Building a Team of Champions to Combat Blood Cancer
How has blood cancer affected me?
Besides a rough birth I was one of those kids that rarely got sick. I only had the flu two maybe three times and hardly ever caught a cold. At age 21, I was preparing for school at John Hopkins University when I started to experience severe back spasms that prevented me from standing without assistance. I went to the doctor 3 times and each time I was misdiagnosed with something that would present the same or similar side effects. I was treated for viruses from the flu to Mono.
After a blood test from a specialist 2 months after the first symptoms were felt, it was determined that I had cancer. Acute Lymphoblastic Leukemia ( ALL ) summed up all of the symptoms and all of the confusion. Told I only had a day and a half to live and that I should have been dead by my blood test results, I was in the hospital for the majority of a year and a half from that day of diagnosis on June 7th 1996. During my time in the hospital I did a clinical trial that used multiple chemo treatment’s which felt like every type in the book.
After going into remission I needed total knee replacements on both knees because of the combinations of drugs being used to treat the cancer. Shortly after recovering from the knee surgery I started to notice symptoms of ALL and the cancer was back. I did high dose chemo and radiation but it had little effect until an unrelated donor was found for a bone marrow transplant. This happened that same year September 4th 2003. I am currently rejecting the transplant and living with it because unlike an organ transplant you cannot remove bone marrow once it has been placed in the body. I live with rejection or Graft verses Host Disease (GVHD).
I began speaking to groups to raise awareness of blood cancers and the need for research when I came across the Colleluori’s. The family was there speaking on behalf of Nick and we clicked that day. They told me about their foundation called Headstrong and I wanted to do anything I could to support their efforts in Nicks name. This disease turned my life upside down and dashed some dreams but new ones were created through my illness and new relationships. My biggest dream now is to find a cure for blood cancers.