Bone Marrow Registry Booth Returning to the Fair

When the initial call came in last year that Dave DeCecco was a match for someone in need of a bone marrow transplant — a baby girl less than a year old — it caught him off guard.

He had almost completely forgotten about the day years earlier at the Washington Town and Country Fair when he swabbed the inside of his cheek to join the National Donor Registry list. It had just taken a few minutes of his time, so he didn’t give it much thought.

But finding out he was a match for someone — a baby, no less — left him excited and eager to help.

“An opportunity to save someone’s life comes very rarely,” DeCecco, a 2000 graduate of Washington High School who now lives in Kansas City, told The Missourian.

Fair-goers will have that same opportunity this year when the Delete Blood Cancer booth returns to the Washington Town and Country Fair to register people to the national bone marrow donor list. People will not have to pay to register.

The booth will be set up Thursday, Friday and Saturday, Aug. 8-10, from 1-9 p.m. each day. The location on the Fairgrounds is not set yet, but people should look for a large red tent, said Joyce Jones, donor recruitment coordinator with Delete Blood Cancer.

“Delete Blood Cancer started with one family’s search for a bone marrow donor and is today part of the world’s largest bone marrow donor center,” said Jones. “We have registered more than 3-5 million potential donors and facilitated over 35,000 life-saving transplants worldwide.”

All of the donors who register with Delete Blood Cancer get recorded onto the National Registry, said Jones. Therefore, if a doctor is looking for a match for a patient, they only have to go to one data base to look.

How to Help

The Zick family of Washington are responsible for bringing the first bone marrow donor registry drive sponsored by Delete Blood Cancer to the Washington Town and Country Fair in 2010.

Maggie (Jones) Zick was leading the cause. Her husband, Kyle Zick, had a cousin, Todd Zick, who had a bone marrow transplant and they wanted to do the drive in his honor, said Joyce Jones, Maggie’s mother.

“Maggie got the Zick family and friends to rally to help work the booth the entire Fair,” she noted.

That year, the Fair signed up sponsors for the booth with funds being split between Delete Blood Cancer to offset the cost of putting people on the registry ($65 per person) and the Fair.

The drive was so successful in 2010, that it was held again at the 2011 Fair, however, this time only on select days and times.

“We want to support it because it’s something we think is important and it’s a way to reach a lot of people in a short amount of time,” said Jennifer Giesike, Fair coordinator.

“It’s another way to help the community.”

People stopping by the registry booth this year can expect to be finished with the process in a matter of minutes. DeCecco said it only took him about five minutes.

“I wrote my contact information on the paper, swabbed both my cheeks and as easy as that I was registered on the National Bone Marrow Registry,” he said.

There was no charge to him to join the registry. The cost of processing his cheek cells was underwritten by Delete Blood Cancer.

It will be the same this year, said Jones.

Anyone in general good health between the ages of 18-55 can register.

Why Register?

Every four minutes someone is diagnosed with a blood cancer, and every 10 minutes someone passes away from a blood cancer.

Blood cancer kills more children in the United States than any other disease, said Jones. Many can be saved with a bone marrow transplant.

Every year 10,000 people in the United States need bone marrow transplants, but only half will get one.

The reason everyone who can register on the donor list is encouraged to do so is because 70 percent of people needing a bone marrow transplant will find their match from a perfect stranger, said Jones.

Only 30 percent of the time does a family member match, she stressed.

Patients are most likely to match donors who share their ancestry.

One Family, Four Sons In Need of Transplants

The Tim and Maggie Murry family in Frontenac are a rarity, even in the world of bone marrow transplant needs. All four of their children have a rare disease known as Diamond Blackfan anemia and are in need of bone marrow transplants.

Sean is 22; Patrick, 18; Danny, 13; and Timmy, 9.

“Basically, they don’t make their own red blood cells,” said Tim Murry, the father. “There is a failure in one of the genes . . . the precursor cell never develops into a full red blood cell.”

When Sean was born by emergency C-section, he almost died as a result of the disorder, said Murry.

“He was born with no blood essentially. His first two Apgar scores were 0.”

Sean spent four weeks in the neonatal intensive care unit, but doctors couldn’t find answers to the cause of his problems. But his health improved to the point where everything seemed fine, so they sent him home.

When Sean was about 3 months old, though, his parents noticed he was suddenly cranky, fussy and pale, so they took him back to the doctor to check it out.

“He was out of blood again,” said Murry.

After a week or two in the hospital, doctors discovered the cause.

“Diamond Blackfan Anemia is a rare blood disorder characterized by a failure of the bone marrow (the center of the bone where blood cells are made) to produce red blood cells,” the Diamond Blackfan Anemia Foundation notes on its website. “This failure causes DBA patients to become severely anemic. It is important to note that this anemia is not the result of a deficiency in iron, vitamin B-12, folate, or erythropoietin, which is a blood cell stimulating factor.”

The treatment that has worked for Sean has been a blood transfusion. Ever since 3 months old, he has had to receive one every three to four weeks.

As much as that was to deal with, the Murrys wanted more children and were told the odds of having another child with DBA were extremely low.

“We were told there was only one other child in the world that had a sibling with the same condition,” said Tim Murry.

“But they didn’t understand enough about it at the time to see the genetic connection.”

So when Patrick was born, the Murrys were blindsided by the news that he too had DBA and needed regular blood transfusions every three to four weeks.

Told that eventually their sons would need bone marrow transplants, the Murrys — who already wanted more children — made the decision to try to conceive again in the hope that the child could some day have a chance at saving his or her siblings’ lives.

But Danny too was born with DBA. And a few years later, Timmy was a surprise.

Fortunately, the younger two brothers do not require blood transfusions for treatment. They respond to a corticosteroid therapy, taking a squirt of prednisone in the mouth twice a day every other day.

But eventually a bone marrow transplant is still the best hope for them.

“The prednisone can stop working for them at any time,” said Tim Murry. “Plus, there are a lot of side effects of chronic steroid use.”

It’s only been in the last several years that the Murrys have been actively looking for bone marrow matches for their children. Sean and Patrick were doing well with their blood transfusions — which are now done more like dialysis — but now they are experiencing a problem with iron buildup (a side effect of chronic blood transfusions, said Murry) which can be fatal.

“We were doing blood transfusions because there was less risk to their lives and we hoped research would catch up,” explained Murry. “But now we’re out of time.”

Match After Match Falls Through

Early in their search the Murrys found a bone marrow match for Sean, one that was “almost perfect,” said Tim Murry.

The family was within four days of going to the hospital to start the proceedings when they were notified that the donor had changed his or her mind.

“That was rough,” Tim Murry remarked.

Less than a year later the family had almost the same experience when they were told another match had been found, only to find out it was a false alarm.

When a third match came up, the family again was hopeful, only to be disappointed again when they were later told the donor “had been removed from the (registry) list.”

They weren’t given any more information. They aren’t sure if this donor too had a change of heart or there was some medical reason behind it. Regardless, it was devastating, said Murry.

Still, as the family waits for news that matches have been found for any one of their four children, they try to look on the bright side.

“Our boys have been lucky,” said Murry, “in that, they don’t have cancer, so we’ve had a little more time to look for a match.

“Most people have something like leukemia, and they need a match right away.”

Knowing their best chance for finding matches is to sign up more potential donors, the Murrys are doing just that. With the help of their extended family and friends, the family has personally been involved in registering over 18,000 donors.

And of those 18,000, there have been 15 matches who went on to make a donation.

“That’s what keeps everyone so motivated, upbeat and excited,” said Murry.

The good news is that Sean and Patrick are actually an identical match for each other, so if a match is found for either of them, one donor can help them both.

“One person can save two lives,” said Murry.

In Danny and Timmy’s cases, the good news is that although they aren’t in need of a bone marrow transplant right now, if a matching donor is found, they can either go forward with the donation and have the marrow frozen for future use, or else they can reach out to the matching donor, explain the situation and see if the donor would be open to donating down the road, when the need becomes more immediate.

One Donor’s Experience

It was March 2012 when DeCecco went in to donate his bone marrow to the baby girl he matched.

The process leading up to that point was quick, he said, because of the severity of the girl’s cancer. He came to St. Louis for a health screening and more blood testing.

After he gave final approval, the baby was started on 21 days of continuous chemotherapy to wipe out everything bad in her blood and prepare her body for the bone marrow transplant.

“As my donation date approached, I was nervous, but knew this was the right decision,” said DeCecco. “My morning started early on the day of the donation. I was at the hospital before 6 a.m. . . . prepped, cleaned and ready to go before I knew it.

“The procedure was simple enough for me. They put me under, I lay unconscious for a while, and I woke up missing some bone marrow from my hipbones. I was checked out of the hospital the same day around 4 p.m.”

It was definitely painful, admits DeCecco, but not to the point where it was life altering.

“The surgeon made three cuts along my back where the bone marrow was extracted. Overall, the pain level was moderate as long as I did not push myself too much. I was back to running and regular activities roughly one month later and, in fact, ran my fastest half marathon three months later and my first full marathon six months later.”

DeCecco is quick to point out that the pain he felt was never so great that he regretted his decision. The overall experience was so positive, that he goes out of his way to encourage more people to sign up on the registry.

“In all, I would not change a thing. To have the opportunity to save a person’s life was very special for me,” said DeCecco. “When I received the first update on how my patient was doing, the joy and happiness I felt was indescribable. Each one after that has only increased the feelings.

“. . . if you have the opportunity, I strongly suggest getting registered and possibly saving someone’s life.”

Murry added to that thought by saying surgery isn’t the only way to donate bone marrow. Many people are able to donate just by giving blood.

This method, called peripheral blood stem cell donation, involves receiving an injection for five days prior to donating to increase the amount of stem cells made by bone marrow, which are released into the bloodstream.

The stem cells are extracted via apheresis. Blood is removed through a needle in one arm and passed through a machine that separates out the stem cells. The remaining blood is returned to the donor through the other arm.