“Having a sick child is beyond surreal. It is the scariest journey you could ever go through in your life,” Stuart reflected. “After Quincy got the diagnosis, it was like we were suddenly in a twilight zone, taken out of our normal lives, dropped in a foreign place and stuck in a room night and day. It changes you.”
Doctors administered the chemotherapy that is typically given to JMML patients in powerful doses to slow the cancer, but it did nothing. The infant’s spleen began to protrude from his abdomen, making it difficult to eat and breathe, and soon Quincy was sent to the operating room for an emergency removal of his spleen.
While Quincy recovered from his splenectomy surgery, Stieglitz approached his parents about trying an oral medication called sorafenib, an FLT3 inhibitor that has been effective in treating many adult liver and kidney cancer patients whose cancers are driven by changes in FLT3.
The drug had never been tested in clinical trials for infants, so even the proper dosage was unknown. In fact, an earlier study even recommended against sorafenib for JMML because it had found no FLT3 alterations in a group of patients with the disease.
“I was scared but felt comfortable knowing this was the shot we needed to take, and really felt like everyone was doing their due diligence,” Stuart said. “It was a risky but promising approach to his treatment, and we needed to pray, cross our fingers, and believe in the best. They asked us to trust them, and we did.”
A mere three days after Quincy started taking sorafenib, his white blood cell count plummeted from an abnormally high 70,000 to a normal level of 10,000. Two weeks later, the normal levels held steady, and Quincy finally was able to move back home after more than four months in the hospital.