‘Miranda, stop it. You can’t be in that much pain. You’re being a killjoy. Knock it off.’ I was popping Advil. I lost all feeling in my leg.’: Teen battles Ewing’s Sarcoma after being written off, ‘I am a survivor, not a statistic’

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“I first started feeling pain in April of 2015. I was an avid runner. Running was my livelihood. I lived and breathed running. I was a freshman in high school running varsity at Wayzata High School in Plymouth, Minnesota. Our team was so good we had won nationals. Running varsity proved to be a huge accomplishment. Simply put, running was my identity.

Yet my first track meet, I was the anchor for the 4×4, and my time sucked. I was extremely upset with myself. Little did I know, the biggest race of my life was still ahead of me. Shaking off that track meet, I went to hang out with my boyfriend. We ended up going to a local park. We were hiking through the park when we stumbled upon a tree that had fallen over. We both jumped up on the tree and started shoving each other playfully. I tripped and fell off the log and landed on my tailbone. That was the exact moment I realized my lower back hurt. This was sometime in April. The pain started then and really didn’t end until my diagnosis in December.

My family went on a road trip to Montana that August. I remember lying in the back of the van with a body pillow between my legs trying to ease the pain in my low back. The nights were the worst in Montana. I would wake up from pain and venture outside of our little cabin and gaze up at the stars. One thing notable about Ewing Sarcoma is the pain strikes at night. That’s when it’s the worst.

Courtesy of Miranda Mead

So, I found myself losing sleep starting in August. I would spend hours of the night pacing trying to ease the pain. Moving around seemed to help as it allowed me to focus on other sensations. What did I see, what did I hear, what did I smell? Montana was a lot of fun, except for the fact I was in constant pain. My parents quickly realized something was up and took me to a tailbone specialist when I got back.

The tailbone specialist determined I had broken that bone, so I had a procedure to fix it. The pain didn’t go away. It intensified. School started in September, and I found myself walking at least a few miles. My high school was one of the biggest, if not the biggest, in the state of Minnesota. I was walking up and down four flights of stairs and about half a mile to the other side of the building multiple times a day.

I started walking with a noticeable limp and was unable to compete in cross country as I was in so much pain. My parents then took me to a chiropractor, who, after looking at an x-ray, realized my entire right side of my pelvis was shifted and diagnosed me with Sacrum joint dysfunction. I received treatment three times a week. These appointments consisted of pushing down on my sacrum and adjusting me.

Flash forward to November, things haven’t gotten better. I’m passing out around 7:00 p.m. because I’m in so much pain. I’m popping Advil like nobody’s business during class. I’m scrunching forward in my seat doing whatever I can to ease my pain. My left leg had gone numb. I lost all feeling in my leg as the tumor in my sacrum I didn’t know about had reached six inches and was starting to compress my spine. I also lost control of my bowel and bladder movements. Paranoid I would have an accident, I went to the bathroom every half hour. I was still showing up to cross country meetings but sitting out with the injured group. I had people sympathize with me: ‘Yes, I have shin splints, I understand your pain.’

After a visit to grandma and grandpa’s in November, my family really noticed something was off. I wasn’t able to do the normal things I used to. I vividly remember a moment I will never forget. Most of my cousins on that side were born in November, including two of my uncles as well. We were celebrating birthdays and instead of just handing us our gifts, my aunt and grandparent decided we were going to do a scavenger hunt. In order to get the clues, you had to pop a balloon without using your hands.

Courtesy of Miranda Mead

I remember being in so much pain I could hardly stand up to pop the balloon. My mom grabbed my arm and pulled me aside, ‘Miranda, stop it. You can’t be in that much pain. You’re being a killjoy. Knock it off.’ It was infuriating to be told I wasn’t in as much pain as I actually was. I cannot describe what it’s like to have people hear what you’re saying, but not listen. Maybe it was because I was 15, but people weren’t taking me seriously.

Finally, to make sure it wasn’t in my brain, my mom demanded I get an MRI scan. I hated that day more than anything. This was the week from hell. My 16th birthday week. On November 23rd, my 16th birthday, I failed my driver’s license test. I’d like to say it was rigged for me to fail and they fail everyone, but truth be told I probably made a mistake worth failing. I can’t entirely blame myself, as not even a week later I’d be diagnosed with cancer. Maybe I was a bit distracted. On November 25th, I had an MRI. This was an emergency MRI. I’d get the MRI and they’d read the results asap and get back to us.

My mom also scheduled a visit with the neurologist to make sure something wasn’t acting up in my brain. I go to the MRI and things just start happening. Weird things. I walk in ahead of my mom, determined. Numb leg step, right leg drag, repeat. I looked like I was walking like an old person. Hunched over, the whole nine yards. A person walking out of the MRI approached my mom who was a few yards behind me and said, ‘God bless her.’ Weird, but also wholesome. Whatever. She told me that in the waiting room and I shook it off. I go through my MRI.

Lying on a six-inch tumor, not moving, doesn’t feel good. It’s like thousands of needles digging into your sacrum causing radiating pain throughout your body. After the MRI, the technician looked at me and told me, ‘Have a great Thanksgiving and good luck.’ Those words, ‘Good luck,’ echoed in my brain as an uneasy feeling washed over me. My senses went numb and my heart started racing. What does ‘good luck’ even mean? You don’t need luck to have a good Thanksgiving, do you? Thanksgiving isn’t about luck? What could this possibly mean? My mind started racing, but we had to focus on the next appointment. Again, I shrugged it off.

At the neurologist, he performed a few tests. He poked my foot with a sharp and dull end. ‘No sir, I really can’t feel the object on my foot. So, I can’t tell you if it’s sharp or dull because I can’t even feel the object touching my foot.’ My mom gets a call and steps out of the room as the tests continue. She comes in and just gives the phone to the neurologist. We make awkward small talk.

The neurologist came back in. I remember the EXACT words used. ‘Miranda, there’s no easy way for me to tell you this, but they found a tumor at the base of your spine and we need you to go to Children’s Minneapolis Hospital so they can run tests immediately.’ Panic. Heart racing. Blood pumping. Blackness. I nearly passed out, the neurologist had to sit me down and help me breathe.

Before I knew it, we were on the way to Children’s. There, I once again was misdiagnosed. ‘Don’t worry,’ they told me, ‘it’s not cancer.’ Well, the oncologist wasn’t on, so she didn’t have a chance to weigh in on the scans. I was told to come back after Thanksgiving to be admitted. My mom knew something was up. The doctors sent the scans to the oncologist who was very concerned. They let me be at home for Thanksgiving. It was a blur. I was surrounded by family. I went back to the hospital around November 30th in unbearable pain. I was in the pediatric intensive care unit for three weeks.

Courtesy of Miranda Mead

During these three weeks I was on morphine, ketamine, basically any pain medication you could think of. I had my own care team to manage my pain. My doctor was named Casey. I loved this woman more than anything else in my life. She listened. I felt heard. I felt validated. I felt reassured that my pain was going to go away.

They tried putting me on ketamine. Ketamine is a hallucinogenic if taken at the correct dose, but also a pain medication. I was given a microdose. I still hallucinated for 36 hours straight. My nurse never left my room. I saw shadows reaching into me. Figures running back and forth. I heard drums pounding in the hallways. I saw these black hands reaching into me trying to kill me. I thought my IV pole was actually someone trying to summon the devil.

I made my nurse hold my hand and recite the lord’s prayer because I was so afraid. After no sleep, 36 hours later, I would not close my eyes because I was afraid of what I would see. We started with 5 seconds and worked our way up. Needless to say, I was still in pain. My parents decided to intubate me for three days. December 1st-4th I was knocked out and had a machine breathing for me. During these days, my diagnosis of Ewing Sarcoma was confirmed, and chemotherapy started prior to me even knowing I had chemotherapy.

This part still haunts me. I was treated without any consent on what I wanted my treatment to look like because I was a minor. Yet, I would have been well aware of what was going on had I been informed of the crazy medications the doctors put me on. I understand my parents did the best they could, but I will forever live with the consequences of jumping into treatment. One of them being infertility.

The actual cancer journey, shockingly, wasn’t as horrible as the journey leading up to it, nor the journey afterward. While most people assume the treatment itself was the worst part, it wasn’t. I had 14 rounds of intensive grueling chemotherapy. Two days of chemo, 12 days of rest. Five days of chemo, nine days of rest. Repeat. After 6 therapies I had proton radiation. I was the 32nd kid to ever have received proton radiation in the state of Minnesota. Proton itself was traumatizing.

Courtesy of Miranda Mead

I enjoyed meeting with the employees and talking with them about their life journeys. The radiation itself left me with a nasty wound. I was treated with burn victim cream and again given opioids to help with the pain associated with the burn. While down at the Mayo Clinic, I also got chemotherapy. I was in and out of the hospital but tolerated chemotherapy pretty well. My body and counts were able to recover. I guess they took after my resilient personality.

Courtesy of Miranda Mead

Toward the back half of chemo, I was able to do outpatient treatment. I would go in for the chemotherapy infusion and then go back home to sleep. This proved to be so nice in my journey. It was a glimpse of normalcy. I would still find myself in the hospital with fevers and infections, but mainly it was tolerable. Nothing eventful came from being in the hospital. I’d go in, get chemo, puke a few times, and experience some of the side effects like hair loss, nausea, mouth sores, joint pain, etc.

Courtesy of Miranda Mead
Courtesy of Miranda Mead

My family proved to be my strongest support system. My mom came with me to every single appointment. She slept overnight with me in the hospital. One of my best friends would often visit me in the hospital as well. She’d skip classes to spend time with me. She’s my lifelong best friend; we grew up together as we were neighbors. We have been friends since pre-school. I had the best, most supportive, understanding support system someone could ask for.

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Yet, nothing could have prepared me for life post-cancer. Once you’re done with treatment, the doctors send you on your way. No one tells you how to live your entire life again. I went to hang out with a few of my old friends. They decided to chase each other around with raw hotdogs. They ran around screaming. I was dumbfounded. How stupid is that? Why? Like here these guys are chasing each other with raw hotdogs while I’m sitting here thinking about relapse. I didn’t fit in during the rest of high school. I had no clue how the heck to behave around children my own age. I really started becoming introverted and focused on my family.

Courtesy of Miranda Mead

My family did the best they could to help me get back into the real world. Yet, I struggled. I had high aspirations and found myself constantly trying to make up for lost time. I often found myself getting lost in work and making money. High school flew by and I met my current boyfriend during my senior year of high school. He has been nothing but supportive. He comes with me to my follow-up appointments and generally does his best to understand what I’ve gone through.

While I appear as a high functioning student at the University of St. Thomas with my 3.88 GPA and three on-campus jobs, I am still struggling with the side effects of cancer. I’ve had ankle issues due to the chemotherapy received. I basically had to learn how to walk again because my ankles were so stiff from chemotherapy. Mentally I have a really hard time trusting. I had done everything right and still was diagnosed with cancer. I lost faith in the good things of the world.

There isn’t a day that goes by where I don’t think about my cancer journey or have something that challenges me relating to cancer. Yet, I am forever grateful to be able to be alive and have these issues. I am forever grateful I was the one in my family to have gotten cancer as I am strong enough to deal with all the side effects. While cancer may be dark and grim, I made the best out of it and got myself involved in multiple non-profits raising awareness for childhood cancer. I participated in public service announcements and some videos I starred in received over half a million views.

Taking that awful experience and using it to help others has been what’s kept me going. No matter how much I struggle or whatever challenge I endure, I know there are people out there who are inspired by my story. It’s opportunities to share my story that motivate me to keep going. I am not a statistic. I am a survivor and nothing can take that away from me.”

Courtesy of Miranda Mead

This story was submitted to Love What Matters by Miranda Mead. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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