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Dylan's hope

By Alex Paul | Posted: Sunday, May 16, 2010 12:54 am

Last May, 5-year-old New York Yankees fan Dylan Cain had a vocabulary of about 30 words.

He loved to talk about Tigger or Eeyore from Winnie-the-Pooh lore and he knew his name was Dylan, but beyond that, conversations with his parents, Mark and Jinger Cain, were pretty much one-sided.

Today, Dylan can tell you that he's playing with a ball - which he can hurl with great speed and accuracy - and that it is yellow, red or blue.

He can tell his parents to turn off the light in his bedroom and even reaches for the switch on his own.

And he prefers to be called "Shark Bait," the nickname given to the animated fish Nemo in the popular children's movie.

In May 2009, Dylan received a stem cell transplant at the Duke University Medical Center in North Carolina. His parents say the last 12 months have been a miracle for the Corvallis youngster who was born oxygen-deprived and later diagnosed with cerebral palsey.

"They told us at Duke that it might be months before we saw any sign of improvement," Jinger Cain said. "Just six weeks after we returned home, he started to answer questions. His right leg straightened out a bit, and his vocabulary has expanded amazingly."

Since September the Corvallis family has lived in Bend during the week so Dylan can complete hyperbaric chamber treatments at Bend Memorial Clinic. He recently completed his 120th "dive."

After having tubes implanted in his ears to relieve pressure, Dylan and his parents spent about 90 minutes per day in a special tank - like a deep sea diving bell - that increases air pressure to about 2½ times normal. And, instead of breathing regular air, which contains about 20 percent oxygen, he breathed 100 percent oxygen.

Jinger said the combination is believed to push blood and oxygen deep into the body's tissue and cells.

"If the cells aren't dead," Jinger said, "the increased pressure pushes oxygen into them so the blood can start flowing there."

Before Dylan started receiving the hyperbaric chamber treatments, he was tested at the Children's Development and Rehab Center in Eugene.

"The speech therapist found that Dylan had progressed 5-plus months in the 3½-month period of time, which means he is progressing faster than his peers," Jinger said. "What is even more impressive is that before the stem cells and hyperbaric treatments, he was progressing at a rate of one month for every four months that went by, or three to four months of development in a year, so he was consistently falling behind his peers. Now he is progressing five times faster than before, and that has blown away his teacher and therapists at the school he attends, as well as his doctors."

Jinger said that Dylan's teacher in Bend told her she has never seen a child make such gains in her 20 years of teaching.

The only child undergoing the hyperbaric treatments, Dylan was a hit with doctors and technicians.

"They loved having Dylan there," Jinger said. "They always had a big smile for him and he called them all Doctor, which of course the technicians loved. Using adaptive equipment, one of the clinic's technicians even took Dylan skiing on Easter, which he loved."

The bill for the hyperbaric treatments came to $39,000. Treatments are not covered by insurance, but the Cains hope that will change.

"Dylan has made gains in other areas as well, but not as profound as in speech," his mother said. "His vision seems to be improving. He can see all of his toys and tell you which one you are holding."

Mark Cain said Dylan is getting stronger through his midsection, which helps when he takes assisted steps.

Both parents are focusing on helping Dylan develop his balance, which comes from "many hours of spinning, swinging, rolling, hanging upside down in a harness and other activities."

The Cains have kept the Duke University medical staff abreast of Dylan's improvement and will take him back to North Carolina this summer for a follow-up. Although he was infused with about 500 million to 600 million of his own stem cells (harvested from his umbilical cord at birth and stored in a special bank in the Midwest), he still has several million cells left for future infusions.

"We don't know whether to use them now or to wait because scientists might make breakthroughs in coming years," Jinger said.

Dylan will soon begin taking hyperbaric treatments in a soft-sided chamber that produces about 1.3 times atmospheric pressure. The soft-sided chambers cost about $17,000 and can be used at home. The Cains hope someday they can get one for Dylan.

The Cains accept the fact that their son has a long way to go - he still can't walk unassisted - but they find relief in believing the "pendulum has swung" in terms of the progress he's making

4-year-old prepares for life-changing medical trip

By Alex Paul
Gazette-Times reporter

Diagnosed with cerebral palsy, boy will undergo stem cell infusion

With only two weeks to go before Corvallis residents Jinger and Mark Cain take their 4-year-old son, Dylan, to Durham, N.C., for what they hope will be a life-changing infusion of stem cells, the couple are “getting really excited.”

“We’re going to leave May 23, the infusion will take one or two hours on May 26, and we meet with a neurologist on May 28,” Mark Cain said. “We will fly home Friday” (May 29).

Dylan was oxygen-deprived at birth and later was diagnosed with cerebral palsy. Although he has made amazing progress due to intensive daily therapy, he remains legally blind, cannot walk on his own and has a vocabulary of fewer than a dozen words.

At birth, the Cains banked Dylan’s umbilical blood, from which stem cells will be extracted by the Duke University School of Medicine staff. The stem cells will be infused back into Dylan’s own system. Thousands of similar procedures have taken place around the world, especially in China, with many patients experiencing marked medical improvements.

The Cains were recently told that Dylan had been accepted into the Duke program, but it’s going to cost about $19,000 for the procedure, follow-up and travel for the family.

To assist the family, the Oregon State University women’s volleyball team will host a “Wine and Dine” benefit dinner June 1 at the Aqua Seafood Restaurant & Bar, on First and Monroe.

Hors d’ oeuvres will be served at 6:30 p.m. and dinner is at 7 p.m.

The $100 ticket — which is tax deductible — includes a meal with a preset menu and service donated by Aqua, fine wine, and membership to The Spikers, the OSU volleyball team’s booster club.

Checks can be made out to Sparrow for Dylan. To learn more about Dylan’s life story, visit www.help4dylan.com.

Banking on stem cells

By Alex Paul
Corvallis Gazette-Times

Wearing a New York Yankees T-shirt, 4-year-old Dylan Cain hurls a rubber ball across the living room of his parents’ Corvallis home with amazing punch for a 52-pound lefty.

If stem cell infusion at the Duke University School of Medicine in coming weeks is successful, it’s possible that Dylan, who has cerebral palsy, will someday be able to show off his pitching prowess on a real baseball diamond.

That scenario is well beyond the dreams of his parents, Mark and Jinger Cain. They will be ecstatic if the stem cell project — which will use stem cells collected from Dylan’s umbilical cord at birth — provides him with better sight and — miracle of miracles — the ability to walk.

Dylan was oxygen-deprived at birth and later was diagnosed with cerebral palsy. Although he has some peripheral vision, he is legally blind, cannot walk on his own and has a vocabulary of fewer than a dozen words.

But what Dylan lacks in physical ability, he makes up for with a beaming smile and deep belly laugh that would warm the coldest heart. He also has the support of two loving parents who have been devoted to improving their son’s life since his birth on Dec. 16, 2004.

The living room of their duplex is filled with tables where they and volunteers work with Dylan every day, training his brain to remember tasks and stimulating learning. A recent cause to celebrate was the day Dylan used a towel bar his father attached to the side of a massage table to pull himself to his feet and grab some toys. It was, his mother said, a major breakthrough in a world filled with progress that is measured in tiny increments.

A decision made at Dylan’s birth may be a major turning point for the family, Jinger Cain said.

“We decided to bank Dylan’s umbilical cord blood,” she said. “The stem cells from that blood now have the potential to change Dylan’s life or, potentially, even for one of us down the road.”

Jinger was working at Hewlett-Packard when she and her husband decided to spend the $2,000. She now sells real estate, and Mark works part-time at Linn-Benton Community College. Medical costs have hit their financial resources hard, but they continue to seek the best for their son, often with the help of community fundraising projects.

“We had heard about banking cord blood, and we saw it as an insurance policy,” Mark said. “We were willing to take the chance.”

Dylan’s blood was stored with a company called ViaCord, based in Cambridge, Mass. In January, the family received a letter from ViaCord informing them that Duke University was willing to consider Dylan as part of its pediatric study based on stem cells.

“We almost put it in the shredder. It came in a plain envelope,” Jinger said. “I read it about 1 a.m. and cried. We had been looking into taking Dylan to China, where they have had tremendous success with stem cell cases.”

Jinger said because the stem cells come from Dylan’s own umbilical cord blood, they will be an exact match. There have been numerous stories worldwide of improvements in medical conditions even from partially matched cell infusions.

Jinger emphasized that the stem cells that will be used to treat Dylan are not embryonic; they are his own. No embryos were destroyed to collect the stem cells. In Germany, there have been successful tests using stem cells taken from bone marrow, Jinger said.

“The stem cells know where to go to attach themselves to damaged cells,” Jinger said. “Some people report seeing improvement in just days or a few weeks. There are stories about children who could not see when they went for treatment but could see lights when they flew home.”

Beike Biotechnology in China claims it has completed more than 13,000 stem cell transplants since 2001, with nearly 80 percent of its patients showing signs of improvement — some of them making remarkable progress.

The Cains haven’t been given an official timeline for their trip to North Carolina, but they expect it will be in late April or early May. They will travel on a weekend. Dylan will receive an evaluation on Monday and a cell infusion — which takes about one hour — on Tuesday. He will meet with a neurologist on Wednesday, and the family will return to Oregon.

At home, they will continue Dylan’s intense physical therapy and a wholesome, all-natural nutrition program in hopes of boosting the stem cell healing process.

The cost of their travel, the stem cell infusion and follow-up meetings is estimated to be about $19,000, which they don’t have, Jinger said. Over the past four years, they have spent every dime they had trying to help their son.

The Cains are realistic about their expectations and hopes for Dylan.

“We will take anything, no matter how little,” Jinger said. “Our hope is that he will get better vision, better body and muscle control. We would take any or all three. I originally thought his toughest challenge was going to be his blindness, but now I think it may be his inability to walk.”

Jinger has started a blog where she can share information with other parents of children with special medical needs.

“This isn’t just our journey,” Jinger said. “Other parents can gain from our experiences.”

To learn more about Dylan, or to donate, see www.help4dylan.com.

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