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John Kelly's Washington

Treating a Child, Healing a Family

By John Kelly
Friday, January 21, 2005; Page C11

Illness sometimes hides the inner kid, cloaking her in pain and worry. My assistant, Julia Feldmeier, met a girl who blossomed after she was cured at Children's Hospital.

"They created her. They made her like this. She wasn't like this before," said Francine Dease, watching her 8-year-old daughter, Iyonna, gesticulate wildly and convulse into giggles.

_____Children's Campaign_____
Washington Post columnist John Kelly is raising money for the Children's National Medical Center, one of the nation's leading pediatric hospitals. You may make a tax-deductible contribution online anytime between Nov. 29th and Jan. 21st. Thank you for your support.
_____By John Kelly_____
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It's not an accusation. The "they" she speaks of are the doctors at Children's Hospital who, in June of 2003, performed a successful bone marrow transplant on Iyonna, ridding her of her sickle cell disease -- and unveiling a new personality in its place.

The old Iyonna was quiet and withdrawn, weighed down by the disease. Her red blood cells -- crescent-shaped and stiff instead of soft and round -- continually blocked the flow of blood through smaller blood vessels, inducing pain throughout her arms, legs and chest.

"Sometimes she would just sit there until it was unbearable. The pain would build up, and you could see the worriedness on her face," Francine said. Advil sometimes provided relief, but at least once every two months, Iyonna was rushed to Children's.

In January 2003, doctors discovered that the stress from the pain had thinned the blood vessels leading to her brain, putting her at high risk for a stroke.

It was a strain on the family, too. Iyonna's hospital visits often lasted a week or more; Francine stayed with her, deputizing her eldest daughter, Patrice, to watch over the other children (Iyonna is the second-youngest of seven). To make things easier for Patrice, Francine imposed a stricter curfew.

"The older kids felt they couldn't do a lot of things their friends could do," Francine said.

Even when Iyonna was home and stabilized, her disease dictated life in the household. A simple trip to the Safeway in the summertime invited disaster -- the shift from warm air to the cold air conditioning could spark a pain crisis.

"We had to sit down and plan where we would go, how we would go," said Francine.

So when Naynesh Kamani, a doctor in the Children's immunology department, suggested a bone marrow transplant, Francine didn't hesitate.

"The chances of her having an enjoyable life were so much better," she said.

Salvation came with a familiar face: Jeremiah, the baby of the family, was 100 percent sickle cell-free -- and a perfect bone marrow match for Iyonna.

The transplant took place June 26, 2003. Iyonna spent the next two months in the hospital while the new marrow grew in her bones.

The Children's staff spoiled Iyonna, Francine said. They brought her gifts when she was discouraged. On her seventh birthday, the nurses baked a cake and brought in clowns.

Under the care at Children's, Iyonna morphed from pensive introvert into an unabashed ham. Sixteen months post-transplant, a toothy grin sprawls across her face. Her constant arm-flailing and head-bobbing suggest that her newest endeavor, cheerleading, will be a fitting outlet for her energy.

The family, too, has been rejuvenated. "We're starting to spend more time together, go more places. Even if it's just a trip to the park -- we couldn't do that before," Francine said. "This has been a great relationship builder."

And not just within the Dease clan bloodline. The Children's staff became like family, Francine said. Iyonna bonded with Dr. Kamani -- when she sees him on her checkup visits, she runs up and hugs him. Her brothers and sisters counted on the nurses to relay messages to their mom while she was in the hospital with Iyonna.

For Francine, the staff provided unwavering support. When she was up late keeping vigil over Iyonna, they prodded her to get some rest. They explained everything so she wouldn't be confused or shocked when the bill came. When she had questions, they answered them openly and encouraged her to ask more.

"The entire staff is excellent," Francine said, blinking back tears. "They're just wonderful, everybody."

Last Chance

This is the last day of our Children's Hospital campaign. I chose to end with Julie's story about Iyonna because it perfectly encapsulates what the hospital does so well: It gives children back their lives.

The leading pediatric hospital in our area, Children's treats everything from dog bites to cancer, asthma to sickle cell disease. It serves more than 300,000 children every year. It treats them regardless of their ability to pay. In 2003, that meant providing more than $54 million in uncompensated care.

For more than 50 years, readers of The Washington Post have helped whittle down this deficit. This year, our hope has been to raise $600,000 by today. We're tantalizingly close: As of yesterday, we'd raised $547,110.04.

You still have time to donate. I'll be closing the books on the campaign Tuesday and announcing our grand total Wednesday. Here's how to contribute:

Make a check or money order payable to "Children's Hospital" and mail it to Washington Post Campaign, P.O. Box 17390, Baltimore, Md. 21297-1390.

To contribute by credit card online, go to www.washingtonpost.com/childrenshospital and click on "Make a Donation." You'll be greeted by a pop-up that takes you right to the donation page.

To contribute by Visa or MasterCard by phone, call Post-Haste at 301-313-2200, then punch in KIDS and follow the instructions.

Join me today at 1 p.m. for my online chat. Go to www.washingtonpost.com/liveonline.

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