Honored Kid

Danielle DeSimone

Age 21
Danielle DeSimone Kid Photo

Location

East Northport, NY, US

Diagnosis

Acute myeloid leukemia (AML)

Date of Diagnosis

June 2018

Status

Post Bone Marrow Transplant, Overcoming

Treated At

North Shore University Hospital

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My Story

Prior to June 12, 2018, I was a pretty usual college student. I always wanted to do things a little different than everyone around me, and this led me to deciding to attend college on the other side of the country at the University of California at Santa Barbara, which was one of the best decisions I've ever made. My usual day consisted of surfing with friends, skating to class, lots of math, homework, and studying, and living in a ministry house with the goal of being a safe place for other students in the community to come to do homework, just hang out, or pray for each other. I eventually transferred to Manhattan College in order to pursue a degree in Civil/Environmental Engineering. During my first semester back in NY, I started experiencing headaches weekly. In the beginning they were bearable and I thought it was no big deal, but as weeks passed, the migraines became more frequent and more intense, and by the time I finished finals, occurred almost daily. As someone who never even took Advil when I was in discomfort or pain, I began depending on Advil to get me through the day and relieve my migraines. I knew this was not normal and visited multiple neurologists and a headache specialist, who after blood work and scans of my brain still couldn't figure out why exactly I was suffering so severely from migraines. One day while interning at an engineering firm, my migraine got so intense despite taking Advil 2 hours earlier. I was having hot flashes, sweating excessively, and felt that at any moment I was in danger of passing out. I told my boss that I had to go home immediately and had my mom pick me up, knowing there was no way I could make it home driving myself. Feeling frustrated after having been seen by several medical professionals who couldn't quite figure out why I was feeling the way I did, a great friend of our family who happens to be a doctor told my mom to bring me by his office so he could examine me. After a quick examination, he did some bloodwork and we left his office to go back home. Within 24 hours of having my blood drawn, Dr. Lown called my mom and told her to take me straight to North Shore University Hospital in Manhasset. I will never forget that day. It was the middle of the day, and suddenly both of my parents came home. I was confused, because my parents both should have been at work. As they walked into the house I came out of my room with a puzzled look on my face, and they told me the doctor had called them explaining that my bloodwork was suspicious of Acute Myeloid Leukemia. They needed me to pack a bag to be ready to stay at the hospital overnight. That car ride to the hospital felt like the longest car ride ever. I was admitted to the ER, and even the hematologists at the hospital were confused how a general physician could have ordered this type of blood test and detect such a serious condition. I am eternally grateful to Dr. Lown for taking my symptoms so seriously and his incredibly quick action. I had known something inside did not feel right for months, but was told over and over that nothing appeared to be wrong. On the day of my admission to NSUH, June 12, 2018, at age 19, 50% of my cells had been affected by AML. For the next three months I went through intense and aggressive rounds of chemotherapy and bone marrow biopsies, often times not receiving the news we were hoping for: a clean biopsy. I had so many people speak the belief in full healing and recovery over me that even in the toughest times, I was hungry and absolutely desperate to see that prayer fulfilled. Nonetheless, the team of nurses and doctors maintained hopeful and persistent, and we kept fighting again and again. After the 5th round of chemotherapies, I was informed that I could move on towards receiving a bone marrow transplant. I am so thankful to my anonymous donor, who happened to be a 10/10 match, for believing in me enough to donate part of herself to a complete stranger. All I know about my donor is that she is a 25 year old female from Germany. Not a single day goes by that I don't think about her. I hope someday to be able to meet her and give her the biggest hug ever to thank her for her selfless and life saving donation. I strongly encourage you to consider entering the stem cell registry (head over to www.bethematch.org if you're interested in saving a life affected by blood cancer). On October 17, 2018 I received a bone marrow transplant, and stayed in the hospital for a couple more months until I was healthy enough to continue recovery at home. After basically living in the hospital for 6 months, I couldn't wait to be in the comfort of my own home again.  Every day presents a new battle as I continue my recovery process, but I continue to get stronger and am determined to get back to doing the things I love to do: playing and coaching volleyball, working towards getting my degree in Engineering, spending time with friends and family, and traveling. Throughout my journey, the Northport/East Northport community has been one of my strongest and greatest support systems. In particular the teachers I've encountered through my years of schooling have been some of the most persistent sources of support, and I think that really speaks to the type of community we live in. Thank you guys! Thank you for any and all support shown, whether through donation or just simply sharing the cause!  -D

The Childhood Cancer Ripple Effect

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