Miracle Boy

June 15, 2020

Growing up I was a goofy, energetic kid. I would spend my time running all over the place, finding things to amuse me, even when I didn’t understand why. I would go out and play weird made-up games with the neighborhood kids until sunset. My energy was so kinetic, yet had so much potential. I’m a pretty modest person, but I know when someone has such an insane amount of hyperactivity as I did, it would be a waste not to put it into something with more meaning than tree climbing.

One day, my teachers complained to my parents that I had been drumming on my desk incessantly. I think I started doing it because I hated the quiet stillness of the lessons, which made me uncomfortable in class. My teachers were getting annoyed with it, so naturally my parents put me in drum lessons. If I was that into smacking things around, it would be a waste not to get something meaningful out of it. I began drum lessons and immediately fell in love with music. Music became everything. I would practice drums every day for hours at a time, and nothing made me feel more alive. I finally had a passion to pour my energy into. I took drum lessons from age 7 to age 10. But then, I was diagnosed with bone cancer in my right arm.

One night I was really feeling that ice cream desire, so as any child would, I went to grab myself a glorious scoop. When I dug into the tub, I noticed that it hurt my arm when I tried to dig the ice cream out. A few doctors’ visits and a biopsy later, and I had osteosarcoma in my right radius. I was 10 years old, and I really didn’t know what that meant for me. At this point all I knew was “be a goober in class” and “drum until your arms get tired, then skate”. I couldn’t comprehend how nebulous my own future seemed, so I just went along with all the tests like a lab rat, just more wiggly.

I remember my first in-patient treatment vividly. arrived at the INOVA Women and Children’s Hospital and was taken to a room in the pediatric oncology unit. I was kind of in a good mood, because I had just finished getting my port (a device that had been inserted under my skin, which distributed chemotherapy through my bloodstream) accessed for the first time and didn’t have to worry about it anymore. Getting my port accessed was extremely stressful for me, because I did not have the diabetic affinity for needles that I had acquired since. (Yes, I have been diagnosed with type 1 diabetes since). I remember how nice the hospital seemed. It was colorful and the rooms had televisions and video games, which I did appreciate. Then they started giving me the chemo, and I was a lightweight. I became furiously nauseous, to the point that my stomach was pretty much a second heart in my body. It was so bad that the nurses decided to give me Ativan. This is a medicine that helps a rumbly tummy but gives you a rumbly brain. I guess they gave me too much, because I don’t remember much after that. According to my wonderful mother, I became quite rambunctious during my happy tummy time, and ended up standing up on the bed, hallucinating that I was in command of an army of cartoon characters. I can only imagine being a mother, having your son hooked up to an IV, and seeing him just stand up on the bed, like he’s some bigshot. I am thankful that she convinced me to lay back down, but I imagine she was at least somewhat amused during the event. After a few days of vomiting to the Disney channel, they detached me from “Rob” (which I began calling the IV cart), and we went home.

I was in treatment for around a year, which was rough, because I had to complete fourth grade from home. Even worse for me, I had to stop taking drum lessons, and I didn’t have as much time at home to practice. As a side effect of chemotherapy, I was always tired and I had little to no energy, especially after a long treatment session. The weird thing is my personality didn’t change at all. In my head I was the same energetic goofball that I always was. I would just run my mouth more than run around. This led to me becoming good friends with the nurses at the hospital. They worked in such a quiet, somber environment, so I think they appreciated listening to the psychotic ramblings of the bald monkey boy that was me. If I was bored, I would make fun for myself by trying to make them laugh. Eventually they all knew me, like I was some regular at a diner.

Eventually, after the first 3 months of my treatment, it was time to take the tumor out of my arm. When I learned that I was going to have reconstructive surgery, three questions immediately emerged in my mind. “Can I keep the tumor on my shelf?” “Would it be possible for them to give me a chimpanzee bone?” “How is this going to affect my drumming?” Of course, the last question was the most pressing issue. My doctor, Dr. Wodajo, wasn’t super hopeful that I would continue my drumming career after surgery. The thought of having to stop playing music was very grave, but I was young enough to just suck it up and not believe him. I went in for the surgery, woke up five hours later, new radius in tow, and after a week of chillin’ I started drumming again. This is one of the reasons why Dr. Wodajo calls me “Miracle Boy”.

After surgery to replace my radius with a donor bone, and 9 more months of treatment, I was finally done. I have had seven surgeries, mostly on my arm, and a couple of years after my first surgery, my donor bone failed. My doctor had his engineers design a new bone for me out of titanium. It was made with this porous material on the ends that my own bones would grow into. It took the FDA about a year to approve it, which was interesting for me because I basically had this broken radius in my arm that was held together with an erector set, but eventually I had the implant put in. Now I may not be able to twist my arm, but I am a better musician now than I ever was, and I even had the opportunity to play in the All VA Jazz Band, featuring my weird robot arm. I can do pretty much everything I was able to do before my first surgery within reason, which is the other reason Dr. Wodajo calls me miracle boy.

For the whole duration of my treatment I approached life with a positive attitude, but that does not mean treatment wasn’t hard for me. I felt trapped in that hospital, no matter how many video games I had to play, no matter how many movies I had to watch, no matter how many nurses I had to test my comedy on. I still felt like I was in a strange colorful prison. Once I finished it felt so revitalizing to be out. I still have this banner that my nurse friends made for me. They all signed it with little messages, and they put pictures of my favorite characters like SpongeBob on it. I still have it hanging in my room to remind me of the lessons I learned about life from the whole experience. I learned to ignore adversity, and just make things work. I learned that no matter how bad life seems, no matter how many people tell you that you should be sad, it’s fine to just be yourself, and do things your own way. From my nurse buddies, I learned to be kind and respect all people without judgment, because you cannot learn a thing about a person without interacting with them in some way, and it doesn’t even need to involve medical equipment when you do. I have spent my entire life just deciding not to stop doing things. My life is in my own hands, and now that I am applying for colleges, I am getting all these flashbacks of what I had to do to get to where I am today. I am extremely thankful for the opportunities I have been given. My life will go on, no matter what. Even if I ended up losing my arm to the cancer, I think I would have just ended up being a pro skater, or something. Luckily, I have been blessed with luck, good doctors, and my cool robot bone.

Josh Golden