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!

Little Emilie!

Posted January 16th, 2018 by Be The Match and filed in Patient Stories
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Little Emilie!

At 9 months old, Emilie Meza was diagnosed with acute myeloid leukemia and her family was told that her best hope for a cure would be a marrow transplant. She is now 1 year old, and has not found a match on Be The Match Registry®. After searching for a marrow match, her doctors and family made the tough decision for her to receive a haploidentical marrow transplant from her father, Eduardo Meza. A haploidentical transplant comes with extra precautions, as this means he was a half-match to Emilie, not a full match. While recent outcomes of haploidentical transplant are promising, many marrow transplant doctors prefer a fully matched adult marrow donor over a haploidentical marrow donor. But this was the best option available for Emilie.

Emilie’s family continues to encourage others to join the registry and support Be The Match® so that other families don’t need to make the tough decisions they have regarding alternative treatment options. Emilie received her marrow transplant from her father, and is now continuing to recover with her family and doctors by her side. You can get frequent updates on her recovery from their facebook page, Emily Meza’s Bone Marrow Transplant Journey.

Please consider signing up for a monthly financial gift to help patients like Emilie find a fully matched donor on Be The Match Registry. Your financial support helps add more potential marrow donors to the registry, fund advancements in marrow transplant science and provide relief to patients and families facing financial barriers to treatment.

Give today!

 

Meet Lorayne, Peer Connect volunteer

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Lorayne, transplant recipient and Peer Connect volunteer with her grandchildren

Lorayne was diagnosed with acute myeloid leukemia (AML) in October 2011, and 5 months later received a transplant from a donor in Germany.

She remembers how bewildering it was to get her diagnosis and how hard it was for her to process all the complexities of getting a transplant.

So she was grateful that her transplant team didn’t just focus on her medical and physical needs, but also helped her connect with someone who had been through the transplant process. That person was Wendy, a Peer Connect volunteer, who helped Lorayne address her fears and anxieties about transplant.

And now Lorayne wants to give back and help others going through the transplant process. She has been a Peer Connect volunteer for about 4 years now.

“Everyone’s journey is difficult,” she says. “I feel like they want to know that they can do this.”

 

Forming special bonds

Be The Match started its free Peer Connect program because transplant patients and caregivers reported that they benefited a great deal from talking with someone who’s “been there” and “gets it.”

“A lot of people just need to talk,” Lorayne says. “I understand what they’re going through. I had all those fears and worries, too.”

Lorayne, now a grandmother of 7 and 5-year-old grandsons and a 2-year-old granddaughter, was a kindergarten teacher. Because of her profession, she says that she knows how to be an active listener, which she says is critical to transplant patients and caregivers. “As a teacher, I think I have the temperament,” she says. “I’m encouraging and empathetic.”

Some people have frustrations with their family or their medical center, she says. One way Lorayne helps people is by giving them a chance to verbalize those frustrations, which allows them to unburden themselves.

“My experience as a volunteer is that people are so ready to talk ─ and need to talk,” Lorayne says. “They want information, they want their fears and anxieties addressed, and they want reassurance.”

Part of that reassurance for patients and caregivers is simply talking to someone who has successfully gone through the transplant process, says Lorayne. “I think back to my experience talking with Wendy. She got through it and she was alive. People want to know there is life after transplant.”

 

What to expect from the Peer Connect program

The Peer Connect program matches volunteers with patients or caregivers based on the request. Some people want to talk to someone who is close to their age. Other people may want to connect with someone who has the same disease or other life circumstance.

In one instance, Lorayne connected with someone who had the same type of graft-versus-host disease (GVHD) that Lorayne did. Talking with another person who also had to deal with GVHD of the liver helped that patient a lot, Lorayne says, but the connection was also a learning experience for Lorayne and their connection gave comfort to both of them.

Lorayne’s approach when assigned a Peer Connect patient is to email the person first, to arrange a convenient time to talk on the phone. The first call can be as long as needed, Lorayne says, and begins with Lorayne asking about their experiences and their current situation.

“As they’re able to talk, I’m able to share my experience with them,” Lorayne says. “They can expect a listening ear, a comforting volunteer, who will be there for them even beyond a phone call.”

Typically, Lorayne and her connections will talk again or connect by email a few more times. “As volunteers, we’re always there for follow up,” Lorayne says.

Request a connection

If you’re struggling with your transplant recovery, you are not alone. No matter where you are in the transplant process and recovery, and whether you’re a transplant recipient or caregiver, our Peer Connect program can connect you with a trained volunteer who’s been there.

Visit BeTheMatch.org/peerconnect to request to talk with a Peer Connect volunteer.

Or:

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

EMAIL: patientinfo@nmdp.org

LEARN MORE: BeTheMatch.org/patient

ORDER RESOURCE MATERIALS: BeTheMatch.org/request

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.

Protect access to transplant for patients like Mark

Posted December 4th, 2017 by Be The Match and filed in Patient Stories
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Mark, transplant recipient, with his wife

In 2008, after feeling tired constantly and experiencing night sweats, Mark knew these symptoms were a red flag and visited his doctor. Blood tests revealed his counts were dramatically low – which indicated lymphoma. Additional tests revealed that Mark had mantle cell lymphoma, a very rare form of lymphoma that is classified as incurable. A bone marrow transplant would be Mark’s best hope of keeping his disease in remission.

Mark started six rounds of chemotherapy to go into remission while his doctors at the University of Michigan searched the Be The Match Registry® to find him a match. He had five perfect matches. Mark’s second perfect match stepped up to be his life-saving donor. Throughout his transplant journey, Mark said he felt fortunate to be able to focus on recovery and healing instead of worrying about his insurance coverage.

The cost of transplant can be up to $200,000. And most often, transplant centers are only reimbursed approximately $65,000 to treat Medicare patients. This creates an access barrier for patients to receive the life-saving treatment they need.

“Lymphoma can come back,” he said. “I visit patients who are in their 70’s and getting transplants. I have seen the bills without insurance – without Medicare coverage, people could not do it.”

Please urge your Members of Congress to co-sponsor this upcoming legislation. Medicare beneficiaries like Mark and the patients he volunteers with need your help: be the voice to save a life.

Feeling thankful during a difficult transplant recovery

Posted November 6th, 2017 by Be The Match and filed in Patient Stories
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It’s not unusual for people to feel thankful to be alive after overcoming a life-threatening illness. But being thankful after a blood or marrow transplant (BMT) can be difficult if you are also coping

David, transplant recipient, with his sister and parents

with negative physical, emotional and financial issues after a transplant.

Read on to get expert advice from a BMT Social Worker on how you and your loved ones can feel more thankful even in difficult times.

The following are excerpts from an interview with Olivia Eusden, MSW, LICSW, BMT Social Worker, Patient Support Center, Be The Match®.

Is thankfulness possible for people who have serious complications or challenges after BMT?

Olivia: Feeling grateful can seem nearly impossible when you have serious complications or challenges after BMT. Thankfulness is possible, it just may look different from before. For protective reasons, we often resist the pain caused by serious life challenges. But, if we surrender to the pain, it’s possible to feel hope that things will get better someday – and if not better, easier.

Recognizing even small feelings of hopefulness can allow you to move out of the victim space and into the “survivor” role. As a survivor, you might find that you take nothing for granted. You also might find that BMT gave you more perspective, brought you closer to others, afforded you more patience, or made you more empathetic. Perhaps you’re more resilient and open to new experiences than you once were. All of these changes you notice about yourself after transplant are reasons for gratitude.

 

What are some ways people can cope with ongoing challenges after BMT?

Olivia: Ongoing challenges after BMT can feel defeating. You might feel isolated in your grief and pain. It’s important to remember that you aren’t going through this alone.

If it feels like others in your support system “don’t get it,” try connecting to a community of people who share your experiences. Find a support group through your transplant center, or register for Be The Match Survivorship Chats.

Support groups are safe spaces to share your fears and frustrations without feeling judged or misunderstood. It can also be a place for you and other patients to share what you’ve learned, suggest creative solutions to common problems, and provide emotional support. Participants in a support group may understand what you’re experiencing in ways that other people might not.

 

What advice do you have for someone struggling to feel thankful after BMT?

Olivia: If you’re struggling to feel thankful after BMT, try to redefine “gratitude.” At another time in your life, showing gratitude might have felt important in situations such as receiving birthday presents, or when someone cooked you a meal.

Now, in more challenging times, appreciation and gratitude happens on an entirely different level. Gratitude might look like thankfulness for breath and vitality, or an appreciation for waking up in the morning and going to bed at night.

Some patients share that instead of wishing their experience with BMT away, they learned to take illness/recovery as an opportunity to slow down, regroup, and listen to what was going on for them personally. In that sense, illness became a tool for personal growth and discovery that may not have occurred otherwise.

 

What advice do you have for someone feeling pressured to express thankfulness after BMT?

Olivia: With Thanksgiving in view, the cultural nod to thankfulness is blatant. If you receive or feel pressure around the holidays to express thankfulness, recognize that you may not be in a place where gratitude feels possible right now.

Gratitude is personal and will vary from person to person based on past experiences, personality and circumstances. Give yourself permission, or ask for permission from a close family member or friend, to feel less-than-grateful at this time.

No matter where you are in your survivorship, if you’re feeling like your thankfulness is lackluster, it can be meaningful to spend just one moment each day listening to what your body is telling you without judgment. Notice something you weren’t aware of before, and explore the possibility of carving out a tiny space for gratitude just for having this daily ritual.

One day, you will be able to find a bit of gratitude and it may make all the difference.

___________________________________________________________

The Be The Match Patient Support Center provides support, information and resources for transplant patients, caregivers and families.

Contact us using the information below to register for a Survivorship Chat, talk to another BMT recipient or caregiver through the Peer Connect program, or get one-on-one telephone counseling support from a licensed clinical social worker. All services are free.

 

Joining a clinical trial after your transplant: How it may help you and others

Posted November 6th, 2017 by Be The Match and filed in Patient Stories
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Before your transplant, you may have been asked to join a clinical trial, also known as a research study. A clinical trial is a way for doctors to gather information about how well a specific treatment might work, such as a new way to prepare patients for a blood or marrow transplant (BMT).

But there are also many research studies you can join after BMT, including studies testing new treatments for BMT complications like graft-versus-host disease (GVHD). In other cases, there are clinical trials testing whether new drugs can help BMT recipients recover faster.

That was the case with Adam, who had a BMT to treat acute myeloid leukemia (AML). He decided to join a clinical trial testing a new drug. “It’s a study to see if this drug taken as a maintenance drug after BMT does anything to help patients do better,” he says.

Clinical trials can help improve outcomes (results) for patients. They can also help doctors make important discoveries that may help future patients. For Adam, both factors were important to him when he was deciding whether or not to join the research study.

“To be honest, I asked what the benefits were for me,” he says. His doctor didn’t know if it would help him. But as Adam thought more about it, he began to think less about the benefit for himself and more about how the research could be useful for others. “The benefits are for future use of the drug, and future patients,” he says. “That was my motivation.”

There can be both risks and benefits to patients joining research studies, says Scott Kerwin, MN, RN, Clinical Trial Patient Education Specialist at Be The Match. “Joining a clinical trial is a very personal choice,” he says.

Most of the newest treatments are only available to patients through clinical trials, according to Scott. They may be very appealing to patients who haven’t gotten better with standard treatments and have few other options, he says.

Another benefit, Scott notes, is that often a patient’s health will be more closely monitored due to the extra visits, procedures, scans and data collection as part of the clinical trial. For Adam, he was concerned about those extra appointments at first. He says, “I’m given enough pills for 1 month. I thought getting back to the clinic each month for pills would be an issue. But it hasn’t been difficult. I’m in the 11th month now.”

Some risks include receiving drugs or other therapies that are unproven or have never been tested. According to Scott, there is always a chance that a new treatment may have dangerous side effects. This was also true for Adam. “I had a lot of fatigue. That made me want to reconsider. They took me off the pills for a couple weeks. I immediately felt better, then went back on,” he says.

Scott recommends that you ask the clinical trial doctors questions before you decide whether to join, such as:

  • What is the new treatment being tested in this trial and why do you think this could benefit me?
  • What are the risks in this trial? Do you know what the side effects may be? Have other people who have been in this trial had any problems?
  • Will I need to stay in the hospital longer? How long will the trial last?
  • Will my insurance cover the costs of the trial? If not, will the clinical trial pay for the costs?

If you think you might want to join a clinical trial, Be The Match can help you find one that is a good fit for you. The Jason Carter Clinical Trials Program was created for patients and their families, to make it easier to find and join clinical trials. The free program provides:

  • One-on-one support from a clinical trials specialist for patients and families. If you’d like help finding a clinical trial, call Scott at 1 (888) 814-8610 or e-mail clinicaltrials@jcctp.org. He can answer your questions and help you find a trial.
  • An easy-to-use web-based search tool to find relevant clinical trials related to blood cancers, blood disorders and BMT complications, like GVHD
  • Educational resources for patients and families to help them learn about clinical trials

If you’re concerned about the cost of traveling to join a clinical trial, talk to your health care team to find out if you qualify for financial assistance from the Drs. Jeffrey and Isabel Chell Clinical Trials Travel Grant. Eligibility information and the application are available at www.jcctp.org.

For his part, Adam says he is glad he decided to join the clinical trial, and that he continued with it despite having some side effects from the drug. He decided to continue, he says, because doing so might help future patients. “Basically, if we want to advance science, then the more the doctors can learn, the better.”

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.


What’s 
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.