If the odds are 50/50, it’s not out of line to think, to hope, you’d be on the winning side of things.
And Rachel and Ben Smith did all they could to live as if their fortunes would change.
Instead, they’re facing the imminent passing of their 2-year-old son, Luke.
“It’s the cards we were dealt,” said Ben Wednesday.
For the past year the young family, including son Lincoln, age 7, has tried to help Luke withstand the ravages of a rare form acute myeloid leukemia, specifically, AML 16:21 FUS-ERG. The strain occurs in about 1 percent of AML cases, a type of blood cancer that targets bone marrow.
It began last April when Rachel discovered a lump on Luke’s neck. He was 18 months old.
“I had him at the doctor’s the same day,” she said.
Which wasn’t typical of Rachel.
Because Ben is a nurse practitioner at Allen County Regional Hospital’s emergency room, Rachel, who works as an assistant for Tod Davis, a district court judge in Woodson County, leans on Ben for medical advice.
Rachel credits her “mother’s intuition” that this was different. “Something in my gut told me that we needed a doctor,” she said.
Today, Rachel says that “intuition” has turned into “paranoia.”
“I text his doctors all the time if I think the slightest thing is off. I’ve had to talk myself off the ledge a few times, arguing with myself as to whether something is significant,” she said. “I don’t know now if I’ll ever not worry excessively.”
INITIAL treatments included a 10-day course of antibiotics. An ultrasound determined Luke had a swollen parotid gland, which produces saliva.
“But it still didn’t go away,” Rachel said. Sometimes it feels like I’m up here, watching life play out below me. Like it’s not real. That’s not us. Everybody thinks that something like this will never happen to them.Rachel Smith, on son Luke’s battle with cancer
Their next step was Children’s Mercy in Kansas City to see an ear, nose and throat specialist, where they received the diagnosis of a mutation of acute myeloid leukemia called 16;21.
