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. 

Lily’s story – Raising awareness about both leukemia and Down Syndrome

Posted October 18th, 2017 by Be The Match and filed in Patient Stories
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When three-year-old Lily LaMartina started limping last summer, her parents thought it might be due to the effects of Down syndrome, which Lily has. But when she stopped walking altogether, they knew something else was going on.

3-year-old Lily

Initially, her doctors thought she had a fracture, and then a possible bone infection. But more testing revealed that she had acute lymphoblastic leukemia (ALL). The disease causes a person’s bone marrow to make too many B-cell lymphoblasts, or immature white blood cells.

As Lily’s parents learned more about their daughter’s leukemia, they also discovered that people with Down syndrome are 20 times more likely to develop ALL.

Thankfully, Lily went into remission after getting chemotherapy, but she is still receiving treatments to hopefully prevent her leukemia from returning.

Lily’s first day of school

Her parents know that there is a good chance her treatments will keep Lily in remission for a long time. But if Lily does relapse, she would need a blood or marrow transplant (BMT).

With this possibility, her parents are committed to helping raise awareness about the importance of joining the Be The Match Registry®.

“When we were in the hospital, we met families with kids who had relapsed from cancer,” says Jay, Lily’s father. “We were all fighting the same battles. It was sad but, comforting knowing we were not alone.”

And while they are raising awareness about Be The Match through word of mouth and a very active Facebook presence, they are also spreading the word that having Down syndrome is a risk factor for developing ALL.

If you would like to join the registry on Lily’s behalf, please click here.

Learn more about ALL and BMT.

Helping your child go back to school after transplant

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Going back to school is an important part of your child’s recovery. Your child may have missed several months or even a year or more of school. To

help ease your child back into the classroom, meet with teachers, school nurses and principals to:

  • Make a plan to catch up on missed school work.
  • Talk about your child’s medicines. Some medicines can make it hard to concentrate or have energy. Plan what to do if issues come up during the school day.
  • Ask about special services that schools are required to provide to K-12 students needing extra help, such as an Individual Education Program (IEP) or a 504 Plan.

If your child is in college, encourage them to meet with the school’s disabilities office or academic services to learn about the resources available.

Your child’s education rights

An IEP is a legal document that explains your child’s needs, the special services the school will provide and how the school will measure your child’s progress. An IEP requires an evaluation by a professional such as a school psychologist to see if your child qualifies for special services.

Some of the special accommodations in an IEP may allow your child to:

  • Have more time to finish assignments or take tests
  • Use a calculator and recording device
  • Complete assignments in a different way. For example, if your child has a hard time writing, ask if they can provide verbal answers.

Depending on your circumstances, something similar to an IEP called a 504 Plan may be best for you and your child. A 504 Plan is a document that explains services your child will receive but it’s not as detailed as an IEP.

Talk to your child’s teacher or school staff to learn more about IEPs and 504 Plans and to schedule an evaluation. Ask your transplant center social worker for help getting any required documents.

To learn more about special education services, go to ed.gov/parents

Tips to help your child adjust

Your child may feel excited, hesitant and self-conscious about going back to school. Classmates may not know what to say and will likely have questions.

You can help your child plan for how to answer questions. Some children and teens like to use a straightforward approach, like, “I was in the hospital and had a transplant to treat a disease. Now the disease is gone. I still wear a mask and take medicine to protect me from germs that could make me sick.” Depending on your child’s age and personality, they may want to answer these questions or have you or a teacher do this.

After being away from school and friends for so long, your child might also feel lonely or isolated. Talk to other parents and arrange for your child to spend time with friends. Let other parents know that your child isn’t too sick to play with other healthy, vaccinated kids.

Resources for you

  • One of the most important things you can do for your family is to take care of yourself. Be The Match Patient Support Center offers free information and support programs for BMT parent caregivers. Contact our BMT patient navigators at patientinfo@nmdp.org or 1 (888) 999-6743.
  • Read or order Living Now Magazine Special Issue: For Parents.
  • LD Online offers resources for parents wanting to learn more about the IEP process. Learn more at org/indepth/iep.
  • For tips on how to address bullying, visit gov or pacer.org/bullying.

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 Join.BeTheMatch.org/WMDD2017

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.