Be The Match

Be The Match Foundation kicks off patient assistance campaign

As of Tuesday, more than 5,700 new marrow donors joined Be The Match Registry as a result of the Joey Stott story featured on ABC's “Extreme Makeover: Home Edition” this week. Before Joey’s cancer diagnosis and subsequent marrow transplant, the Stott family had purchased a farm and made efforts to 'go green,' opening a local farmer’s market. A fire made their old farmhouse unlivable. This devastation happened on top of financial hardships that the Stott’s endured from uncovered transplant-related expenses.

In an effort to raise $1 million to give bone marrow transplant patients like Joey one less thing to worry about, Be The Match Foundation collaborated with “Extreme Makeover: Home Edition.” A campaign for patient assistance funds was created and officially kicked off during Sunday's episode.

For more information about the patient assistance funds visit http://bit.ly/c5Blf  

To view Sunday's episode of Extreme Makeover: Home Edition go to http://bit.ly/3U5WAQ  

To join the Be The Match Registry go to www.marrow.org/join  

Remember to watch this Sunday, Nov. 15

Watch Extreme Makeover: Home Edition Sunday, 8/7c on ABC, for the moving story of Joey Stott, transplant recipient, as she and her family receive a new home. Her marrow donor, Tom Wilhelm, is a special guest.

Tell your friends. It's going to be worth watching!

• Check out the preview at ABC >
• Read Joey's transplant story >
• Read Tom's story, posted here earlier >

Watch "Extreme Makeover: Home Edition" Nov. 15 for an amazing patient story

Tune in Sunday, November 15, to celebrate with bone marrow transplant recipient Joey Stott as she receives a new home, thanks to ABC's Extreme Makeover: Home Edition.

Joey, a 34-year-old wife and mother of three from Lena, Ill., received a life-saving bone marrow transplant in 2004. This Sunday, see her family receive a visit from Ty and the design team, along with a special guest: Tom Wilhelm, Joey's marrow donor (read Tom's story on this blog, below).

Joey's story also helps shed light on the financial hardships transplant patients and their families face. Even though Joey had health insurance when she was treated for leukemia four years ago, she is still paying off $40,000 in uninsured medical bills.

"I didn't think about the medical bills while in the hospital and my husband didn't either, but there was a lot to think about when I got home," Joey said.

In collaboration with Extreme Makeover: Home Edition, Be The Match Foundation^SM is kicking off a campaign to raise $1 million in patient assistance funds -- so more patients and their families can focus on healing.

For more on this episode of Extreme Makeover: Home Edition and to make a tax-deductible contribution to the patient assistance fund, visit BeTheMatch.org/extreme.

Tom’s Story: From Marrow Donation to "Extreme Makeover: Home Edition"

I joined the Be The Match Registry^SM in 2000. I’d heard about a local Colorado girl who needed a marrow donor. Unfortunately, she didn’t make it, but her story stuck with me. I researched where I could join the registry, then drove to Pueblo where I joined through Bonfils Blood Center, a recruitment center for Be The Match.

Getting the call
Two years later, I was called as a possible match for a woman, but she developed complications and couldn’t go through transplant. It was an absolute disappointment for me to realize I almost had the chance to help somebody out, but then I couldn’t.

In 2004, I received another call. This time the patient was a 29-year-old wife and mother from Illinois. I went in for further testing and I asked a lot of questions. I knew I was going to go through with the marrow donation –- it would be foolish and selfish not to. But I asked a lot of questions. I wanted to understand the science.

The donation experience
People ask me a lot of questions about how bad bone marrow donation hurt. But you are under anesthesia during the procedure. It hurts some when you are awake, but let me put it this way: I had the procedure on Thursday and was back at work on Monday.

On the day of the donation, I wasn’t worried about pain or discomfort. My one fear was that the doctors would say “You can go home; we won’t be going through with the marrow donation.” I just wanted to give the patient an opportunity to live.

And donating really wasn’t a big deal, in that the effort it took on my part was minimal. Yes, you can say I saved a life, but my part was just a little cog in a machine built by scientists and doctors.

Making contact with Joey
After the one-year waiting period, I learned my recipient’s name: Joey Stott. We talked on the phone and sent a few e-mails. Prior to contact with Joey, the whole experience was very rational. There was a logical progression in every step. When I got to talk to Joey, it all became very emotional.

All I hope for Joey is to have a great life. To have the opportunity to continue to be a wife, a mother, a daughter -– to have more time with her family.

So when I found out ABC’s Extreme Makeover: Home Edition was building Joey and her family a new home, I was happy to help with the project. I hope that when the episode airs November 15, more people will know about Be The Match and how easy it is to save a life and keep a family together.

• Read more on Tom’s blog >
• Read about Be The Match joining with Extreme Makeover: Home Edition >
• Watch Extreme Makeover: Home Edition Sunday, November 15, 8/7c on ABC

Wilbur's marrow donation experience

Wilbur donated bone marrow through the National Marrow Donor Program, which operates the Be The Match Registry^SM. This is his story.

The opportunity to pay back
My wife works for the post office, and this was how we became involved. (Editor's note: The United States Postal Service's long partnership with Be The Match has added more than 47,000 donors to the marrow registry.)

But the reason for my donation goes back to before I was born. It hit me like a brick wall when I got the call to possibly be a bone marrow donor:

I've finally found a way to repay the person who not only gave me life, but also saved my life very early on.

My mother's choice
While pregnant with me, my mother was told she had developed a form of cancer. The doctor told her she could treat the cancer but the baby wouldn't live through the treatment, or she could bring the baby to full term but she would die because the cancer would be too far along. Without pause, my mother decided the baby would live.

As it turned out, the doctor was wrong and my mother didn't have cancer. Had she decided to have the treatment, I wouldn't have been born. Service to others, putting them first before her own needs -- that's how my mother, Mary E. Baughn, lived her life. (After 74 years and two bouts with cancer, Mary passed from this life to her heavenly reward.)

My choice
Second thoughts about doing this? Never entered my mind!

I hate needles and my family knew this. They all wondered how I would go through the "pincushion" phase.

Well, it wasn't that bad. I really never had a lot of pain, even after the marrow collection procedure.

Everyone I talked to at the National Marrow Donor Program, especially my contact person Cindy Hofkes, made me feel like I was the only person they were dealing with. The donation procedure at Miami Valley was a breeze, thanks to all the wonderful people there.

Only a few people get a chance to possibly save a life. Sign up! Be a match!

Luz’s Bone Marrow Donation Experience

Luz donated bone marrow through the Be The Match Registry^SM. (Luz is shown with her husband, Santiago, and daughters, Gloria and Grace, who all supported her through the donation process.)

Luz's donation story:
I decided to join the registry when our church was looking for a match for one of our pastors. I joined in the summer and by October of the same year I received a letter stating that I was a possible match for a patient.

Of course, there was no question in my mind about donating. I have two daughters and the girl that would be receiving my bone marrow was only seventeen.

"Seventeen, wow!" I thought. "She should be thinking about prom and graduation, not about whether she would find a donor." 

I went back for more tests and it was determined that I was a match. I donated marrow.

My experience was hassle- and pain-free. Veronica -– my donor center representative -- was very professional and compassionate. I did some research on the internet and found that it was supposed to be painful, but I did not experience any pain or discomfort. 

I donated on Wednesday and by Saturday I was back at work. I knew I was in God's hands. By being exposed to the idea of donating marrow, my older daughter found that she could be a volunteer courier, and she joined the program. It's her way of contributing. 

Donating was an amazing experience and a little surreal. Imagine, being a match for somebody who is a total stranger. Wow!! Isn’t God amazing.

I hope that by realizing that this was a pain- and discomfort-free experience, others will be inspired to donate. I am thankful for the experience.

Support Be The Match with Extreme Makeover: Home Edition in Twin Cities

Volunteers in the Twin Cities will have many ways to help others this Friday and Saturday (Oct. 8-9). You can join the Be The Match Registry, donate blood, donate food and volunteer on an Extreme Makeover: Home Edition project!

Be The Match^® is joining ABC’s Extreme Makeover: Home Edition in St. Paul, Minn., as they rebuild the home of Sandy Morris and her children. As part of its ongoing involvement in Extreme Makeover: Home Edition, Be The Match will hold donor registry drives to encourage local volunteers and spectators to join the Be The Match Registry^SM.

In addition, the Red Cross will be holding blood drives and the Neighborhood House is conducting a food drive.

Where and When
Neighborhood House at Wellstone Center
179 Robie Street East
St. Paul, MN  

• Thursday, Oct. 8, 11 am to 5 pm 
• Friday, Oct. 9, 11 am to 5 pm

Joining the Be The Match Registry
There is no cost to join the registry. Potential donors must be between 18 and 60 and in good health. If you can't make it to the event, you can also join the Be The Match Registry online at http://join.marrow.org/morrisfamily

Donating blood
If you want to donate blood at the event, you can schedule your blood donation through the Red Cross online, using the sponsor code 7229.

Donating food
Spectators are encouraged to bring a non-perishable food item to Neighborhood House. http://neighb.org           

Volunteering to work on the house
To volunteer to work on the house visit the builders web site:

http://www.extrememakeovertjbhomes.com/712-volunteer.html

If you want to see the house, shuttles are operating from 8 am - 8 pm through Friday at the Signal Hills K-Mart Parking lot on Robert Street. This is also one of the food drop off locations.

Remembering Mary Travers

Mary Travers reached millions with her music. And after she received a transplant from an unrelated donor through the National Marrow Donor Program, she helped raise awareness about marrow donation, too.

She even met her own donor on stage at one of her concerts. See the 2006 article about that meeting:
http://www.usatoday.com/news/health/2006-08-28-travers-transplant_x.htm

And one of many articles published yesterday about Travers, this one describing her struggle with leukemia: http://www.connpost.com/ci_13357728

Donor gave her the gift of life, energy, time
"It was like a miracle," Travers told The Associated Press in 2006. "I'm just feeling fabulous. What's incredible is someone has given your life back. I'm out in the garden today. This time last year I was looking out a window at a hospital." She also said she told the marrow donor "how incredibly grateful I was."

Other patients like Mary are seeking donors. To find out how you can save a life, visit www.bethematch.org

Barbara's donation story

I decided to join the registry after several of my family and friends were diagnosed with various cancers. Unfortunately, several of them passed away.

My son's preschool was hosting a donor drive to try to find a match for the father of a student at his school. I decided that since it would be so convenient to join at a drive that I would finally do it. So in November of 2007 I joined.

In December, I received a phone call telling me that I was an "initial" match for a 3-year-old little boy. I hadn't even received my donor card yet - it came a week later!

In January of 2008, my own son become very ill. He spent a week in the hospital. While we were waiting for him to be discharged I received the call stating that I was "the" match.

I was given the opportunity to say no, given the medical circumstances that my family was dealing with. I could not say no. I almost lost my son. I couldn't imagine not helping this other little boy or his family.

So I spent the next month getting a physical and pre-donating my own blood. My mother flew up from Florida to help take care of my son while I was laid up for a few days.

In February 2008, I donated 1200 ccs of bone marrow. That same day, a little boy suffering from Wiscott Aldrich syndrome received my bone marrow.

I spent the next year waiting for each of the updates and being so happy to know that he was doing well.

In March of this year, I learned his name. I got the letter the day my son came home from another hospital visit. I cried so hard - what were the chances that my son's name and my recipient's name would be pronounced the same? It is not a common name no matter how you spell it. Definitely meant to be. (Editor's note: To protect the recipient's privacy, we cannot share the recipient's name.)

My recipient will be starting school in the fall - something his family never thought he would do. His mother and I talk every few months and we are looking forward to meeting in the future.

I would be honored to donate again if I were asked. I encourage everyone to join the registry if you are able. It is a life-changing experience to know that you have helped someone.

Story in today's Washington Post

Ibby Caputo is a 28-year-old intern at the Washington Post and a stem cell transplant recipient. Her personal account of sharing in the first-time meeting of a 28-year-old donor with her 67-year-old recipient is in today's Washington Post.

"Kerry and I also represent two sides of the same coin. I was 26 when I received lifesaving stem cells. She was 26 when she gave her stem cells to save a life," writes Caputo in "Our Cells, Ourselves, and a Lifesaving Bond." Read the full story at the Washington Post: http://www.washingtonpost.com/wp-dyn/content/story/2009/08/17/ST2009081702428.html?sid=ST2009081702428

And don't miss the connected article, "Registry Arranges 4,300 Transplants a Year," and video created by the transplant recipient for his donor, "The Greatest Gift."

Congratulations to Team Anh for success at Marian Days

Team Anh and the Vietnamese Marrow Iniatiative (Project Swab) registered more than 2,000 potential donors to the Be The Match Registry at Marian Days last weekend.

Team Anh's blog: "Marian Days and Project Swab"
http://teamanh.blogspot.com/2009/08/marian-days-and-projectswab.html

The effort at Marian Days was a great success, but it's not the end of the effort. The goal is to double the number of Vietnamese donors on the Be The Match Registry -- giving hope to patients like Dr. Anh Reiss and others.

Can you help us spread the word in the Vietnamese community? Send an e-card.