At the time, she and her husband, Scott, had three young children, and they all lived in Kansas City. But the chemotherapy and stem cell transplant she’d already received locally hadn’t worked, and the CAR T-cell therapyclinical trial Emily wanted to try was only available at MD Anderson in Houston, about 650 miles away by air.
“Our children were 4, 6 and 8,” explains Scott. “So we just tried to make sure their lives stayed as normal as possible.”
‘Different levels of being sick’
The Dumlers maintained that normalcy by juggling the many offers of help they received from friends and family members. But the couple also managed their children’s anxiety by offering frequent, age-appropriate explanations.
“I told them there are different levels of being sick,” Emily recalls. “Sometimes, it just means I don’t feel that well. But it’s a continuum. So on other days, I’d say, ‘Look, I’m really sick right now, but I’m going to get better.’”
‘What does cancer look like?’
While Emily was receiving treatment, Scott soothed the children’s fears by answering questions daily, whether he was at home with them in Kansas or with his wife in Houston.
“I spoke to the kids every night, and was like, ‘OK, what questions do you have today?’” Scott says. “They already knew two people who had died of cancer, so they had a lot of concerns. At one point, my 6-year-old asked me, ‘What does cancer look like?’ Which might seem pretty irrelevant to an adult. But it helped her understand a scary concept.”
The couple made a deliberate decision not to offer too much detail, particularly about Emily’s prognosis.
“The one word I saw used over and over again in online references to outcomes for people with the same diagnosis as Emily’s was ‘dismal,’” Scott says. “But after a standard chemo regimen and stem cell transplant failed to put Emily into remission, the treatment MD Anderson offered gave us an entirely new sense of hope. And we felt very confident about it.”
“The highs weren’t that high, but the lows weren’t that low, either,” Emily adds. “And we just thought, ‘That’s OK. The kids still feel comfy and safe.’”
Today, Scott and Emily have no regrets about their approach to sharing information. Their children — now 8, 10 and 12 — are all well-adjusted and show no lingering effects from their mother’s health challenge.
“Seeing what Emily went through made them grow up much faster than we expected,” says Scott. “But, now they feel like anything is possible.”