My story/march/procession/pilgrimage/trek/voyage began in the late fall of 2010, when I was diagnosed. I was starting my freshman year in high school, in a new neighborhood. I felt nervous about starting at a new school with no one I knew and didn’t know what to expect. I was sick a couple times in the fall, when usually I only got sick once or twice a year. But, I credited it to the new environment. What I didn’t know was that I had high-risk AML and that I would spend the majority of the next two years as an inpatient.
By the end of the 2010 I had started my chemotherapy, lost my hair, stopped going to school, and basically lived on the third floor of Children’s Hospital.
In 2011, I spent 265 days of the year inpatient and this year, I’ve spent 108 on the cancer unit. Having things to distract me from what I was missing out on kept me from falling into depression. One of the best things I got was an iPad from Goal 4 the Goal Foundation that help keep me entertained and connected with my friends.
I had several complications throughout my treatment of heavy-duty chemo. After my first round, I developed an aspergillus fungal infection in my lungs (due to being immunosuppressed), which postponed my transplant date.
Another complication was finding a bone marrow donor. I am Native American and Ecuadorian, so finding someone to be my match took longer than usual and I had to get more chemo to hold my disease at bay until a suitable donor was found.
One of the worst side effects from my treatments was pancreatitis. I have gotten it twice now, since my transplant. I underwent major surgery to remove a third of my pancreas, and many procedures to drain pancreatic fluid collections. There were many times when I went for weeks, or months without eating and had to rely on either NG tube feedings or feedings through IV.
I am outpatient now and relatively stable. I’m on meds to control graft versus host disease (GvHD), which happens when the graft from the donor recognizes my body as foreign and generates an immune response against me. Since my transplant, I’ve had no recurrence of disease (knock on wood).