Help patients while you work

Posted September 12th, 2014 by admin and filed in News

Help PatientsYou can join thousands of people who choose to give to Be The Match through their workplace giving campaign. Here are a few ways you can make an impact:

Community Health Charities. Be The Match is a member of Community Health Charities the largest workplace giving collaborative with a focus on health issues. If Community Health Charities is a part of your workplace giving program, you can direct donations to Be The Match. Our designated Combined Federal Campaign code is #10579.

United Way. If our information is not listed through your local United Way campaigns, you may write in Be The Match on your pledge card, along with this address: 3001 Broadway Street NE., Minneapolis, MN 55413

Matching Gifts. Many employers will match your personal donation. Check with your company for more information on matching gift programs. Employer matching gifts may also be available to you if you are the spouse of an employee or a retired employee.

If you have any questions about workplace giving, please contact Angie Dahl at adahl@nmdp.org.

Are you Tamino’s cure?

Posted September 11th, 2014 by admin and filed in News

Tamino-Castro_triple-blog-image_resized

 

 

 

 

 

In June 2013, Queens, NY residents Tamino Castro and his wife, Krishna welcomed their first child into the world – a baby boy they named Matteo.

Their joy was short-lived. Less than a week after Matteo’s birth, an unexpected medical diagnosis turned their world upside down.

Tamino experienced an unusual and severe reaction to a vaccination, prompting his doctor to recommend additional testing. After several nerve-wracking days of blood work and bone marrow biopsies, the new parents received a life-changing diagnosis: the young father was suffering from severe aplastic anemia.

Aplastic anemia is a disease in which the bone marrow does not make enough blood cells, limiting the body’s ability to carry oxygen, fight infection and control bleeding. Tamino’s best chance for a cure is a marrow transplant, so his doctors were quick to consider a transplant from one of his two siblings living in Brazil.

Sadly, Tamino’s siblings were only a match for each other – not for him. Like 70 percent of marrow transplant patients, Tamino turned to the Be The Match Registry®, the world’s largest and most diverse listing of potential marrow donors, in hopes of finding an unrelated donor.

While they continue to search for a perfect match, Tamino and Krishna are encouraging New York residents to participate in the upcoming Be The Match® Walk+Run. The event takes place on Saturday, September 20, starting at South Street Seaport Fulton and Front Street.

The 5K, 1K and Tot Trot raises funds to support marrow transplant research, help patients with uninsured treatment costs, and add more potential marrow donors to the Be The Match Registry. The better the turnout, the more hope for a cure for patients like Tamino.

You can join the Be The Match marrow registry online in honor of Tamino and other blood disease patients in need of a marrow donor, visit join.bethematch.org/tamino.

You’ll get a cheek swab kit mailed to your home. Follow the simple instructions, swab your cheek and mail the swabs back to Be The Match. It’s that easy to join and see if you’re someone’s cure.

Be The Match On Campus is rallying in the fight against blood cancer

Posted September 9th, 2014 by admin and filed in News

Be The Match On Campus students from the University of Minnesota chapter hold a registry drive.

Be The Match On Campus students from the University of Minnesota chapter hold a registry drive.

With student-led chapters at over 70 colleges and universities nationwide, Be The Match On Campus has the people, passion and power to make huge strides in the fight to cure patients with life-threatening diseases in need of bone marrow transplants.

Be The Match On Campus goals include increasing awareness of the need for bone marrow donors, building the registry, and fundraising for Be The Match. The 2013-2014 academic year saw tremendous success in all of these areas – together, all of the on-campus chapters raised nearly $60,000 for the cause and added 11,178 new members to the Be The Match Registry.

With another academic year upon us, Be The Match On Campus is geared up and ready to go. In July, committed and passionate students from each chapter attended the 2nd Annual leadership summit in Bloomington, Minnesota, where they put the wheels in motion for their biggest year yet. Goals for the 2014-2015 academic year include raising $150,000 between all of Be The Match On Campus’s chapters, and adding 15,000 new members to the registry.

To learn more about Be The Match On Campus and to track our progress toward these goals, click here.

Paul Murray’s Donor Story

Posted September 8th, 2014 by admin and filed in News

9-8-2014 2-35-41 PM

Paul, marrow donor explains the donation process

After watching a Be The Match® video about marrow donation, Paul wondered: Could he do it?

Paul is of mixed race ethnicity, and he discovered there was an urgent need for donors like him. He visited BeTheMatch.org to learn more and was convinced he could help, so he requested a cheek swab kit.

When the kit arrived in the mail, Paul swabbed his check and sent it back, indicating his willingness to join the Be The Match Registry® and donate if needed. He and his wife talked about the registry and speculated on his chances of being a match. “I remember hoping I would be called. If I could help change a life or even save a life, then what’s a needle?” says Paul.

And then, less than a year later, Paul’s wish came true: he was identified as a possible match for an unidentified patient.

Excited about the prospect of helping someone, Paul went in for blood work – and the match was confirmed. His next step was a full physical to ensure that he was healthy enough to be a donor. Throughout the process, Be The Match provided Paul and his wife with ongoing support and resources, including a dedicated donor coordinator.

“It was really wonderful,” says Paul. “The nurse I worked with became my personal contact and I could call her any time of day or night. We sat around the table and talked about what donation would mean for me and for my wife.” The nurse answered their questions and alleviated their concerns.

“One of the things that I really like about Be The Match is that they are so concerned about you as a donor,” says Paul. “They make sure you’re safe at every step and give you every opportunity to change your mind.”

But Paul didn’t change his mind. On the day of the actual donation, when he learned that he would be donating to a 17-year-old boy with leukemia, Paul broke down and cried.

“It touched me so dramatically,” he says. “I thought about how this young man was just beginning his life, and that I was about to do something that could give him time he didn’t have now.”

After the donation, Paul had a stream of visitors coming to express their admiration and congratulations. He told everyone it was an honor and that he’d do it again in a heartbeat. But the best thing he heard was that his recipient’s transplant went well.

Paul is now an ardent supporter of Be The Match. “All it costs you is a little time and a little soreness,” he says. “And you save a life.” After reading about other donors who have given two or three times he says, “It makes me want to donate again. It is the easiest way that we can give life and give hope to someone else.”

A Lifetime Worth of Thanks

Posted September 3rd, 2014 by admin and filed in News

 Tiffany and Husband PhotoTiffany Sullivan always thought she’d be the last person to get cancer… until she did.

As a working mother of two, Tiffany found time to eat right and take care of herself. So when a routine blood test showed a startlingly high platelet count, Tiffany and her family were shocked.

A devastating diagnosis

Visits to specialists and additional testing lead to an official diagnosis in November 2010—myelofibrosis, a cancer that affects the body’s blood-forming tissue.

While the news was devastating, Tiffany decided early on that giving up was not an option. A natural optimist, she recognized that part of her battle with cancer involved mental strength. By staying positive and relying on her faith and family for support, Tiffany was determined to beat the odds. “From the moment I was diagnosed with cancer, in my heart, I always believed I would get better… God doesn’t give you anything you can’t handle,” said Tiffany.  

The road to recovery

Soon after her diagnosis, Tiffany’s doctors determined a marrow transplant was her best option for recovery. All four of her biological siblings were tested, but, unfortunately, none of them were a match. After turning to the Be The Match Registry, Tiffany’s doctors quickly located an unrelated marrow donor committed to helping her survive.

Though Tiffany was encouraged, she was worried about the chemotherapy. The nausea she could handle, the weakness she could take, but there was one part of the process she was truly dreading: losing her hair. Tiffany says losing her hair was the most painful part of her entire ordeal. “My hair is a big part of who I am. When I eventually shaved my head,” she said, “I just broke down and cried.”

In the end, it was all worth it. In June of 2011, a year after her diagnosis, Tiffany received her life-saving transplant. She is certain she wouldn’t be alive today if not for the support from her family and friends and the generosity of a selfless stranger—her marrow donor.

Speaking to the man that saved her life

Tiffany knew right away that contacting her donor was something she wanted to do. If the donor center allows and both parties consent, a donor and recipient must still wait one year before they can exchange contact information. After a year of anticipation, Tiffany and her donor finally connected by phone.

While they are hundreds of miles apart, Tiffany and her donor feel deeply united. Her donor explains that Tiffany is now a part of him and his family. The two communicate often during which Tiffany tells her donor, “You are the reason I get up in the morning.”

An extraordinary meeting

“I can’t wait to know the person that saved my life,” Tiffany said. Soon, her wait will be over. On September 27th Tiffany and her family will meet this extraordinary stranger live on stage at our Be The Match Soiree, in Atlanta.  They are incredibly excited to say thank you for greatest gift of all—the gift of life.

Learn more about the Atlanta Soirée, September 27 or Minneapolis Gala, September 12.

Stepping up to the plate in the fight against cancer: Chicago Cubs player gives back

Posted August 29th, 2014 by admin and filed in News

In 2008, Chicago Cubs first-baseman Anthony Rizzo was 18 years old and on his journey to becoming a professional baseball player when he was diagnosed with Hodgkin’s Lymphoma.  After six months of chemotherapy, Anthony went into remission. Since then, he has been a committed advocate for cancer research and works to help patients and their families in their battle against cancer.

Anthony first met Ben Cowing at the hospital where Ben was receiving treatment for leukemia. Ben and Anthony have become fast friends—despite Ben’s love for the White Sox. Ben needs a bone marrow transplant, but hasn’t found his marrow match yet. Together, Ben and Anthony have teamed up to spread awareness of Be The Match and the need for more marrow donors.

In partnership with the Chicago Cubs and the Anthony Rizzo Family Foundation, A Piece of the Game will be auctioning a game-used Anthony Rizzo jersey and bat to benefit Be The Match. All proceeds from this auction will be donated through the Anthony Rizzo Family Foundation to Be the Match in honor of Ben Cowing and his family.

Bid now to support Be The Match and patients like Ben!

2014 Be The Match Community Artwork Contest

Posted August 13th, 2014 by admin and filed in News

Be The Match is excited to announce the launch of our FIRST Community Artwork Contest. This contest, open to the general public, is a creative outlet for our Be The Match community to get involved. The contest kick offs on August 18, 2014 and we will be accepting submissions though August 29, 2014.

Learn more about the submission process and judging criteria >

Before you get started, here is what you need to know:

  • We’re looking for artwork that best illustrates what Be The Match means to you.
  • There will be five age categories.  There will be two finalist chosen from each category, with a total of 10 finalists making it to the final voting round.
  • Beginning the first week in October, Be The Match will be posting the finalists on our Facebook page where the community will get the opportunity to vote for their favorite pieces!
    • You’ll have 48 hours to vote (Facebook “Like”) for the artwork you like the most. The artwork with the most votes (Likes), wins the age category.
    • There will be a total of five winners, one from each age category.
    • The winning artwork will be featured as Be The Match’s 2014 holiday greeting cards, available for purchase on Shop Be The Match

Interested in getting involved? Please read and agree to the following agreements:

 

SUBMIT your artwork today!

Have questions? Read our Artwork Contest FAQs >

 

Note: NMDP/Be The Match Employees are NOT eligible to enter.

Oops…I forgot: Coping with chemo brain

Posted August 1st, 2014 by admin and filed in News

Joette Zola photo-crop2

If things just aren’t sticking in your brain like they did before transplant, you’re not alone. “Chemo brain”—the term often used to describe thinking and memory problems after transplant—is a common experience among people who have had chemotherapy.  For most people, chemo brain doesn’t last long. But for others, it can last for months or years. Fortunately, there are things you can do to help you manage day-to-day despite those “oops, I forgot” moments.

While many people think of chemo brain as being forgetful, that’s not the only symptom. Some of the more common chemo brain symptoms include:

  • Having a hard time remembering a word or someone’s name
  • Difficulty staying focused
  • Trouble learning new things
  • Difficulty organizing daily activities
  • Having a hard time doing several tasks at the same time

If you’re experiencing these symptoms, occupational therapist Joette Zola, OTR-L, with Courage Kenny Rehabilitation Institute, part of Allina Health, says to talk to your doctor.

“While your symptoms are likely chemo brain, it’s important to let your doctor know about any new symptoms or changes you notice during your recovery, just to make sure it’s not anything more serious. If it is chemo brain, your doctor can give you some coping strategies and tips for helping you manage your symptoms. If you need extra support, ask for a referral to a survivorship or rehabilitation program that can help,” shares Joette, who helps people learn to cope with the effects of chemo brain.

Managing chemo brain challenges

While there is no cure for chemo brain, Joette offers the following tips to help you cope:

  • Plan your days and weeks. Make sure your plan is realistic, and you schedule breaks to rest.
  • Do your hardest tasks at the time of day you find it easiest to concentrate. Do these tasks in a quiet place.
  • Support your memory. Use calendars, sticky notes, checklists, alarms and alerts on your phone.
  • Turn off things that might distract you like the TV or radio.
  • Try to focus on one thing at a time.
  • Keep your normal routines and habits to lower stress on your memory.
  • Don’t be afraid to ask others for help.

At the same time, Joette says it can also help to put your energy and attention towards good self care. “As you’re coping with chemo brain, there are triggers that can make it worse, like not getting good sleep, not eating well, and stress. Every person is a little bit different. Take note of what’s making your chemo brain worse, and try to avoid those triggers,” she explains.

Getting support from your family

As you’re coping with chemo brain, you may find it helpful to talk with your family. “If you try to hide what you’re experiencing from your loved ones, it can increase your stress and make you more tired. And, that can lead to more memory challenges,” Joette cautions. “By talking to your family, you can help adjust their expectations of you right now, and they can help to support your new coping strategies.”

Joette adds, “Know that you are not alone and you don’t have to manage these challenges on your own. Talk with your doctor and your family, and ask for the help you need to manage your recovery. Above all, be kind to yourself and use the strategies and routines that work best for you.”

See how others are dealing with chemo brain

“Chemo brain is very real; even now 6 years after treatment. You can make lists, and I make reminders on my calendar. So, you find ways to deal with it.” That’s just one piece of advice offered by Matt, a transplant recipient who’s dealt with chemo brain. Watch this video about Matt, Meghann, and health care experts talk about chemo brain and share tips for managing it.

From a private journal to a published book

Posted August 1st, 2014 by admin and filed in News

Editor’s note: This story is part of a three-part series on using writing to cope with the transplant journey. Links to the other stories can be found at the end of this post.

Brian_small_011Brian still vividly remembers the first time he wrote about what he and his wife, Betsy, were going through. It was a few days after Betsy’s diagnosis. He’d come home from the hospital, and didn’t know what to do. “I just started writing and it turned into a mass email to let everyone know what had happened. Writing it was therapy. It helped me process the fact that it was happening and what was really going on,” he says.

When he checked his email the next day, he had gotten countless emails of support. “I remember tears rolling down my face because I felt like we had this community of support. I also realized that I needed a way to keep them informed,” he shares.

Brian started a CaringBridge® site that he used to keep people updated throughout their journey. “It was an amazing tool for me to be able to write, offer my thoughts, and give updates. The messages we got back also lifted Betsy’s spirits,” he remembers.

While he used CaringBridge to write publicly, Brian also kept a private journal that he started when Betsy was in the hospital for her transplant.

“Instead of having all of this stuff running through my mind, I kept a journal. It became a good way to pass the time, and also a good way for me to get things out of my head and onto a piece of paper. With a journal, you can write and be really honest with yourself. Maybe even admit things in the journal you wouldn’t want to talk about with anyone else. In your journal, you can feel safe to let yourself vent a little bit, or let yourself be scared,” he says.

While it was never the original intent, several years after her transplant, Brian and Betsy decided to turn his journal entries and CaringBridge posts into a book, “Here Comes the Sun”.

“We had a friend who told us she’d printed out some of the CaringBridge posts and she would read them when she was having a rough day to put things in perspective. We thought that if she benefited from them, maybe other people would, too,” Brian says.

But, he adds, “Don’t think you have to do anything with your writing. I turned it into a book, but even if I hadn’t it still would have been really valuable for me to do it.”

Brian’s first tip for getting started writing is to keep a notebook and pen with you. “That makes it easier. When you have time and you have thoughts in your head, you can write it down. It doesn’t have to be beautiful prose. It can be bullet points. Just start dumping things from your mind onto the piece of paper. It doesn’t have to be anything good.”

And, if traditional writing isn’t your thing, “maybe draw pictures. Maybe write poetry. Or, maybe write something totally unrelated to transplant. Any of those things are valid,” Brian shares, “All that matters is that you put something on paper and it probably helped you in some way to get it out.”

Like Brian, Brianne also made some of her writing public during the transplant journey. She used a blog to share her experience and cope with her feelings. Read her story here. Sherri is like many people who choose to keep their writing private. Read how journaling helped her here.

If you’ve used writing to help you cope, do you have tips to help others get started? Share them with other transplant patients and caregivers on our Facebook Patients Connect Page.

Writing for ‘the big wide universe’

Posted August 1st, 2014 by admin and filed in News

Editor’s note: This story is part of a three-part series on using writing to cope with the transplant journey. Links to the other stories can be found at the end of this post.

Brianne-DSC_6730While some people like to keep their writing private, others find that sharing their story can be therapeutic. Take Brianne, for example.

“I’ve been writing since I could hold a pen and form letters!” she says. So for her, it only made sense to keep a record of what was happening. What started as plans for a private journal quickly became a public blog that she hopes may be helpful to other transplant patients.

“My friends and family wanted updates, so I thought I’d put something up online. The blog was set to private at first, but then I started reading other people’s blogs. I realized how helpful it was to read about other people’s experiences and actually get the nitty-gritty. The honesty of it made me realize I have a voice and I have something to share, and maybe in the end it will help someone else along,” she says.

She found that writing the blog, which she continues to update today, has helped her, too. “Writing has helped me process how I’m feeling. Writing it down makes me identify what I feel and what’s going on,” says Brianne, who had her transplant in July 2013.

It also helped her get through the not-so-good days. “Right after transplant, I could go back and read some of my older entries when I’d had little bursts of hope or small victories. It was a good reminder that it’s not always bad,” she shares.

Writing for the “big wide universe,” as Brianne calls it, wasn’t always easy. Sometimes there were things she wanted to keep private. In those moments, she turned to a personal journal.

While Brianne is a life-long writer, she says writing can benefit anyone. She offers this advice on getting started. “Start writing for yourself and just be honest. That’s at the core of writing. Just be honest with what’s going on in your head and your heart. The more practice you give yourself, the easier it gets and it just starts to flow out of you,” she says.

“If you can’t figure out the best way to say something, allow yourself to walk away from it for a couple hours or a couple days, and then come back to it,” she adds.

And, if you’re not sure if you want your writing to be public or private, Brianne says to keep it private at first. “When you write for yourself, you don’t have anyone to satisfy but yourself,” she says. “Once you get more comfortable or you feel there are things you want other people to know, that’s the time to start putting it out there.”

Like Brianne, Brian also made some of his writing public during the transplant journey. Later, he turned his private journal entries and CaringBridge® posts into a book. Read his story here. Sherri is like many people who choose to keep their writing private. Read how journaling helped her here.

If you’ve used writing to help you cope, do you have tips to help others get started? Share them with other transplant patients and caregivers on our Facebook Patients Connect Page.