Surviving is just the first step

By Beverly Creamer
Advertiser Staff Writer

Matthew has a newfound interest in his father's hobby of radio-controlled miniature cars. Richard Ambo • The Honolulu Advertiser

Then 12 and a seventh-grader at Washington Intermediate, Matthew was the focus of many prayers and much community support last fall as he lay in a coma, suffering from a rare brain disease. After a story in The Advertiser in October, hundreds of people sent the family contributions and messages of hope.

But as often happens in these cases, after the prayers have been answered and the patient is no longer in danger, there's another, less-often-told, story of slow recovery and of lives changed forever.

Doctors have saved Matthew's life, rehabilitation therapists have helped him learn to walk and talk again. Now his family is discovering anew who this changed child is, how he thinks and reacts, and how to bring him slowly back to full participation in life.

His mother jokingly calls him "the new and improved Matthew."

But it's in a light-hearted moment that she says that. After surviving a condition that happens only to a few people a year in Hawai'i, Matthew is a different child, she says: more curious, more loving, more assertive, but also more daring and stubborn.

"A couple of times, he scaled the fence around their Kapolei home. He heard noises — someone was weed-whacking the yard — and he was curious," said Ivy Root, who sat with her son for endless weeks in the hospital last fall as he lay in a coma, immobilized by drugs to control constant epileptic seizures.

"Even Dr. (Byron) Aoki (one of Matthew's intensive care unit doctors at Kapi'olani Medical Center) said he needed 24-hour supervision."

That Matthew survived meningoencephalitis, caused by a still unknown virus, was a triumph of medicine. And also community support. "We are so blessed, I just want to share it with people and let them know to just be happy," said his mother, who said the experienced not only changed Matthew, it changed her. "I find I don't get too angry at those little things now. I just live day to day and enjoy my family and my life. If something is bothering someone, I pick it up now and I'll just ask them if they need to talk to someone, I'm here," she said.

So much comfort came to her family, it has given her a new belief in a personal God, in the goodness of the universe and the goodness of people. "A lot of people came and talked to us about their stories about children who had encephalitis, and they gave us a lot of comfort because their child survived it and they said Matthew will too."

Friends sold chili tickets, baked cookies, made crafts, organized a golf tournament to raise money to help the family pay medical bills. John Root's fellow drivers at Paradise Beverages chipped in their vacation days so he could stay at the hospital with his son. The Honolulu Police Federal Credit Union, where Ivy works, gave her unlimited leave and set up a fund for public contributions that now reaches into the thousands of dollars. Several Waikiki hotels provided free rooms when the Roots were so tired they couldn't drive back to their townhouse in Kapolei.

Through it all, the Roots never gave up hope. It's part of their strong faith, part of their conviction that their love and will would overcome even this.

And it has.

"He's a miracle child," declares Roy Kaaa, who manages the police credit union and is Ivy's boss. "He's so outgoing now that he doesn't look like the same kid. Before he was so reserved; he used to come in and walk into the back and do his homework and wait for his mom. He might not even say hello. Now he comes into my office and says 'How's your golf?' "

Almost daily, pastor Ronnie Tongg of the New Life Bible Church, a small Pentecostal denomination that meets in a private home in 'Aiea, would visit the hospital, lay his hands on Matthew and pray. "It's been amazing," said Tongg, who is also the credit union attorney. "He was on the brink of not making it. He was on total life support, and they didn't know what was wrong with him."

While doctors treated the boy for viruses that can attack the brain, there was no certainty, even then, as to what had caused the meningoencephalitis and how his brain would be affected. In some cases, children have recovered completely over time. Others work every day to regain functions they once took for granted.

"Often it takes a few years to come back," said Straub Clinic & Hospital infectious disease consultant Dr. Francis Pien. "I had a patient who was comatose for a year and woke up and is back to normal and now does everything. So you can't always predict. The brain's a strange thing. Usually we say after two or three years the brain has made as much recovery as possible."

But Pien notes that full recovery can also be affected by a child's age, and what part of the brain is involved.

Although Matthew's memory is returning, he doesn't yet remember the hospital. And when his parents talk about it he becomes agitated, so they quickly switch topics.

When Matthew was released from Kapi'olani in January and went to the Rehabilitation Hospital for a month of therapy, he had to relearn the things of toddlerhood.

But it's a far more complex and amorphous process to recover the minutiae of life, including the hundreds of thousands of bits of information layered into the complexity of a human brain.

"He's not ready to go back into a full classroom," said his mother. "He needs a smaller classroom with fewer distractions." The Department of Education will be providing a tutor over the summer to help him catch up.

Nor is he ready to be left alone. Have long visits with friends. Go outside by himself. Watch TV without firm time-limit and content controls.

"He needs a lot of structure," said his mother. "His long-term memory is coming back. And his short-term. His sentences are getting longer. He's making improvements every day."

But until then, the Roots double-bolt the door so Matthew can't wander out, following his curiosity. And they make sure they accompany him on any outing.

What is returning more slowly is the boy's voluntary speech. While he can speak, and will respond to questions, he prefers to substitute action for words. In a moment he'll bound outside to tussle with one of the family hounds, then insist on wearing a visiting photographer's digital cameras, and watch intently as the photographer demonstrates how it works.

Mechanically gifted before the illness, the boy is even more so now. His father's collection of radio-controlled model cars holds new fascination for him, something they never did before, and it's a hobby father and son now both enjoy.

"We work on it together," said John Root.

Every tiny improvement becomes a victory. The day when he answered the phone, unbidden, and said "Hello" to his grandmother for the first time in a year. The day he started calling his parents "mom" and "dad" again, instead of "John" and "Ivy," as he had heard them referred to in the hospital. The day he consented to take his seizure medicine without a struggle.

The Roots are working through this all on their own. After his intensive rehabilitation therapy, there has been little guidance in how to rebuild the patterns of his brain. And so Ivy Root did what she did when her children were much younger: She created a reward system by putting up charts with chores and duties, and stuck gold stars on the calendar for each one completed.

The chart has become Matthew's guide, and when his parents leave for work each day and his grandmother and a home-care nurse take over his daily routine, the ritual of the chart begins. It reminds him when to have lunch, when to read a story, when to take a rest. And when to watch the clock for his mother's arrival home from work.

"This virus goes through stages," said his mother. "At one point, he wasn't ready to learn. Now he is."

At first, like a young child, he would become agitated when she moved toward the door to leave for work. But as his brain reorganizes and retrains itself, the departure routine has become smoother and less chaotic.

What still needs to come are the more complex jobs, such as learning to sense danger, organize time, behave in socially appropriate ways. Rehab Hospital therapists laid the groundwork for overcoming the temper tantrums that he suffered in the first weeks of the recovery process and these are now passing.

Just a couple of weeks ago, Matthew returned to visit the people who are almost like his second family: the folks at the credit union where Ivy works. Shaking hands and saying hello to one and all, he astounded people.

"He comes in and shakes hands with Roy, our manager, and sits down in the chair in his office," said his mother. "He's just a lot more curious and aggressive."

"He remembers us," said Rene Matsuura, a close friend who spent hours at the hospital with the Roots. "He looked at me. He remembers."

What they also notice is the new affection he shows. His mother is treated to hugs and kisses, "please" and "thank you" and an unusually pleasant attitude.

Infectious disease specialist Pien said personality changes are possible as the result of encephalitis or brain inflammation. "Maybe in children it could cause more (personality change) than in adults because they're still in formative stages," said Pien. "But it could also be the psychological effect of the illness."

Pien said that personality is generally focused in the frontal lobes of the brain, so when a virus or infectious agent touches that area, personality change is more likely.

But Matthew isn't the only member of the family who has gone through a sea change. Kaaa sees a new depth of compassion in Ivy Root's approach to people.

"She's my loan specialist, my collector," explains Kaaa. "Before, she used to be a stickler for people paying their bills. Now she's more open to listening and helping credit union members, rather than saying 'Oh, you must pay at this time,' she's more open to them."

Elsie Fong, Matthew's maternal grandmother, said the family will never be the same, though that's not all negative by any means. "The love of the people really made a difference in all our lives," she said with emotion. "People are beautiful. They were there for Matthew and our family. And every day there is an improvement."

Her life, too, is so different. Instead of meeting with her Pali Seniors club each day, she packs up a few clothes for the week and waits for her daughter to pick her up Sunday afternoon. "We do our marketing for the week, and then I come here," said Fong. Then, as her daughter and son-in-law head to work each day, she stays with Matthew, helping the home health aides with his ongoing rehabilitation.

"When they need me, I'll be here for my grandson," said Fong. "This is what little I can do."

The pediatric neurologist who assessed Matthew has told the family the boy has recovered as much as 60 percent of his function.

"They tell us it will be a long process," said his father, "but he will come back."

"We just take everything day by day," added his mother. "And we can see the light because he's getting better.

"It's time that heals," she said softly. "Just time."