Posts

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

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: Young Adult
  • Name:  Corey Morgan, 20 years-old
  • Cancer: Stage 4 Ewings Sarcoma, relapsed
  • Diagnosed:  November 2018, relapsed July 2019
  • Treated At: Levine Children’s Hospital
  • Interests: Fishing, Hunting, Carolina Panthers football
  • Feels:  Unlucky

UPDATE, NOVEMBER 26: We are beyond saddened to share the news that Corey Morgan passed away the evening of November 26, 2019. This young man held such a special place in our hearts and we are grateful he is no longer in pain.

Corey was featured on our social channels (Instagram & Facebook) on 9/11/19 to share 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.

 “It was a pain I had never felt before. I had pain in my bones, in my knees, ankles, back, elbows, even in my jaw. I had pain everywhere.  It hurt so bad I could hardly move or even talk.”

Corey’s pain lead to the discovery of stage 4 ewings sarcoma in November 2018 at 19 years old. He was diagnosed with a primary tumor on his adrenal gland, which was surgically removed and he started chemotherapy.  In July 2019, the pain returned and a tumor was found on his back pressing on his spinal cord. When this tumor was surgically removed, Corey temporarily lost his ability to walk and use his bladder. More tumors were found on his left arm, sacrum (which is part of the back), ribs and pelvis. Corey has undergone radiation and currently waiting for what the next step in his cancer treatment plan will be. 

Losing Control

“It’s difficult when your body won’t do things it used to do.  It’s even more difficult when you lose control over it. Losing the ability to walk was the hardest. I even lost control of my bladder. 

Cancer changed my ability to do most of my favorite things.  My absolute favorite thing is hunting. I like fishing. I also like to work on stuff with my friends, like fixing something that broke on a vehicle or working on four-wheeler or just about anything we can get our hands on. I like riding four- wheelers and I love diesel trucks (Ford in particular!).  

Since being diagnosed with cancer I’m not able to hardly do any of that, especially not alone. My body just can’t do those things… I physically can’t or I’m no longer strong enough. Just the other day my dad and friends had to fix the steps on a deer stand to make it easier for me to get in and out easier. Every time I would go fishing on my boat someone would have to be with me in order to load the boat back.  I can’t ride four wheelers due to the risk of wrecking or somehow getting hurt. 

But the biggest thing cancer has changed is my ability to work.   It sucks being stuck at home as a young adult, not able to make money and live the dream life I wanted to. I’m not able to buy a house and move out. I’m not able to take the next big step with my fiancé that we would love to do. There is nothing that I once was able to do that I do exactly the same.

Cancer changed my ability to be independent like other young adults.”

My Rock

“She is the reason I get out of bed in the morning. She’s the reason I continue to keep a positive outlook on life. Blythe is the reason I still fight! 

After I was diagnosed I never expected her to stick around since we were so young and still have so much life to live. But she did and that’s when I knew she was the one. She has given up just as much as I’ve had to just to be with me. She has given up most of her social life, where she wants to go to school, her family time and the biggest thing… she has given up her freedom. We don’t get to run around wherever we want like most teenagers are able to. We can’t go out with friends like we once could because I’m not able to do a lot of things they can. 

She’s been right by my side through it all. The good the bad, everything! It means the world to me to know that I always have her to be here for me! Blythe gives me hope, every time I get down or feel like giving up she’s right there to bring me back up! 

Cancer hasn’t been all bad for us, as crazy as that may sound!  I believe it has brought us closer and has helped show us a different kind of love that not everyone gets to experience. And the fact that we get to experience it at such a young age is amazing. 

I was lucky enough to to propose to Blythe August 5th 2019… it was probably the greatest moment of my life. To finally get to call her my fiancé meant everything to me and makes me the happiest person in the world.  Blythe is my world!”

Daily Decisions

Everything in Corey’s life quickley became about what doctor to see next, labs, and transfusions.  Daily decisions look different too. Before being diagnosed with cancer, decisions would include who to go fishing with over the weekend and where to watch the Panther’s football game.

As a young adult over 18 with cancer, Corey now has decisions to make like what is being discussed here… who he wants to grant as his power of attorney. Decisions no 19 year old should have to make.

What Cancer Has Taught Me

I never would’ve imagined it would happen to me, but it did. I was a normal teenager living my life… the next thing I know I’m laying in a hospital fighting for my life and leaving there not remembering anything about those 2 long weeks.  I felt unlucky. I was finally becoming a young adult, becoming a little more independent and not having to rely on my parents as much. I felt unlucky because everyone always asked “why me?”, and that’s exactly how I have felt for the longest time. I’m not able to do things that I at one time I took for granted. 

I finally realized that we can’t control what cards we are dealt, so just enjoy what you have because someone always has it worse.

Being diagnosed with cancer has taught me to enjoy every part of life. Tomorrow is not promised, things can change in the blink of an eye. So never take anything for granted, soak up everything life has to offer, make the most out of everything you go through.

Love and enjoy time with your family, your friends, girlfriend, boyfriend, whoever it may be! My family has been great through this whole process… taking time off work, paying bills and doing everything they can to take care of me! Not only just my mom, dad, sister and fiancé. But my grandma, aunt and uncle, cousins, and friends. If it wasn’t for all of them helping out we wouldn’t be where we are right now! 

Live in the present and not the future, and take things day by day! Life is much more enjoyable that way!”

Corey turned 20 on September 1st and cancer abruptly opened his eyes to the more serious aspects of life… maybe even before he was ready. But he accepts the reality and chooses to enjoy life. Enjoy the small moments, be present and cheer on those Carolina Panthers. His positive outlook is simply inspiring… we hope it will make you stop and think. It did for us. Take a few minutes to read his perspective. It’s real. It’s raw… just like childhood cancer. Are you aware now?

DONATE

All photos/videos courtesy of Corey’s family. 

*** 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

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

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 Teen
  • Name:  Nicholas Haag, 17 yrs-old
  • Cancer: Stage 4 Osteosarcoma, relapsed
  • Diagnosed:  2016 at 13 years old. Dec 2018 relapased in hip & lungs
  • Treated At: Levine Children’s Hospital
  • Feels:  Terrified & Exhausted

Nicholas was featured on our social channels (Instagram & Facebook)  on 9/9/19 to share what it’s like being a teen with Asperger Syndrome fighting cancer. It’s real and it’s raw… just like childhood cancer.

UPDATE, JUNE 23, 2020:  Nicholas lost his fight to osteosarcoma. What a unique, smart, resilient and funny young man Nicholas was and we feel extremely fortunate to have gotten know him.

My Name is Nicholas and I have stage 4 osteosarcoma.  Oh, and Asperger Syndrome. That too.

“How does it feel being a teenager fighting both cancer and a social anxiety disorder?  Terrifying and exhausting. After I was diagnosed with cancer, I didn’t feel the effects immediately. But they were certainly profound when I returned to school.  I was never the type to have panic attacks before, but I certainly did when I returned. They were bad, especially in the hospital environment – and while that’s cooled down some… I still get panic attacks.  Especially in situations when my counts are low.

Panic attacks are strange. You’re convinced something is wrong with you. And the physical symptoms are similar to if something is actually wrong with you. It becomes reasonable in your mind to connect the two. Even though I’ve become better at recognizing them, they are still a pain in the ass and are frightening to actually experience.

For awhile I couldn’t purchase something at the store because I felt unfamiliar with everything – for worry I might screw up. I don’t really know sometimes what I’m supposed to do socially, I’ve slowly learned.  Americans do tend to just hit up conversation…that makes me anxious.

Being diagnosed with cancer has made me a more paranoid person when it comes to my health – and I did pretty much everything possible to limit my cancer risk. A more anxious one too. Upon seeing something that I would see as triggering, there was no stopping my anxiety, and sometimes it would just spike up randomly.

Uncertainty of Cancer

“Nosebleeds. Often, some platelets will solve this, but oftentimes close to my nadir my nose will bleed and sometimes uncontrollably. Last week was among the worst nosebleeds I’ve ever had and had to be admitted, inpatient.  I got home around 2am. It’s these trips that can cause me the most anxiety and stress because it’s not a scheduled thing. The uncertainty of what’s going to happen makes me anxious. So can you imagine what the uncertainty of cancer does to me?

It sucks going in for chemo two weeks out of four. Plenty frustrating since this has been my schedule for the better part of this year. And yet it’s kinda unpredictable since you can’t guarantee certainties on the schedule.”

Mom’s Heart Breaks 

“We were packed for the beach with the kids and my mom in the car, ready to go.  I thought his lump on his leg could have been a torn ligament or something that might need a brace.  My husband passed out when he heard the news. My heart hurt so much for my child. I have not been to the beach since, and I don’t think I ever want to go again.

The thing that makes me the proudest of Nicholas is his amazing resilience of spirit.  He doesn’t stop fighting and he keeps on going, even when it’s so hard for him. He also maintains compassion and caring for others while going through something so hard.  He is there for his friends when they are going through hard times. It’s so amazing that he still has empathy for others.” – Jennifer, Nicholas’ Mom

Searching for the Light at the End of the Tunnel

Nicholoas has turned his love of train travel into a way to cope with his cancer.  A way to map out visually the next step forward. A way to show him how far he has come and a way to keep him focused on searching for the light at the end of the tunnel.
“My road map is more of a train map.  I used to be into trains a lot. Living in England – where there is much better rail travel than in America – I took trains for the hell of it sometimes. Spotting and riding the different types have been definitely fun to me even today. I studied the rail map of London to the point I can still tell you where to go without looking at it. So we created a small poster modeled off the London Underground District Line – the line I would use to get home in London – and put markers for how far along I was.

England has always felt more my spiritual home. Something about it screams out to me as particularly homey and I always felt more at home in the UK than I do in the US. Despite being American I have visited the UK consistently and it’s almost become therapeutic – having a chance to go back to my home away from home.”

Day-To-Day Life Changed 

“Walking even a slight amount of distance makes me tired… and it’s painful. As someone who doesn’t have a car and took public transport to get to school, even before this relapse – it was hard. And just when I thought physically I was starting to recover, I got rediagnosed. And here I am again.”

Nicholas had a knee replacement in 2016. In just a few weeks, he will be undergoing surgery for a hip replacement to replace his pelvic bone where the disease is located.  Both replacements are with metal. Nicholas will have to learn how to walk all over again.

Now What? 

“This might not even be the end. Realistically, it could feasibly happen again and this could be a recurring thing throughout my life. That’s the toughest thought, knowing “yes, I can get through this one, now what?” You never stop dealing with cancer but it’s different from actually having it in you.

I’ve always wanted to travel across the world. There are so many places I want to visit. I hope to visit Asia post-surgery. I hope to sort of live the most “normal” life I can after this. I hope I can finish the early college program at CPCC and that by that time, I could have enough credits to nearly earn my college degree.”

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. Are you aware now?

DONATE NOW

All photos/videos courtesy of Nicholas’ Mom, Jennifer Haag.

*** 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

 

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.