When I was emerging from months of difficult cancer treatment, I experienced the most happiness I had in a long time and anticipated a family celebration. However, in the cruelest of twists: my cousin Jacob was diagnosed with cancer.  

Jacob was diagnosed with rhabdomyosarcoma and was treated at Lehigh Valley Hospital and Children's Hospital of Philadelphia. We had a “Team Jacob” Facebook page where family and friends could be kept in the loop about his treatment and where we could all spread some positivity. We shared photos wearing our Team Jacob shirts and bracelets wherever we went. Over the next few months, Jacob’s condition worsened. The cancer spread, and heartbreakingly, led to his passing in June 2024.  

It was very difficult to process Jacob’s diagnosis, let alone his poor prognosis. I learned how one of the most challenging and lasting impacts of having cancer is survivor’s guilt. The overwhelming questioning of “Why are they no longer here, but I am?” This is a very complicated feeling. These survivor’s guilt questions are not something that can be easily answered, but rather, I am learning to honor my cousin in any way I can.  

This summer I had the opportunity to intern at Alex’s Lemonade Stand Foundation (ALSF). I have been reminded of Jacob numerous times during my internship. I have been overwhelmed with many emotions as I have gotten to meet other hero families and hear their stories in detail. One mom spoke at a Foundation event about her son Declan who died from the same cancer that Jacob did. I was moved to tears thinking about how unfair it was that both our loved ones were gone due to such an awful illness. I was thinking about the wonderful things those boys would both be doing today if they were here.  

My Story 

In June 2023, after my second year of college, I was diagnosed with a pediatric bone cancer called Ewing sarcoma. At the time, I was just beginning a summer internship at Playhouse on Park, a theater near my home in Connecticut. I was experiencing chest pains since starting college and they were dismissed as costochondritis (a type of chronic inflammation in the cartilage of the rib cage) but also getting progressively worse. I went to my doctor, and she quickly sent me to get an X-ray and CT scan. After the CT scan, where I experienced getting IV contrast for the first time (always an odd feeling), my dad and I were quickly pulled into a room with a radiologist. The memories here are blurry, but I recall the doctor telling us I had a possible sarcoma in my chest. I had no clue what that was. My dad was a pediatrician and had on a very serious face, which I could tell was a bad sign. I pulled out my phone to look up what sarcoma was, and my heart dropped when I read that a sarcoma was a tumor. I had cancer.  

That same day, meeting with my future oncologist, we learned that my tumor was the size of a softball. I quickly thought about how, without my knowledge, the tumor must have been growing for quite some time. In that same appointment, I learned that my fertility would very likely be affected by possible chemotherapy treatments. Being diagnosed with pediatric cancer at the age of 20 was a huge shock. As a young adult woman in college, I could never have anticipated it.  

I was so overwhelmed by the information during this first visit. There was a lot to juggle. 

Chemotherapy caused me to lose my curly hair, which felt like losing my identity. Growing up, I was always known as the “curly girl”, as it always came up in conversation at school or other places. I even had a little series I created called “Curl of the day”, where I picked the coolest looking curl to show to friends in person or on social media. I never in a million years thought I would lose my hair, and yes, it is growing back as we speak, as I was reminded it would happen a million times whenever I complained about missing my hair.  

I also experienced the worst FOMO of my life – missing an entire year of college with my close friends. It was awful, and I thought about it constantly. I thought about how I would never get that year back. About how I should be singing in choir, a cappella, and dancing, not laying in a hospital bed. During treatment, I visited my college a few times to watch some choir and dance performances. I loved getting to surprise people and watch, but that FOMO was still there, and it was strong. When I returned last year for my junior year, it was strange knowing I only had a couple of semesters left with all of the people I began college with.   

Due to my port and constant low white blood cell count from chemo, I was in isolation most of the time, which reminded me of the pandemic. Something that helped me get through this was going to the movies at the most random times. It was 2023, the summer of Barbie and the Eras Tour movie in the fall, which I made sure to see while wearing masks and socially distancing like we did during the pandemic. 

I could not talk about my cancer experience without mentioning the hospital staff at Connecticut Children’s that made my treatment easier. My clinic nurses Katie and Karen, my oncologist, Dr. Isakoff, and my psychologist, Siddika, were always there for me. I will also never be thankful enough for my incredible surgeon, Dr. Finck. Besides being so friendly and kind, she would play Taylor Swift for me in the operating room, which brought both of us joy.  

One of the incredible medical assistants, Raul, made me smile every time I was in the clinic, even on those dark days when I had to start a new round of chemo. He was always the most cheery, personable person who I never felt judged by. There was also a nurse, James, who I talked to during my long surgery recovery, and he even played Wordle with me (although I quickly lost).  

After 14 rounds of chemotherapy with five different medicines and surgery to remove the tumor along with five of my ribs, I headed to Boston for proton radiation at Mass General.  

Looking back, one of the best experiences during treatment was at Christopher’s Haven, which was an incredible lodging choice for pediatric cancer families right by Mass General Hospital. There was a room called the Loft which was basically a common area for families to eat, hang out, and sometimes there were events. One night, a group from Tufts University called Public Harmony came to perform. This was a group of extremely talented student musicians and singers. This absolutely made my day. The fact that I was surrounded by kids my age – young adults who also shared my love of music – was incredibly powerful. They also let me sing a bunch of my favorite songs with them. I will never forget this day.  

Interest in the Internship 

While some people might think I applied for an ALSF internship solely because of my own cancer experience, it was really my cousin, Jacob, who inspired me to apply. Just like how Alex Scott wanted to help all the other kids with cancer, and how Liz and Jay Scott have continued her legacy in the most selfless and special way, I want to carry on Jacob’s memory. It was a big step out of my comfort zone to intern far from my home in Connecticut, but ALSF means so much to me and I knew it would be a fulfilling experience that I did not want to miss out on.  

A big way I was able to honor Jacob was hosting my own lemonade stand at my school, Marist University. A professor who I share an exact name with (literally, her name is Rebecca Brown!) asked me if I would like to host one during an event called Marist Fashion Fest. She said the stand would be in honor of me, but I felt very compelled to honor my cousin, Jacob. This felt like a sort of compromise, as I was able to celebrate my survivorship but also make the stand in memory of my cousin, who I continue to miss and think about often. I love how my school’s community came together for this event, and I was able to share my story with other students who were curious. I continue to look at the messages on my donation page, and I get emotional reading them.  

New Perspective 

As I have reflected upon my cancer experience in endless voice memos and journal entries, my perspective on life has completely shifted after having cancer. Things that worried me in the past seem not nearly as big a deal. Everyday annoyances feel like "first-world problems" now.  

While yes, going back to college made me worry about things like homework again, I can now realize how less than two years ago, I was most worried about my next round of chemo. I can take a step back and realize how lucky I am to worry about the smaller things. I am focusing on how I’m now walking better, breathing better, and how those curls are coming back strong. 

I also learned how to advocate for myself when it comes to medical appointments. I know my body the best, and I know what makes me most comfortable. While it might be difficult to speak up for myself, it is always 100% worth it.  

Even though I have some lasting effects from treatment, I am extremely grateful for the life-saving medicines I received. Without them, I would not be here today. I am inspired by doctors and research teams who are constantly discovering new treatments, which ALSF has directly contributed to.  

Being an ALSF intern has been extremely rewarding, knowing that I am helping kids with cancer who have gone through such similar experiences to me. This is so special. I have loved getting to know the staff, because they are all enthusiastic about the work we do, some of them having deep personal connections to the cause as well. I am heading into my senior year of college with a positive mindset – excited to meet new people, to make music, and unsure of my exact future, as many people in their early twenties are.  

I constantly think about my cousin Jacob and will always do my best to honor him. I hope to host numerous lemonade stands in my lifetime. I know my purpose in life is to be kind, make a difference, and continue doing what I love. While the anxieties of recurrence do not go away with each scan, and my brain tends to go to the worst-case scenario, I am feeling more like myself as I move further from treatment. I will be forever changed by these experiences. I feel so lucky to be alive and I strive for more children with cancer to become survivors like me.