Not sure who knows her story, but I'm here to tell it once again. My niece, Brianna's best friend forever, Alexa Bolton was diagnosed with Ewing's Sarcoma in October 2014. Ewing’s Sarcoma is a very rare type of cancerous tumor that grows in your bones or in the soft tissue around your bones, such as cartilage or the nerves, and usually affects people from the ages of 10 to 20.
Alexa was 10 when she was diagnosed, with the tumors being found in her spine and her lungs. She underwent treatment for over a year and finally, after a long fight, she was considered NED- no evidence of disease. A long 4 years had passed but unfortunately, this past summer, Alexa relapsed and the tumors began to grow back again.
Most recently she was able to have surgery to try to remove what they could. Afterwards they were told that Alexa may be a candidate for an immunotherapy clinical trial, which would mean using the tumors to create a vaccine that may help to fight the disease (similar to a flu shot).
As Alexa and Sue made their way back to NYC, to get the results, the trip to NY was not what we had hoped for. Alexa was picked for the chemo only part of the clinical trial. This means that she will NOT be getting the vaccine injections at this time. We were told that if Alexa's cancer progresses by a certain percentage on the chemo only she will be able to "cross over" to the injection part of the trial, but we will have to wait this out and see reacts to the treatment before they are able to change the course of action. This cancer is so aggressive that we just wanted to hit it head on with the meds., and not wait for the worst to come, but unfortunately it was not in the cards for her to be selected. A true test of patience and strength!!
She has been sick since they returned from NY. Right now she is on 2 different chemotherapy drugs to help shrink any remaining tumors that they were not able to remove. Some of the medicine we will be able to administer from home, so Alexa can try to go to school and continue to hang with her friends and play sports. We are not sure but we are hoping that she will not lose her hair. If her counts drop she will be at risk for fevers and this could also lead to the need for blood transfusions.
As they are prepared once again to fight, my sister and Alexa will be traveling to NYC a few times per month to get medicine, blood work and scans. While they are away and travel, Sue will need to take time off of work to care for Alexa.
This will be another long journey! Another battle! Another FIGHT!
Thank you so much for continuing to join in our fight.