Nobody expects to hear the words “Your child has cancer.” Nobody is prepared. And in our family’s case, our son Emmett was diagnosed with leukemia in an emergency room, and treatment began that day in the ICU. We had no time at all to prepare, or even to comprehend it all at the time.

Neuroendocrine tumors (NETs) are called the zebra of cancers because they are rare, and behave very differently from other cancer types. While NETs are typically small and slow growing, they can develop anywhere in the body, most commonly the stomach, intestines, pancreas, lungs and liver. Since they don’t show up on typical PET scans, finding them at early stages or detecting metastasis is difficult.

When Megan Johnson was 21 months old, a large tumor collapsed her lung and pushed her heart to the other side of her chest. It was a primitive neuroectodermal tumor (PNET), a rare and very aggressive type of cancer. Doctors advised her parents that her chances of survival were less than 10 percent.

Four weeks after her 33rd birthday, Crystal found a lump in her breast. When she told a good friend and co-worker — whose mother happened to be in treatment for metastatic breast cancer — the friend told her, “Don’t mess around.”