Alexa, aka Princess Lexy, is now 13 years young. She has been fighting an inoperable brain tumor and neurofibromatosis (NF) for over a decade. Despite years of surgeries, she is very caring, brave, loves making people smile and is an inspiration to so many people. She is silly, loves to tell jokes and sing songs. Her laugh and smile melt any heart. In her waking hours, she worries about other children. She is strong and never gives up even through the pain. She is a lovely warrior princess.

More than twelve years ago, Alexa was growing at a normal pace when her parents noticed she stopped trying to walk and was dragging her left leg as she crawled. Becoming concerned, especially when Alexa started clutching her left hand tightly to her chest, they called the doctor. After running tests, Alexa’s family immediately scheduled an MRI which confirmed the presence of a large tumor in Alexa’s brain. Thanks to emergency surgery, the tumor which was the size of a Granny Smith apple, was removed. It had been pushing her brain to the right side of her skull causing partial paralysis on her left side.

In the following years, Alexa has endured numerous brain surgeries. One rendered her totally blind at nine years old. Her last surgery created many other permanent endocrine issues. Despite these setbacks, Alexa’s enduring spirit encouraged her parents to enroll her in a 2015 clinical trial where a vaccine injected in the leg tries to convince the body to attack the tumor by placing protein in places on the tumor. Even though her tumor remains stable according to the clinical trial’s expected outcome, Alexa’s tumor has grown enough to change her. Alexa’s family continues to pursue clinical trials and new treatments for her. 

During treatment, Alex’s Lemonade Stand Foundation’s Travel for Care program was able to help pay for the family’s lodging when they traveled to New York for treatment. Her mom says, “We were able to concentrate on the decisions that had to be made about Alexa's treatment and even able to have a little fun at night after a long day of treatment knowing we had a place to stay and we would be safe. God Bless you Alex's Lemonade Stand Foundation for your Travel for Care Program. Without your help we would have had to quit the trial because NY, especially Manhattan, is a very expensive place to live. Shirley and the ALSF Staff are very nice and always there with a smile that you can hear over the phone.”  The family wishes to thank Alex's Lemonade Stand for always being there with support love and with their Travel for Care Program to help children like Lexy and their families. 

Since becoming blind, Alexa learned Braille to read and uses the abacus to do math! She looks forward to replacing her cane with a therapy/guide dog someday. Her life is so much more complicated now. But even when she's only awake for a few hours a day now, Lexy still says she's never going to give up and that she will continue. We will find a cure someday for her and all the kids like her.  Her family remains strong in their faith & belief that Lexy will be cured someday.  They know it will be a long journey but are prepared to take it together.

May is Brain Cancer & NF Awareness month.  Alexa loves to do awareness videos and tells everyone we need more funding for children's cancer when so little is spent on childhood cancer research. At Alexa’s very first Rainbow Lemonade Stand, she made her point in the news by highlighting the need for more brain cancer research, one rainbow colored cup at a time.  Alexa’s family’s hope is there will be a cure and Lexy can grow up and live a beautiful life full of love and someday have a family of her own.

Information provided by Monica delos Reyes, Alexa’s Proud Mom

Updated: May 2016