Second Relapse
The maintenance scan on July 21, a week before Juliette’s fifth birthday, detected the cancer growing again. There is a small nodule in the same spot where the last tumor was resected in March.
While not surprising, to say that we’re discouraged is an understatement. For the tumor to recur so quickly is a harsh reminder of both its aggressiveness and our lack of tools to control it.
So what now? We have added a new therapy called Selinexor since it demonstrated potency in Juliette’s drug screen, and it theoretically works synergistically with the immunotherapy she’s already on. Selinexor comes in the form of four pills that must be swallowed once per week. We have spent weeks teaching Juliette how to swallow pills, practicing almost every night since May.
The experience of administering Selinexor is jarring as a parent. We have to follow the safety protocol for cytotoxic therapies. This means wearing latex gloves to protect ourselves from the drug we’re placing in our daughter’s mouth. It means washing clothes separately if she vomits the medication back up. It means immediately cleaning up any urine on the toilet seat, as her urine can be toxic for up to 48 hours after ingestion.
We’ll find out if the tumor is responding to this treatment at our next scan in late September.
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