My Story

Four days before my 21st birthday a tumor was found in my spinal cord. This tumor had been developing for at least seven months - which is the time it took for doctors to figure out why I was slowly becoming paralyzed from the waist down. Upon biopsy it was determined that I had a very rare form of a cancer called Primitive Neuroectodermal Tumor (PNET). I immediately began radiation to my entire central nervous system. I received radiation for six weeks and that was able to shrink the tumor a good amount, the rest would have to be taken care of through very intense chemotherapy. I received chemo for six months and then completed another year of oral chemotherapy. Everything worked and I went into remission.

Throughout my treatment I also participated in physical therapy for what became a total of three years. That is how long it took for me to be able to learn how to walk again. I still have some damage to my spinal cord and walk with a cane.

Fast forward ten years...I began having "weird" headaches that felt as if there was some type of pressure in my head. I told my doctor about this and he rushed me in for an MRI. This is when I found out that I had a recurrance of my PNET, but this time in my brain.

Due to the fact that I had already had radiation to the brain ten years earlier, I could not have it again. I underwent two brain surgeries to remove as much of the three tumors as possible; two of the three were inoperable. I also began chemotherapy which was again successfull in eliminating the tumors. Once I was found to be in remission I underwent a stem cell transplant to try and prevent another recurrance. That was hell, but I made it through and after almost a year was able to return to my job as a social worker.

Unfortunately, two years later, I am undergoing treatment again for another recurrance in the brain. This time the tumor was found very early and was able to be completely removed with surgery. The chemo I am receiving this time is less intense and has very little side effects. I am able to continue to work and my scans continue to be good showing no signs of cancer.

I am lucky because I have a very supportive husband and family that never let me down. I have always managed to keep a positive attitude throughout my struggles with this disease and that is why I fell in love with this bracelet when it was discovered. I will also be getting this as a tattoo as soon as I am done with my chemo. Thank you for creating this bracelet for everyone that has been effected by this horrible disease.