New Procedure Brings Hope And Mounting Expenses For Local Family

By Kaaren Valenta

When Bill and Terri Marsilio married 10 years ago the blending of their families was not unlike television’s Brady Bunch.

“We had seven children between us,” Terri Marsilio said. “All we were missing was Alice [the housekeeper]. Everyone could use an Alice.”

 Bill Marsilio was a heavy equipment operator – “one of those guys that everyone swears at when they tie up traffic on the highways,” he recalls. But Mr Marsilio, 57, hasn’t worked in the past two years. He has myelodysplastic syndrome, a very rare blood disorder that requires a very new type of bone marrow transplant procedure, only six of which have been performed in the United States.

In an interview in the family’s home in Sandy Hook this week, Bill and Terri recounted all that has happened to their family in the past two years and the outlook for the future.

“Two years ago in May I starting to lose my strength,” Mr Marsilio said. “I had fevers and was weak so I went to my doctor, who referred me to an oncologist. I was told I had chronic myelogenous leukemia and that with the medication available I could expect to  live about five years.”

Mr Marsilio began taking Interferon and other drugs, some of which cost as much as $7,000 a month, partially covered by his medical insurance.

“Somehow it worked and knocked the cancer cells out of me,” he said. “The doctors couldn’t understand it. But it also knocked out my white and red blood cells and platelets, so I had to have blood transfusions and platelet transfusions.”

A bone marrow biopsy showed only minute traces of myelogenous leukemia were left. But then a rare leukemia was discovered, myelodysplastic syndrome, and the only treatment is a bone marrow transplant.

Terri Marsilio, who works as an office manager for a cardiologist in Bridgeport, said it is very uncommon that someone would have two types of leukemia.  “It has only been documented in two or three people,” she said.

Results of tests done on Mr Marsilio by bone marrow specialists in New York were sent to the Fred Hutchinson Cancer Research Center in Seattle, Wash., where a new procedure – a mini bone marrow transplant – is being done.

“There are only two places in the world – in Germany and in Seattle – where this procedure is being done,” Mr Marsilio explained. “Patients over the age of 40 often survive a bone marrow transplant but die of organ failure. This procedure doesn’t use as much chemotherapy and radiation so it doesn’t strip the immune system and it lessens the chances of organ failure. There have been six of these procedures done in Seattle – three patients have lived, three have died, but the ones who died already were in the acute stage of the disorder.

“I’ve never been a sickly person. [The doctors] told me I am a good candidate for the procedure, and I figure odds of 50 percent are pretty good.”

In January, Bill and Terri went to Seattle.

“The specialists explained everything to us,” Mrs Marsilio said. “Everything sounded good. Then we got into finances.”

“Because Bill Marsilio hasn’t entered the acute stage of the disorder, the specialists at Fred Hutchinson want to do the bone marrow transplant as quickly as possible. But there are many obstacles, not the least of which is finding a donor that matches.

“So far there are 17 that have six matching blood antigens but the doctors want 10 antigen matches,” Mrs Marsilio said. “We were told we had to pay $800 to initiate the search, then $410 for each potential donor. They take five of them, and it costs another $2,000 each to do the bloodwork. Then it is another $26,000 to do the workup on the final donor selected. Plus they want a backup donor in case the first one doesn’t work out. We don’t have the time to start all over again.”

While insurance will pay 80 percent of the $200,000 bone marrow transplant procedure itself, it won’t pay anything for the donor search. Nor will it pay for the family’s expenses. Bill Marsilio and his wife have to spend four months in Seattle as much of the treatment and follow-up is done on an outpatient basis.

“I have to have someone with me 24 hours a day,” he explained. “My wife is going to have to take a leave of absence from her job so neither of us will be working. And we still have to maintain our home here.”

The way the Marsilios have added it up, they may have to come up with as much as $150,000, and at least $72,000 to start the treatment.

“I had to retire from Local 478 of the Operating Engineers,” Mr Marsilio said. “My pension just covers my medical insurance payments and I get another $1,200 a month in Social Security disability. That, and what Terri earns, is all we have. We’ve already used all of our savings.”

Two of the Marsilio children still live at home. Amanda is a junior at Newtown High School, David graduated last June and is working and attending classes at Western Connecticut State University in Danbury. They have joined with their siblings to help plan a fund-raising event, an afternoon of dining and dancing at the Fireside Inn on Sunday, May 7, from 1 to 6 pm.

“Most of my family is dead,” Mr Marsilio said. “I only have a brother left. He operates the family business, Marsilio Construction Company, in Monroe, and he isn’t a donor match. But all of our children are pulling together, getting flyers out about the dance and trying to get donations.”

The children include Garret Henchcliffe and his wife, Andrea, who live in Newtown with their daughter, Lauren, 3; Nadine Henchcliffe, who lives in Baltimore; Billy Marsilio, Jr, his wife, Cathy, and their son, Jamie, 16, who live in South Carolina; Richard Marsilio and his wife, Cara, who live in Huntington with their boys, Anthony, 13, and Andrew, 10, and Nicole Marsilio, who lives in Norwalk.

“One of the hardest parts of going to Seattle is knowing I will be separated from my children and my four grandchildren,” Mr Marsilio said. “I hate to be away from my family. If something was to happen, they’d have to get airline tickets just to see me.”

But Bill Marsilio is convinced that the treatment will work.

“I’m a firm believer in God,” he said. “By the grace of God I am still here. I know I am going to get through this. It may not be exactly the way we want it, but I know it will get us through.”

“I know there are many people out there who see someone in need and will help out,” he said. “I’ve been that way all of my life. You have to give from your heart, not just from your pocket book.”

Tickets to the May 7 fund-raiser are a minimum donation of $60 per person. Tax deductible contributions also may be made to the SVMC Foundation, Swim Across the Sound, 2800 Main Street, Bridgeport, CT 06606 (reference Bill Marsilio Fund in the memo line). For tickets or information call 270-1216 in Newtown, 925-9331 in Shelton, or 857-0668 in Norwalk.