To get the parking attendant at Children’s Mercy Hospital to raise the stop arm for her, DeAnna Dando Ford says the magic word: “Hem-onc.”

“Hem-onc” refers to the hematology-oncology unit at Children’s Mercy, where Ford and her 9-month-old daughter, Chloe, have visited every Thursday for three months.

As a parent of a baby with cancer, Ford has learned a new language and entered a new world. And as a single parent of three, she’s experiencing it on her own.

Ford won’t forget the date, Jan. 23, when Chloe was diagnosed with Beckwith-Wiedemann syndrome, a genetic overgrowth condition seen in about 1 in 14,000 births, according to the Beckwith-Wiedemann Children’s Foundation Web site.

“I had first noticed that her tongue seemed a little larger than usual and had even seen her right side of her body looked a little larger than the left,” Ford said.

Chloe had previously spent 10 days in the hospital when she was born because of a heart murmur, hypoglycemia and a distended abdomen, all which can be a sign of her rare condition.

Babies with Beckwith-Wiedemann also are at risk for developing certain types of cancers. Sure enough, Ford learned two days after Chloe’s diagnosis that she had a 4-centimeter mass, known as a Wilms’ tumor, in her kidney. Doctors removed Chloe’s kidney six days later.

Now, Ford travels to Children’s Mercy — in a car donated by members of her congregation at Pleasant Valley Baptist Church — with Chloe for weekly chemotherapy treatments.

Chloe’s medicines, vincristine and dactinomycin, have adverse effects for a little one to tolerate.

“The vincristine makes her sleepy, and the dactinomycin makes her throw up,” Ford said. “For a little while it was just a little more than spit-up and not quite throw-up. Then it became projectile.”

Ford said she was fortunate that paying for Chloe’s medical treatments was “100 percent not an issue,” thanks to Medicare, the American Cancer Society and even national organizations that pay for gas for weekly chemo trips.

Still, though, Ford said, life as the single mom of Matt, 12, Lexy, 8, and Chloe is tough.

They live in a modest apartment and visit the coin-operated laundry a few blocks away. She decided a cell phone and cable were luxuries they didn’t need. Being with Chloe during her sickness is paramount to Ford, so having a job isn’t feasible.

“Maybe I could work, but Chloe and I have been holding each other’s hand through this — the surgeries, the puking, the needles, the IVs,” she said. “Maybe I’m helping her get through this, but she’s helping me get through this, too.

“I’m not sure working an entry-level job would make things better. I think with what is going on with her, life might become much more frustrating at that point.”

Her faith in God and her friends at Pleasant Valley Baptist are helping her get through Chloe’s medical problems, she said. Her teachers have welcomed Chloe to sit with her in Sunday school; going into a baby class would compromise her immune system. Vernon Armitage, Pleasant Valley’s pastor, has taken a great interest in her family, Ford said.

Ford said she couldn’t afford to tithe, so she donates her time to drive the church’s parking-lot shuttle bus.

She said infancy was a critical time for children with Beckwith-Wiedemann’s, but if Chloe can make it through the first two to three years of her life, her prognosis was good.

Vonetta Cann, a Children’s Mercy certified nursing assistant, said Chloe was one of the nurses’ favorites.

“She’s just so adorable. She’s one of our favorites here,” she said. “There’s four assistants over there. See how they all want to crowd around her?”

“Chloe’s real testament going through this is how it seems her cancer has been an opportunity to touch people, to show the strength of God’s love and what he can do for a person,” she said. “People are just drawn to her.”

Staff writer Natalie Shelton can be reached at 781-4941 or nshelton@npgco.com.

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