“I was a little girl with thinning red hair and ice-blue eyes. People often seemed to wonder just what went on behind those blue eyes. Most days, I would wake up, get a cup of apple juice, and sit in front of the TV in the living room next to the door. My black and brown mini dachshund, Sadie, sat next to me. She was my best friend and she just seemed to know. On days when we had to go to the hospital or leave the house for some reason, I picked out my clothes. I particularly loved wearing button-ups if I had to put on clothes.
I would go to the hospital, and it was just everyday life as I knew it. I would sit in the waiting room, and sometimes there were nice old ladies in there who would play with me. Then the nurses would open the door and call my name. I would walk through the doorway and sit next to the picture wall and have my vitals taken. Terri would usually do that. She was my favorite nurse. Then it was off to the next section of the office to have my blood drawn. I would always get stickers after. They would take the tube of blood, put it into a machine that printed out a lot of papers, and tell my mom about my counts. I could tell by their faces if my counts were good or bad on that particular day. I really couldn’t have conversations with the adults because I was too little, but I could observe and comprehend everything. I knew what was going on, and I had a heightened sense of awareness. I just hadn’t lived enough to vocalize anything just yet.
I would then sit in a room and wait with my mom. I would take off my shirt so they wouldn’t have to ask me. I hated it when they would ask me to do things. I really wanted to do as many things all by myself as I could. They would come in and then I would have to lay down and they would get the squeaky metal tray because it was time. They took gauze and would clean my port and the area around it. Sometimes the ladies doing this had fear in their eyes, visible to me. I was never scared because I knew what it was like. The nurse would get the needle with the tube and bag of gross-looking yellow stuff connected to it and they would hover it over me and ask me a question. ‘Okay, now, do you want me to count 1 2 3 or just do it?’ I would just smile and giggle and reply, ‘JUST DO IT!’ They would put the needle into the center of my port and I would lay there for not very long, probably 10 to 15 minutes, and then they would remove it and I could go home.
We would go home and I would watch Barney and play with Sadie. Sometimes my aunt or grammie would be talking to my mom on the phone and I loved it. I loved talking on the phone because I usually wasn’t allowed to go outside. I loved it when it was just me, my mom, and Sadie. We would have dinner, which usually was just a bunch of vegetables from a can, but that was okay. I would eat whatever anyone gave me. My favorites were breakfast sausage, buttered noodles, or cheese just melted on a plate. I would take a bath and put on my pajamas. After that, I would get my medicine from my mom. I had a pink medicine that we had to keep in the fridge, a red liquid, and some pills we had to crush in a red crusher that we would pour into the red liquid. I would go to bed and repeat that most days. That is what childhood cancer looks like.
I will never forget the day I found out the cancer was all gone. My mom had to convince me I could throw my medicine away for a really long time. I slammed it into the trash as hard as I could, yelling, ‘Stupid medicine!’ I remember the day I got my port out as well. I wrapped myself in my blankets because I thought in my head, they wouldn’t be able to do anything to me if I was covered in blankets. My surgeon told me I was a princess, and he told my mom I wouldn’t be receiving any stitches because that would double the size of my scar. I was carried into the room, still wrapped in blankets, and when I hit the table, I was out instantly. I woke up and was hyper as could be. I wanted to do literally everything, even though I wasn’t allowed to.
I had a sparkly pink princess band-aid sealed to my skin next to where my port was, in the fold of my arm below my shoulder. A week later, my mom wanted to take it off, but I needed that moment to be mine. I locked myself in the bathroom and just stared at my reflection in the mirror, and then tore it off and threw it away. I looked in the mirror at my new scar for the first time. That, my friends, was the end of my cancer journey. Someone once said to my mom, prior to my diagnosis, my eyes seemed wise to her and I would see a lot of things. She couldn’t have been more correct. My eyes, as I have gotten older, have since become emerald green. Someone once said to me, green eyes mean you have a soft heart. It’s interesting how we cross paths with others for a reason.
I was born in Chicago, Illinois, and my family and I moved to southwest Florida when I was 18 months old. Our lives were relatively normal, until the day that changed everything forever: February 18th, 2002. This was only a couple of weeks after we had moved. That day, we received the news no one could ever be prepared to hear. I was diagnosed with acute lymphoblastic leukemia.
A few days prior to my diagnosis, my mom noticed my legs were covered in bruises and red marks. She brought me to a pediatrician, and they told us to immediately go to the children’s hospital that was over an hour away from where we were living at the time. Little did we know, being in the hospital most of the time would become our normal. Not only did I have leukemia, but doctors immediately discovered there was a very specific underlying cause along with it. My chromosome had an extra part to it I had been born with. The doctors warned my parents, everyone who had this mutation before me did not survive and they had absolutely no treatment plan or protocol for any of these very serious and complex problems. Based on past cases, the medical professionals knew it would do me no good if they only focused on treating cancer. If this was going to work, they needed to get to the root of the problem. This meant they needed to find a way to attempt to repair my chromosome in the process of my treatment.
There were many doctors who openly stated they were incredibly afraid for me and my case. They simply had absolutely no idea what to do or where to even begin it seemed. Until one person did. A doctor from Spain was willing and eager to take on my case. This doctor had been conducting a lot of research and trying to figure out a way to fix the problem with the chromosome while treating leukemia in the process. I was the perfect case for him to conduct a medical study with and attempt to develop a protocol from. Ultimately his goal was to save my life and develop a protocol to treat myself, as well as many others down the line. He told everyone he was confident he knew exactly what to do, and this could potentially be a huge breakthrough if it were to be successful.
Many other hospital staff members were so discouraged by past cases, they did not have much hope. Everyone just seemed to say, ‘She is simply too complicated,’ but despite all of this, we never lost hope. My fight began when my parents essentially signed my life away, and I was registered into three medical studies.
Since there was no protocol, they tried many different medications and came up with one as they went. I ended up receiving seven different chemotherapy drugs, as well as three other medications over the course of about two and a half years.
The first memory I have is when I woke up from my surgery to implant my port. This took place on February 20th, 2002, only two days following my diagnosis. I remember waking up in the hospital room in a small bed, with my mom laying in a separate bed next to mine. There was a TV in the room that had been left on, and the entire room was lit up blue. I jumped out of my bed and began to run around the room, as any little girl probably would have done. My mom immediately woke up and demanded I get back in my bed. I continued to run around and giggle instead. I think that was a true sign everything was going to be okay.
I was always in very positive and happy spirits, throughout what most people would consider to be unimaginable. Something no one will ever tell you is about the emotional side of things, and how badly cancer can truly ignite anyone’s mind into flames. This happened to me. I did not know the world outside of the hospital and my house. Medical professionals did not see me as a little girl anymore. To them, I was nothing but a body. They rarely acknowledged me. I could see the fear in everyone’s eyes. This was my normal though, and I was very used to fighting so I was never afraid.
My journey gave me many ups and downs, including a very severe infection that nearly ended everything. Despite everything, I won my battle, and there is now a protocol to treat the cancer and chromosome mutation I had.
When I was four years old, they could not find any more cancer. My treatments were completed on August 26th, 2004. I continued to return to the hospital for blood work to ensure everything was still good. I remained in remission for about 10 years and when I was in eighth grade, I was finally considered cancer-free! This was all completely behind me.
Cancer changed the way I see everything. When people ask me what my experience has left me with, I always just tell them I feel a lot more. I grew up with bad anxiety and as I got older, I struggled more and more with anxiety. I felt as though the world and the people in it just weren’t very kind to me. I had some problems with owning and identifying with my survivorship.
That all changed when I was in high school, working at a grocery store. I met a lady who worked in my department with me and she asked me a question that changed my life and my perspective on things forever. ‘Why are you the way that you are?’ she asked me. She went on to tell me she could see I was not displaying a genuine representation of myself. I was blown away when she asked me this. I replied with, ‘Well, I’m a cancer survivor and so everything is just kind of weird.’ A few days later, she told me she was also a cancer survivor. From then on, we became connected by the heart. We were able to help heal each other.
I am endlessly grateful for the connections I have with other people thanks to cancer. I was finally able to begin to write and share my story, and I now identify as a cancer survivor stronger than I identify with anything else. If there is a takeaway I have from this, it is emotions are meant to be felt. We should never let anything silence our voice. I am supposed to return to the hospital every year to ensure there are no long term problems. This took me seven years to do. An incredible lady who was my teacher when I was in middle school brought me to the hospital at the end of last year. It was definitely not an easy thing for me to do.
I made a promise to myself, if I was cleared from having a chance of developing a second cancer, I would get a tattoo. I got the best news–my chance of developing a second cancer went from 60 percent to 0 percent. I got a tattoo on my foot of the date I finished treatments, an arrow with a feather on the end that is gold, orange, and pink.
Gold represents childhood cancer awareness, orange represents leukemia awareness, and pink was my favorite color when I was little. I hope my story inspires others to live by strength, to always carry hope in your hearts, and above all else, to face everything and rise.”
This story was submitted to Love What Matters by Grace Helen Herr from Englewood, FL. You can follow her journey on Instagram or Spotify. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
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