she was put under anesthesia! We call it silly juice – or happy gas depending on how she went under. She is a trooper – never once complaining. In fact happy to see her nurse Jodi and Dr Tim and Dr Sean – she still talks about them! She adores them.”

Mackenzie wore this custom molded radiation mask that was bolted to the table during her radiation treatments.  Radiation is used to slow tumor progression.

[#ThroughMyEyes | Tom Barron] “It can turn family into strangers and strangers into family. The impact “cancer” has, not only on the one diagnosed, but also the nucleus family, is more powerful than you can imagine. There is this family out there that no one knows exist until you hear the words “your child has cancer”. A complete stranger was brought into my life that I needed for a very long time. This network of people become your strength.  They along with my wife and kids help me hold onto my beliefs and my faith. You witness the best and worst of humanity. There are communities willing to come together for one little girl and give her family a day of pure love and these communities spark others to do more.”

Pictured here with Mackenzie is Ally Davis… a 2-time Hodgkins-Lymphoma warrior. Ally was initially diagnosed with cancer at 11 years old and is currently 15.  Through her own foundation, Team Ally Foundation, Ally raises awareness for childhood cancer and wants kids fighting to know they are not alone in their fight.  “Mackenzie was our 2nd ever Team Ally kid. They’ve since become family! Mackenzie came to visit Ally several times while she was inpatient. Definitely helps put a smile on her face.” -Ally’s dad

[#ThroughMyEyes | Lynn Barron] “Knowing she is terminal according to what we know about DIPG today, I take every day, every moment and try my best to record it, to etch it in my memory. Especially the little things we take for granted. I try and absorb every sound, every expression, every word she is saying. Closing my eyes soaking in the moment. It feels like a movie reel, and slow motion at times. I just want time to freeze so I can capture every detail, every color and every movement.

Sometimes a fleeting thought will race across my mind, ‘Is this the last birthday party she will attend being a happy healthy kid?’  ‘Is this the last time we go to Carowinds?’ ‘Or our last beach trip?’ ‘Will she wake up tomorrow and suddenly have trouble walking?’ Because that is what this monster does, it awakens and the next thing you know your child is in pain, has trouble walking or talking, and then your world changes and is flipped upside down again. 

The challenges you experience will be different, new decisions will need to be made. What those decisions will be and how we will respond to them we do not yet know. I pray, we continue to be different. That we don’t walk down that path. The reality is, based on historical data, we very well might. I however choose to believe and know in my heart our story is different. Mackenzie’s story is different. That God has great plans for Mackenzie and my family. Plans to prosper us and not to harm, plans to give us a future and a hope.  (Jerimiah 29:11) I will continue to believe and hold onto that truth.”

No child should ever endure what might possibly happen to Mackenzie. No family should ever hear the words – your child has cancer and there’s nothing we can do. There’s no cure – no hope. We have to bring change to rare cancers like DIPG. Are you aware now?

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*** 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

9/17: Through My Eyes: Behind the Scenes With Charlotte Pediatric Oncologist, Dr. Oesterheld

9/19: Through My Eyes: What It’s Like to Help Kids Understand & Cope With a Cancer Diagnosis

9/20: Through My Eyes: What I See in Kids Fighting Cancer as a Pediatric Oncology Nurse

9/23: Through My Eyes: We Are Childhood Cancer Parents. We Are Not OK.

Through My Eyes: We Are Childhood Cancer Parents. We Are Not Ok.

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Dear World,

We are childhood cancer parents, and we are not ok and we are very tired.

As childhood cancer parents, we receive many labels. Oh, how strong you are!! Oh, the ability to do hard stuff! Your family is so strong! Keep up the fight! I don’t know how you do it. I couldn’t imagine what you are going through. 

Guess what? We are tired. We are weak. We are terrified. We don’t know how we do it. We don’t plan for the future like normal families, but we plan for the next treatment, the next hospital visit. We make bucket lists for them, seriously NO parent should be required to make a bucket list for their child, but we do so we can give them all that we have. We pull those 2nd, 3rd mortgages, empty the 401k and retirement plans, all in the hopes of giving them their life back.

We wear T-shirts with our kids names on them, and call them fighters and warriors. As ”cancer parents”, we have to pump our children full of toxic medicine, catch their puke in buckets, hold them down for pokes and dressing changes, send them off to surgery, just to cry in the corner of the waiting room.

We catch the wrath of all the anger they have, all of their frustration is pointed to us most days, and it’s the hardest thing to hear your child scream at you to stop and say they hate you for making them do this. We spend days, nights, weeks, months in the hospital, sleeping next to their beds in cots, or blue chairs that are so uncomfortable, surfing the web for success stories when we just can’t sleep, because we know that the nurse is coming in soon, or their results will be posted, and the beeping of their monitor, watching every single heart beat on that screen. This is our new normal from diagnosis day forward.

And God knows if we step out of the room for 10 minutes the guilt of leaving your child alone haunts you. We skip meals, showers, the list goes on. We never get a full night’s sleep. Ever. The guilt we feel for our other children having to watch their sister or brother go through all they do. It never ends. You make special trips just for their siblings to try and bring “normal“ back to them, but it will never be pre diagnosis normal ever again.

So, we aren’t strong. We are weathered. Beaten against the jagged, rocky edges of childhood cancer. We stand up each time, go at it again, because that it is what we do. We have to. And you can be absolutely sure, we don’t want you to imagine our lives, or put yourself in our shoes. It’s not something we want for any of you. We just want cures, and research, and treatments that give our children 100% chance to be adults and live their lives the way it’s supposed to be.

Instead of pulling them in little red wagons through the hospital halls. We should be going to the park, planning for them to attend preschool, signing them up for soccer or T-ball or gymnastics.

We want the world to pause, just for a moment, and acknowledge that we can do more for kids with cancer.

Then, maybe someday, we will only need little red wagons for beautiful, cancer free strolls to the swing sets of the world. 

But rest assured, we are just like you in every way except for one, we are the parents of a child with cancer/terminal cancer and our only goal is to give our child, our family a chance at a normal life.

Tom Barron
(Dad to Mackenzie, diagnosed with DIPG at 3 yrs old)

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Mackenzie was diagnosed at 3 years old with an inoperable, incurable brain tumor called DIPG. This week we will be sharing the perspectives of her mom, dad, brother and sister as they move through the fears and unknown of terminal childhood cancer. 

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*** 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

9/17: Through My Eyes: Behind the Scenes With Charlotte Pediatric Oncologist, Dr. Oesterheld

9/19: Through My Eyes: What It’s Like to Help Kids Understand & Cope With a Cancer Diagnosis

9/20: Through My Eyes: What I See in Kids Fighting Cancer as a Pediatric Oncology Nurse

Through My Eyes: What I See in Kids Fighting Cancer as a Pediatric Oncology Nurse

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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 Oncology Nurses
  • Hospital: Levine Children’s Hospital

When you walk through something like a diagnosis of childhood cancer with a family, there’s an intimacy that develops.  You not only see the bad and horrific things childhood cancer can do…. you also see all the good that cancer can’t cover up.  Several pediatric oncology nurses were featured on our social channels (Instagram & Facebook) on 9/20/19 to share their thoughts on what they see in their kids and families fighting cancer.

Cathryn Jordan, BSN, RN, CPHON ® , Clinical supervisor, pediatric hematology/oncology/BMT, Levine Children’s

#ThroughMyEyes | Cathryn Jordan

“I see bravery not just in these amazing kids but in their parents. The parents who smile and hold hands and comfort these amazing little people! I’m always in awe of how much so many of these parents and families GIVE not only to their littles, but to the caregiver team, to the cause, and to each other amidst one of the greatest storms of their own lives. They smile, they encourage, they spread awareness, and they FIGHT through hope and love with everything they have. They show me what bravery is each and every day!”

#ThroughMyEyes | Nurse Sarah Sadler

Sarah Sadler, Levine Children’s Outpatient Oncology

“When I first graduated nursing school, I’ll admit I was selfish. My initial thoughts on wanting to be a pediatric oncology nurse were focused on how my own experience as a childhood cancer survivor myself would help others. But once I started caring for these amazing, resilient patients, my perspective completely shifted as they were the ones truly helping me instead.

As a nurse, when you meet a new patient and their family, their life has truly been twisted upside down and you initially think that in their mind, they are thinking you are just another person they interact with among the countless others in the medical field. But after you have introduced yourself and spent a few moments with them – this is not the case. They welcome you into their family and show you how much they care about you as you spend the day caring for them. Each week when you see them, you catch up for a moment as you ask how they are doing and they ask about you and your family – you build an awesome relationship like no other. This can mean meeting a patient’s new stuffed animal they brought with them to clinic this week because it makes all that’s going on around them a little less scary. Or even spending a few extra minutes with your patient that has written everything down in a memory book to tell you all about their week because their disease is hurting their memory but they want you to share in their joyful moments. Nurses all know what it means to celebrate alongside our families with the good, cry alongside them with the bad, and sometimes just truly hate cancer and what it is doing to these beautiful children. And that’s what keeps us going each day, is having the honor and privilege to be the one to provide the best care possible each day to these unbelievably strong and inspiring patients.

So I would have to admit, I am still a bit selfish because I am so grateful for the phenomenal impact this career has had on my life. It is extraordinary how these kids are making me a better person by sharing their stories, hearts, and strength with me each and every day. The love and compassion I have for my patients and their families is given right back as they allow me into their lives, to help fight alongside them, and work every day to bring more awareness to childhood cancer so we may one day be rid of it entirely!”

#ThroughMyEyes | Nurse Sarah Boyd

“My name is Sarah and I have worked on LCH 11 (inpatient hematology/oncology/BMT) for more than 8 years. In my 8 years I have come in contact with dozens of amazing children who are resilient fighters who have touched so many people in so many ways. 

Sarah Boyd, RN II, Levine Children’s Inpatient Oncology

All of us on the unit refer to the patients as “our kids,” because that’s exactly what they are! They are fragile – yet strong; small – yet mighty; sick – yet thriving; and they are wonderful blessings to all of us! 

I will never forget one sweet girl who knew her days were limited. She pushed through, was more positive than anyone in the room, and all she wanted was for her parents to have a wedding like they had dreamed of. There she was, not wanting a trip or gift for herself. Instead, something for her loving family. So what did we do – we had a wedding! Dresses, flowers, cake, you name it! What a selfless desire and request that truly made her heart happy. 

You see, that’s what’s amazing about our patients. They may be sick, they may be receiving chemo and blood, but they don’t care. They have games to play. They have pictures to color. They have wagons to ride in. And smiles to make on their face and to everyone around. 

The days are long, hard, trying and difficult. Yet beautiful and something we would all never change. I have a heart embedded in mine, and he takes me to work everyday and my love for him is something that will never change. 🎗” 

#ThroughMyEyes | Nurse Kelsey Sigman

“When people ask me what I do for a living, I usually just say “I’m a nurse.” I hate the looks and the sad “awww’s” I get when I explain what kind of nurse I am. Don’t get me wrong, being a peds cancer and blood disorders nurse is one of my greatest accomplishments. But everyone’s response is the same: “isn’t that so sad?” Or, “wow that’s got to be so hard for you,” or “I don’t know how you do it. You’re such a special person to do a job like that.” 

Kelsey Sigman, RN, Levine Children’s Inpatient Oncology

My response is always, “it’s hard, and it’s sad to watch these amazing kids go through what they go through, to watch their mamas and daddy’s wish they could change everything about what is happening in this specific moment, to see brothers and sisters terrified for what’s going on. But the reality is that they are living it. They are the ones who are special, and resilient and brave.” 

The truth is that I don’t feel special seeing tears stream down a 6-year-old’s face while I access their port. It makes me feel terrible. Holding down a kiddo to make them take medicine because their fevers just won’t come down makes me feel like the worst nurse in the world. But when I go home at the end of each work day, I look back and I say “gosh that kid was so brave.” Regardless of how hard they fought me or how many tears they cried, they got through it. They got through it AND still smiled at me the next time I came in the room. Those smiles are what makes it all worth it. 

We, as nurses, give chemo and other meds that make these kids feel miserable, and that moment for them of feeling good for even just 1 second, changes everything. It gives us a purpose. I think all the nurses I work with would agree that if we can make one of our kiddos smile by the end of the day, we’ve accomplished something greater than we ever thought we could. 

These families become our families, they know my husband’s name, my daughter’s name, they even know my dog’s name. While I hate that my job is a job that even exists, I love what I do more than anything. I’m so honored and humbled to take care of our kids and their families during the hardest times of their lives.”

[#ThroughMyEyes | Nurse Jordan Sullivan]

Jordan Sullivan, RN, Levine Children’s Inpatient Oncology

“This job is hard. What these brave warriors do every single day is harder. 

I have known I wanted to be a pediatric oncology nurse since I was 12. My best friend’s brother was diagnosed with cancer, and it was devastating. I watched the nurses. I watched as they comforted not only him but his family. I will never forget when he had to be admitted late one night for a fever. In the midst of packing up their stuff to go to the hospital he said “I hope my favorite nurse is there, I can’t wait to show her my new shoes.” In that exact moment, I knew what I wanted to be. I wanted to be that tiny bright spot for every disappointed kiddo having to come back to the hospital, again. 

I take pride in getting to be what a patient and their family needs, a hug, a laugh, a dance party or source of light on their darkest day. 

You see, these kids go through it! The port accesses, the nausea, the vomiting, the mouth sores so bad they won’t talk or swallow. But do you want to know what part really blows me away? Their joy! Their little giggles! Their resiliency! 

I have watched a grown man cry over a shot and had a 3 year old giggle and not even look up from her iPad. The thing is, these kids define their situation, they don’t let their situation define them. 

From the outside pediatric oncology might seem like a sad place to work. Don’t get me wrong: it has its days. But it’s also where we celebrate everything, no matter how small. Because their wins are our wins. 

Every day I go to work I am honored. Honored to work with such an amazing team, honored to serve these families and to be a small part of their fight against such a horrible disease. 

I thought I would be able to bring a little happiness to these kids and their families but little did I know they bring me more smiles and inspiration than I could ever bring them. It is an honor and a privilege to be their nurse.”

#ThroughMyEyes | Nurse Jodie Walsh 

“In the words of a parent…

‘My child’s bravery is written all over their body from the scars cancer gave him.’

My pediatric patients show their bravery by simply coming through the door to Levine Cancer Institute and the department of radiation oncology. And they continue to walk through that door everyday they have treatment even, when they do not really understand what is happening and why. Kids lack the ability to mentally prepare for an uncomfortable situation, showing bravery in their ability to trust the folks committed to taking care of them through each phase of treatment.

Jodie Walsh, RN, Levine Cancer Institute in Radiation Oncology

They allow this stranger to access their port with a sharp needle, to take blood from their body, to assist with the awful smelling gas that we give our little guys to put them asleep, and to carry them to the treatment table, help position them on that table in a low-lit room and then walk out and leave them all alone on that table for 10-15 minutes while an invisible beam of radiation treats their cancer. That’s incredibly brave!

I am not going to lie, I have many times over the years thought “I just cannot continue to do this job anymore, it is way too hard…” and it is. I have children and a new granddaughter, every pediatric cancer patient’s situation is very relatable, right? I mean, it is not your child until it is. (I stole that line from a mom with crocodile tears in her eyes thinking about her son and the fact that he is her only child and she could not image having another child because she has never known what it is like to have a healthy child). 

Let’s face it radiation therapy is not a modality that treats all children with cancer. The children we treat often are the most acutely ill and as much as I want every single child to win their battle with this devastating disease, sadly it doesn’t always happen. My inspiration is HOPE. Hope that my love shows through and the care I give makes a difference in the children’s lives while they are having radiation treatment, HOPE that we have turned a corner in research and figured it all out. HOPE that this treatment has made a difference in the quality of time for both the children fighting cancer and their parents who fight right along side of them.”

Let’s give a little more HOPE to kids fighting cancer and all those fighting along side them. This is childhood cancer… are you Aware? 

DONATE

*** 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

9/17: Through My Eyes: Behind the Scenes With Charlotte Pediatric Oncologist, Dr. Oesterheld

9/19: Through My Eyes: What It’s Like to Help Kids Understand & Cope With a Cancer Diagnosis


Firebirds skips dinner and goes straight to breakfast for a one time brunch fundraiser (WBTV)

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Originally posted on WBTV

Raising money to fight rare childhood cancer

Firebirds Wood Fired Grill is teaming up with the Isabella Santos Foundation with a fundraising brunch. This event will take place after the 12th Annual 5k/10k For Kids Cancer on Saturday, September 28th.

Today on QC@3 Chef Steve Sturm cooked up a couple of smoked pork and scrambles egg tacos with jacks cheese and avocado pico.

Recipe:Makes 4 Tacos4 each – 4 or 5” Flour or corn tortillas1 cup pulled pork1 cup scrambled eggs½ cup shredded jack cheese1 cup avocado PicoHeat taco shells and pork in a sauté panLayer each tortilla with ¼ cup of pork, ¼ cup scrambled eggs, tbsp. shredded jack cheese and ¼ cup avocado PicoSub RecipesSmoked Pork Butts- season with your favorite seasoning and smoke until falling apart. Remove bone and excess fat and pull meatAvocado Pico De Gallo – (1/2 cup Diced avocado, ½ cup Diced, Tomatoes, ¼ cup Diced Red Onion, ¼ cup Cilantro, 1-2 tbsp. Diced Jalapenos, 2 tbsp. Olive Oil, Kosher Salt to taste, 3 tbsp. Fresh Lime Juice)

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

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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 long–lasting 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