“When you’re battling cancer, there’s a lot of bad. But there’s also a lot of good, and that’s because of Four Diamonds.” – Sami, Four Diamonds teen
When Sami was just 11 years old, life took an unexpected turn. Instead of starting sixth grade with her classmates, she was beginning a fight against acute myeloid leukemia (AML). What followed was a journey filled with intense treatment, strength, setbacks and support, all of which shaped who she is today.
In this Q&A, Sami opens up about her diagnosis, her experience at Penn State Health Children’s Hospital and the role Four Diamonds played in helping her family through their darkest moments. From hospital stays to Mini-THON leadership and dreams of becoming an art therapist, Sami’s story is one of resilience, gratitude and hope.
Q: When were you diagnosed with acute myeloid leukemia (AML)?
Sami: I was diagnosed with AML at 11 years old, the week before sixth grade was supposed to start. I wasn’t feeling well and went to the doctor multiple times over the previous month. They said the mystery illness would go away on its own, but it didn’t. Eventually, my doctor did my blood work, and it turns out I had 14 million blood cells, and we were sent to the ER immediately.
Q: How did you feel when you learned you had cancer?
Sami: After not getting better, our doctor sent us to the ER. The hospital staff didn’t tell us anything and were running a bunch of tests. At some point, late in the night, I was admitted to my own hospital room, and we had a bad feeling. When I woke up in the morning, the doctors were doing rounds, and they asked my parents to talk in the hall for about 5 minutes. My parents came back into my room, and my mom was crying. They told me I had cancer, and I said, “okay.” Then, they told me what was going on and what would happen. I was a very optimistic kid, and the cancer didn’t phase me, but I also didn’t realize what it all meant.
Q: What did the treatment look like for you?
Sami: Because I was already admitted to the hospital, I started chemotherapy right away. Chemo is brutal. I felt terrible all the time for no reason. Some days were better than others, but the bad days were really bad. I spent most of my first year of treatment inpatient at Penn State Health Children’s Hospital. There were a couple times I would spend a week at home, but then I would go back to the hospital for more treatment. I received high doses of chemotherapy and then radiation to try and fight the cancer. I had two bone marrow transplants. The first one was from my older sister, but it didn’t work. Before the second bone marrow transplant, we tried experimental treatments. Thankfully, the second transplant by an anonymous donor worked!
Q: How did you hear about Four Diamonds?
Sami: The first time I heard about Four Diamonds was at my elementary school’s Mini-THON. I never considered that I would benefit from it like I have. After being diagnosed in the hospital, my Four Diamonds social worker, Heather, came into my room and told us that Four Diamonds would support us by covering the cost of my treatment.
Q: Who supported you throughout your treatment and hospital stays?
Sami: Everybody. Anybody. My nurse Laura was there the first night, and I was one of her first patients. I saw her often during my time at the hospital. Laura and the other nurses would play Just Dance and Mario Kart with me. I like to think my hospital room was popping.
The child life specialist, music therapist and art therapist gave me something to look forward to and provided a distraction from all the medical things going on. Bingo was one of my favorite things to do while in the hospital, and I always tuned in on the CCTV to play. I love art and was able to continue creating pieces while in the hospital. Music therapy would make playlists and listen to music with me or even play the guitar to help me fall asleep when I couldn’t. A lot of my hospital stays were in isolation, and I couldn’t do a lot or see the facility dogs. When one of the dogs was able to come into my room, I would have to suit up in protective gear.
Lastly, my mom supported me throughout my entire treatment and continues to support me through all my post cancer symptoms. She stayed in my hospital room with me the entire time. It was like having a roommate, and we grew closer than we probably would have during that time.
Q: What was ringing the bell like for you?
Sami: I rang the bell on April 5th, 2019. It was fun to celebrate that moment with family, friends and my medical team. I used my own sequins, so I would be able to find them later in the INSPIRE sign. I was still going through cancer related things, so it didn’t really feel like it was over though. It was nice to not have cancer, but I still had the effects of cancer.
Q: What has life after treatment looked like for you?
Sami: As long as I continue to have the long-term effects from cancer treatment, it won’t feel completely over. I’ll always have scars, fatigue, deteriorating organs and bone diseases. Cancer will, in a way, always be with me.
When I look back at my time in the hospital and receiving treatment, there’s so much good and so much bad. I’ve been through the worst experiences, but I have a new family and people who care for me and about me. I had so many new experiences.
Q: How was your first THON Weekend?
Sami: My first THON weekend was incredibly uplifting. Standing on the floor surrounded by thousands of people who are fighting for cancer kids like me was truly amazing. It was so much fun, and I had such an amazing time. I can't wait to go again.
My family and I were recently paired with No Refund Theatre (NRT), and I got to meet some of the members for the first time. There was so much going on that I didn’t get to spend too much time with them, but they seemed great, and I'm excited to get to know them more!
Q: What did being the Co-President of your school’s Mini-THON mean to you?
Sami: For all four years of high school, I was involved in my school’s Mini-THON. It’s helping kids like me. I know personally how much of a terror cancer can be, but Four Diamonds makes it a little less awful. It’s important to be involved in an organization that gives back, and I love giving back to Four Diamonds because they gave me so much hope in a dark time.
Q: What are your plans after graduating high school?
My goal is to become an art therapist in a hospital. I love art and using it as an outlet for expressing emotions. It helped me get through hard times, and I want to be able to give someone else the same experience. Maybe I’ll even be able to work at Penn State Health Children’s Hospital someday.
To learn more about how Four Diamonds helps families like Sami’s while facing childhood cancer and through survivorship, click here.