‘I was 11, hooked up to morphine. ‘If I get rid of my leg, I never have to go through this again?’ I had to make a decision.’: 11-year-old with Osteogenic Sarcoma voluntarily amputates leg

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“As I’m sitting here, trying to collect the words to start my story, I’m staring at 2 beautiful boys. Ones I created. The two little boys I was told would be a struggle for me to have. The two that named me ‘mommy.’ I find it fitting I am letting you all in to tell my story, while these two vibrant boys came from a damaged, yet reborn body. Life is a miracle.

I was just 11 years old. What were you doing at 11? What were your hobbies? I was teetering from the age of toys to boys, and from jump rope to cheerleading, just to name a few. I was always outside! Right from school, I did my homework, then I was able to go outside until the streetlights came on. Over the course of a couple of months, little things kept happening. I would bang my leg during an activity or just flat out ‘roughhousing,’ and would think it was sore from that. I even went to my pediatrician where they told my mom, ‘She’ll be okay. It sounds like growing pains.’ From that moment on, it was getting significantly worse.

I remember playing around in the house with my brother, the dog, and my stepdad. One thing led to another, and my stepdad bumped my leg and I burst into tears. The pain I felt was unbearable. I know it raised concern in my mom, but the doctor said it was growing pains, so it had to be, right? Little by little I would wake up every day for school, and the pain would get worse to the point where I remember one time my leg just felt stiff. I woke up in tears because it took a good couple of minutes for me to be able to bend it.

That morning, I also remember walking into school. I felt the pain with every bend of my knee. Something wasn’t right. My mom called the doctors again, and they finally set up an MRI. I remember sitting there with my mom waiting for the OK to go, waiting for them to get all the images they were looking for. I had a follow-up appointment shortly after with my pediatrician. I vaguely remember answering a few questions she had, then her asking me if it was okay she talked to my mom alone for a few minutes. At this point, I obviously still had no clue what was going on. What 11-year-old would?

Courtesy of Tessa Desiderio-Snyder

After the MRI, I remember visiting a hospital. Still, I was unaware of what was happening. From what I’ve learned now, my mom took me to this hospital to get a second opinion, but she was so happy with their plan. She just wanted to get things moving, and quickly. I had a biopsy done on my leg. Bandaged up, I was sent home right after to recover. It was small, nothing big to handle, I thought I was good! Then 10 days later came. I was sitting in a room, being checked out by the surgeon. Making sure the stitches healed okay and whatnot. When he was done, he stood in front of me and explained as simply as you could to an 11-year-old that I had cancer. Osteogenic Sarcoma on my right femur bone, to be exact. I started crying. I remember my dad and stepdad sitting across from me in chairs, and my mom right there beside me, hugging me for comfort. I didn’t quite understand what it meant, but I knew it wasn’t a good thing because of everyone’s reaction.

Once I was diagnosed, things happened fast. Looking back, it feels like such a whirlwind, but I was admitted to the hospital shortly after. I had a central line (port) inserted into my chest to admit the chemotherapy into my body. I remember when I first was admitted to the hospital I had long brown hair. I LOVED my hair. The doctors and nurses explained the side effects of chemo and how I would lose my hair. That maybe I would want to think about cutting it short so when it falls out, it doesn’t seem like as much. So, I did. No big deal. But then it started happening.

Morning after morning, I would wake up and another clump of hair would be on my pillow. Or when I would brush my hair, more than average would come out. It was a very vulnerable thing to feel at 11 when all I wanted was to be a girl’s girl and do my hair in braids and barrettes every day! I remember people saying I should’ve just shaved it off, but no way! I was holding on to every last strand, I didn’t care.

I remember visiting home one day and my mom taking me out front into the yard and taking a few pictures of me before all my hair completely came out. Looking at the pictures now, I chuckle to myself. ‘Really Tess? That ponytail is holding onto a couple of strands, how silly!’ But it wasn’t for me then. It made me feel like a girl still. Like normal. Like me. Anything that made me feel a bit of normalcy was important to me.

Courtesy of Tessa Desiderio-Snyder
Courtesy of Tessa Desiderio-Snyder

A month after that, I was so sick from the chemotherapy I had to get a feeding tube inserted into my stomach. I couldn’t keep anything down, along with spurts of throwing up blood. I was on so many different types of chemo, with one being the strongest. My treatment got so intense. I basically ended up living in the hospital. At first, I would be lucky to get a room of my own. For the first month or so I was in and out while they were trying to figure out the different chemotherapy amounts to give to me.

After time and them realizing how severe my treatment would have to be, I had my own private room. 99% of the time it was the same one! I swear between the nurses and housekeeping, they would keep the room open for me if I went home for the day. They wanted me to feel special I guess while I was going through this crazy time. Oh, and yes, I said day. I was LUCKY if I got to see home for one to two nights each week. When I was getting this type of chemo I had at the strength I was given, you had to be closely monitored. My week went somewhat like this:

Treatment started on a Monday and finished around Wednesday evening, then my urine was tested every single time to make sure the chemo was coming out. I wasn’t allowed to leave the hospital till my urine was clear of chemo. Because of that, I was lucky to be able to get home by a Saturday or Sunday but ended right back to the hospital by Monday morning. Admissions are forever embedded in my mind.

Courtesy of Tessa Desiderio-Snyder

About a month or two into the chemotherapy treatments, I remember a meeting being held in a conference room. A big round table, my family, doctors, and papers, pamphlets, and videos. It was a meeting to talk about how to get rid of this tumor for good. My team of doctors was amazing. They explained everything so thoroughly and explained the pros and cons of each procedure. One I remember quite vividly was to undergo a Rotationplasty. It’s where the lower part of your limb is rotated 180 degrees and attached at the hip. If you could picture it, the foot and heel would act as a knee, which I’ve personally seen, and in my opinion, it seems people have great mobility when getting this procedure. However, after a quick consideration, I knew right away it wasn’t for me.

The other procedure was an amputation. They would cut a ways above where the tumor was to ensure a clear margin of any chance for the cancer to come back. I think my parents wanted to give me some sort of ‘power’ by giving me the chance to decide what I wanted to do. After all, it’s MY body. So, they wanted me to make the decision. I caught the vibes of everyone though. Some were leaning towards the amputation. Some were completely against it because I think they just feared the unknown of how my life would turn out. But even in my 11-year-old mind, I thought, if I can just get rid of my leg and never have to go through this again, why not? They showed me pictures of people who went on to live great lives, explained I’d be able to walk again, run again, play sports, have kids, etc. I just felt it was the best option for me.

September 29th, 2000 came. My whole family was there. I mean, EVERYONE. My family is huge to begin with, and every event was like a holiday, and this one seemed to be no exception. Parents, siblings, aunts, uncles, cousins, you name it. One thing I remember is waiting to go into the operating room. Everyone was giving ‘good luck’ and wishing me well while fighting back the tears. I was young, but I knew when my family was just pretending to be strong. We were getting closer to the time of surgery, and more than ever I did not want to leave my mom’s side. I have had small ‘in and out’ surgeries leading up to this. But this was different. This was the serious stuff I was going ‘under’ for and I knew it.

Again, my parents, doctors, and nurses didn’t hide anything from me, so I always knew what to expect. My mom had bought me a teddy bear. The gift shop was our favorite spot in the hospital. Ok, and roaming the cafeteria on days I wasn’t profusely getting sick. There was this purple teddy bear in the shop one day. Purple was my favorite color! It was so soft and pretty. Remember when I said at the beginning of my story, I was ‘at the age of getting out of the toys?’ Yeah, I was. But sometimes at any age, certain things give us comfort. Princess was right by my side. That’s what I named her. Princess and mom were there with me.

Courtesy of Tessa Desiderio-Snyder

My mom was SO strong. I never looked into her eyes and thought, ‘wow she looks scared,’ even though I’m sure she was. She never allowed me to see that. I realize now that’s who I get my emotions from. (In a good way!) I was nervous, for sure. But I was more nervous about leaving my mom. She was with me every second of my journey since day 1, and she literally became my best friend. I wanted her face to be the last thing I saw before I went under anesthesia. I’m not positive exactly what happened after that, but the memory of sitting there with Princess and my mom before getting groggy is embedded in my mind and that’s what matters most to me.

Hours passed. I remember it was dark outside. Trying to open my eyes was such a struggle. I heard people talking. I also heard people crying around me, so I was determined to open my eyes to figure out what was going on! I remember the pain. Lots of it coming in intervals but it was too soon to feel anything regarding a ‘missing leg.’ I was hooked up to a monitored morphine drip. I’d press it every time I felt the pain come. My parents came over to greet me. Giving me hugs and kisses. My dad recalls a line that he’ll never let me live down, as he shouldn’t: ‘Dad, I did it!’ That little 11-year-old girl had a better mindset than most adults. How amazing?!

Recovery wasn’t done, though. Three more months of intense chemotherapy were in the books along with recovering from the amputation, being confined to a wheelchair, and eventually learning how to walk all over again. I spent Halloween in the hospital. By the time Thanksgiving and Christmas came, I was thankfully home with my family. My official remission date came soon after. January 3rd, 2001, Tessa, (me, myself and I) was CANCER FREE!

The year 2001 was a new year for the new me, literally. I focused on becoming stronger while learning how to walk with a prosthesis. My first one was considered a starter leg. It was as real (or fake in this case, LOL) as it got. A metal pole, with a place for the limb to go into covered with sock type material, and a generic foot. It didn’t bend at the knee or anything. It was specifically designed for me to gain strength and mobility. To ‘feel’ like what it’s like to stand on two feet again after 3 months of not being able to. I remember February vividly. Not only is the 1st my birthday, but I had a party at my dad’s house. The coolest thing for me wasn’t the party itself, the presents (okay, maybe a little), or the awesome Destiny’s Child cake I had (yes, I was obsessed with them from the ‘No, No, No’ days). It was being able to put that starter leg on, and greet people at the door, with TWO legs! It was so empowering for me to feel ‘put together,’ especially because I was still growing my hair back so peach fuzz was it for me. It didn’t last long, or all day for that matter. But being able to have something to stand on was the best feeling, and boy was I determined.

Courtesy of Tessa Desiderio-Snyder

There were countless times of frustration and anger, but never once did I think ‘I give up.’ Yeah, I spent a lot of time secluded; crying, embarrassed, feeling sorry for myself…everything you could imagine. Yeah, I entered middle school, and then high school. And yes, people had things to say. Some people didn’t have very nice things to say at all. But I quickly made a great group of friends in 6th grade and those girlfriends I still speak with randomly today. I’ve been asked for almost 2 decades why I walk the way I do, and before I would give the answer in a ‘how dare you ask me such a question’ kind of way. But now, the answer is so different. I love talking about it. I love showing my leg off when I want to.

Courtesy of Tessa Desiderio-Snyder
Courtesy of Tessa Desiderio-Snyder

The point is, through the depressive states and the things said about me, having one leg-didn’t stop me. For almost 15 years, I spent hiding. I never would show my leg. I always wore pants or long dresses to hide it. But, I always had bigger and better dreams for myself. I might’ve not always thought those dreams would come to fruition, but I didn’t care. I was just like everyone else. As every year passed and the older I got, the more I realized my ‘lack of’ didn’t matter. I determine my life. I determine my fate. Being told things may not happen because of what I went through didn’t matter to me. My determination and decisions got me to where I am today. I was set on not letting cancer win. I did it. I was set on not dying. I did it. I was set on at 11 years old, making the decision to have my leg amputated because I KNEW I’d be able to learn how to walk again. I did it. I was set on having kids one way or another, even if it meant treatments or even adoption, and by the grace of God, I have 2 miracle babies I created. Like that 11-year-old said to her dad, ‘I did it!’

Courtesy of Tessa Desiderio-Snyder

Two years ago, I started putting myself out there. Branding myself on social media and making a name for myself. If I wanted to be a part of inclusivity and diversity in modeling, I knew I had to take chances. I first got asked to participate in a fashion show which showcased just that. The first-ever DreamWalk Fashion show gave me my first opportunity that I will forever be grateful for. Because of the show and it going viral with several million views, I was personally featured in a lot of publications and articles. I even started my YouTube channel and finally got a chance to model (my dream)!

Courtesy of Tessa Desiderio-Snyder

I love that at 31 years old, I feel more beautiful and sexier than ever! I almost can’t believe I used to let so many things get to me. Yeah, cancer sucks. Really bad in fact. Yeah, having 1 leg may not be ideal sometimes (especially when my kids want to do crazy activities). But I was given a second chance at life! Why would I keep wasting time and energy on the ‘I can’t’ and start being empowered with ‘I CAN!’

I will have children and grandchildren to tell this story to one day. I’ve finally realized what MY purpose here on earth is. I’m here to inspire! If I get to help one person through my journey…inspire just one, God made my purpose worth it. I don’t have too, I GET too. Because I am here. 19 years later I am so proud to say to that little 11-year-old, thank you for not giving up…my life is just beginning.”

Courtesy of Tessa Desiderio-Snyder

This story was submitted to Love What Matters by Tessa Desiderio-Snyder of New Jersey. You can follow her journey on InstagramSubmit your own story here, and subscribe to our best stories in our free newsletter here.

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