Teen's journey inspires him to ease the road for others

By Janine Anderson

Saturday, October 22, 2005 2:05 AM CDT

Five years ago, while David McNutt was playing outside, he felt funny. So he went in and did what many 12-year-old boys would do. He got a Fudgesicle and took it to his room.

When he woke up, he was not at home; he was at Children's Hospital.

David, now 17, of Burlington, doesn't remember what happened in between, but the rest of his family does. His older brother and sister, Louis and Laura McNutt, were home that day, as were his mom and stepdad, Karen and Mark Brenneman.

Mark heard what sounded like one of the children crying and went to their rooms to check on them. Karen went to check on Laura.

"Mom came to ask me if I'm crying," Laura said. "Then Mom was blocking the door and Mark's picking David up and carrying him out," Laura said.

The family lives just down the street from Burlington's hospital, and within minutes David was in the emergency room.

While there, Karen called back home to ask her two older children a difficult question. Doctors had told her that David's seizure was likely caused by drugs.

Louis answered the phone.

"Mom called and said I have to find out what kind of drugs David took," he said. He told her that there weren't any drugs in the house.

Then the doctor came back into the room, Karen said, and he made it clear that David's problem was not drugs.

A tunnel in his brain

The MRI showed a tumor the size of a golf ball and a cyst bigger than a baseball inside David's skull, pushing on his brain. On the MRI films, the cyst looks like a gigantic hole in David's brain. The tumor is hard to see without training, but the cyst looks seriously wrong at first glance. "Everybody called it the train tunnel," Louis said.

David was diagnosed with craniopharyngioma, a disease characterized by a non-cancerous tumor and cyst that grow around the pituitary gland. The pituitary gland controls many body functions, including growth and metabolism.

A few months after the diagnosis, David and his family were given the opportunity to apply for a Make-A-Wish Foundation wish. The organization grants wishes for children with life-threatening medical conditions.

"He was depressed and didn't want it," Karen said.

A medical journey The family went forward with treatment: surgery to remove the tumor and drain the cyst. Later he would receive radiation to kill any abnormal cells that remained. In the process, it also destroyed his pituitary gland.

David reacted badly to some of his medications, hallucinating and trying pull out his IV tubes. Another time, an over-the-counter medication kept him up for three days straight. Because of the damage to his pituitary gland, doctors were afraid that the sleeplessness could be a permanent problem.

Once he went home, David and his mother had to return to Children's Hospital for regular radiation treatments. They learned a juggling routine while they waited, often 20 to 25 minutes for the short treatment.

David did well for a while. Then he had a seizure in school the day he was supposed to go off his seizure medication.

His cyst had reappeared.

He had a second surgery so doctors could put a reservoir in his head that would hold the fluid that kept filling the cyst. The reservoir could then be drained from the outside.

A second chance

The family considered Make-A-Wish a second time, in 2004, when David was in a better position to take advantage of the offer. David qualified, and started thinking about what he would like to do. One early idea he had was a trip to Europe, but he ultimately decided against it.

"I decided to do things that would benefit me now and get things going," David said.

Renee A. Kirnberger, director of development and communications for Make-A-Wish of Wisconsin, said about half the wishes the organization grants are travel wishes. Other popular ones are computers, entertainment systems, bedroom redecorating or meeting celebrities.

"I wanted to help out," David said. "I just remembered all the things I went through, all the things I had to give up. Caffeinated soda, maybe going blind. That's the kind of stuff I wanted to not have happen to other kids. That's what I don't want kids to have to go through. It's not just hell on us, it's hell on everyone who cares about us."

David takes many medications to compensate for the loss of his pituitary gland. One side effect is extreme weight gain. He wanted to get in shape, and help others who have gone through similar things.

David decided to participate in the 70-mile Lance Armstrong Foundation Ride for the Roses in Austin, Texas, Oct. 21-23. The event raises money and awareness of the Foundation's work to inspire and empower people affected by cancer. Different fund-raising levels entitle participants to special jerseys, free ride entries and the chance to ride alongside Armstrong.

Making the wish come true

David's older sister Laura, 19, took on his cause and started soliciting donations to fund his participation in the ride. and posting information on how to give to David's fund. His whole family is helping, but Laura is his manager. "She's what you call a people person," David said. "I'm just the workhorse."

With her help, David raised $7,000 to participate in the ride. Another $8,000 has come from an Evansville, Ill., resident who heard about David's wish. Todd McLaughlin sponsored two local cycling events to help raise money.

The $15,000 has qualified David to meet Lance Armstrong and ride alongside him for part of the ride. "(Meeting Lance Armstrong is) not as huge a deal as making this money to help other people," McNutt said.

Make-A-Wish organized the donation of a Trek bicycle, and a personal trainer from the Burlington Wellness Center. They are paying for some of David's family to come along with him; donations from 22 area GM dealers will pay travel expenses for the rest of the family.

It's getting harder to train like he should now that fall is here. "With school it's not as easy," David said. "With a jacket on, it causes a lot of wind resistance. I feel like a kite."

They are all looking forward to the trip. "We've been in survival mode for so long, it'll be nice to take a break and have some family time."

His family will be there when he finishes the ride, as they have been while he trained for it. He plans to ride the full 70 miles. It will be the longest he has ever ridden - twice as much as he has done in any one day.

He has enjoyed the training process, getting in shape, and working to help raise money for a foundation that helps others who have had tumors.

His success in training for this ride - and his participation in it - celebrates how far he has come since his diagnosis five years ago, something his family is happy to share with him.

On the Net: Make-A-Wish Foundation, http://www.wish.org Lance Armstrong Foundation, http://www.livestrong.org

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