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

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


Through My Eyes: What It’s Like to Help Kids Understand & Cope With Their Cancer Diagnosis

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 Child Life Specialist
  • Name: Paige Hinkle
  • Hospital: Levine Children’s Hospital, Outpatient Clinic

Paige is a Certified Child Life Specialist in Levine Children’s pediatric oncology outpatient clinic. She helps patients, siblings and their families understand and cope with their cancer diagnosis. Paige was featured on our social channels (Instagram & Facebook) on 9/19/19 to share why she continues to work with pediatric oncology patients and a few of the difficult conversations and intimate moments needed when childhood cancer won’t back down. This is childhood cancer.

I feel so lucky that I get to be a Child Life Specialist to our kids fighting cancer at Levine Children’s! I get to see these kids exhibit what it is like to truly be courageous. Courageous doesn’t always mean being brave and it doesn’t mean it gets easier-it means finding strength in the midst of pain, grief, and fear. And these kids show it every day!

These past few weeks have actually felt like cancer is literally smacking us in the face.  It has been a brutal time for our team as we witness cancer striking time and time again. During these emotional times, I remind myself to focus on my role with patients. Focus on what I can do right now to comfort them and what I can plan on doing to bring calm to the storm cancer causes.

As a Certified Child Life Specialist, my role changes a little bit from providing procedural support and educating our patients about their diagnosis in a way that they understand. First and foremost, these kids are kids-and I love getting on their level and meeting them where they are. Sometimes that looks like making transformers out of playdoh or playing countless rounds of UNO. 

And sometimes my job is that I get to use real medical materials and human body books to teach these kids about their cancer and what their treatment will look and feel like. Other times I get to talk with our kids about their hopes, dreams, and goals and work my hardest to make those things happen.”

I love that I get to work with these kids and their families for months and even years! It brings me so much joy to invest in these kids long-term. My favorite memory is of a school-age patient that I spent a lot of time with. He would always ask for me to come see him, but sometimes he would hear my voice in infusion and just yell down the hall “Paige! Come see me! I’m in here!” Sometimes he would yell that as the nurse tech was trying to get his body temp through his mouth. I always look back on that memory and laugh. He was such a special buddy to me. I treasure these relationships.

I love seeing them grow throughout the years I get to spend with them.  I get to see how far they have come and the warriors they’ve turned into-it’s so rewarding to see the progress they make not only physically but emotionally. I get to work with them during their first port access, I teach them with medical supplies what the procedure will feel like and I coach them through that procedure. And over time, our kids really take that control back that cancer has taken away. They master things that are really hard! I’m just so proud of them.  They are all gifts and they are changing the world.

Intimate Conversations

“Every single living being has a beginning, a time to be alive, and then an ending , or death…”  -When Dinosaurs Die

“Sometimes we must tell a patient that we don’t have a way to make their cancer go away.  That their cancer is making it hard for their -heart, lungs, liver, brain-to do their jobs and keep their body working how it should.  We tell them we have tried all the options, and that because our bodies can’t live with cancer, their body is going to die. During those conversations, we always, always reserve space that something miraculous will happen.  But we have to prepare for what is most likely going to happen. We want to help arm our patients and families with new ways to fight their cancer.    

As a care team, we want to help set them up to have the best quality of life possible. That means our team makes plans to help our patients to have less pain, more comfort, less time in the clinic and hospital, and more space to make this time look like what they want it to.  We surround them with the support to make difficult decisions and to process unimaginable emotions. Cancer wants to control, to overwhelm, to squash hope, and to take away life. These new weapons help to give control back to our patients, to give them new kinds of hope, and to pour more life into the time that is now.

Beauty That Cannot Be Overshadowed By Cancer

When a child has advanced cancer they become more motivated to influence others’ lives and prepare for their own deaths.  So, I schedule special appointments with our patients to spend this time talking about what legacy they want to leave behind and together we create new pieces of legacy to give to their loved ones. Our patients need and want to know that they will be remembered, and they won’t be forgotten. These interventions have been studied and found to increase kids’ sense of purpose, meaning, and will to live increased, which causes suffering and depressive symptoms to decline. Legacy projects also bring our families incomparable joy as they remember their child.  What better way to fight cancer then to do these things?

So what does it actually look like when our families use these new tools to fight their cancer? They go to the beach one more time, fly across the country for a rap concert, they get a tattoo.  I help them make art with their handprints, use their beads of courage to share their story, and make priceless gifts for their family. Their loved ones provide their child space to just be a kid-to play, laugh, and make new memories as a family. Our families talk with their children about what heaven looks like, they ask us their brave yet scary questions to prepare, and a million other acts of love – that’s why they are our heroes. This is how we help turn something that is so traumatic, so dark, so horrible-into something that is beautiful, that shines bright, and cannot be overshadowed by cancer

More Hope Is Near

This can look like so many things. Sometimes, families do something really brave-they come back to the clinic where their child was treated. We get to love on them more intimately, share special memories together, and hold space to breathe new hope into what happens next. Our families rise up, weapons re-arranged and they do exactly what cancer tries to take away. 

They stand with their new army, sometimes hundreds or thousands of people who support their mission, and they help us to make this better for our kids. While processing their OWN loss and grief, they take care of the next precious little bodies that cancer dares to infiltrate. Our families work endless hours to raise more money-and more money means change and hope and life and more answers to fight this. They raise awareness by telling their child’s story and they share the light that their child has brought to this world. It doesn’t matter if these stories reach 1 or 1,000 people. 

Our families also help us to care for our families on a deeper level. Through partnerships… they help us buy a wheelchair that makes a patients’ day a million times easier, they give us Starbucks gift cards to give parents a break while their child is inpatient, they bring us LEGO’s and blankets and so much more to bring smiles to their faces. Every bit counts and impacts our families. 

Through these families, I get more and more motivated to keep what I’m doing, because it matters. These kids keep me going, keep us going, and we aren’t stopping.  I love to imagine that cancer is shaking in its’ boots. Because our families aren’t backing down-they’re getting stronger and more hope is near.

Paige says that families go through all the stages of grief, but for every child lost, they have to process two losses.  The life of the child that should have continued, and the actual loss of their child. Every child deserves to just be a “normal kid”, fulfill their dreams, go to college, get married.  Help us make that a reality. This is childhood caner. 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

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 supporting a Loved One With Cancer

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. 

Corey is fighting relapsed stage 4 Ewing’s sarcoma at 20 years old. Being diagnosed with cancer has taught Corey to enjoy every part of life, because tomorrow is not promised.  Corey proposed to his girlfriend Blythe on August 5th, 2019. She said yes.

There is no worse feeling in the world than for someone you love to be suffering from cancer. You want to fix it.  Make it go away. But all you can do is love them. Blythe was featured on our social channels (Instagram & Facebook) on 9/13/19 to share her fears, her frustration and the thoughts going through her head and heart as she supports the one she chooses forever with.

I Choose Forever

“When Corey was first diagnosed with cancer in the fall of 2018 we had only been dating for two weeks.  As awful as it sounds, I didn’t know if I was supposed to stay with him. I didn’t think I was strong enough to go through everything. Meanwhile, I knew that I truly did care about him.  I decided to stay… no matter what happened. 

On the other hand, I knew I was terrified of losing him. I thought that Corey was going to end things with me because he wouldn’t want to put me through everything that comes with cancer. Or that he would think that I would not want him because he was sick. That was not what I wanted. I was even more afraid Corey was going to die… he wasn’t in the best physical state. 

When Corey was first diagnosed I barely knew his family. As a matter of fact, I had only met them a handful of times. I had no idea where my boundaries stood with him and his cancer. Would I get on their nerves visiting the hospital everyday? Should I visit every day… was that my place? Did they like me? 

I sat with him in the hospital every day with anxiety covering every inch of my body from the moment I got there in the morning until the moment I left at night.”

There is no worse feeling in the world than for someone you love to be suffering from cancer. You want to fix it.  Make it go away. But all you can do is love them. Today, Blythe shares her perspective. She shares her fears, her frustration and the thoughts going through her head and heart as she supports the one she chooses forever with.

One Day at a Time

“I’m lost at what the next steps are in Corey’s treatment. At the moment we have no certainty in what’s going to happen next. I am the type of person who likes to have a plan, but with cancer… there isn’t a plan. Sure the doctors might have their “plan” but that has no guarantee. With cancer things change all the time. 

At the beginning… Corey’s treatment was supposed to take 9 months to a year. That changed very quickly because he could not even meet the platelet requirements in time for his second treatment.  Treatments moved out to every three weeks. Eventually, treatments had to be moved out even more. Now we are to the point where we have no idea when he will receive treatment based on weeks. 

A curveball was thrown to us in July when we found out that Corey relapsed. Within less than an hour of being readmitted to the hospital and this diagnosis, Corey began to lose feeling in his legs due to the new lesion on his spinal cord. Corey had surgery to remove that tumor the next day. 

After this surgery Corey temporarily lost the ability to walk and the use of his bladder. The doctors set a new plan, but we still don’t have a timeline.  We still truly do not know what is next. 

I have had to learn to take things one day at a time.”

I Watch the Good. Bad. Ugly.

“I’m with Corey most days, I see everything. I detect the aggravation in his face when he can no longer do the things he once could. I witness his friends not inviting him to do things because he can’t stay out as late as them. I notice the exhaustion that swallows him up even though he tells you he isn’t a bit tired. I observe part of his confidence being ripped away as his hair falls out. I look at the tears that roll down his cheek as he worries about the results from the MRI and bone marrow test that we will receive the next day. I view his frustration as he can no longer remember the things he once could. I see the pain that covers his body after the surgery that was necessary to save his life. 

On the other hand, I look at the joy in his face when he gets to go home after a long hospital stay. I listen to him talk about all the things he has to look forward to. I see his excitement when he gets new parts for his truck. I stare at the thrill that is brought to him by watching the Carolina Panthers play. I view his passion for hunting as the season rolls around.  I spot the smilies his dog, Stella brings into his life. I recognize the hope that is brought to him through cards people send. I admire his determination to beat cancer. 

I watch the good. I watch the bad. I watch the ugly.”

No Timeline

I’m lost at what to do and where to go to school. When Corey was originally diagnosed with cancer in November I was attending East Carolina University, ECU, as a Nursing Major. ECU is approximately 4 hours away so when Corey got sick I decided to finish the semester and come home. I figured it would be best because I missed a total of 3 weeks his first hospital stay. I wanted the ability to be with him and support him day in and day out throughout this journey. When I returned home I enrolled in our local community college to work on my Associates in Science so I wouldn’t get behind and could transfer to a University when all this was done with. Here I am in my sophomore year and I have no clue what to do about school. I have no idea if I should go back to a four year college and receive my BSN or whether to stay at a two year and get my RN. 

I have no idea what to do because we have no timeline.”

I’m Lost

 “I’m lost in when we should get married. In August Corey and I got engaged. We have people ask us all the time if we have set a date. Well that’s a good question… but the answer is no. I hate being asked this question because I don’t know what date to set. 

You can’t plan a wedding when you don’t know what will happen. I have no idea what date to set because we don’t have specific dates for treatment or can’t predict what days Corey is going to feel good or feel bad. Even more, I don’t know when Corey will be back to work. For all I know Corey could die, as hard as it is for me to say… it’s true. Then I would be left with a venue, a photographer, a cake, a dress, and everything else on that day with no one to use it with. 

That thought frightens me… setting a date and not having Corey there for it.

This could happen to you or your child.  We were normal teenagers one day and the next we were dealing with cancer.  Do not think for a minute it will not be you because it can be in the blink of an eye. Never in a million years did I think our life would be the way it is right now.”

19 years old. She’s scared and lost. But she fights alongside Corey to help him stay positive. Childhood cancer affects not only the children and young adults fighting for their lives, but those fighting next to them.  Thank you to Blythe for her honesty. It’s real. It’s raw… just like childhood cancer. Are you aware now?

DONATE

All photos/videos courtesy of Blythe. 

*** 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