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After tumor's return, Johnsburg family hopes for 2nd 'miracle'
By Amy R. Mack | Daily Herald Staff

Laurie Radtke pauses Saturday in her Johnsburg home to wipe away a tear as she talks about what the upcoming weeks will hold for her daughter Taylor. The Radtke family is preparing to return to Phoenix, Ariz., for more surgery for the 9-year-old.

 

Brian Hill | Staff Photographer

Taylor Radtke spends some quiet time on the sofa bed watching TV Saturday in her Johnsburg home as her mom and dad pack for Arizona.

 

Brian Hill | Staff Photographer

In typical 9-year-old behavior Taylor Radtke spends some time jumping on her bed, Saturday in her Johnsburg home before being told to stop by her mom. "Do you remember how sick you were the other night? If you keep this up tonight will be just as bad."

 

Brian Hill | Staff Photographer

Laurie Radtke, right, makes more phone calls as she plans the trip to Arizona as Taylor, 9, and Blake, 7, have a snack Saturday in their Johnsburg home. Taylor Radtke and her family prepare to return to Phoenix Arizona for more surgery.

 

Brian Hill | Staff Photographer

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Published: 4/26/2009 12:00 AM

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This time there is no private jet, no Make-A-Wish trip to see the monkeys at the zoo, no frantic quest for help from strangers.

Instead, Taylor Radtke's stunned and desperate family quietly will make their way to O'Hare International Airport today to catch a flight to Phoenix where, once again, they hope to find a miracle.

The tumor, originally considered inoperable, that Phoenix doctors removed from Taylor's brain in October 2007 has returned, a new tumor has developed and a severe infection is threatening the bones around vital parts of the 9-year-old Johnsburg girl's brain.

"We're devastated," Taylor's mom Laurie said. "Just devastated."

Some of the same medical saviors who were able to remove the original tumor will again try to work their magic in multiple procedures. They knew the tumor might return, but had hoped for much more time. Taylor had been able to go back to school, enjoy family trips, even compete in the cheerleading and pom contests she loves.

But continued sinus infections that would not heal in recent months foreboded trouble. After nine different rounds of antibiotics, extensive testing revealed infection throughout her sinus cavities, threatening the mastoid bones that are located behind each ear. Worse, the scans revealed the original tumor had returned along with a new tumor.

"She can't catch a break," Laurie said. "It seems like we take two steps forward, three steps back. I just can't understand it. It's like here we go again ... I know they can't predict ... but we thought we had more time. It was crushing to get the phone call we did."

Still, they were handling it pretty well until Wednesday when nonstop vomiting left Taylor so weak she couldn't walk and Laurie and Jeff drained ... and scared. Another rough night Friday and they are eager to get to Phoenix where they hope she'll get the help she needs.

Familiar turf

They've been in this spot before. In October 2007 the Radtkes were devastated to learn their little girl's headaches were coming from a tumor initially believed to be a clivus meningioma. Told it was inoperable, their frantic quest for help prompted a call to this newspaper. The resulting stories yielded dozens of suggestions and ultimately linked them to Dr. Robert Spetzler and Dr. Peter Nakaji with the Barrow Neurological Institute in Phoenix, who agreed to do the surgery.

A generous corporation donated a private jet, strangers shared what they could, and Make-A-Wish made it a journey to remember with a special trip to the San Diego Zoo before the surgery. Co-workers donated vacation time so that Jeff could be with his family, friends and strangers alike teamed up for fundraisers and help and prayers came from across the country.

A couple of weeks later, the Radtkes amazingly took their little girl home.

They also got a new diagnosis. What was initially believed to be a clivus meningioma was actually a tumor caused by fibrous dysplasia, an unusual bone disease that can affect any bone, in Taylor's case nestling into her clivus bone, the supporting structure for her brain.

Basically, scarlike tissue develops in place of normal bone. When the bone grows, the softer tissue expands and weakens the bone. The growth was pressing on Taylor's carotid artery and a nerve that regulates eye movement.

Doctors warned the family it could possibly return but all had looked good until recently when the intricate sinus scans revealed both the infection and tumors. A spokesman for Barrows and St. Joseph's Hospital and Medical Center confirmed Taylor's return but deferred further comment, at the family's request, until after the surgery.

Reality hits hard

As she's begun to feel worse, Taylor has had to stop going to school. Thursday some of her classmates and friends stopped by to wish her well on this next journey. As her mom watched her play, the reality hit.

"It shouldn't be a treat for her to play with her friends," Laurie said, the all-too-familiar tears back with a vengeance. "I looked at her and thought this is what she should be doing every day. So much of her being a kid has been stolen. It shouldn't be a ... " She struggles for words and air. "It shouldn't ... "

"I'm sorry, I can't ... " and the tears win out.

Jeff takes the phone. "We don't know when it's going to end," he says quietly, his wife sobbing beside him. "She just can't ... it's not that she complains. She's - Taylor's - very strong - it's just a case of how much does a little girl have to go through? We don't know where to turn ... we just keep plugging along. I don't think she's ever looked up and said 'Why is this happening to me?' She is probably the strongest of all of us - she gets tired and all, but she doesn't ... "

He too stops.

"If I could say to God, do this to me, instead of to her, I'd do it in a heartbeat. A heartbeat."

He sighs. "We have to keep going. We've had a lot of support from the guys at work, our friends."

But this latest news has been hard to handle. "Disbelief," Jeff said. "Disbelief."

The next step

Thanks to friends, they were able to get four one-way tickets relatively cheaply. And they have donated housing for at least three weeks. The rental car tab has them scrambling for a better option - it's $2,100 for three weeks despite efforts to find a deal.

But at least this time there isn't the frantic quest for medical help. They feel they're in good hands.

Their focus can be on being there for Taylor - who doesn't feel so good right now. The first medical procedure is Wednesday, the first surgery on Thursday when doctors will try to manage the severe infection and, possibly, remove the mastoid bones behind Taylor's ears. Then they will decide how to best handle the tumors.

Jeff and Laurie were hesitant to share more of their journey in the media again for they felt most people wouldn't remember Taylor's story or might feel there is an ulterior motive. Mostly, they want to focus on their little girl. But they agreed because they feel the thoughts and prayers of so many people helped once before. They're hoping they will again.

"Pray. Pray for Taylor," Jeff said.

"You can't give up." Laurie added quietly. "You can't."

Card and letters

If you'd like to send a card to Taylor Radtke, please send it courtesy of Amy Mack, Daily Herald, 385 Airport Road, Suite A, Elgin, IL 60123.