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MU bone marrow drive hopes to influence even more lives

Tuesday, October 15, 2013 | 6:34 p.m. CDT; updated 8:10 a.m. CDT, Wednesday, October 16, 2013
MU senior Sam Tochtrop swabs his cheeks at the Trulaske College of Business' bone marrow registry station. The swabs, along with Tochtrop's registry form, will be sent to a national database to see if he is a compatible bone marrow donor for a patient across the country.

*Correction: Annie Bastida talked about her friend Bari changing career paths because of her involvement with Dance Marathon. An earlier version of this story misstated her friend's name. 

**This article has been updated to include a link to Dance Marathon's website.

Delete Blood Cancer booth locations at MU

The Delete Blood Cancer team will be at six MU locations through Thursday. The team will assist in filling out an information/consent form and with swabbing the insides of cheeks for tissue typing — the method used to find a potential match for patients in need.

Anyone between ages 18 and 55 can participate. The process is painless and will take fewer than five minutes. There is no fee to register.

Delete Blood Cancer booth locations and times:

Through Thursday

  • Hearnes Center — 600 E. Stadium Blvd., from 11:30 a.m. to 7:30 p.m.
  • Trulaske College of Business — Cornell Hall, 700 Maryland Ave., from 9 a.m. to 3:30 p.m.
  • College of Engineering — Lafferre Hall, 416 S. Sixth Street, from 9 a.m. to 3 p.m.

Wednesday and Thursday

  • MU Student Center — 901 Rollins Road, from 10 a.m. to 2 p.m.

Thursday

  • School of Health Professions — 100 Lewis Hall, from 9 a.m. to 3 p.m.

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COLUMBIA — When MU junior Brandon Pilas decided to get his cheek swabbed during his freshman year at the Homecoming Blood Drive, he had no idea how that swab for cheek cells would change his perspective on life.

Joyce Jones, Delete Blood Cancer's donor recruitment coordinator, said Pilas is one of 326 MU student matches and is one of 50 students who have completed a transplant.

On Monday, the first day of the drive, 508 people were added to the registry, making the campuswide total 6,104 people.

Delete Blood Cancer is the largest bone marrow donor center in the world and inspires people to continue the fight in eradicating blood cancer. More than 3.5 million people are registered bone marrow donors worldwide, according to the organization's website.

MU has hosted the Delete Blood Cancer's bone marrow drive in conjunction with the Homecoming Blood Drive and the American Red Cross since 2009, but this year, six locations are set up on campus. Signing up for the bone marrow registry is easier this year because only one booth has been at MU's Hearnes Center in the past, Jones said.

MU already has one of the largest blood drives, and Jones said the goal is to make this bone marrow drive the largest one ever held on a college campus.

"Every day, thousands of patients search for a bone marrow donor match, while only four out of 10 find a match," Jones said. "We hope college students and the local community are encouraged to register as potential donors to help make our goal a reality."

Pilas' story as a donor

Pilas received an email that he was a match for someone in August 2012 and donated through the peripheral blood method in November 2012, he said.

Pilas said there are two ways donors can donate bone marrow. A donor can donate through a nonsurgical procedure called peripheral blood stem cell transplant, or through a surgical bone marrow donation procedure that requires anesthesia.

"Being on the registry is pain-free," Pilas said. "I know there is this kind of stigma that it's a really painful process, but I don’t think people know there is more than one option. Only nine out of 10 people do the option that I did."

But, Pilas said, he doesn't know much about who received his donation. 

Delete Blood Cancer follows a nationwide policy that states if both donor and patient are from the U.S., they have to wait one year after any procedures for information about each other, Jones said. Other countries have policies in which some patients never find out who donated to them.

The only details Pilas knows about the person who received his peripheral blood donation is that the person is a middle-aged woman who lives on the East Coast.

"About two days before the procedure, I was getting really nervous and just very anxious," he said. "I finally realized that I was actually going to help someone. I actually broke down, and I didn’t really know why."

Pilas said his new outlook on life has drawn him into more service-based organizations.

"It’s just that feeling about helping that one person, not even knowing them, that really impacted me," he said.

Pilas said he hopes more students will sign up for the bone marrow registry.

"I really want everyone that attempts to give blood to be on the bone marrow registry so we can save as many lives as we can and hopefully delete blood cancer," he said.

Pilas also said he hopes the additional locations on campus will get people who are unable or scared to give blood a chance to contribute in a different way.

MU senior Ed Grattan had a similar experience to Pilas' but donated through the surgical procedure option.

"Even if there is a certain amount of pain, it is nothing compared to what the other person is going through," Grattan said.

Like Pilas, Grattan only knows a few details about who received his donation: a 10-year-old Australian girl.

"When I swabbed, I knew the possibilities of actually being a match, so I kind of put it in the back of my head and didn’t think it would ever happen," Grattan said. "But when it did, I was really excited, and when I found out it was a little girl, that was even more of an incentive to do it."

Rylan's story

Stories like Pilas' and Grattan's make registering and then donating so important.

Sharon Newman said her 6-year-old son, Rylan Newman, would not be with their family today if it weren't for his bone marrow transplant.

Rylan, a familiar face at MU because several *Dance Marathon teams have danced in his honor in the past, has had leukemia since he was 3 years old.

When he was diagnosed in December 2010, Newman said it did not put their family down — they were in shock but were ready to battle.

Throughout Rylan's three years of chemotherapy, treatments of radiation to the brain and lifesaving experimental treatments in Denver, his mother said he has been amazing and has adapted well.

"At times, I don’t think he thinks he is any different than anyone else," Newman said. "He doesn’t like some of things he has to do (such as taking 10 medications orally three times a day), but he does them — he is so courageous and strong, an inspiration to so many people."

One of those people is one of Dance Marathon's former executive directors, Annie Bastida.

Bastida said she has seen Rylan grow up in the past four years he has been involved with Dance Marathon.

"He has always acted with resilience, grace and the cutest little smile in the entire world," she said.

The Dance Marathon directors knew Rylan was battling cancer, but it wasn't something they ever saw "on him," Bastida said.

Bastida recounted a time from this past summer when Newman told her that she didn't know if Rylan would make it to his sixth birthday.

"I got a whole bunch of people from Dance Marathon and left work early to run out to their house to put together a playground for him and to throw a little emergency birthday party," Bastida said. "We weren’t quite sure if he was going to make it through."

One wouldn't necessarily think Rylan has had to fight this fight, Bastida said.

"Also over the summer, I was there when he got to be in a helicopter over at the Children's Hospital," she said. "You could tell he wasn’t having that great of a day because he was a little bit fussy in the beginning, but as soon as he got to sit up in the helicopter, he had the biggest smile. It was just the sweetest thing."

Rylan has made connections with so many students at MU, Bastida said.

"I don’t think he realizes he has impacted so many people’s lives," she said. "My friend Bari, another Dance Marathon director last year, she is now going into child life because of Rylan."

Even Rylan's mother has been an inspiration to her, Bastida said.

"I don’t think that Sharon realizes that the strength that she has every day is something I hope to have as a mom in the future," Bastida said.

Looking ahead for Rylan

Rylan had a bone marrow transplant Sept. 18, and his family is hoping and praying that his body doesn't reject the donor's marrow, Newman said.

Rylan now lives with his mother in St. Louis at the Ronald McDonald House apartments near the St. Louis Children's Hospital and will be there until the end of this year.

Newman said they hope to be home before the new year. However, she said Rylan cannot be around large groups of people or go to school for six months after they return home to Columbia.

After that six-month mark, Newman said his family hopes his health will be "awesome."

"There’s a chance for rejection of the donor marrow, and that we would have to find another donor," she said. "But his donor was a 24-year-old U.S. female, and they were a perfect 10 out of 10 match."

Newman said she wants people to know anyone can get leukemia — anyone's child can get leukemia.

"People need to be on the registry and willing at any time to save a life," she said.

Even though Rylan has found a match, his family asks that Delete Blood Cancer continue its educational mission to get more people on the registry, Jones said.

She said the bone marrow drive's goal this year is 2,700 registrations.

"There are at least 10,000 people at a time waiting to find a match to get a second chance at life," Jones said. "It is going to take all of us to make this happen and to make a difference."

Supervising editor is Elizabeth Brixey.


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