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Commuter Rail engineer's illness inspires agency's bone marrow donor drive

Posted by Jeremy C. Fox  July 9, 2013 05:06 PM

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Jeremy C. Fox for Boston.com

Cathy and Bob Evans shared a laugh at South Station on Tuesday. Bob Evans, 60, was diagnosed in April with myelodysplastic syndrome, a precursor to leukemia.

Bob Evans was always a healthy guy.

He has never had the flu, and until a few months ago Evans, 60, was biking 12 miles each way from his home in South Boston to his job as a locomotive engineer for Massachusetts Bay Commuter Railroad.

It was a shock when doctors found just months ago that Evans had cancer, but his diagnosis hasn’t changed his positive attitude or desire to help others.

On Tuesday, at Evans’ suggestion, commuter rail workers held a donor drive at South Station that added dozens of potential bone marrow donors to the rolls of Be the Match, a national donor registry.

Marcia Weaver, communications manager for Massachusetts Bay Commuter Railroad, said at lunchtime the drive had seen a steady stream of volunteers from the Massachusetts Department of Transportation, MBTA, Commuter Rail, Amtrak, and others who had heard about the drive on the radio or through the Boston Metro.

Leigh Sullivan, a recruiter for Dana-Farber, said any healthy person between the ages of 18 and 44 can sign up to join the registry.

“It’s as simple as filling out a consent form and doing a cheek swab,” Sullivan said.

Evans’ health took a precipitous decline last winter. He first noticed shortness of breath, but as a lifelong asthmatic he initially brushed it aside. He was also feeling weary.

“I was suffering from fatigue because my blood wasn’t getting the oxygen it needed,” he said.

“I didn’t see anything,” said his wife, Cathy Evans, an assistant conductor on the commuter rail who met Evans on the job 11 years ago. “He always took a nap a day anyway.”

Then came a fever of 104 degrees and a rash along the knuckles of his hands then spread up his arms in blotches the size of quarters, he said.

Evans spent nine days in March in Brigham and Women’s Hospital with pneumonia. After his release, his blood was tested once a week for three weeks. Finally in late April, he learned he had myelodysplastic syndrome, a precursor to leukemia.

“It’s kind of like a champagne bottle with the cork half out,” he said. “They try to control it in the early stages, because once that cork is all the way out, it’s a lot worse.”

Though he is upbeat now, the diagnosis was hard to accept at first.

“It was like getting hit in the back of the head by a wet snowball that slid down your back,” he said. “I did not see this coming.”

“I think I cried for two months,” Cathy Evans said. “I still do.”

Evans is now undergoing his third round of chemotherapy, which has so far been successful, he said.

His doctors have told him he could be OK for three months, six months, a year, or two years. One doctor said the longest he has seen a patient’s blood levels remain stable after chemotherapy is five years.

His best hope for recovery is to find a bone marrow match and have a transplant. If a perfect match can’t be found, there is a possibility of using umbilical cord stem cells, or bone marrow from his brother, who matches Evans on half the markers.

Cathy Evans said she has yet to really consider the possibility of life without her husband.

“I just can’t think that far,” she said, as her eyes began to tear. “I can’t. ... I have my family, and I have my grandchildren, but I want him.”

Evans said he tells his wife that if he doesn’t survive, she has to continue to enjoy life just as she would if they were together. For now, he said he is getting excellent care.

“I have all the confidence in Dana-Farber,” he said. “I have never seen such a professional and well-organized operation in my life.”

Evans said he was surprised to learn how unpredictable leukemia can be. The disease has a tendency to strike young people in their teens or 20s, he said, but can also strike late in life, usually after age 70. But he has just turned 60. The disease sometimes runs in families, but sometimes strikes at random.

“I do not have a history of cancer in my family whatsoever,” he said. “There is no rhyme or reason to this disease. … It could strike anyone at any time.”

Satyen Patel, deputy director for quality for the MBTA, was one of more than 100 people who signed up to be potential donors on Tuesday. Patel said he learned about the drive through an email notification sent from the secretary of transportation’s office.

“This was a great opportunity to donate. It’s something I’ve always wanted to do anyway,” he said. “It’s always good to help someone out if you can. If you’re able to, I don’t see why you wouldn’t.”

To register online as a potential bone marrow donor through Be the Match, visit bethematch.org.

Jeremy C. Fox can be reached at jeremy.fox@globe.com.
Follow him on Twitter: @jeremycfox.
Follow Downtown on Twitter: @YTDowntown.

Satyen Patel.jpg

Jeremy C. Fox for Boston.com

Satyen Patel, deputy director for quality for the MBTA, swabbed his cheek at the donor drive on Tuesday.

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