BMT Journeys: An invitation to transplant recipients and their caregivers to write about and share their experience

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Medicine may heal the body, but art and writing can heal the soul. Reflective writing and creating art about your experience with cancer may help you cope with your recovery. For many people, writing and art provides a way to express deep thoughts and feelings about an experience, or make meaning out of an experience.

Reflective writing can help you and others

For Ted, a blood and marrow transplant (BMT) recipient, he decided to write about his transplant experience for personal reasons. “I had come to a point in my life where the memories of and lessons learned from my struggle began to fade. I did not want them to. Revisiting those days and subsequently writing about them seems to be the best way to “re-ground” myself,” says Ted.

But did you know what you write and create can also help future patients and caregivers? Wendy, a transplant recipient, blogged throughout her experience. She says, “To this day, I meet people who tell me how much my honesty through my journey helped them with what they were going through. I did it for me, but it helped others.”

Share your original work of written or visual art

The Be The Match® Patient Support Center invites all BMT recipients, caregivers and parent caregivers to submit an original work of written or visual art inspired by their transplant experience. This may include a story or poem in English or Spanish that is up to 1,000 words, a painting, drawing or photograph. Be The Match will publish a free print and online book of submissions near the end of 2018.

You can participate if you’re a:

  • Recipient of any type of BMT, including allogeneic (unrelated or related donor), autologous, haploidentical, stem cell, umbilical cord blood.
  • Caregiver or parent caregiver of someone who has had any type of BMT.

People younger than 18 years old must have parent or guardian permission.

Visit to learn more and share your story.

Writing can stir up emotions

It’s not uncommon to feel sad or down when you reflect on and write about your experience. “I was hesitant to cast myself back into the darkest days of my life,” says Ted. But it can bring good feelings, too. Ted notes that he “also wanted to relive the hope, the joy, and the love” from that time as well. The Be The Match Patient Support Center staff can support you and help you cope with the feelings that may be stirred up as you reflect on your transplant journey.

Call: 1 (888) 999 – 6743



Survivorship Care Plans: What are they and why do I need one?

Posted March 6th, 2018 by Be The Match and filed in News
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Linda Burns, M.D., Be The Match Vice President and Medical Director, HealthServices Research

A Survivorship Care Plan is a complete record of your medical history, all the treatments given before, during and after transplant, and what follow-up care you need to stay healthy. They keep your recovery on track by helping you coordinate your health care between the different doctors, nurses, social workers, and others that you’ll see after your transplant.

“The usual time to provide a Survivorship Care Plan to a transplant recipient is at about 12 months after the transplant,” says Linda Burns, M.D., Be The Match Vice President and Medical Director, Health Services Research. Many of the transplant care needs are decreasing by then, she notes, and the focus begins to shift to helping you stay healthy in the years to come.

What should a Survivorship Care Plan include?

Your plan should say which person on your health care team is responsible for which part of your ongoing care, says Dr. Burns. A Survivorship Care Plan is your personal tool ─ tailored just for your specific needs ─ to help you keep track of all your health care information in one place. Dr. Burns notes that a good Survivorship Care Plan should include:

  • A summary of treatment
  • A detailed plan for ongoing care
  • Follow-up schedules
  • Lists of any tests you need
  • Recommendations for how to watch for any treatment-related issues

How to use your plan

It is important to share your Survivorship Care Plan with your primary care doctor as well as any other specialists involved in your after-transplant care. This will help everyone communicate with each other.

Take your Survivorship Care Plan with you to all your visits with doctors and nurses. Use it as a reminder to ask questions, take notes, keep track of test results, and write down the next steps. “Transplant recipients have told us that having a plan helps relieve their worry that something won’t get done that’s important to help them stay healthy,” says Dr. Burns.

A recent research study of more than 450 transplant recipients showed this to be true. In this study, half the recipients received a personalized care plan, and half didn’t. Everyone in the study was 1-5 years past their transplant, and those who had a personalized care plan reported significantly less stress related to their cancer treatment.

“We strongly feel that empowering patients with knowledge and information will facilitate their survivorship care,” says Navneet Majhail, M.D., M.S., leader of the research study and director of the Blood and Marrow Transplant Program at the Cleveland Clinic Taussig Cancer Center.

Share your plan

Caregivers are important members of each transplant recipient’s support team. Parent caregivers can use the Survivorship Care Plan to keep track of their child’s health care needs, which will change as their child grows up and becomes an adult.

Dr. Burns also encourages adult transplant recipients to share their plan with caregivers and family members. It’s important for them to know what steps are needed to help their loved one stay healthy. “Caregivers and family members can help you coordinate visits and tests, remind you of questions to ask your care team, and may even notice symptoms that you haven’t. So it’s best to keep your support team informed.”

If you don’t have a Survivorship Care Plan

Your doctor or care team should give you a plan when you finish your transplant. If you’ve finished treatment but don’t have a Survivorship Care Plan, ask your transplant doctor or care team for one. Be sure to ask your doctor about anything in your Survivorship Care Plan that you don’t understand.

And if your transplant was several years ago, your care plan may need updating. That’s because transplant doctors know more than they did in the past about caring for transplant recipients, explains Dr. Burns. Plus, she notes, medical guidelines for follow-up care have changed with time. “Take your care plan to your appointments and ask them to review and update it so it meets your current needs.”

How Be The Match can help

You can also use free after-transplant care guides from Be The Match® to help keep your recovery on track. The guidelines have information on the recommended tests and exams for your 6 month and yearly checkups after transplant.

The guidelines are available in a free mobile app, online or print. There’s a version for your health care team, too. Bring a copy of your care guide with you to your next BMT appointment.

Counting down the days to Super Bowl LIVE!

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Minnesota Super Bowl Host Committee Partnership 

Since June, Be The Match has partnered with the Minnesota Super Bowl Host Committee (MNSBHC), and we are thrilled to be working with this organization. This partnership is a great opportunity to celebrate our communities’ diversity while raising awareness of our life-saving mission.

Through our partnership with the MNSBHC, Be The Match is sponsoring the Business Connect program, the NFL’s supplier diversity program to develop and utilize Minnesota-based, minority-, women-, LGBT- and veteran-owned businesses.

Additionally, Be The Match is sponsoring Crew 52, the group of 10,000 volunteers who will be welcoming guests into our beautiful city of Minneapolis, during the Super Bowl LIVE event.

Super Bowl LIVE

Come visit Be The Match at Super Bowl Live! This epic 10-day fan festival will take place on Nicollet Mall in downtown Minneapolis from January 26th – February 4th. The event is free and open to the public and will feature live concerts, national broadcasts, food and fun. The theme, “Bold North,” will showcase Minnesota winter, celebrating humor, hospitality and the heroic spirit.

The Be The Match Activation Zone, will be located on Nicolette Ave., between 10th and 11th street. Fully enclosed and heated, the activation space will provide attendees the opportunity to experience what it means to literally save a life. Throughout the 10 days, Be The Match Interactive Zone, will feature special guests, games and giveaways! 

Don’t miss this once-in-a-lifetime opportunity to be part of the world-class fun and excitement!

When caring for a transplant patient, take care of yourself, too

Posted January 7th, 2018 by Be The Match and filed in News
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Justin, transplant recipient, with mom and caregiver, Kari

If you are a transplant recipient, please share this article with your caregivers.

Researchers know that transplant caregivers are affected physically, emotionally, socially and spiritually by the transplant process and recovery. But caregivers may be thinking about all they have to do, and not thinking of taking care of themselves. In this article, you’ll find tips to help cope with the many challenges that come with taking care of a loved one who is recovering from a transplant. Plus, Be The Match has many free resources, listed at the bottom of this article, that can help.

Coping with stress

The stress of recovery from transplant affects you, too. And if you become physically exhausted or emotionally overwhelmed, you won’t be able to provide the care you want to give your loved one in the months ahead.

People have different styles of coping with stress. Think about your coping techniques and how they are, or aren’t, helping you. You can do this on your own, but some caregivers find it helpful to get support from others, including professional counselors, to help them learn coping techniques that work best for them.

Here are a few things to remember to help you cope when you feel stressed:

  • It’s normal to have emotional ups and downs
  • Put first things first and let the little things go
  • It’s okay to take some time alone
  • There are people who can help
  • You do many things very well
  • Take a breath in and out

Coping with emotions

Caregiving can bring up a lot of different emotions. And some of them, like anger or guilt, might at first seem wrong, and cause a caregiver to feel ashamed. But it’s important for you to know that all of your emotions are normal and okay. It’s how you cope with them that matters.

Here are some common emotions that caregivers sometimes experience, and some tips on handling them:

  • Feeling sad is normal. But if it lasts for more than 2 weeks, and interferes with your daily life, tell your doctor. It could be depression.
  • If you’re angry, do some self-reflection to figure out why. Knowing the cause might help you think of ways to cope.
  • Transplant has brought about a big change in your life, and it’s okay to grieve the loss of the way things were before. Grief takes time and attention to work through, and professional counseling may help you through the process.
  • No matter how dedicated you are, you might feel guilty that you’re not able to do more. Or, you might even feel guilty if you focus on your own needs. Remember, nobody is perfect and you do many things well. Caring for yourself is as important as caring for your loved one.
  • You might feel alone if friends and family have stopped visiting, or if you think no one understands your situation. Sharing your feelings with someone you trust may help you feel less lonely.

You have your own path to recovery

Because you are focusing so much on your loved one, you might not notice your own stress.

It’s important for you to pay attention to your own health and well-being because severe or chronic stress can cause depression, problems with memory and concentration, tiredness, and other issues if left untreated.

One caregiver put it this way: “I wasn’t really interested in any of the things I used to do. I was so busy trying to make it through each day that I never noticed that I had changed. My doctor explained that I was depressed and overwhelmed ─ and he prescribed anti-depression medicine (which helped). Both my daughters said they were happy to hear me laugh again.”

Sometimes it can help to talk with someone who’s been where you are and gets it. The Be The Match Peer Connect program connects you with a trained volunteer who is also a transplant caregiver. These volunteers can answer your questions and share their own experiences. Visit the website to learn more and request a Peer Connect connection.

Getting help from others

Everyone needs support when they are going through a difficult time. It’s okay to ask for and accept help. Remember, you would want to help your family and friends if they were in your situation.

Reach out to family and friends and let them know that you still need their help once you’ve left the hospital and returned home. General requests such as “Could you watch the kids sometime?” likely won’t help. Instead, ask for something specific such as “Next week we have several appointments. Could you watch the kids next Friday afternoon from 2 to 4?”  If you don’t live close to family or friends, consider asking neighbors, faith community members or co-workers for support.

Also, keep a list of specific tasks you need help with, like:

  • Meals
  • Childcare
  • Transportation
  • Yard work
  • Housework
  • Grocery shopping

Post the list in your home where people can see it, but more important, share it with friends, family, coworkers, or any other potential source of support.  If you use social media or other online support forums, such as Caring Bridge, consider making requests for help there.

Support for caregivers at every step

Remember, you’re not alone. Help is available. Contact the BMT Patient Navigators through the Be The Match Patient Support Center. They can help you get reliable, easy-to-understand information from diagnosis through recovery. They can also help you access one-on-one support through our:

Call or email us to learn about the many other ways we can support you through confidential, one-on-one support from caring experts. We’ll listen and help you find answers. All of our programs and resources are free.

CALL: 1 (888) 999-6743 Monday through Friday, 8 a.m. – 5 p.m. Central Time




Volunteer Spotlight: Marcia Diefendorff

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Marcia Diefendorff first decided to get involved with Be The Match® when a family friend was fighting for their life and needed a bone marrow transplant in order to survive. She reached out and asked how she could help after learning about the marrow donation process and the great need for more donors to join the Be The Match Registry®.

Marcia began volunteering at local events throughout the Peninsula and South Bay Area in California where she educated people about Be The Match, the need for new registry members, and the importance of saving lives. It quickly became clear how talented Marcia was at teaching and interacting with people, which is no coincidence as she had been a teacher for many years.

Not only did Marcia volunteer around the time of her friend’s transplant, but she continues to stay extremely involved. You can still find Marcia at events two to four times a month and even up to four to five times a week during the busy season! Her dedication and generosity has not gone un-noticed. Marcia now trains other volunteers about the registration process, runs her own events, and continues to make meaningful connections with everyone she encounters.

“She improves every event she attends and is one of the most genuinely kind people I know. When I’ve called to thank her she usually says that she appreciates the call, but doesn’t do it for the thanks you’s,” says Amber, friend and former Be The Match Community Engagement Representative.

Marcia has made a huge impact already and continues to by volunteering for Be The Match. She has added many new potential donors to the registry, which provides patients with more hope and a chance at finding their life-saving match. Marcia’s dedication and years of service has earned her the Daily Point of Light Award as well as the title, Volunteer Ambassador of Be The Match.

If you’re a proud Be The Match volunteer like Marcia, share your support on social media with one of our volunteer badges.

Meet Steven: marrow donor and Walk+Run volunteer

Posted October 24th, 2017 by Be The Match and filed in News
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Steven, Be The Match Volunteer and Marrow Donor

Steven loves 80’s music, playing softball and watching movies with his girlfriend, Minga. He has an American Bulldog named Axel Foley, and he’s worked in banking for 18 years and Parks & Rec. for 10. He lives in Charlotte, N.C. Steven shares how he became a marrow donor and why he volunteers with the Be The Match Walk+Run events.


Why did you join the Be The Match Registry?

I joined while I was donating blood to the Red Cross. Back then it took a vial of blood to join. I was already hooked up, so I said, “Sure, why not?” It sounded exciting.


What was it like to donate marrow?

It was years later when I got the call that I was a possible match for a patient. They asked me if I wanted to proceed with the donation process. I would not have been able to live with myself if I hadn’t decided to help. The donation process was a breeze. Everyone on the Be The Match staff was very helpful and very appreciative.


What did you know about your recipient?

All I knew was the recipient was male, we were the same age, and he lived overseas. Someone from Be The Match was with me during my donation so that my marrow could go immediately to the airport.


Why do you volunteer for Walk+Run?

I’m not a rich person, so I don’t have a lot of money to give. But what I do have is a little extra time to give. It doesn’t take much of your time to volunteer and help someone. Since the Be The Match staff was so nice during my donation, I decided to become a volunteer ambassador. And I get to work with great people, like Be The Match community engagement rep., Addie Sanders. With her help I have gotten to meet many new people and hopefully helped make a difference in their lives.


What do you say to encourage others to get involved?

I tell them that joining the registry is an easy way to be a hero.


Learn more about how you can get involved.

Meet Jacqueline: transplant nurse and volunteer marrow courier

Posted October 23rd, 2017 by Be The Match and filed in News
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Jacqueline with her family

Transplant nurse and Be The Match courier, Jacqueline with her family

Jacqueline was born in Lima, Peru, and moved to New Jersey in 1977. Today, she’s a marrow transplant nurse and volunteer courier who lives in Texas with her husband and children. Jacqueline loves to travel, eat and show her kids that the world is a great place, and they must try to accept and embrace what is offered to them. Jacqueline shares what it’s like to be a transplant nurse and volunteer marrow courier.

it like to be a bone marrow transplant nurse?

I love being a nurse.  I always tell new nurses to treat their patients as if they were one of their family members. This way they will never lose that passion.  I started working at MD Anderson Cancer Center in 1986 as a phlebotomist. Then I went to nursing school and worked as a bone marrow transplant nurse from 1998 to 2011.  I also worked as a bone marrow transplant research nurse for 3 years, but realized I need to talk to patients and not to a computer. I like patient contact and I returned to patient care.  Stem cell is where I started my nursing career and it’s my baby.


Your cousin is a transplant doctor in Peru?

I had not seen my family back in Peru in many years, but I found out my cousin is a very well respected hematologist and the very first doctor to do a bone marrow transplant in Lima!  His name is Dr. Sergio Murillo Vizcarra.  Now, I go home to Peru every chance I get.  We talk about what else?  Stem cells!

He informed me that they just started the national registry last year.  So to me this is very exciting. Lots of Hispanics and other cultures are not very aware of what stem cell transplant is. They think the donors will be operated on and their cells will be taken and they, too, will get cancer or sick … We have a lot of teaching to do still after all these years.


What’s it like to be a volunteer marrow courier, helping to deliver donated marrow to a patient?

It’s the best feeling when you are transporting cells that someone donated to save someone else’s life. I always say a prayer so that the person who gets the donated stem cells does well.  (I know it sounds cheesy, but I do.) When we had our twins I told my husband, Martin, he had to do something nice to thank God for our babies.  Now Martin is also a volunteer marrow courier. It’s a wonderful feeling to get to do something good for someone else, and to know that just maybe it helped that person have a second chance.


What do you say to encourage others to get involved?

I always try to educate people of what a stem cell transplant is, and if they are ever chosen what the collection process entails. The other day I heard my kids tell their little friend “my mommy is going to deliver cells so she can save someone’s life.”  This makes me hope that they too will get involved in some way like their mom and dad.

Learn about how you can get involved. 

World Marrow Donor Day is September 16!

Posted September 8th, 2017 by Be The Match and filed in Donor Stories, News
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Did you know that nearly 50% of all marrow transplants use international donations?

Be The Match is one of 100 organizations from 57 countries that celebrate World Marrow Donor Day. The day is dedicated to thanking marrow donors, as well as registry members, who are ready to donate to any patient if called. It is also a day to help raise awareness about marrow donation – both the need for volunteer donors and the impact it has on patients.

On behalf of all patients, we want to thank each donor for their selfless decision to donate to those in need of a life-saving marrow transplant.

We also want to thank all registry members for their continued commitment to help any patient. There are more than 30 million people across the globe who have registered to donate marrow to any patient if they are a match.

Many people are still unaware of the need for volunteer marrow donors and the process of marrow donation. You can help spread the word of the life-saving impact donation can have.

Help us celebrate World Marrow Donor Day!

  • Thank donors and registry members on social media by saving and sharing the Thank You graphic. Tag Be The Match in your post and use hashtags #ThankYouDonor, #WMDD and #BeTheMatch.
  • Use our World Marrow Donor Day Facebook profile frame on September 16:
    • Hover over your Facebook profile image and click “Update Profile Picture” then click “Add Frame”
    • Search for “World Marrow Donor Day” and select one of the Be The Match World Marrow Donor Day frames
    • Position the frame over your profile image and click “Use as Profile Picture”
  • Tune in as Nicolette Peloquin, peripheral blood stem cell (PBSC) donor and Miss Rhode Island 2017, goes live for a donor Q&A on the Be The Match Facebook page Sept. 16 at 3pm CT. She will talk about her donation experience and answer viewer questions.
  • Encourage friends and family to join the registry by sharing

Sickle Cell is Global

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FAQs Debunking the myths for Sickle Cell Awareness Month

Sickle Cell Disease Illustration

Sickle cell disease (SCD) is an inherited red blood cell disorder which affects approximately 100,000 people in the U.S. It causes organ damage, pain, low quality of life and even premature death. A blood and marrow transplantation is currently the only known cure.

Unfortunately, many people have misconceptions about transplant due to the lack of awareness and misinformation that is out there on the web. September is Sickle Cell Awareness month which makes it a perfect time to debunk many common myths about blood and marrow transplants for SCD. Addressing these myths and answering questions can help those struggling with SCD make informed decisions about their treatment options.

Debunking the myths; your questions, answered.

Can a blood or marrow transplant (BMT) cure sickle cell disease?

A blood or marrow transplant (BMT) can cure SCD. The unhealthy cells are replaced with healthy blood-forming cells from a donor. It doesn’t even involve surgery, but rather a process similar to a blood transfusion. To learn more about the entire process, click here.

My doctor didn’t tell me about transplant. Does that mean it isn’t an option for me?

If your doctor hasn’t mentioned transplant it doesn’t mean that it isn’t an option for you! Ask your doctor about it and they will send you to a transplant doctor who will tell you if transplant is an option for you.

What are the risks and benefits of transplant?

The risks and benefits of transplant can vary from person to person because people respond differently to transplant. A transplant doctor can tell you more.

Could someone with the trait still be my donor?

Many people think that if you have the SCD trait, you cannot be a donor. The truth is, having the trait doesn’t keep someone from being a donor. It is most important that you and your donor have closely matched human leukocyte antigens (HLA), which proteins are found on most cells in your body and are passed down from your parents.

How much does transplant cost?

Transplant can be expensive. If you talk to a case manager at your health insurance company, they can tell you the rules and what your plan covers.  Be The Match has grant programs to help some patients with costs before and after transplant. Call the Be The Match Patient Support Center at 1 (888) 999-6743 to learn more.

How will my life change after transplant?

Your life may change in many ways after transplant. You may not have SCD anymore, but recovering from a transplant takes time. A transplant doctor can talk to you about how your life may change after transplant. You can call us to talk with someone who’s been through transplant before at 1 (888) 999-6743

How many people have had transplant for SCD in the U.S?

Although it is estimated that thousands of people living with SCD could benefit from transplant, less than 1% of people eligible have had transplant. This table below gives you more detailed information.

Did you know…?

  • Only 18% of patients with SCD have a healthy, fully matched sibling donor. People can turn to the Be The Match Registry® for help finding an unrelated donor or umbilical cord blood unit.
  • Only 9% of patients with SCD can find a match through the registry due to the low number of African Americans on the registry and donor unavailability.
  • The chances of an African American patient finding a match on the registry is between 66-76%, the lowest compared to all other populations on the registry.
  • Patients are most likely to match someone of the same ethnic background, and doctors request donors in the 18-44 age group more than 9 out of 10 times.

“The pain for me was only temporary. Think about the patient”

Posted August 17th, 2017 by Be The Match and filed in News
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Marrow Donor Aja-Rei

Marrow Donor, Aja-Reigh, with her Dad, Arthur

Aja-Reigh loves tacos, action movies, singing along with Beyoncé–and helping people. “My mom would always tell me that it is important for people to care for each other.” That’s what motivated her to join the registry in 2013. A year later, she got the call she was a match for a 13-year-old boy with sickle cell disease. She was filled with joy and eager to move forward. Her family was excited for her, but were worried it was going to hurt. “I reminded them to think about the patient. The pain for me was only temporary,” said Aja-Reigh.

It was lucky for Justin, her transplant recipient, that Aja-Reigh felt that way. His ethnic background (Guatemalan and Jamaican) made his chances of finding a match very slim, and for many patients like him, the wait to find a match can be long and uncertain.

She and Justin met for the first time in May 2017 at Be The Match’s New York Soiree, inspiring tears of joy from the crowd. The funds raised at the event help increase the ethnic diversity of the registry, ensuring that more patients like Justin can find a donor when they need it.

Looking back, Aja-Reigh has this advice for other donors: “Don’t let other people discourage you. Think about the recipient. If you have something that could potentially save a life, why not donate it?”