Elisa’s Story

Site created on November 10, 2018

Thanks for visiting. I'm using this website to keep friends and family updated as I am treated and undergo a  bone marrow transplant. 

This all started back in the fall of 2014, when I suddenly developed polyarthritis in all of my joints. Some of my high school friends might remember that I could not perform simple tasks like unscrewing the cap on a water bottle, and on the worst days I couldn't get out of bed. After several visits with various specialists, we found a rheumatologist, Dr. Dedeoglu. She has proven to be the best, most caring and dedicated doctors that I have met. She is the one who, after several years of countless blood tests, bone marrow biopsies, and false diagnoses, found the GATA-2 mutation.


This past spring, things took a turn for the worse (and prompted Dr. Dedeoglu to conduct the genetic testing) when I caught mononucleosis. Because of my compromised immune system, I was unable to fight the infection as most people would. I was feverish and nauseated, unable to keep down any food, water, or medicine. I was then hospitalized and lived off of an IV. At the hospital, the doctors then discovered that I also had cholecystitis--inflammation of my gallbladder. They immediately removed my gallbladder laparoscopically, which was the least invasive method possible. Despite this, the procedure took a huge toll on my body, and I ended up being admitted back to the hospital four times in the next three weeks. 



After this chaotic time in and out of the hospital, I was informed of my diagnosis, and I had to make a decision: get a stem-cell bone marrow transplant now, and miss a year of school to recover, or wait until I graduate and then have the transplant. I elected to get the transplant done now, because it has become apparent to me that I cannot function at the level I need to in order to perform well academically and have a social life. I also do not want to risk becoming leukemic, which could happen in ten years or in a month, as my doctor, Dr. Antin, put it. 


I am now waiting to hear from my team about when I will get the transplant and what the next steps are, and will make updates here as often as I can.

Newest Update

Entry 9.

Journal entry by Elisa Alexander —

Even better news!
I'm going home today!

With a white blood count of 1.76 and an absolute neutrophil count of 880, I'm heading home at around noon. I'm feeling great, and so excited to finally get out of this hospital pod. 

At this point my nausea has gotten much better and the other symptoms are under control. I'm almost completely bald, as well--it's amazing how long it took for the chemo to make my hair fall out! I didn't expect such a delayed reaction.

Anyway, celebrate with me on this wonderful day!
Read More of the journal titled "Entry 9."
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