Douglas is happily married with four children. He thought nothing would separate his family. In 2013, he was turning 38, and looking forward to celebrating with his wife and four children. But instead, he received news from his doctor that he had desmoplastic small round cell tumors, or DSRCT.

DSRCT starts from connective tissues found in the pelvis and abdomen. From there, it can spread to other parts of the body. This form of cancer is extremely rare – some reports state there have only been 200 cases since it was first described in 1989 – so oncologists know very little about it. 



“I was diagnosed with Stage 4 cancer,” says Douglas. He adds that DSCRT is usually diagnosed in children. The fact that the doctors found it so late gave him a poor prognosis. “I had a 15% chance of living for five more years,” said Douglas. “We were devastated.” 

Soon after the diagnosis, Douglas began aggressive treatment for DSRCT. This included radiation, which permanently damaged his right lung. He needed to use oxygen equipment so he could breathe.  

As if his current struggles weren’t difficult enough, he was running out of local treatment options. Then, Douglas found out about a clinical trial at Memorial Sloan Kettering Cancer Center in New York. He said, “This trial is our last hope.”  

He was able to pay for the first few rounds of the trial. But this came at a high cost – and not just a financial one. 

“My wife and I were in New York all summer as we began the trial,” said Douglas, “and we were seeing the emotional toll of being apart as a family. We needed to be back together and somehow still do the trial.”