Family of sick girl readying for move into new home

Editor's note: This is the latest in an occasional series about a southern Missouri town's project to build a house for a girl with non-Hodgkin lymphoma. In the last story in July, builders were pouring the concrete foundation. The writer's father is a member of the Ministerial Alliance that initiated the project.

DONIPHAN, Mo. -- The front lawn is bumpy and dry. The brown dirt waves, freshly tilled, are waiting for grass seed. The lawn neither welcomes nor prohibits. It is dirt.

Beyond the dirt is a driveway, which leads to a sidewalk, which runs in front of bricks and windows, which leads to a nice front door. Beyond the nice front door is an expansive space. To the left is a kitchen with a bar, a double oven and rich brown cabinets. The walls are accented with feminine colors, purple against the back wall, green in the kitchen to the left, pink beyond the glass french doors which obviously lead to a girl's room to the right. Sunshine radiates through the new windows and onto the laminate floors, which are covered in a thin layer of construction dust. The ceiling, like the front lawn, is begging for the final touches. A few ornate light fixtures are on order. So, too, are the couches. A few outlet covers are missing. The house is neither soft nor harsh. It is empty.

A voice bounces off the walls and the floors. It comes from a woman named Glenda Murray, who is giving a tour of her new home, a gift from her town to her daughter. The woman has brought one carload of her belongings, the first of many.

There are several chapters to be told about this building, about the folks who cared enough to till the dirt, lay the bricks, install the windows, hook up the whirlpool tub and paint the walls. But the heart of the story is neither the volunteers nor the house. It is the girl.

The living room/kitchen area of the new home built for Glenda Murray and her family was shown Saturday. (BOB MILLER ~ bmiller@semissourian.com)

For now, Tiffani Murray lives a few miles from here.

Glenda Murray leads the way in her splotchy-maroon Oldsmobile Eighty-eight, down a long county road, and then another, to the second or third layer of a trailer court, to the tidiest lot in the neighborhood. A sturdy brown ramp leads to an old side door, which leads to a smallish kitchen-dining area, which leads to a tight and nondescript living room, where Tiffani sits on a nurse's lap. Her belly is being fed formula from a plastic tube.

The girl who is attached to this tube gives meaning to the story of the brick house with the colorful paint and the laminate floor. The story is known in this town as "Tiffani's Miracle Makeover."

A few boxes rest near the living room of the trailer, an indication that change is on the way.

Tiffani looks tired. She wears a weary expression, her eyes a bit cloudy, her head hanging slightly to the right.

Then Glenda Murray introduces her daughter, and explains to her that the reporters are here to do another story on her. And then the little girl transforms. Her head straightens just a bit. Her cheeks turn upward, her eyes gain a twinkle and she bears a welcoming gift: an innocent and expressive smile, a big one, that, when matched with her curly brown hair and her French-tipped fingernails, makes it easy to imagine her in days gone by doing cartwheels and dreaming of becoming a cheerleader. The smile of the girl who cannot talk says what needs to be said: "Yes, I understand. I'm happy you're here."

Communitywide effort

There is, of course, some doubt. Is the smile a reflex? Does she really know what's going on? The answer comes in the minutes to follow.

Tiffani's narrative of her illness is a long one that many folks in Doniphan have followed for more than two years: Non-Hodgkin lymphoma. Lots of chemotherapy. Lots of ups. Even more downs. A bone-marrow search. A bone-marrow match. And then a transplant. Congestive heart failure. Fifty-eight minutes of resuscitation. A miracle. Brain damage. Recovery. Regression. Recovery. Regression.

Tiffani and her mother spent months in St. Louis hospitals. Tiffani's sister, Katelynn, stayed with an aunt in Doniphan.

Before the brain damage, Tiffani was a girl who knew no strangers, was boy crazy and loved church.

The girl's illness led to prayers, which led to an idea, which led to a communitywide effort, which led to tilled dirt and a driveway and windows, a nice door and painted walls. In fewer than three months, Tiffani's new house was built. The town of 1,900 people has given and collected more than $95,000 toward the house. But until Tiffani lives there, the house is merely the sum of its parts.

Tiffani was in the hospital with a near-fatal infection when the walls were going up. She's been home for two months now. Two months with no hospital visits, a modern-day record for the Murray family. It's been a difficult time, though. The girl has become so dependent on her mother, she cries and screams every time she leaves the room. The doctors have given her sedating medication which has affected her alertness. But at least Glenda Murray is sleeping now.

Before the sedation, with Glenda holding her, Tiffani was surprising her school tutor, pointing accurately to letters, identifying the names of states and capitals. She's been going to church with her mother and attending community events. The town held a benefit Sept. 21. Several hundred people attended the concert, which raised about $7,600.

Originally, Glenda Murray had hoped to move into the miracle house tomorrow. Because of her daughter's emotional dependence on her, she has not been able to get things ready to move in. While her daughter was screaming and crying, Glenda only thought of the new house as a material thing. Now that she is getting more help from nurses, who are training Tiffani to cope without her mother for short periods of time, Glenda is once again getting excited about her new home. Glenda has never before had a garbage disposal or a dishwasher. The doubledecker oven is a great feature. And the air purifying system will help keep Tiffani healthy. A brick "t" for Tiffany, was designed into the brick pattern in the front of the house, but it looks like a cross. It is a subtle touch that Glenda appreciates. Most of all she is excited about the freedom the new house will provide for Tiffani. She speaks in "whens," not "ifs."

Future mobility

When Tiffani gets her new wheelchair, she'll be able to maneuver around the house on her own. For the last two months, caretakers have carried Tiffani from room to room. When Tiffani is able to walk, she'll be able to make use of a bar-style countertop (yet to be installed) in the bathroom. When she gets more mobile, Tiffani will be able to use a microwave that's been built in at wheelchair height.

The wheelchair should be coming some time in November. By then, the Murray girls should be in their new house. But for now, for just two more weeks, Tiffani will remain here, in the trailer where the 12-year-old sleeps in a hospital bed, Glenda sleeps in Katelynn's bed and Katelynn sleeps in Tiffani's old bed.

Now finished with feeding, the nurse has moved off to the dining area. Glenda is holding her daughter, bragging about how Tiffani can move her big toes on command, a sign that neurological pathways still exist, that occupational and physical therapy are worthwhile.

Glenda gives many examples of the makeover that's going on inside Tiffani's mind. She's done so much more than doctors thought she would. She is working hard at moving body parts, holding her head up straight. She's learned to say "huh-uh" -- an alternative to crying or frowning.

Butterfly kisses

But there is still doubt in a stranger's mind. How much of these stories are a mother's desperate optimism and wishful thinking?

Then Katelynn walks in from softball practice, and Tiffani's eyes, which had become somewhat vacant again, light up once more. Katelynn asks for "butterfly kisses" and Tiffani flutters her lashes, still smiling.

Tiffani's smile turns to a frown.

Katelynn is intuitive to her sister's needs.

"You want me to hold you?" Katelynn asks.

Tiffani smiles again, an affirmative reply, but Glenda tells Tiffani she's going to have to "help" her sister.

And then the answer comes, visible proof that Tiffani not only understands what's going on, but that she's willing to work to get what she wants.

A perfectly manicured hand begins to tremble. With all the effort she can muster, as if lifting a house, her arm quivers. An inch and then a pause. Another inch, still quivering. Over a matter of several seconds, her hand reaches the height of Katelynn's neck, and Katelynn pulls her close.

A herculean effort and five more nails, manicured, go up in her own personal makeover.

And Tiffani is still smiling.

bmiller@semissourian.com

335-6611, extension 121