About Ava’s Flavas

My name is Ava Edwards. I’m 10 years-old. Here’s my story:

In October of 2013, I had some dark bruises on my legs.  I couldn’t remember how I got the bruises.  On 10/15/13, my mom took me to my pediatrician to get the bruises checked out.  I was sent to have blood work and the next morning, the pediatrician called to tell us that it looked like I had leukemia.  We were sent directly to Johns Hopkins for more evaluation.

Johns Hopkins confirmed that I had CML, which is pretty rare in children.  I went home with some low dose chemo and was back in school the next week.  I continued to take Gleevec daily and my blood looked great.

My mom scheduled me to have a routine blood test at the end of June 2014, before we went on our family vacation to San Diego.  Surprisingly, my blood revealed some abnormalities this time.  Once again, I was sent to Hopkins for more evaluation.  It was determined that my CML had gone into blast crisis and I had developed ALL in addition to CML.  Now, the doctors decided that I needed chemo and a bone marrow transplant.  I was very sad, because I knew that this time, I would lose my hair. I had my first chemo dose on 7/4/14, the same day my Hickman catheter was surgically installed.  I was able to go back home on 7/9/14.

I continued with the chemo regimen for the remainder of July.  I had another bone marrow sampling at the end of the July to see how I responded to the chemo.  Luckily, I responded well and all ALL was gone. I was then able to prepare for the transplant.

I needed to find an anonymous donor. At the time, I only had my identical twin (Abigail) and my parents. Surprisingly, identical twins are not optimal donors. My parents are only 50% matches. Luckily, there were many great anonymous matches for me. I can’t ever thank my donor enough for the selfless gift she gave me.

After more chemo and intense radiation, I had my transplant on September 26, 2014. Following the transplant, a 100-day count began.  I stayed in the hospital until late October, 2014. At that point, I moved into an apartment in Baltimore, where I needed to stay until I was well enough to move back home to Howard County, MD. On December 16, 2014, I got the great news that I could move back home!! That was the best Christmas present ever!!

March 26, 2015 marked 6-months post-transplant. I was finally able to go outside without a mask and enjoy public places.   In August 2015, I was able to go back to school. Thanks to my tutors, I was able to join my sister for the 5th grade.

I’m still waiting for my 2 year-post transplant anniversary. That will be a very special date, because that’s when I can stop taking my last medication. I hope all continues to go well for me. I’ve learned how important it is to stay positive and take things one day at a time. That’s what I’m doing!

Thank you for all of your support.

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