When their 2-year-old daughter developed a fever in 2009, Carolina Leon and Robert Galban figured she had contracted the swine flu virus.
So they rushed Lucy to St. Joseph's Children's Hospital. A family member cared for Lucy's older brother, Robert, while Lucy and her parents waited for doctors to diagnose her.
"They did tests, and thought she might be anemic," said Robert Galban. "We were in the hospital throughout the weekend."
On Monday morning, doctors broke the news to Lucy's parents.
Lucy, then 26-months-old, had acute lymphoblastic leukemia.
"That was when the world ended," recalled Galban. "It's been two and a half years, and I'm still at a loss for words ... It's an overwhelming feeling of fear and anxiety. It's nothing you can prepare for."
Without health insurance, the Carrollwood family immediately applied for and received Medicaid.
Now, with Lucy in remission, they're making a trek to Capitol Hill in Washington, D.C., this week to talk to government officials about the importance of children's health care as part of the Children’s Hospital Association’s Family Advocacy Day.
St. Joseph's Hospital is footing the bill for the July 23-25 trip, said Lisa Patterson, communications manager at St. Joseph's Hospital. The family plans to meet with Florida representatives in Congress that include Bill Nelson, Kathy Castor, Gus Bilirakis, Richard Nugent, Dennis Ross and C.W. Bill Young, Patterson said.
"It's one thing to say Medicaid is the largest payer of children's health services, but they will be able to hear Robert and his family talk about what that mean to them," Patterson said. "Where would they be if it weren't for Medicaid?"
At the time of Lucy's diagnosis, Galban, 32, was working in restaurant management, and his wife, who is 30, was a provider relations consultant for an insurance company. Galban said the family didn't have health insurance, and were "just trying to get by."
To be at the hospital for Lucy's care, Galban and his wife adjusted their work schedules and leaned on family members in north Tampa to care for Lucy's brother.
But chemotherapy took its toll on the usually happy little girl.
Her dark hair fell out. She gained 10 pounds and then lost it. She vomited often.
Good news came earlier this year, when doctors took Lucy, now 4 years old, off chemotheraphy on Jan. 20.
She has a 90 percent chance of never having to be on chemotherapy again, said Galban, who said Lucy is now being insured by Florida KidCare. Doctors monitor her blood levels once a month by poking her tiny finger.
The family was approached by Patterson about going on the trip to D.C.
Galban hopes the family's time there will allow them to tell Lucy's story and encourage lawmakers to avoid cuts to Medicaid.
"You never would imagine you have to deal with something of this nature," he said. "When Lucy was diagnosed, she didn't have health insurance, we're thankful for the ability to have services through the government like Medicaid."
To contact the Galban family, email Robert at firstname.lastname@example.org.
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