Tragic Bond Links Mothers

For Kathy Larson’s son Bryan, the first sign came as he ate at Taco Bell. Bryan turned his head to the right and froze. Seconds later he came to, unaware of what had happened--his first seizure.

Gigi McMillan’s son Ben was watching TV one night, covering one eye with a hand. He had said to his sister, Julie: “I see two of you.”

Tara Antongiorgi’s son Jose woke up one morning with a headache. A week later, he started radiation for a brain tumor.

While fathers and siblings offered sympathy and support to these boys, it was the mothers who led each family’s fight against the brain tumors--cataloging symptoms and medications, EEGs and MRIs, operations and chemotherapies.

The mothers learned to sleep lightly, to wake early. They recited polysyllabic names of tumors as easily as nursery rhymes. During the worst of it, they didn’t get haircuts or manicures. They rarely cooked. Or ate. They forgot what month it was.

And they played games to distract their children from cancer’s probability. McMillan named the tubes sticking out of her son’s chest: Harry and Ralph. Ben liked that.

Like their sons’ cartoon superheroes, the mothers developed super powers.

McMillan could sprint down a hospital hallway at 5 a.m., rushing her 5-year-old to his radiation.

Larson’s memory became razor sharp--bring the stuffed animals, a favorite quilt, snacks.

Antongiorgi developed a ready stock of honest answers to Jose’s questions about mortality.

McMillan and Larson met at a picnic held by UCLA’s Mattel Children’s Hospital for youngsters with brain tumors. Both belong to We Can, a support group for parents of such children that McMillan and another mother founded five years ago. Antongiorgi is a member too.

The three could be mistaken for cousins--all in their late 30s or early 40s, brown-haired and light-skinned. They are among 200 parents in We Can from Bakersfield to Orange County.

Fate had placed their sons into what the mothers call the “pediatric brain tumor lottery.” Fate also called their numbers.

Two lived. One died.

The mothers have one shield: each other.

Bryan Larson’s blond hair was shaved to his scalp, blue veins visible under his white skin.

It was 5 a.m. and the 9-year-old had just arrived at UCLA Medical Center with his parents, Kathy and Bill, from their home in Corona. Bryan dragged a tiger-print quilt and another decorated with trains, along with a stuffed rat toy he called Tip Toe.

The fluorescent hospital waiting room light made everything white appear a light green.

Bryan had been scheduled for surgery once before, but when he arrived that morning, a seizure struck. He kicked nurses, bit doctors, chewed through wires attached to his head.

On this day in May, though, he was calm, listening to rap music on his yellow headset. His mother carried a backpack with the words “No Fear” stitched into it.

“I’m bored. I’m bored,” Bryan said later, clad in a white-and-blue hospital gown, his camouflage shorts underneath. “How come I’m the only one who has surgery?”

Doctors and nurses explained that he was going to have a right temporal lobectomy to remove his rare dysembryoplastic neuroepithelial tumor. His parents had given Bryan a disposable camera to divert him. He snapped pictures.

The operating room had white walls with lines of black, gray and mint green tiles. A plastic bag held Tip Toe and Bryan’s tiger sheets.

“If we can get the bulk of the lesion, there’s a 75% to 80% chance that the seizures will stop,” said neurosurgeon Gary Mathern as he donned a sterile cap. “And that’s pretty good.”

On the wall of the operating room, Bryan’s brain was illuminated in the X-rays. There was what looked like a white golf ball--the tumor. As Kathy and Bill waited in the lobby, Mathern took a small yellow drill and held it over Bryan’s head. “I’m opening the door now,” the surgeon said.

Eight hours later, the Larsons watched Bryan sleep, mouth open and head wrapped in white gauze. Three clear tubes disappeared under the white sheets.

The Larsons leaned in and smiled. Their son was snoring.

A day later, relief turned to fear.

“They took a piece of him, but we don’t know what piece,” said Bill Larson, wiping away tears. While the tumor had triggered violent seizures, would its absence make him a passive, unfamiliar child? “Yesterday we felt the big thing is over. Now it’s the unknown,” the father said.

Gigi McMillan walked into the ICU. The nurses remembered her. She said the hospital smelled the same as it did six years ago, when Ben had his surgery.

McMillan came armed with a book on how to help parents through grief, a spiral notebook and another parent’s screenplay involving a child with a brain tumor.

McMillan and Bill Larson watched as nurses wheeled Bryan out of ICU and into a regular room. Larson began to sob.

“Why are you sad right now? Everything adding up?” she asked.

Bill nodded and cleared his throat. “That’s not how it’s supposed to be. The white picket fence and all of that; where is it?”

McMillan had asked similar questions herself. Their children, she agreed, were “never supposed to see the floors of this hospital.”

“I keep looking for an answer,” Larson said.

McMillan then steered the Larsons to the tasks at hand. “You’re out of the ICU, that’s one. You have to go through the process of getting him settled into this next phase. Most people don’t learn until gray-haired the realities of life.”

But McMillan also had a more immediate concern. She was determined to make the Larsons take a break. “This would be a good time to go to lunch,” she said.

Kathy Larson turned to her husband. “Want to see if the yogurt machine is working? Let’s go brush our teeth. They have our pager.”

After the Larsons left, Bryan woke up. McMillan rushed to his side and whispered, “Remember Gigi?”

“Yeah.”

He was thirsty. McMillan dashed off to bring him water.

The McMillans had to put training wheels back on Ben’s bike after his surgery.

He has to wear two hearing aids. He has left-side weakness. He has an IQ of 61.

Still, Ben is free of his medulloblastoma tumor. After six years of remission, there is no sign of cancer.

Ben’s radiation treatments stalled the growth of cancer cells, but also slowed the growth of brain cells. Although he’s 11, he is more like a 6 year old.

“I don’t know what’s ahead for Ben,” said Gigi McMillan. “I’m worried about how my kid is going to fit into the existing structure of a society that is not prepared to handle him.” She plans to start a trust fund for his care.

McMillan fears all day, every day, that the cancer might reappear. And statistics are stacked against Ben.

According to a recent National Cancer Institute study of 1,845 children with brain tumors who survived for at least five years, seizures, convulsions or blackouts occurred in 28% of them. More than half suffered motor disabilities, such as balance problems, weakness of the arms or legs, or tremors. The report said the incidence of secondary brain tumors in long-term survivors is rising, and second malignancies are almost always fatal.

Gigi didn’t celebrate when they beat the tumor and took Ben home to Manhattan Beach. She mourned the loss of the old Ben.

“We didn’t say goodbye before he went in,” McMillan said, recalling the moment Ben was pushed through the operating room doors to have his tumor removed. “And that was the last time we saw Ben.”

The new Ben emerged eight hours later.

“There was this little creature, IV in each arm, IV in his neck, wires and machines, a light on his finger,” McMillan said. “His head was shaved, and he had a straw coming out of the top of his head. He was making noises we never heard before. His body was spazzing out. He was covered in iodine stains and weird smells.”

At that moment, it hit her that things were never going to be the same.

For a while, she attached her hopes to an Oregon family whose son, Dieter, had survived and thrived through treatment. He was Ben’s age and had the same kind of tumor. For some time, Dieter was the success story she needed.

Then Dieter died.

Although McMillan knows better, her first reaction is to mourn the loss of her healthy son.

“What is there to celebrate?” she asked. Then, minutes later, “I can’t believe I said that, ‘What’s to celebrate?’ ”

These days she often talks to Tara Antongiorgi. She is a comfort to McMillan, as McMillan is to Antongiorgi.

Antongiorgi said: “We mourn the loss of a dream.”

Jose Antongiorgi, 9, woke one morning last summer and couldn’t pronounce his Ks.

It was a sign that his brain stem glioma tumor was back.

After the initial radiation, Jose had gone on a slew of drugs--poly-ICLC, thalidomide, Accutane, Celebrex, Temodar, Irinotecan and Cisplatin--for his inoperable tumor.

Throughout, doctors gave him steroids to control the swelling from the radiation. Steroids made him hungry, but his gag reflex was failing and he couldn’t eat.

The treatment wasn’t working. The drugs were added one by one, but still no change. And he was sad. “Brain tumors can play with your emotions. He was tired and melancholy,” Tara Antongiorgi said.

One fall day, Jose woke up choking. His breathing was heavy and noisy. He couldn’t talk. His parents rushed him to the hospital. He was treated and sent home.

Antongiorgi would call McMillan throughout that period a couple of times a week, grief their common bond. They’d discuss how the Antongiorgis should talk to Jose about what was happening to him.

Antongiorgi never addressed death directly. Instead Jose Sr. came up with a fairy tale. McMillan had had that same idea.

It was a story about a king who fought hard for his people. The king was wounded in battle, losing an arm. So he went home and prayed. He told God that if it was time to die, he would understand. At one point, Jose didn’t want to hear it anymore.

In time the boy who once played soccer and basketball could no longer lift his hands to play board games with his 4-year-old sister Anna at their home in Redondo Beach.

In January, during the last week of his life, he couldn’t eat or speak. He barely moved.

The night before he died, Jose wanted to play dominoes. He won one game, his mother the other. Then he asked for the fairy tale of the wounded king. He knew it was about him.

“The night he died . . . we told him he could go, that we’d be OK,” Antongiorgi said. “It was awful to watch your child take his last breath. His breathing got slower and slower. . . .

“I was waiting . . . and he didn’t. . . .” Her voice trailed off.

Jose died in his bed. His last class portrait hangs on the wall within a red frame, Jose standing tall in the last row.

Antongiorgi is much more accepting of Jose’s death than she was of his cancer and admits: “I look at grief with apathy, because I’m never going to beat grief.”

The three mothers gathered recently at McMillan’s home to talk about their children.

Bryan looks like a normal kid, Kathy Larson said, and rides his bike around the block and plays handball. He might join the Boy Scouts.

“It’s nice to see them do normal things,” said Antongiorgi.

“It’s bittersweet,” McMillan said, referring to Bryan. “You look at it and you know it’s not what it looks like. The picture is perfect, but he’s missing one-fourth of his brain.”

The three women attempt normalcy by going shopping and making new friends, but they constantly wonder how to introduce past struggles into new relationships.

Antongiorgi wrestles with one question: “How many kids do you have?”

“At first I just thought to be honest: ‘I lost my child to a brain tumor.’ Then they almost pass out, and you feel guilty,” Antongiorgi said.

“All my new friends,” added Larson, “have kids with brain tumors.”

The mothers are so used to such talk that it’s easy to forget how the outside world reacts to such a disturbing thought. When Larson told one neighbor on the phone that Bryan’s tumor was growing, the woman came unglued. Larson had to send her husband over to comfort the neighbor, who could barely speak through her tears.

The mothers’ talk turned to the future.

“It’s hard to make plans because there’s no road map,” McMillan said. Her expectations for her children are open to possibility and chance, she said, cradling her newborn daughter, Sharon Elisabeth.

“Sharon is my final step into being normal,” she said. Larson and Antongiorgi played with Sharon and smiled and said things like, “Oh, my Lord,” and, “Isn’t that precious?” But the vast array of possibilities is ever present.

“You can’t help but worry. . . . I already did this,” Larson said of her fight with Bryan’s tumor. “I don’t want to do it again.”

Other mothers of young sons might discuss day care and school. Larson and McMillan asked Antongiorgi about Jose.

“We are not going to spread his ashes,” she said. “We wouldn’t do that.”

Larson said she was trying to get Bryan up to school grade level.

McMillan then spoke of the daughter she held in her arms. “I’m lucky I get to do it again. But there is all that heartache. I keep saying, ‘We already won the brain tumor lottery--That’s it, right?’ ”

As the three mothers talked, familiarity in the form of laughter interrupted their sad stories, because familiar, though far from normal, is still a happy place.