By Megan Hiday
At 17 you should feel like you have your whole world ahead of you. You’re a junior or a senior in high school, probably have a job and you’re working on going to college.
At least that’s what I thought my life would be like, until everything around me changed. I went from trying to figure out what to do with my life to the biggest fight of my life.
In November 2021, I was working like any other 17-year-old when I got a bad pain in my leg. It hurt so bad to walk and move, I left work and went to the doctor.
They said it was a bug bite. That didn’t seem right so we went to a different doctor. We were told it was a bruise, which there was no way that was possible and the pain was getting so unbearable that I was breaking down crying. Nothing was helping.
A couple days later, we went to a vein clinic, and the doctor said it had nothing to do with my veins but that the bump shouldn’t be there so he ordered an MRI that had to be approved. We waited throughout the weekend and on Monday as my mom and I were eating breakfast, I was having so much trouble sitting that she ended up deciding to take me to Riley Hospital for Children that day.
I remember getting to Riley and waiting hours before they ended up deciding to send me home.. At least they would’ve if a nurse had not stepped up and said, ‘OK, hey we know this shouldn’t be here. We need to do something.’”
And after that I got admitted. I remember getting two ultrasounds done which now have made me never want one ever again because of how bad they hurt doing them on the bump. Then they did a biopsy surgery number one, and then we went home and every day for four weeks we were wondering what would come back from the biopsy.
Every day that passes, every call, every time your phone goes off, you’re sitting there wondering what would come from it. One day we finally got the call. Do we have the answers? … No.
Riley said they had to send it out further to run more tests because they weren’t sure, so they sent it out to New York. And more waiting.. And waiting.. And waiting.
Finally we got the call. Only if we knew how much that call would change our lives. Imagine being a mother at work and being told your daughter has cancer. That was on December 1, 2021.
Dr. Kyle Jackson, an oncologist from Riley, said only 150 people in the world have this type of cancer, CIC DUX4 sarcoma, and it is terminal.
My mother hasn’t worked a day since. After she got that call, she called my siblings and my niece and nephew together and we went out to a Mexican restaurant to have a family dinner. At the time I thought it was weird all of a sudden that all my family was together, but I didn’t think much of it. I was still unaware of the cancer diagnosis.
After we ate we all went back to the house, and mom sat us all down and told us the news. They cried and were shocked, but all I said was it’s going to be OK. I will never forget the night not because of what I got told but because of how my family reacted.
The first couple months are a blur at least for me. I can’t tell you what went on or what happened, but I remember starting chemo, and I was on a high dose while also getting a port put into me in surgery number 2. Not long after we got told the primary tumor would never be removed, so the “timeline” representing my life was very short. We got told a year to 18 months.
To anyone else that might seem like a really long time, but being told that at 17 you have maybe 1½ years left to live it hits you. But I’ll be honest that wasn’t the moment reality hit me.
So we started chemo but here’s what people don’t know. If I spiked a fever of 101.6 or higher, we had to go to the emergency room immediately.
After we got there they would stabilize me and transport me to Riley. If I went to the ER for anything it was an automatic transfer to Riley.
Have you ever been stuck in a waiting room for hours and not able to leave and you’re so tired of being there? Try laying in a hospital bed not being able to leave the fifth floor unless you were being discharged. This happened for five days every other week basically. They were putting poison in my body in hopes it’ll end up saving my life.
Constantly you’re wishing for treatment to end and it can’t. You have to constantly tell yourself to keep going because you can’t rely on anyone else to get you through this; it has to be you.
Six months of going through chemo, that’s not including all the infections or all the intensive care unit trips because of my blood pressure going too low. That’s not including all the close calls we thought I’d be gone that night, praying that I wake up. Six months of hospital visits. Six months of my body battling itself.
Oh but this is just the start. You better get ready.
Not long after we had the second surgery the tumor itself became infected. I would’ve died that night in spring 2022, if we didn’t take it out, so we had no choice. When they took it out from my right butt cheek, one side was the size of a softball but the inside part of the tumor was like a nerf football.
During that surgery they couldn’t keep me sedated. I was waking up every hour on the hour. But that wasn’t the worst part. They had a tube down my throat and when they finally decided to stop sedating me and actually take the tube out the doctor who was supposed to wasn’t even in the room.
So I woke up and my thought is I’m trying to yell out for help.I kept hearing people say it’s okay, it’s okay. In my head I was screaming out, “How do you think this is okay? I’m choking.’”
I felt like I couldn’t breathe. I couldn’t call for help because I couldn’t talk. I tried pulling out the tube so many times they tied my hands down.
I remember having scratches on my face after this surgery. In my head I was dying and I couldn’t call out for help.
Two days later from this surgery I had to have a reconstructive surgery, surgery number 4. I was so scared to go into this surgery because of what happened two days before and they were going to have to put the tube back into my throat.
Thankfully for this surgery my mom yelled at the charge nurse to get it out of my throat before I even got to the recovery room after the surgery.
There were other surgeries and many more treatments. It’s all a blur. One thing I still remember though is the basketball game Coaches v. Cancer on February 15, 2022. I was on my way home from one of the blood transfusions, and my mom and I ended up getting into an accident at an intersection. The first thing I remember I did was call my sister and said we just got hit. We ended up signing out against medical advice to go to the game. At that game I got my favorite picture ever of me and my sister.
At this time there was a lot of support going on, more than I can ever explain and I know we wouldn’t have made it without the support of everyone. We might not say it a lot, but we truly are thankful for everything everyone has done for us. Every letter, drawing, note and phone number I still have to this day in a box in my room, even the ones from the very start.
Something I also remember is missing out on so much, half of my senior year, not hanging out with my friends and being kept away from as many people as possible so I didn’t get sick, not going to many places because I’d get worn out too quickly.
Another thing is I have never been afraid of dying, that’s never scared me, The part that did scare me was meaning it would be leaving my family. And in no way was I letting that happen, no way I’m letting them have that conversation with my 4-year-old nephew Jacob, that his MayMay is gone and is never going to come back.
That was my main motivation to fight so hard so I wouldn’t be leaving them. I cried one night for so long about how they would tell Jacob I was gone. And I realized, I can’t do that to him. So it made me fight a thousand times harder to stay to be here for those kids and my family.
Dying still doesn’t scare me. I came to terms with it, but what does scare me is leaving my family. And I never will. I will keep going on and fighting whatever I have to. My life is worth the battle because in the end I’m going to win the war.
I’m one to often doubt myself, but something I have never doubted was that I can make it through this fight. That was until the next surgery. Surgery number 5, the double lung surgery. I remember the doctor saying it’s one of the worst surgeries you can get on one lung, let alone both.
Oh here we go again, you get this mindset that you want to make the choice to go through with it but here’s the choice: don’t take it and it gets worse and will kill you, or get the surgery and hope it helps enough not to kill you.
This surgery was the most painful thing I have ever been through in my life, and recovery wasn’t any easier. I remember yelling at the doctors after this surgery and saying that they weren’t doing their job and they needed to do better because I shouldn’t be in as much pain as I was in.
After a long recovery from that surgery then we moved onto radiation, and if you’re still reading this I said this was a long ride, and this is still only half. We started radiation at Riley Hospital For Children. I was getting radiation on my lungs and lymph nodes. I went through two weeks at Riley at which point I turned 18, when my radiation team got me a heated blanket which I still use. So we started every day for two weeks driving back and forth to Indy. It sucked but my team was amazing.
Are we done yet? Nope. Still going. We then switched for the remainder of radiation to IU Health Ball Hospital. At this point we stopped the lung radiation and only had radiation on the lymph nodes. We ended up having a total of 32 radiations. And multiple times we had to stop to heal radiation burns that I received.
After going through all of this you’d figure I’d be closer to done, right? Well not even close. Just because the treatment stopped doesn’t mean my fight did.
After radiation we finally got somewhat of a break, but is it really a break when I still can’t sit for long periods of time or drive long distances or the nerves in my leg hurt me so bad that my leg goes numb? That’s still a problem.
Right now we are at the scans every three months, which means everytime we get the appointment all the way up to that very day you’re hoping and praying that you’ll get good news. You’re hoping they say you can let your guard down for a little and just be a kid, you’re hoping for so much, but in a matter of a few small words your entire world can come crashing down again.
Six months of chemo, five surgeries, 32 radiation treatments, many ICU visits, many close calls, and even with all of this I’m still in the fight for my life. People think that the fight ends when you’re at the three-month scan point, but they couldn’t be more wrong. Every call, every appointment, every time I’m sick, every hospital visit, every small thing, you’re praying it isn’t something more.
One thing I’ve learned is live your life to the fullest, take the risks you want to, do whatever it takes for you to have a good life. This fight has taken so much out of me and away from me but in the end I’m defying all odds. I got told I would die and I’m still here. I’m proof you can go through hell and back but still make it through.
Like I said, my life is worth fighting the battle because in the end I’m going to win the war. And no matter how small the fight is that you are going through, so can you.
