‘Do you have any questions?’ All I could manage to mumble was, ‘Will I lose my hair?’ I was 16. I was in high school. I was a girl. I couldn’t be bald.’: Teen girl diagnosed with Ewing Sarcoma urges ‘never miss a single thing’

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“Three words. That’s all it took. Three simple words.

You talk about it in class or in your everyday life and yeah, it’s scary, but you never truly understand. That is until you’re sitting on the table in the cold hospital room staring at 4 white walls with a million different things running through your mind.

My name is Brooklan and I was 16. I was full of life and playing three sports. I had just gotten my driver’s license. It was my sophomore year in high school, November 2017.

Courtesy of Brooklan Phillips

I was playing basketball and I started having the worst back pain. I normally am never sick and I’m not the type to complain about an injury hurting me. I love playing sports, it’s who I am. I would never complain about an injury if I didn’t think it was serious.

Courtesy of Brooklan Phillips

In the wake of the pain, I went to the chiropractor twice a week and it never seemed to help. In January 2018, I started having, or so we thought, constant urinary tract infections (UTIs). Eventually, the pain stopped, and I continued on with sports. It was now track season, my favorite season. I ran the 400, 800, 4×400, and 4×800. It was our first indoor meet at East Central. I ran the 400 and collapsed at the finish line.

I had the worst pain, a pain I couldn’t even describe, in my hamstring. I was carried to the trainer where she told me I was done and to check in with my trainer at home. The athletic trainer at my school told me I was faking and nothing was wrong with me. So, I continued running through the pain. Eventually, it got so bad I could barely walk. I couldn’t even move my foot to drive. I told my mom and we went to the doctor.

He examined me and told me I pulled my hamstring. He took me out of sports and put me in physical therapy. I went to therapy 3 times a week for 6 weeks. I was released to run again right before sectionals. I went to the conference meet to run for the first time since my injury, and I once again collapsed at the finish line. I was in so much pain I couldn’t get up.

In July, the doctors finally agreed to do an MRI to rule out a tear. The MRI showed a fracture in my pubis ischium. I was put on crutches. My mom got a call late that night, way after office hours, from the Ortho Indy doctor saying something didn’t look right on the MRI and that he made us an appointment with a colleague of his early the next morning.

The next morning, we went to this new doctor and he looked at the scan and told us there was this large mass on my ischium. He wanted to do a biopsy on July 13th. I told him he was crazy and he would have to reschedule because there was no way I was missing volleyball camp! But the biopsy took place on July 13th (I didn’t get my way).

Then, on July 18, 2018 (a day I will never forget), the doctor told me three words no one ever wants to hear. ‘You have cancer.’ I was diagnosed with Ewing Sarcoma, a rare form of bone cancer.

You’d think when you hear those three words everything changes. But I just turned numb. My mom and dad started crying as he was explaining how I would have to go to an oncologist and do chemotherapy, have surgery, and maybe radiation. I just sat there, staring at the wall, trying not to cry. I couldn’t understand a word he was saying. Too much was going on. I needed air. I couldn’t breathe.

I was asked if I had any questions and all I could manage to mumble was, ‘Will I lose my hair?’ I was 16, I was in high school, I was a girl. I couldn’t be bald. I just couldn’t. Everything was happening too fast. Was I going to die? I couldn’t die. I had so many things I hadn’t had the chance to do. What about school? What about sports? Kids? Would I ever be normal again? How was I going to tell my sisters? I couldn’t leave them.

The next few weeks dragged on. Doctor after doctor, way too many tests, and way too many tubes of blood later, it was time for treatment. My oncologist told me I should harvest my eggs because there’s a very good chance I would be infertile after this. My mom left the decision up to me. But I was young. I had no idea if I wanted to have kids. I hadn’t even thought about it until now. I eventually decided to harvest my eggs.

On August 9th, I started chemo. It was supposed to be the 8th, but there was no way I was missing my first day of junior year. On the 9th, I had surgery to place my port in (which is where they inject the chemo so they don’t use your vein every time). I was terrified for the first day of chemo. I had no idea what it would feel like. I had never stayed the night in the hospital before, so it was a totally different experience. I woke up the first night screaming in pain. My whole body ached. I couldn’t bend my hands or fingers without feeling like they were dislocating. I couldn’t move my body without excruciating pain. I just wanted it to stop.

I had 6 cycles of chemo; each bag harder than the last. For weeks, I couldn’t eat. All I wanted to do was sleep. It was awful. I was depressed and just wanted all the pain to stop. I didn’t care how. I would throw up at the smell of food. Even the thought of food made my stomach turn. I was in so much pain. Physically and mentally. I tried to push through it all, unfazed. But it just wasn’t a reality.

Courtesy of Brooklan Phillips

On August 23rd, I lost my hair. That was the most traumatic thing I had to experience. Standing in the mirror, pulling out chunks or just standing there while it just falls out with the slightest movement, isn’t something I would wish on anyone. I balled my eyes out when I was completely bald. No matter what others said, I felt ugly. I felt terrible about myself. I was the bald girl with cancer.

When homecoming came, I had this beautiful red dress I was going to wear. I put on the dress and heels, did my makeup and when I was completely ready, I looked in the mirror and crumbled to the ground with tears streaming down my face. What was I thinking? ‘Bald doesn’t go with a dress,’ I thought. I wasn’t pretty. I looked ridiculous. I looked sick. I had lost too much weight. My eyes looked sad; I wasn’t myself. I couldn’t even recognize the girl staring back at me in the mirror.

I quickly changed out of the dress and into sweatpants and a hoodie. There was no way I was going to homecoming. I told my friends to go without me, but a few minutes later they all showed up to my house in sweatpants ready to go to the dance. Knowing I had friends that were willing to go to a dance in sweats just so I felt comfortable and didn’t feel like the girl with cancer for one night made all the difference in the world. I will cherish this forever.

Courtesy of Brooklan Phillips

After I completed the 6 cycles of chemo, I had surgery to remove my pubis ischium and pubis ramus. Then I had 12 more cycles of chemo.

Surgery was in November 2018. It was scary to think they were removing part of my pelvis. As I was laying on the bed being pushed down to the OR, the plain white walls seemed to go on forever. The guy pushing me kept talking but I couldn’t understand him. I was tired. My body was weak. What if I didn’t make it through this surgery? What if I bled out? What if afterwards I couldn’t walk? How was I going to play sports with half a pelvis? My mind couldn’t stop racing. When would all of this finally be over? I couldn’t take it anymore.

After the surgery, I was in the most pain I have ever felt in my life. I wanted to give up. But I pushed myself harder than I thought possible. They said I wouldn’t be walking for 4 months after surgery. I was walking in just two weeks. At 4 months post-surgery, I was walking, driving, and I was starting to jog. I was determined to play sports. To be normal.

Courtesy of Brooklan Phillips

The last 12 cycles seemed to drag on. I basically lived at the hospital. I would sleep all day and at night my nurses and I would play games, watch TV, or just talk about life. My nurses were my best friends. They didn’t treat me like I was only the cancer girl. They would sneak me out of my room at 2 a.m. and we would go outside and play on the playground or they would come and sit in my bed and paint my nails. Anything to get my mind off being stuck in the hospital. That’s the only thing I miss about being at the hospital, always having them right there when I was feeling down or sad about my diagnosis. Peyton Manning Children’s Hospital has the best nurses, and I couldn’t imagine being anywhere else this past year.

Courtesy of Brooklan Phillips

On June 7th, 2019, I rang the bell! I was officially done with chemo and CANCER FREE!

Courtesy of Brooklan Phillips
Courtesy of Brooklan Phillips

Having cancer and what you go through is hard to explain because you’ll never truly understand until it until you go through it. I saw this on Facebook a while ago and it’s the best way to describe cancer in a way everyone can understand:

‘Imagine you’re going on about your day and someone sneaks up behind you. You feel something press up against your head and someone whispers in your ear, ‘Shhh…don’t turn around. Just listen. I am holding a gun against the back of your head. I’m going to follow you around like this, for the rest of your life. I’m going to press a bit harder, every so often, just to remind you I’m here, but you need to try your best to ignore me, to move on with your life. Act like I’m not here, but don’t ever forget…one day I may just pull the trigger.’ This is what it’s like. Everyday there’s a constant fear, the constant ‘what if’s.’ It’s hard to breathe never knowing what will happen.

If you’re going through this, just remember there are also the positive things in life. Don’t forget them. Never miss a single thing. Hug your loved ones. Always, always remember you are alive, and you are strong. It may be the hardest thing you ever do, but you must get up every day and smile, laugh and live. I didn’t think I would ever have to go through something like this, but I wouldn’t change a single thing.

This year was the absolute worst year of my life, but I made it. I found a part of me I never knew existed and I will always be grateful for this year and for cancer. Cancer doesn’t define me, but it did make me who I am today. A happy, strong, beautiful, BALD, 17-year-old.”

Courtesy of Beck Myers Photography

This story was submitted to Love What Matters by Brooklan Phillips of Connersville, Indiana. You can follow her journey on Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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