Transplant recipient, teacher and now ambassador advocate

Posted December 10th, 2018 by Be The Match and filed in News
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When Elle Crofton was 25-years-old, she got news that she never expected to hear.

Her doctors diagnosed her with myelodysplastic syndrome (MDS), a blood cancer that causes bone marrow failure and can progress to acute myeloid leukemia.

For her age and gender, the illness was shocking, and rare.

“I was diagnosed with a blood cancer that is mostly diagnosed in men over the age of 65,” she said. “It’s not something that you think about every day, a 25-year-old female getting a blood cancer, but it happened to me.”

Initially, Elle was able to treat her MDS with medication. When that stopped working, her medical team told her that she would need a bone marrow transplant.

Fortunately, a matching donor was found and on May 14, 2015, Elle had her life-saving bone marrow transplant at MD Anderson Cancer Center in Houston, one week before her 26th birthday.

“When I found out I had a match, I was really excited,” she said. “It was overwhelming because I don’t think you really understand all that happens and goes into it. Realizing that it was going to happen was an amazing feeling.”

Today, over three years post-transplant, Elle is back to her passion – being an elementary school teacher.

“I am back in society, back teaching doing something I love, and to be able to do that for others is what lawmakers should look at,” she said. “To have more lives saved is just so crucial – it’s such an easy thing for people to do, to donate bone marrow that I don’t know why you wouldn’t support it.”

As she continues post-transplant life, Elle said she is eager to give back and help patients-in-need, like she once was.

“Being an advocate for Be The Match means that I’m supporting a program that helped save my life,” she said. “They gave me life and I’m hoping that I can just help others.”

Advocacy Spotlight – Bob Panza

Posted November 19th, 2018 by Be The Match and filed in News
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Bob, a Be The Match Advocate

Tell us about yourself: I have been married to my lovely wife, Ann for almost 39 years. We are the very proud parents of two kids – Melissa and Nick. Both are married and we have been blessed with four beautiful grandchildren. I served as a municipal police department captain in Southern California for 30 years. I retired almost 11 years ago and am thoroughly enjoying life!

How did you connect with us? About 14 years ago, a fellow police officer’s teenage daughter, Brandii, was diagnosed with cancer. She and my daughter were close in age. Melissa and I worked with my department to organize a donor drive where we had close to 300 people join the Registry.

Unfortunately, Brandii never found a match and she passed away in 2005. At the time, I was attending a training course at the FBI Academy. Brandii inspired me to organize a donor drive in her honor and we had about 250 more people join the registry.

Tell us about being a volunteer courier: In 2006, the NMDP formed a volunteer courier program. Both Melissa and I attended the training. I have completed about 300 domestic courier trips and just returned from my 60th international trip. That is in excess of 1.5 million domestic and international miles in the air. My longest trip was from Western Australia to the East Coast of the United States, which was well over 23,00 miles in the air.

Modern long-haul airplanes carry over 300 passengers. When on those planes, I often think about the patients on the receiving end of one of those 300+ courier trips I’ve been privileged to complete. I visualize them sitting on the plane with me – men, women, children and infants. I am awestruck and humbled to think about them and their families. I am extremely grateful to be entrusted to play a small role in those people’s lives. Containing my enthusiasm and passion for what I do, is the only hard part.

Tell us about being an advocate: Initially, I was a bit nervous simply because I wanted to be the best representative of the NMDP/Be The Match as I possibly could, so I put a lot of pressure on myself at first. But then I took a deep breath and let it sink in that I was advocating for a great cause which I believed in very deeply. Once I let that sink in and envelope me, I merely rehearsed what we had been taught back in September and my apprehension turned into sheer exhilaration, excitement and anticipation.

What has your work with Lawmakers been like? So far, there is one lawmaker who has committed to co-sponsoring HR4215. I am continuing to reach out to the other three lawmakers and their staff members to keep HR4215 on their radar. I believe my face to face meetings were critical in helping open the door to communication and personal connection, along with continued email contact since those meetings.

What advice do you have for those wanting to be advocates? The best advice I can offer when advocating for the NMDP/Be The Match, is simple and is also the same best advice in how to live one’s life; BE YOURSELF. We are each endowed with our own unique personalities, painful experiences, fears and emotions. We all deeply believe in the mission we are jointly trying to achieve, so use your personal experiences regardless of their outcomes, to help get our message out to those empowered to act on them. In that way, those experiences and all those individuals we know and love who shared those experiences with us, can join in helping get that message out. In my situation, I am able to keep Brandii’s legacy alive and take comfort in knowing that her life has touched countless people whom she’ll never know.

Transplant recipient advocates for access to fertility preservation

Posted November 14th, 2018 by Be The Match and filed in News
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In May 2010, Katherine Frega was a high school junior who had spent the past year dealing with a serious illness with no explanation for her symptoms.

When her doctors were finally able to give Katherine and her family a diagnosis, it was not good news. She had Stage 2B Hodgkin’s Lymphoma.

While Katherine said her immediate thoughts were around chemotherapy and what she would need to survive, her father asked one question that has forever impacted her future in a way that the then 17-year-old had not considered.

“The initial diagnosis meeting was such a whirlwind,” she said. “Suddenly, my dad looked at my doctor and asked, ‘How is this going to affect her ability to have children?”’

Although Katherine said fertility preservation was “not on her radar” originally, she understood the stark reality of why she needed to consider it once her first round of chemotherapy was complete and her doctors recommended a blood stem cell transplant.

“We sat down with my BMT doctors,” said Katherine. “And they said, ‘The drugs we have given you already will cause you to go into ovarian failure – if you have not yet. It is just a matter of when.’ That is when we said ok – let’s do this if we have a chance.”

When her doctors told Katherine that fertility preservation was not covered under her mother’s health insurance, the medical team then put her in-touch with the Livestrong Foundation – which paid for some of Katherine’s egg retrieval cost.

“It was still a really big financial barrier for my family,” she said. “I didn’t even know if I was going to make it through the bone marrow transplant.”

With her sister as her donor, Katherine had her first transplant in January 2012. It did not engraft and three months later she had a second transplant. After overcoming graft versus host disease and recovery from her transplant, Katherine is now focused on her future and in her third-year of medical school.

“I was determined to go to college,” she said. “I got out of the hospital and started school two days later at Syracuse University.”

Having her medical team near college made it possible for Katherine’s quick transition into student life and since then, she has never looked back. Now in her third year of medical school, Katherine said she is embracing all that life has to offer.

“I scrubbed in yesterday and delivered two babies,” she said. “To think that this is an option for me, in my career and potentially in being a mother, is really special.”

While Katherine was able to get some financial assistance with her egg retrieval, she does have to pay to an annual fee for cryopreservation. Despite the fee, Katherine said that she is forever grateful her father – who sadly passed away unexpectedly in 2014 – had the realization to ensure her future as a mother.

“I am so happy that when my 19-year-old self could not think about it, my father had the foresight to make this an option for me,” she said. “It gives me a sense of relief when I do want to start a family, and know that he really wanted that for me is a big deal.”

Governor Dayton proclaims Sept. 21 Jason Carter Clinical Trials Program Day

Posted September 24th, 2018 by Be The Match and filed in News, Patient Stories
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To celebrate the legacy of Jason Carter, and his drive to make a difference, Governor Mark Dayton has proclaimed Sept. 21, 2018 as Jason Carter Clinical Trials Program Day.

After living with leukemia for more than four years, and participating in two clinical trials, Jason Carter passed away in May 2016 at the age of 28. Jason loved fishing, skiing the mountains of Montana, perfecting recipes and taking photos of his outdoor adventures.

To continue Jason’s legacy by helping to get more people to participate in clinical trials, the Carter family created the Jason Carter Clinical Trials Program with a generous donation to the Be The Match Foundation®, the fundraising organization that supports Be The Match®.

The program has many free and confidential services for patients and their families, including: One-on-one nurse support with assistance in finding clinical trials; an easy-to-use online clinical trial search tool; and easy-to-understand clinical trial descriptions.

Please join us in celebrating Jason Carter’s life-saving legacy.

My Bone Marrow Donation Journey

Posted September 17th, 2018 by Be The Match and filed in News
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Throughout my entire life, I’ve been able to enjoy the simple things in life. I love traveling, going to family cook outs, spending my days at the beach and singing along to Beyoncé. I always appreciated my family and the values they instilled in me from a young age. One of those values was a commitment to help other people. In 2013, while I was working for a news station, I was fortunate enough to do a story on Be The Match® and it inspired me to join the Be The Math Registry®.  I thought, ‘how much more could I show that I cared for someone, than by donating a part of me in the hopes it would help them live a longer, healthier life?’

Aja-Reigh with her recipient, Justin

A year later, I was called to be a donor for a kid with sickle cell disease. I didn’t know it at the time, but the recipient was 13 year old Justin Nunez. He was 6 months old when he experienced his first sickle cell pain crisis. He had to get used to the fatigue, headaches, dizziness and severe pain of sickle cell disease while trying to be a normal kid. As he grew older, the disease worsened and his only hope for a cure was a blood stem cell transplant (bone marrow transplant). With no matches in his family, the Nunez family turned to Be The Match to begin the search for an unrelated donor, and they found me.

With his ancestry being Guatemalan and Jamaican, Justin had to beat the odds in order to find a match. With only 19% (19 out of 100 people) on the registry identifying as racially and ethnically diverse, I’m so grateful I was able to be his match to cure his disease

Imagine my excitement when I was first called to be Justin’s donor! I immediately called my family, overjoyed at the life-saving opportunity that was presented to me. They shared in my excitement, but worried that my donation was going to hurt. I was committed to donating to this kid in need, and reminded myself that any pain I felt would only be temporary compared to what he was feeling living with sickle cell disease.

In the weeks leading to my donation, I attended appointments and information sessions to learn all about the donation process and why it is so necessary to get more ethnically diverse people on the registry. I was excited and confident in my decision. Anytime they asked if I was okay, and ready to process, my answer was always, ‘Yes, let’s do this. I’m ready!’

I donated my blood stem cells to Justin in July 2014. He’s back in school, enjoying his teenage years and his life no longer revolves around sickle cell disease.

I am incredibly grateful for the opportunity to save someone’s life. Sickle cell disease affects 1 out of every 365 African-Americans, and we only have a 23% chance of finding a match on the registry so it’s important for more people to join the registry to provide these life-saving cures. Looking back, my advice for potential donors is: 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?

Celebrate World Marrow Donor Day, Sept. 15!

Posted September 10th, 2018 by Be The Match and filed in News
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Thank you to all the blood stem cell donors and registry members who are saving lives around the world!

Did you know saving lives through blood stem cell donor is a truly international mission?  Nearly 50% of all blood stem cell transplants use international donations!

Be The Match is one of 100 organizations from 57 countries that celebrate World Marrow Donor Day to thank everyone who has donated blood stem cell donors, via marrow or PBSC, as well as registry members who are standing ready to donate to any patient in need. It is also a day to raise awareness of the need for more people to sign up—especially young, ethnically diverse donors who help increase genetic diversity on the registry.

Patients and their families are tremendously grateful to every one of the more than 32 million people across the globe who are offering hope of a cure.

Help celebrate the 1.2 million transplantations worldwide by inviting friends and family to join the registry to save a life.

  • Share Mike and Adriana’s heart-warming story featuring a donor and recipient meeting for the first time.
  • Encourage friends and family to join our life-saving community by sharing Join.BeTheMatch.org/WMDD2018
  • Thank donors and registry members on social media by saving and sharing the Thank You graphic. Tag @BeTheMatch in your post and use hashtags #ThankYouDonor, #WMDD2018 and #BeTheMatch

 

Understanding CAR T Cell Therapy

Posted September 5th, 2018 by Be The Match and filed in News
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CAR T cells are a new way to treat some cancers using gene therapy. This treatment helps your own immune system find and destroy cancer cells. The treatments using CAR T cells are primarily for people who have had other standard treatments, like chemo or transplant, in which the treatments haven’t worked and the disease has relapsed or is refractory.

In our new, easy-to-understand video, Linda J. Burns, M.D., Vice President, Health Services Research, and Scott Kerwin, R.N., M.N., C.C.R.C., C.C.R.N., Clinical Trial Patient Education Specialist, explain:

  • What CAR T cell therapy is and how it works
  • How CAR T therapies are made
  • Who it may help
  • What the treatment is like
  • Potential risks and benefits
  • Questions for patients to ask their doctor
  • Costs of the therapy
  • Centers that offer CAR T therapy

Watch this video to learn what CAR T cell therapy is, who it may be for, and the risk and benefits of the treatment.

Getting active after transplant: Tips for a gradual return to healthy exercise habits

Posted September 5th, 2018 by Be The Match and filed in News
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You may feel ready to get back to some of the healthy habits you had before transplant, or start some new ones. Just like before your treatment, being physically active is one of the keys to feeling better and staying healthy.

Find a routine that keeps you motivated

Regular physical activity can help you feel better. Many transplant recipients say they have less pain, more energy and sleep better when they make physical activity part of their day.

“My recovery went a lot better due to exercise. Start as soon as you can and do whatever you can because there’s going to be a tremendous long-term benefit from it,” says David, a transplant recipient.

Talk to your doctor first.

When you feel ready to start exercising again, talk to your doctor first and follow their recommendations. It’s best to start slow and gradually increase your activity level. For example, start with a small goal like walking down the street and back. Then, increase your distance as you feel able. Continue to increase your distance until you are able to walk at least 30 minutes a day.

“Once I started walking, I just felt better—physically, emotionally and mentally. It made a huge difference,” says Kay, a transplant recipient.

If walking isn’t enjoyable for you, try another aerobic activity, like riding a stationary bike, climbing stairs or dancing. Again, start with a small goal and add new goals as you are able. Once you’ve built up your strength, try to do aerobic activity for at least 30 minutes a day.

Don’t forget to do strength training and stretching, too. Start slowly. Even lifting soup cans at first can help increase your bone density and muscle strength and lower fatigue (tiredness). Gentle stretching and activities like yoga can help you increase your flexibility, and are good for your joints.

As you get stronger, you can slowly increase the intensity of your aerobic activity and strength training.

Is complementary or alternative medicine right for you?

During your treatment and recovery, you may have heard about complementary or alternative medicine (sometimes called CAM) and wondered if it is right for you as part of routine health lifestyle. The answer? It depends.

CAM practices that are generally safe include those that promote relaxation, well-being and movement such as:

  • Meditation and prayer
  • Guided imagery
  • Massage
  • Art and music therapy
  • Yoga
  • Tai chi
  • Reiki

No matter which CAM practices you are considering, do your research and talk with your doctor before you start.

Not sure where to begin?

If you’d like some help getting started on an exercise routine, ask your doctor for a referral to physical therapy. Physical therapists can help you make an exercise program that’s safe for you and meets your needs. Check with your health insurance company because physical therapy costs might be covered by your policy.

No matter how you get started, find a routine that you enjoy and one that keeps you motivated.

Celebrate progress

During early recovery, your focus is likely on what is right in front of you, like getting to appointments, taking medicines, eating and resting. You may have had to go back to the hospital. You may feel discouraged.

Progress can sometimes be hard to see during recovery. Reflect on some of the milestones as you regain energy and strength for physical activity. Ask yourself, “What is one thing I did today that I could not do a month ago?”

For more information and support

 

 

 

Support for siblings after your child’s blood or marrow transplant

Posted September 5th, 2018 by Be The Match and filed in News
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Transplant and recovery is an emotional and challenging time for families. Each family member will cope differently as your child recovers. Your child’s siblings may experience stress in different ways, too. Here are some of the signs of stress to watch for in your other children and ways to help them cope in healthy ways:

 Signs of stress for children may include:

  • Changes in eating habits
  • Trouble sleeping
  • Drop in school performance
  • Headaches
  • Worry
  • Irritable

If you notice these signs in your child, talk to your child’s health care team. They can share resources to help you and your family.

Some things you can do to help your children cope with a sibling’s transplant and recovery include:

1. Keep a routine

Children find comfort in routines. Whenever possible, help your children continue their normal activities.

  • Prioritize family time. Make time to check-in as a family each day.
  • Keep a few family activities, such as breakfast or dinner, at the same time every day
  • Go over your family’s calendar together every few days or so, and be sure everyone knows what to expect and when.
  • Arrange for your children to participate in school activities and spend time with friends on a routine basis. For example, if your focus needs to be on your child’s transplant recovery, ask other family members and friends for help so your other children can continue their scheduled activities.

Tools like ShareTheCare.org and LotsaHelpingHands.com can help you organize help from family and friends.

2. Help your children express their feelings

It’s normal for children to have many different feelings when their brother or sister is sick and recovering from transplant. Sometimes they may feel isolated and find it hard to talk about their feelings. It’s common for siblings of children undergoing transplant to feel:

  • Lonely
  • Sad
  • Anxious
  • Jealous
  • Guilty
  • Afraid

You can help your children identify and express their feelings, and manage their emotions in a healthy way. Depending upon their age and developmental stage, here are some ways you can help your children identify their feelings and talk about them:

  • Use dolls or action figures to have your children act out their feelings.
  • Listen and provide reassurance.
  • Have your children draw pictures of how they feel. Then, ask them to talk about what they drew.
  • Ask your children to finish sentences, like “I am worried about ___________.” or “You can help me feel better by ___________.”
  • Encourage your children to ask questions. Give as much information as they are able to understand.
  • Give your children a journal to write down their thoughts and experiences.
  • It’s okay to say, “This is new for me too,” and that you’ll work together to figure it out.
  • Talk openly and honestly about difficult topics.

Not all of the feelings your children will have will be negative. The transplant experience can lead to positive experiences for siblings, too.  Your children might become more sensitive to others’ feelings or have more coping skills

3. Show your children your support for them

You can support siblings by showing and telling them they are loved and you are there for them, too. Some ways to do this include:

  • Take time each day to talk about their day, activities and friends.
  • Celebrate their accomplishments.
  • Ask a family member or friend to spend quality time with your children when you can’t.
  • Encourage family and friends to include all of your children in their visits and well-wishes.
  • Tell each child the special things you love about them.

Your transplant center’s social worker or child-life specialist can also provide ideas and support.

Resources for you and your family

 

 

 

Super Star Advcocate: Caron Myers

Posted August 6th, 2018 by Be The Match and filed in News
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Back in 1983, Caron’s sweet, 5-year-old daughter Brandy was diagnosed with cancer. The previous year, doctors thought her illness was just juvenile rheumatoid arthritis. Months later, they found out how wrong they were. She was diagnosed with Stage 4 lymphoblastic lymphoma, a sister disease to leukemia. For the next three years, she was treated with a series of intensive chemotherapy. After a tough fight, she went into remission and was stable for about a year.

Just as the following March winds began to blow, so did a relapse of the disease. At that point, she relapsed with Stage 4 Acute Lymphocytic Leukemia (ALL), and doctors said her only hope would be blood stem cell transplant. The year was 1986.

There are two factors in Brandy and Caron’s story that played into the development of the C.W. Bill Young Transplantation Program and the start to NMDP/Be The Match. Brandy’s primary pediatric oncologist was Dr. Jerry Barbosa. But, a new doctor had joined forces with Brandy’s hospital – All Children’s Hospital in St. Petersburg, Florida. His name was Dr. Robert Goode, and he was helping develop a new bone marrow wing for the oncology unit. He was known to his fellow doctors as “the father of bone marrow transplantation.”

Caron’s father, on the other hand, was involved in politics, and her family had close relationships with many political figures. During Brandy’s fight, she met President Ronald Reagan, at the behest of Senator Paula Hawkins, then Vice President George H.W. Bush and Second Lady Barbara Bush. Her family also had a close relationship with Congressman C.W. Bill Young who would often visit the hospital and regularly check on Brandy’s condition.

Congressman Young wanted to help not only Caron and Brandy, but others dealing with the same kind of pain from life-threatening blood cancers and blood diseases. Caron asked Congressman Young, “With the advent of computers and blood banks, why can’t [the doctors] merge things together to create some sort of clearing house, so it would help everyone?” He went to work on finding a solution, which would ultimately result in the C.W. Bill Young Cell Transplantation Program operated by the National Marrow Donor Program/Be The Match.

Unfortunately, at the time, the registry was in the very early stages of development. Brandy’s only option was to receive an autologous blood stem cell transplant, meaning she would be her own donor. Brandy had to travel to the University of Minnesota where she received the transplant, which was her only chance at survival. Sadly, on Mother’s Day 1987, Brandy died.

Congressman Young was one of the first phone calls Caron received, as well as condolences from the Reagans, the Bush family and many other members of Congress who had supported the legislation. In the Congressman’s address to the House floor, he mentioned Brandy—she inspired legislation that helped others find a match on the program’s registry and helped cure life-threatening diseases like her own.

Caron continues to use Brandy’s story as an opportunity to persuade policymakers to help others. She has been fearless in her advocacy. As Caron says, “They put their pants on the same way you and I do. Many of them come from humble beginnings. Everyone has a story, and politicians are no different.”