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Santa Rosa parents struggle to cope with 3-year-old's brain cancer


SAN FRANCISCO -- Saturday was a good day for 3-year-old Nate Wagner.

Everything that went in him stayed in him and his Dad took note of that. What once was so common is now so cherished. A facial gesture not contorted, an emerging word not tripping on the tongue, a hand movement not wobbling. Lenny Wagner notices it all.

Wagner, defensive coordinator for the Santa Rosa Junior College football team, is stockpiling, bit by bit, optimism that the worst is over for his son.

It started late Tuesday night when Nate awoke from his 9?-hour brain surgery.

"Daddy," Nate said, "I just want to play with you."

Yes, that'll be the day all right when Nate can play again, when he can resume his obsession with Thomas the Train, when Wagner and his wife, Catrina, don't have to be at their son's side as they have been for the past 16 days on the ICU floor of UC San Francisco's Children Hospital.

Last Tuesday, a team of pediatric neurosurgeons, led by Dr. Nalin Gupta, removed a malignant brain tumor the size of a golf ball from Nate. In about two weeks, Nate will begin 18 months of chemotherapy that ideally will kill any remaining cancer.

Nate had a pineoblastoma, a rare form of brain cancer. About 2,200 children under age 15 are diagnosed each year in the U.S. with tumors of the brain and spinal cord, according to the Gale Encyclopedia of Cancer. Only 15 to 40 will have pineoblastomas, an aggressive cancer.

As reality goes, this is as real and horrible and frightening as it ever gets for a parent.

"Are you kidding me?" Wagner said when he first found out about the cancer. "I have lost a lot of people in my life already. But it's not going to be Nate. It just isn't. Nate is the greatest person I have ever met. Before the surgery I told the doctors, &‘You guys are going to be famous one day because you are about to save a star!' Nate is destined to help. I know he is."

The son already has helped the father.

"I have a nice car and a great job," said Wagner, who also is SRJC's department chairman for physical education, dance and athletics. "I have a nice home in Bennett Valley. All of that, it doesn't matter. You can just throw it all away. Those are small things in comparison."

Wagner always has been a doting father, but in the daily rush to hire and evaluate a faculty of 60 people, to write 80 percent of the curriculum and to pay attention to his football players, priorities get reshuffled. Out of what appears, at the time, a necessity. Focus fluctuates.

"Knowing what I know now ... if I only knew then ... but how could I have known?" Wagner said.

Wagner opened himself up for the second guess. It's an understandable response.

A year ago, Nate threw up in the car.

"Nate, did you eat Play-Doh?" Wagner asked Nate.

"Sure, Dad," his son said. Wagner now realizes he could have asked Nate if he had eaten the Golden Gate Bridge and his then-2-year-old would have said yes.

"But I didn't think anything of it," Wagner said. "It was random. No other symptoms. Nate went back to play in the car seat."

Four months passed. One day, Nate threw up again. Twice. Wagner and his wife thought it was an inner-ear thing. No fever. No nothing.

"Remember: It happened as quickly as I'm telling you," Wagner said, "and then it was over."

About two months later, the family was heading back from visiting Wagner's relatives in Los Angeles during Christmas. Again, Nate threw up, and then it was over. Three times like that in the car on the way back to Santa Rosa.

"We were confused," Wagner said. "Made no sense. Nate always had traveled well." And, again, no other symptoms.

In mid-to-late January, Cat Wagner told her husband she noticed Nate being a little clumsy. Their Santa Rosa pediatrician examined Nate. Nothing seemed amiss, but just to doublecheck, an appointment was made for Feb. 26 to see an ear-nose-throat doctor.

On the morning of the 26th, a few hours before the appointment, Wagner and Nate were walking up their driveway. Wagner turned to talk to his son, didn't find him by his side and, looking back, saw Nate sitting in the driveway. "I fell," he said.

"Nate looked confused," he said.

Come on, pal, he said. Catch up.

"I get to the front door, turn around, there's Nate climbing up the steps on all fours," Wagner said.

"Dad, I just want to lay down," his son said.

The Wagners immediately took Nate to Sutter Medical Center's emergency room. A CT scan was performed.

"I got some real serious news for you," the ER doc told the Wagners. "Your son has a brain tumor."

Wagner asked to see the scan.

"It was like an egg sitting the middle of his brain," he said.

Nate was getting dizzy from the tumor impairing the normal flow of cerebrospinal fluid to the brain and spinal cord, its size pushing against ventricles that transport the fluid to the body. Fluid was accumulating, a condition known as hydrocephalus. Nate needed specialists. With Cat following in her car, Wagner and Nate rode in the ambulance to UC San Francisco.

To relieve the fluid accumulation and pressure, three small holes in his head were created. Dr. Gupta, examining the CT scan, saw clear definition around the tumor, no spider web-like tentacles that would indicate a malignancy. It very well could be benign but there was only one way to be sure. A biopsy was performed March 2.

"It was the size of a half a grain of rice," Wagner said of the section removed.

The news was not good.

"Dr. Gupta said it was not as he thought," Wagner said. "The surface of the tumor wasn't smooth. It was bumpy. It was not encapsulated."

"It's a cancer that's really aggressive," Gupta said. An operation was necessary. The tumor was sitting above and behind the pineal gland, and the doctors would reach it through a 5-inch incision in the back of Nate's head. It would take four hours for the surgeons to reach the tumor.

Wagner's first question popped right out.

"Is he going to live?"

There may be some developmental issues, Gupta warned. Nate's eyes might not work together. Yes, there was always the most serious risk.

"He never used the word &‘die,' " Wagner said. "He said he might not wake up. But he also said in all the years he had been doing this he had not lost a patient. So the way I looked at it, Dr. Gupta was undefeated."

Nate went into the operating room at 6:30 a.m. Tuesday, the surgery beginning two hours later after prep.

At 6:30 p.m., Gupta met with the Wagners to tell them that the surgery "went very well. I got more (tumor) out than I thought."

How much? Unknown. That's why the chemotherapy. In two weeks, Nate will have six weeks of chemo, five days a week, followed by a three- to four-week break, then another cycle of chemo and rest, and another cycle, until a year-and-a-half has been completed.

"We may be able to go back home, we may not," Wagner said. "All depends on how Nate responds."

This is going to be a long haul. Six blocks from UC San Francisco is a house for relatives of critically ill children. The Wagners work in shifts. One sleeps while the other stays at Nate's bedside. It's been that way since Feb. 26. Cat's mom, Marilyn Forgie of Novato, has given her daughter a break. Lenny's mom, JoAnn Wagner, came up from Orange County on Saturday. The Wagners never want Nate to wake up without a family member present.

"Once, since this began, I got six hours of sleep at a time," Cat Wagner said. "Once."

Lenny Wagner is taking the rest of this semester off at SRJC, maybe longer.

"I have thousands of sick-time hours," he said. "I haven't taken a day off in 10 years."

Money is currently not an issue because of SRJC's insurance coverage. Wagner said the hospital bill has reached a million dollars for the past 16 days.

"Nate's coverage extends to $5 million," Wagner said. "I hope we never have to reach that amount."

Wagner is stunned and humbled at the outpouring of support his family has received.

Relatives, friends, acquaintances, people on the periphery, people not even on the periphery have responded. It was like his son opened a vein, as it were, in people. Sure, maybe it was that Nate was 3 and no 3-year-old should have to go through this. But this was Wagner's kid and he couldn't help but notice they were responding to him as well as Nate.

"Nate has inspired people," Wagner said.

"I'm not much of a book reader," said Wagner, 40, "but (SSU's baseball coach) John Goelz gave me this book, &‘The Traveler's Gift.' It is an incredible book. I would recommend it to anyone who is in this kind of tough situation. It takes the point of looking for the upside on things."

It is something, Wagner admitted, he has done with his life since Nate was diagnosed.

"I've always been cynical about people, being out for themselves, that nobody really cares," Wagner said. "This experience has opened up my eyes. People that I might have had zero respect for have done things for us that have made me take a step back and re-evaluate. It has really made me stop and think."

Wagner paused, caught his breath and continued, explaining how he became jaded.

"Like I said, I've lost a lot of friends in my life," he said. "I've lost my dad and two stepdads. Just this last Christmas, I lost a friend who was killed in a car accident. When I grew in Fullerton, there were five of us that hung out all the time. Only two of us are left."

And then there was Torey Shinault. Needing a place to stay, Shinault hung with the Wagner family for three years. Shinault and Wagner shared the same bed all that time because family accommodations were limited.

"Torey was a great athlete, super smart kid, loads of personality," Wagner said. "He was killed in a motorcycle accident when he was 18."

When Wagner heard that his son had the tumor he kept thinking to himself, "Here we go again."

But knowing he is not alone in the ICU, knowing that a small stadium of people are out there in support, Wagner has experienced a kind of peace he previously would have thought unimaginable given the situation.

"This changes you," he said. "You can't help it."

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A trust fund has been set up in Nate's name. Anyone interested can e-mail Wagner's mother-in-law, Marilyn Forgie, at marilyn352@verizon.net for details.

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For more on North Bay sports go to Bob Padecky's blog at padecky.blogs.pressdemocrat.<QA0>

com. You can reach Staff Columnist Bob Padecky at 521-5223 or bob.padecky@<QA0>

pressdemocrat.com.