Joy and Judson Steinback remember the day vividly: Two weeks before her second birthday, daughter Julia was diagnosed with acute lymphoblastic leukemia.
It was Julia’s two-year checkup. Her hemoglobin and platelet levels were dangerously low — “low to the point where they wouldn’t let us leave,” Joy said.
The months after the diagnosis were a blur.
The doctor suspected leukemia and told Joy and Judson to take Julia to Mayo Clinic in Rochester, Minn., to see a pediatric hematologist “now,” Joy said.
“If (Julia) had had a paper cut,” Joy said, “she could have died. Her blood wouldn’t have clotted.”
A bone marrow biopsy confirmed it: She had leukemia and spent the next 23 days in the hospital. In addition to regular appointments, there were emergency room visits during her rounds of chemotherapy.
“It’s the most terrifying thing you can think of (as a parent),” Joy said. “It crushed my soul.”
But now the Steinbacks are celebrating, throwing a “reverse benefit” — the No Mo Chemo Party — to thank the people who have supported them and raise money for the organizations that helped them through what Judson called “a long, long three years.”
Acute lymphoblastic leukemia is a fast-growing cancer that prevents the body from producing red blood cells, white blood cells and platelets. About 6,000 people are diagnosed with the disease every year, and it is the most common form of leukemia in children younger than 15.
The journey was tough.
A week after Julia’s diagnosis, Joy discovered she was pregnant and that it was unsafe for her to have direct contact with the chemotherapy drugs. So Judson was Julia’s primary caretaker.
Judson left his job as teacher at Three Rivers Waldorf School to care for Julia. Joy went back to work as a physical therapist at Mayo Clinic in La Crosse, and the couple relied on her health insurance to help pay the medical bills.
“(Quitting my job) wasn’t even a thought,” Judson said. “You just did it.
“All this stuff is unimaginable unless you’re in it. And when you’re in it, you don’t have time to think.”
Joy and Judson went on this way for months until little sister Jayda was born. But it was still unsafe for Joy to handle medications while breastfeeding Jayda.
So Judson cared for Julia, and Joy took care of Jayda. For a while, Joy said, it felt as though she and Judson were two single parents.
Their savings account was dwindling and the couple was struggling to keep up, so Judson launched an Earth-friendly landscaping business, Coulee Region Ecoscapes, which he now operates with Rigo Ascencio.
“It was a constant state of stress,” Judson said. “There was no off switch.”
Meanwhile, Judson’s sister, Kim Steinback, created an account with GoFundMe, a fundraising website, to help support the family, eventually raising enough money to pay off the medical bills.
The family got a much-needed vacation with the help of Make-A-Wish Foundation of Wisconsin.
And on Feb. 20, Julia finished three years of chemotherapy.
“It’s amazing,” Joy said. “She’s recovering really well.”
“Life’s been really good lately,” Judson said.
So the couple wanted to give something back to the organizations whose support overwhelmed them. Saturday’s “reverse benefit” at Boot Hill Pub will raise money for Make-A-Wish Foundation of Wisconsin, Give Kids the World Village, Ronald McDonald Charities and Caring Bridge.
“The whole gift is you get a perspective you never had before,” Judson said.
“We didn’t feel right having a benefit when we felt taken care of,” Joy said. “So we thought, ‘Why not have a benefit to raise money and give back?’
“We have had the most amazing support, I can’t stress that enough. It’s time to give back.”
“It’s the most terrifying thing you can think of (as a parent). It crushed my soul.” Joy Steinback, Julia’s mother.