Inspirational Stories

My name is Amanda, and I am a stage 4b classical multicellularity Hodgkin lymphoma (CHL) survivor. It all started after spring break of my junior year of high school. I was on a ski trip when I noticed my feet were more itchy than normal. I figured it was from the boots. After coming home and realizing it had gotten worse, we went to the pediatrician. She looked at the bruises and scratch marks on my legs and diagnosed me with scabies. I did the whole treatment for that, and obviously, it didn’t work. A week or two later. we went back and had some basic bloodwork done. It showed I was anemic like every other teenage girl. I was put on iron and sent home. After that did not work, I went to the dermatologist a couple of weeks later. I was constantly bruising my legs and arms from scratching and on occasion ripping my skin open. The dermatologist put me on steroids and took more blood. By this point, I had been itching for about two months. After only a couple of days on steroids, a swollen lymph node popped up in my groin about the size of a large grape. It was hard and painless. A couple of days later, I developed a fever. At this point, the doctor and dermatologist told us to go to the ER. After going to the biggest children’s hospital in my area, we were sent home with an allergist appointment for a month later. The ER doctor told me to try lotion after I asked if it could be cancer. I had self-diagnosed myself by this point. That same night after leaving the hospital, I had an episode of chest pain and trouble breathing. So, the next morning we went to another ER. They once again sent us home with no answers. My blood work kept showing decreased anemia and an increase in my inflammation markers which eventually got scary high. I went back to the dermatologist for a skin biopsy which showed nothing. My doctor had a connection at the infectious disease clinic. I went in and had more bloodwork done. The infectious disease doctor then sent us to an oncology surgeon to get my lymph node taken out. At that appointment, the surgeon told us how positive she was that it was HL. A week later, I went into surgery where they confirmed that I had CHL. I later met with my oncologist to discuss my treatment plan. A PET scan showed that I was stage 3/4 with cancer above and below my diaphragm, spleen, and potentially my shoulder. I had a bone marrow biopsy, awake, in the office, which was horrible. My family and I went to MD Anderson for a second opinion, where I got confirmation that I was going to be doing the right treatment. I started chemo the next week. By this time, I had been itching for three months, ripping open all the skin on my feet and shins. I still have scars from scratching. My fever lasted 37 days before breaking after chemo. On top of that, I experienced back pain, chest pain, fatigue, night sweats, weight gain, and my lower abdomen hurt to the touch. My plan was AAVD plus Neulasta/Zarxio shots every other week for six months for a total of 12 treatments. Things started really well. I was able to get treatment on a Friday and be back at work on Sunday. The further into treatment I got, the harder it was. I had a super flexible doctor who cleared me to continue to dance, go to school, go to work, travel, and see all my family and friends.

In July, I got my port placed and found The Leukemia & Lymphoma Society (LLS). I knew that I was extremely lucky to be able to pay for treatment and decided to help people who weren’t as fortunate by participating in fundraising with Light The Night. I started school in August, and with September being Blood Cancer Awareness Month, we hosted a huge fundraiser for Light The Night. I didn’t let my treatment and diagnosis stop me in any way. I went to high school full time and continued my senior year. I decided to participate in a pageant to prove to myself and girls like me that bald is beautiful. I later was able to use that experience to become a bald model for Terry Costa and model prom, homecoming, and pageant dresses. I was nominated for homecoming queen and still got to have a pretty normal first semester. I missed a lot of school because the further into treatment I got, the longer it took me to semi-recover enough to go back to school. The worst symptom for me was awful bone pain that put me in bed for days. I finally finished treatment on November 29. A couple of weeks later on December 21, I had my PET scan. The results showed I was in complete remission. I don’t regret anything from my experience, and in all honesty, it taught me to be a better person. I’m grateful for my diagnosis in a way, but I also want to make sure that one day no one has to go through this ever again. It’s incredibly draining, painful, and exhausting.