In May of 2017, at the age of 27, I started my very first job. On Thanksgiving of that year, my legs went numb. Then in January of 2018, I came down with strep throat. From that point forward I had one illness after another; cold, flu, bronchitis, back pain, side pain. Finally, after a PET Scan and biopsy, I was told in April of 2018 that I had cancer, but, the diagnosis changed three times, with a final diagnosis of Neuroblastoma. This cancer is a Pediatric Cancer, with only about 700 cases per year. This cancer is usually diagnosed before the age of two. Only 1% of the diagnosed cases occur in adults, which is about seven people.
Getting cancer is not good. And having a rare form of cancer makes it more challenging. I started my treatment in June 2018 at the University of Virginia. I had five cycles of chemo and had my stem cells harvested for a potential transplant. I have a wonderful Oncologist, Dr. Johann Hsu, who worked extremely hard to have me referred to Children’s Hospital of Philadelphia (CHOP).
I was able to go to CHOP in October 2018. I now have an entire team, headed by Dr. Yale Mosse, whose focus and research is Neuroblastoma. We started with MIBG Therapy. The easiest way to explain the treatment is that MIBG references a medicine with about 20 letters and no one can pronounce it. The MIBG allows the radiation to seek and find the Neuroblastoma cancer cells. We were to be there two to five days. I had to have a caregiver with me 24/7. And two to five days turned into 14 days. There is a tumor on my liver, and the radiation level refused to depart that side of my body in a timely fashion.
We moved forward to find out that the MIBG Therapy did not work. This did not deter my team and we went right into a low dose of Chemo and Immunotherapy. After two cycles, the scans were showing some positive results. We continued forward with two more cycles, total now four, and looking forward to new scans.
In my journey, I have endured multiple blood transfusions, platelet transfusions, and hospital stays. I know this is a hard fight, but I will not give up. I know that what I am enduring is helping me and hopefully helping others too.
I was born underdeveloped, with Pierre Robin Syndrome, a cleft palate, a learning disability, and two eye disorders. I spent the first six months of my life in the Neonatal Unit of Children’s Hospital Colorado. Apparently, this is where I learned to be a fighter and not give up. I am standing up to cancer and will do my best to kick it to the curb.