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Archive for Monday, January 21, 2013

KU student organizing marrow donor drive in honor of husband with lymphoma

January 21, 2013

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Sharilyn Mathews is organizing a marrow donor drive on Feb. 4 on the Kansas University campus in honor of her husband, Jonathan, who's been diagnosed with two forms of cancer. While this drive won't benefit her husband, Sharilyn Mathews believes that it could help others in need. The event will be 10 a.m. to 2 p.m. Feb. 4 in the Traditions area on the fourth floor of the Kansas Union.

Sharilyn Mathews is organizing a marrow donor drive on Feb. 4 on the Kansas University campus in honor of her husband, Jonathan, who's been diagnosed with two forms of cancer. While this drive won't benefit her husband, Sharilyn Mathews believes that it could help others in need. The event will be 10 a.m. to 2 p.m. Feb. 4 in the Traditions area on the fourth floor of the Kansas Union.

KU marrow donor registry drive

• In honor of Jonathan Mathews, a KU student in need of a stem-cell transplant because of lymphoma

• 10 a.m. to 2 p.m. Feb. 4, Traditions area on fourth floor of the Kansas Union

• Open to potential donors ages 18 to 44

• All that's required at drive: Answer questions about eligibility, undergo cheek swab.

• To contribute to drive, which costs $100 per registrant, go to bethematchfoundation.org/goto/TeamMathews

Sharilyn Mathews never expected to organize a marrow donor drive.

But then again, she and her husband, Jonathan, never expected him, a man in his early 20s fit enough for active military duty, to receive a cancer diagnosis — twice.

"You like to think that you can kind of control your own life," Jonathan said, "and all this is out of our hands."

While Jonathan concentrates on his treatment for lymphoma, Sharilyn has found something she can focus her energy on: a marrow donor registry drive on the KU campus, set for Feb. 4.

Though the drive is almost certainly not going to help Jonathan, it could very well help someone somewhere in a similar situation.

Jonathan and Sharilyn are both Kansas University students, and they live just off the KU campus in Lawrence. They met through the military and married five years ago.

Now they have two young boys: 4-year-old Riley and 1-year-old Grayson. Both Jonathan and Sharilyn are in the Kansas Air National Guard — Jonathan on active duty as a part of the security force at Forbes Field in Topeka, and Sharilyn in the reserves.

In April 2010, what doctors thought might be the flu or pneumonia turned out to be non-Hodgkin lymphoma. Aided by intense chemotherapy and a transplant of stem cells from his own bloodstream, he was declared in remission a few months later.

But in November 2012, during a routine screening, doctors discovered another mass in his chest. After a biopsy, he learned he again had lymphoma. But it was actually the other variant of the disease: Hodgkin lymphoma.

"That never happens," Sharilyn said. "They were kind of shocked."

Doctors' theory was that he had both kinds of cancer all along, Sharilyn said.

He would again need a stem cell transplant to recover from the extensive chemo required, but this time his own cells wouldn't do. His immune system had proved it couldn't fight the cancer on its own.

He would need stem cells from a donor, which requires a near-precise genetic match. No one in his family was a match, so he was placed on a national registry of people in need of bone-marrow or stem-cell transplants because of blood diseases such as lymphoma or leukemia.

When Sharilyn heard about this registry, called Be The Match, she asked how she could be put on the list of potential donors. The answer was to visit a donor registration drive, where workers will swab cells from potential donors' cheeks and store their genetic information.

Sharilyn couldn't find any registration drives nearby. So she decided to put one together herself.

"I don't have a clue what I'm doing, but it seems like everybody is very responsive," Sharilyn said.

As Jonathan waits for doctors to find a donor for him, Sharilyn is spreading the word about a Feb. 4 drive on the KU campus in his honor.

Sharilyn said she'd never been aware of a similar drive before Jonathan's diagnosis, and she hopes to catch the attention of other people who've never thought of registering.

"It just seems like it flies under the radar," Sharilyn said.

But in addition to spreading the word to potential donors, Sharilyn is working to raise funds. It costs Be The Match about $100 to add each person to its registry, and it asks drive organizers to do what they can to support that cost. Sharilyn's goal, she says, is to raise more money than is needed for this drive alone.

A taco dinner in Lecompton, Jonathan's hometown, will help raise some funds. It will be 4:30 p.m. to 7 p.m. Jan. 31 at the Lecompton United Methodist Church, 402 Elmore St.

The Underground Lab fitness center, 919 E. 29th St. in Lawrence, where Jonathan's brother works, will also have a group workout fundraiser on Feb. 2. And anyone can donate to the drive at bethematchfoundation.org/goto/TeamMathews.

Jonathan's doctors at KU Hospital, meanwhile, say that they've found several potential donor matches, and the family is hopeful help is on the way.

Jonathan, 24, is one semester from a history degree, but he's taking the spring semester off because a transplant would require him to spend more than three months in isolation.

"What's another year, at this point?" Jonathan said with a smile, reflecting the dark humor he and Sharilyn like to use to refer to his cancer. Treating cancer like a scary monster is reserved for "people going through a really tough time," Sharilyn says, and they believe Jonathan is going to make it.

But that will make them no less thankful when Jonathan finds a donor, who will likely never find out whose life he or she saved.

"It's a complete stranger, giving a part of him to a complete stranger to save their life," Sharilyn said.

Comments

StanTrekell 1 year, 10 months ago

My hat is off to both Jonathan and his wife Sharilyn for their pro-active, pay-it-forward stance. At a time when it would be perfectly understandable to get lost in self pity, they have chosen to come to the aid of fellow victims and to do something positive.

Here is a video link to Kansas City's KSHB Channel 41 that ran a feature story on the Mathews family during Jonathan’s initial bout with cancer:

http://www.kshb.com/dpp/news/health/Cancer-treatment-gives-Lawrence-couple-reasons-to-celebrate-life

In closing, I hope everyone will consider attending one of the three scheduled fund raisers and help this couple put their life---and the lives of countless others---back on track. If you are unable to attend in person, you can still contribute to the drive, which costs $100 per registrant, by logging in at:

bethematchfoundation.org/goto/TeamMathews

Thank you for posting the LJW link to this story on your social media pages.

Currahee 1 year, 10 months ago

I had a really nice friend who I met my freshman year in college. He was diagnosed with non hodgkin's lymphoma. It went into remission after a year of treatment, but later reappeared. He was not lucky the 2nd time around and passed away before he could complete his degree. While non-Hodgkin's lymphoma is different than Hodgkin's, I wish you the best of luck in your efforts to recover.

riverdrifter 1 year, 10 months ago

Well, I would've thrown my hat in the ring, but my arse is too old as is my marrow. It's probably too pickled by now anyway. Good luck to these kids and fare thee well.

riverdrifter 1 year, 10 months ago

BTW, I'll be there in Lecompton on the 31st, as will Roedy! :-)

Jennifer Klopp 1 year, 10 months ago

Having had cancer in the past excludes me from registering as a bone marrow donor, but best of luck to you Jonathan. I hope you find a match soon and everything goes well for you,

costello 1 year, 10 months ago

I've been on the Be The Match registry for 7 or 8 years now. I was lucky enough to find a drive where you didn't have to pay to join the registry. My understanding is that some people do have to pay to join. I couldn't tell from this article if they were asking for payment from potential registry members? Or is the fund raiser meant to cover the costs?

I've heard in the past that minorities are underrepresented on the bone marrow donor registry. In fact I ended up on the registry myself, because I had dragged a Hispanic friend there to get her registered and figured I should go ahead too. Neither of us has ever been called about donating, but I think the idea is to get as many people as possible on the registry to increase the odds of finding a good match when needed.

Christine Anderson 1 year, 10 months ago

I hear 'ya, Jonathan. Cancer at an early age, ( at any age) sucks ! Prayers ahd best wishes. If I wasn't newly diagnosed with cancer myself, I'd be glad to register.

bevy 1 year, 10 months ago

Come on out to the Taco Dinner. We'll feed ya good, and you can help a good cause too. Besides, we need to load test our new parking lot.

Mathews Family -we will continue to uphold you in our prayers!

KansasHen 1 year, 10 months ago

In case someone may have reservations about donating stem cells it is not the same procedure it was years ago. If you are a match you will be given injections to boost your stem cells and then at the time of the transplant you go through a blood draw that removes the stem cells from your blood to be used. it is an amazing gift to to be able to give to someone. Also, the closer the match the fewer issues with rejection the person recieving them will have. The more people on the list the better the odds.

Lili31ks 1 year, 10 months ago

My son was the kid recently diagnosed with Hodgkins Lymphoma and Histoplasmosis on his Birthday last month. You can follow his story at www.facebook.com/prayforzay. Many prayers to this family, friends and loved ones. I think this is a great thing to do! If I wasn't so overwhelmed with the care of my child these days, we would attend. Good luck to you all!

Patti Lash Brown 1 year, 9 months ago

Since I am a cancer survivor (1992) & past the age limit I donated money to help. I wish I was able to be the Match and do something as wonderful to help someone else. I wish everyone could take the time to be tested and see how important this is. I challenge everyone to make this one of you acts of kindness this year! Please take the time!

Patti Lash Brown 1 year, 9 months ago

The way I understand it there is no cost to be tested today. The fund raising money is to help register donors on the registry list. The test is a painless swab of the mouth. There is more information in the article and the story is also in the KU paper today.

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