Inspirational Stories

I am a 12-year-old girl who likes to play soccer and basketball, and I am in 7th grade. I was diagnosed with myelodysplastic syndromes (MDS-EB) with monosomy 7. It is a blood cancer similar to leukemia. It is extremely rare for pediatric patients to receive this diagnosis, between 1-4 children out of every million.

My mom and dad had been noticing subtle things with me since right after Christmas. I was tired and not as active as normal. Of course, they thought this was just me being a teen who wanted to be on her phone. They started noticing I was bruising a lot and didn’t know what the cause was. I was playing basketball for my middle school, so some bruises were to be expected as I play aggressively. More than once a game they see me hit the floor to get the ball. At my last game, I was just not myself. I wasn't playing as hard as I typically do. I also had a few friends and their parents there from her soccer team, and they commented about how tall/thin I had gotten since the last time they saw me at the beginning of December. This made my mom look at me a little closer as well. That night my mom and I looked at my bruises again and discovered a couple of new ones. My mom decided to call the pediatrician in the morning. Something just wasn't sitting right with us. 

My pediatrician referred us to the CHOA urgent care in our town because they would be able to do bloodwork right on site and get results faster. My mom picked me up from school around 2:00 p.m., and we went over there. Within 20 minutes they had the results back and told us they were calling an ambulance to get me to the emergency room at the Children's Hospital. We didn't take the ambulance; my mom was able to drive me there, and my dad met us there.

At the hospital, they were waiting for us when we arrived. They reran the blood panel to confirm the results and took some X-rays. The bloodwork came back the same. My white blood cells, hemoglobin, and platelets were all dangerously low. I was admitted immediately, and I was put in a room on the Children’s Cancer and Blood Disorder Floor. That was our first sign that this was going to be something bigger than we thought. They immediately started me on transfusions, and I ultimately received five bags of platelets and four of blood. 

That was Wednesday, January 19. On the following Friday, I went for a bone marrow biopsy and aspiration and also had a CVAD line put in my chest to help administer medication and do blood draws. The doctors came to talk to us, and my initial diagnosis was acute myeloid leukemia (AML) based on my bloodwork and examining the cells. They told us they would start chemotherapy that night, and I would be in the hospital for a month, then go home for two weeks, and then back for a month. We were devastated.

A few hours later, the doctors returned and asked to speak to my mom and dad alone. They let them know that the initial results of the aspiration were not what they had expected. They were going to pause the treatment and wait for more results from the biopsy to return.  

On Monday afternoon, we were given a new update from the doctors. The cancer in my blood was only in the 8%-10% range, and that was below the 20% threshold where they would start an aggressive chemo treatment or that would be classified as AML. I was given the diagnosis of MDS-EB with monosomy 7. Lots of words we didn't quite understand. It has been explained to us that my bone marrow is not functioning properly and won't.

So, that brings us to my treatment plan. I started chemo on January 31, but luckily as an outpatient, so I get to be at home. This will be a lower dose of chemo, and the side effects should be minimal for now. I got chemo five days a week, then off on the weekends for a three-week cycle, one week on, and two weeks off. After only two rounds of chemo, I had a bone marrow biopsy, and the results came back as almost no cancer cells left. I was cleared for a bone marrow transplant. I go in on April 10 to have heavy doses of chemo and then the bone marrow transplant. I will be in the hospital for around a month and at the recovery center for around two months. I will have to be in isolation for a year, after that I can go play sports, go to school, and do everything else I did before I got diagnosed.