My name is Alex Ramer, and I am an engineering student at the University of Michigan. My brother Brent and sister Lauren carry a rare genetic mutation that predisposes them to all forms of cancer (Li Fraumeni Syndrome). They have battled a combined eight different cancers.
In 2011, when I was in the eight grade, my younger brother Brent was diagnosed with osteosarcoma, a type of bone cancer, in his hip and my sister Lauren was found to have a golf ball-sized brain tumor. Consequently, my parents were required to be at the hospital - including repeated and extended stays in New York City - to care for Brent. Surgeons removed half of his pelvis, which risked amputation of his entire right leg.
In February of 2015, my brother developed Acute Myelogenous Leukemia, a devastating side effect of prior chemotherapy. We celebrated the fact that I was a perfect sibling match and able to donate my bone marrow to him.
In July of that year, I donated bone marrow to him. For two months, my immune system battled to beat off his cancer and replace his old immune system. However, my cells didn’t take, and he relapsed with AML. In November of 2015, we tried again. This time, however, I donated peripheral blood stem cells to him. Fortunately, my cells took over and my immune system replaced his! Our family was overjoyed.
A year later, he developed necrotizing fasciitis (a flesh-eating bacteria.) I had the unique opportunity to donate my skin, because Brent had my transplanted immune system, which recognized and accepted my skin. This had never been done before.
While we try to focus on the positive, some days are simply horrible. Both my brother and sister were diagnosed with cancer again in the summer of 2017. Brent had relapsed with AML and Lauren had osteosarcoma. Brent was forced to wait until his October birthday to enter an adult clinical trial using a CAR T therapy. It took weeks for the cells to be processed and Brent became sicker during this time. On December 30th, 2017, cancer had a devastating impact on my family when it took Brent’s life.
While I am still heartbroken by his passing, I am grateful for the chance to spend those extra years with him because of the bone marrow transplants. The treatment gave him a fighting chance that he wouldn’t otherwise have.
Please join registry at Be the Match to help those that aren’t as fortunate to have a family member match. It’s unlikely that you will be asked to donate, but those that are will have the chance to save that person’s life.
At the University of Michigan, I am the president of Be the Match for the third year. Our group registers people to be on the bone marrow registry, which is a life-saving treatment for patients with blood cancers and disorders like my brother. Our organization would like to make the national marrow registry much more diverse. The ethnicity of the patient with blood cancer is a critical factor in whether they will find a donor. Patients of Caucasian descent have roughly a 77% chance of finding a match on the registry. However, African Americans only have about a 23% chance of finding a match. You can help improve this disparity by registering at join.bethematch.org/CURE29.
-Alex Ramer
