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.

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.

“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?”

Saving those who live to save us

Posted August 17th, 2017 by Be The Match and filed in News
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Help patients like Matt

LAPD Officer and searching patient, Matthew

Going to the doctor for something minor, only to learn you have a rare and potentially life-threatening disease is a gut-wrenching shock for anyone.

For first responders, men and women who save lives each day, it’s a world turned upside down. Now, their lives are on the line.

Matthew, a police officer, husband and father of two, knows this feeling all too well. He recently learned that he has aplastic anemia, a rare disease in which his bone marrow does not make enough blood cells for his body. Fewer than 1,000 Americans receive a diagnosis of aplastic anemia each year, and like many of them, Matthew does not know its cause.

What Matthew does know is that a cure is possible. By finding a match on the national registry, he can get the bone marrow transplant he urgently needs to survive. Unfortunately, he is still searching for the perfect match.

Matthew is not the only one in need. Too many police officers, firefighters, EMTs and other first responders across the nation are waiting for the person who can save their lives.

The Register & Respond campaign encourages first responders and their families, friends and communities to join the Be The Match Registry® as potential marrow donors.

The more potential marrow donors on the registry, the more patients Be The Match can help. A marrow transplant can be a cure for blood cancers and other life-threatening diseases, including leukemia, lymphoma and sickle cell anemia. But most patients in need of a transplant will not have a fully matched donor in their families.

Matthew is one of those patients. His family and friends continue to hope that he will find a match, likely in the Filipino community. Dozens have joined the registry since learning of his diagnosis, including Dante, his childhood friend and partner at the police department. “All you want is for your loved one to have a chance,” said Dante.

Do you know a first responder who can support this initiative, either by joining the registry or encouraging their department to join this movement? If so, please visit and share BeTheMatch.org/Register2Respond.

Lynn’s generous gift will help more patients in need

Posted August 4th, 2017 by Be The Match and filed in News
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Lynn Abrahamsen

After a long and successful career in health care, the choice to share her expertise and “give back” comes naturally for Lynn Abrahamsen.

“I have always believed in giving back to the community. That has been something that’s just part of who I am, forever.”

After more than forty years in the health care industry, most recently as the chief executive officer of Hennepin Healthcare System, Inc., Lynn was planning for retirement, knowing that service to her community would make up a big part of her time. She had begun her career fresh out of college as a volunteer director, helping people give their time in the health care field. Toward the end of her career, her duties as a hospital CEO left little time for community service, and so she knew she wanted to re-invigorate that skill set upon retiring. Beyond grandchildren, hiking and spending time at the lake, she wanted to find an organization that she could spend time with, and make a meaningful contribution to.

Choosing Be The Match
Due in large part to her experience in the health care field, Lynn has been drawn to organizations that combine a scientific aspect along with a service to patients. To see, first hand, the research and hard work of the scientific community be actualized for patients is both intellectually stimulating and rewarding for Lynn. This interest, and her prior knowledge of the organization from the health care world, led Lynn to Be The Match.

Although she doesn’t have a close relative or friend who has needed the services of Be The Match, her interest in the science and patient support drew her to our mission. She also finds herself constantly humbled by the number of people who volunteer to be a part of the Be The Match Registry® – joining to see if they could save the life of a stranger.

Reflecting on her decision to make a major gift
As a member of multiple boards, Lynn has experience when it comes to being a board member and supporting an organization with various resources. She believes that when someone accepts a board spot, they need to be prepared to offer their expertise, their judgement, and their resources – which can come in a lot of different ways. To her, it’s clear that Be The Match needs financial contributions to fulfill the mission, and not every patient can afford the high costs of transplant. And so, after being nominated as chair of the NMDP/Be The Match Board of Directors in 2016, Lynn decided to make a generous gift of $25,000 to Be The Match.

“The organization is clearly values-driven, and I’m happy to see my money go to support this mission.”

Lynn’s gift will be benefiting the Drs. Jeffery and Isabell Chell Patient Assistance Fund. We are so very grateful for Lynn’s generous contribution, both of her time and her financial resources, and we are thrilled to be able to further our mission, save more lives and help even more patients and families as they navigate the world of transplant as a result of her gift.

“The more time you spend with the organization, the more you realize that your financial contribution is highly valued, and necessary for the mission.”

Interested in joining Lynn in supporting Be The Match?
Join the registry – you could be the match that someone is searching for.
Give – big or small, financial gifts help continue our mission to help patients and their families.

For more information on major gift opportunities contact Keith Stout, Director of Major and Planned Gifts, at 763-406-8150 or sstout@NMDP.ORG

A story of life-saving generosity

Posted July 28th, 2017 by Be The Match and filed in Donor Stories
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Jox, donor, with his family

Being selfless can mean different things to different people.  Parents are often described as selfless when it comes to loving their children or giving them all they need in order to succeed in life.

But what do you call someone who has given so much of themselves to others?

Jox, with his mother-in-law, after donation (both center)

Jox is a 43 year old teacher, father and husband – and the ultimate altruist. In 2008, he donated blood-forming stem cells to help a searching patient in desperate need of a bone marrow transplant. But his selflessness didn’t stop there. Jox went on to donate a kidney to his mother in law whose kidneys began to fail after her battle with cancer, he cut off 10 inches of his hair for Locks of Love (yes, he had a “sick mullet”), and Jox has donated more than 11 gallons of blood to Memorial Blood Centers. Generosity is at the core of who he is.

Jox joined the Be The Match Registry during his college days, when a nurse brought it up during one of his blood donations.

Jox, donor

Fast forward to 2008 when he got a call that he was a potential match to a searching patient. Jox said he didn’t know a lot about the individual – only their age, gender and diagnosis. But he never once hesitated to commit. He donated bone marrow that same year, and said that the collection hurt less than raking the yard.

He recently reflected on the process; “It’s bigger than just the patient. My donation is extending someone’s life, and that not only effects the life of the patient but it also impacts the lives of their family and friends.”

Jox wants others to be inspired to sign up to the Be The Match Registry. When asked what he would say to other people considering joining the registry, he replied, “Do it yesterday. Put yourself in the situation where you need something and you’re out of options, but there are people who have exactly what you need to live. By donating, the person you are helping gets more time on earth to live.”

To join the registry on Jox’s behalf, please visit https://join.bethematch.org/DonorJox

Adapting to a new family dynamic: When a parent has a transplant

Posted July 6th, 2017 by Be The Match and filed in Patient Stories
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When Mary Clare had her transplant, her only daughter, Twila, was just 4 years old.

Suddenly, the family’s focus of attention and care shifted away from Twila and toward Mary Clare, which resulted in a wide range of changes that touched all 3 members of her family, and their relationships with one another.

My transplant and recovery changed my daughter’s world,” says Mary Clare, “Before diagnosis, Twila was the center of our small family and our days revolved around her school and activities.” But with her cancer diagnosis and transplant, Mary Clare found that she needed to be the center of attention because her successful recovery depended on receiving care from others.

Mary Clare accepted that she needed to rest and receive care and support. She turned to the school, neighbors and community for support. “We moved away from caring for my body and counting cells to nurturing our mental health and relationships,” she says.

She offers this advice to other parents in her situation: Although it is in all moms and dads to protect their children and keep them from harm, shielding them from a serious diagnosis and not talking about treatment is not beneficial. “We chose to be very open and factual about my cancer and transplant,” Mary Clare says.

Mary Clare and her husband found that being honest with their daughter about the science of transplant had an unexpected benefit: Twila developed a fascination with medicine and biology. “My daughter helped me do my physical therapy exercises and learned to assist in changing my IV, “she says, “I found it helpful to give my daughter a role in my care.”

Choosing to be open about her diagnosis and treatment also led Mary Clare and her husband to develop a unique way to help Twila cope with her mom’s situation.

“We used a jar of buttons to talk about feelings and fears,” Mary Clare explains, “Each day, Twila would take a handful of buttons and one by one add them to a jar, naming her fears and concerns one at a time.” Mary Clare says that this activity plus formal play therapy helped Twila manage her anxiety and gave her daughter an opportunity to talk about her own needs.

These steps to manage new family dynamics after transplant worked for Mary Clare. Experts on transplant recovery note that each family is different, and that transplant recipients and their children often need help coping with changes in family relationships.

If you need help coping with family changes after transplant, you’re not alone.

  • Talk to a social worker at your transplant center. They can provide support and help you access local and national resources.
  • Find helpful advice on adjusting to life after transplant on the Be The Match® website.
  • Talk to another parent who’s had a transplant. Our Peer Connect program can connect you with a trained volunteer who’s been there. No matter where you are in the transplant process, transplant recipients like you are available to talk by phone or email, sharing their experience and tips. To request a connection, visit: BeTheMatch.org/peerconnect.
  • Get confidential, one-on-one support from caring experts through the Be The Match® Patient Support Center. We provide support, information and resources for caregivers and families. Call or email us for. We’ll listen and help you find answers. All of our programs and resources are free. Call 1 (888) 999-6743 or email patientinfo@nmdp.org.

How to identify and cope with chronic GVHD of the stomach and intestines

Posted June 30th, 2017 by Be The Match and filed in Patient Stories
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Dominique, transplant recipient (center), with her parents

About 6 months after her transplant, Dominique knew something was wrong when trying to eat caused too much pain.

“I was having a great amount of pain after I ate. I couldn’t drink anything. It hurt too much to swallow,” she says. “So when I told my transplant doctor what was going on, we got a gastrointestinal (GI) doctor involved.”

It was important that Dominique contacted her transplant doctor right away. Getting help from your transplant team as soon as possible means that any treatments they give you will have a better chance to work.

And, involving a GI doctor, who specializes in the stomach and intestines, helped her get the best possible treatment. In Dominique’s case, the GI doctor ordered a colonoscopy and an EGD (a doctor places a flexible tube through the mouth into the stomach and small intestine). Those tests, plus a biopsy (testing a sample of tissue taken from the GI tract) led to a diagnosis of chronic GVHD of the stomach and intestines.

Keeping an eye out for the symptoms

Dominique, now 23 years old, received a transplant for severe aplastic anemia 2 years ago. She offers some advice on how to identify and cope with chronic GVHD of the stomach and intestines.

“Pay attention to your body. If something doesn’t feel right, go get it looked at or checked out,” she says. “Don’t ever feel like you’re making up your symptoms.”

Some of the symptoms Dominique had, in addition to not being able to eat very much, included constipation, feeling sick all the time, and extreme tiredness. “It was just hard because I couldn’t eat. I was getting frustrated. I had to watch what I ate because certain things would irritate it more,” she says.

These symptoms are quite common in people who get chronic GVHD of the stomach and intestines, according to Dr. Alousi from MD Anderson Cancer Center. Other signs to look for include:

  • Bloating
  • Decreased appetite
  • Diarrhea
  • Feeling full after eating very little
  • Nausea or vomiting
  • Stomach pain
  • Weight loss

Dr. Alousi notes that when chronic GVHD of the stomach and intestines is diagnosed, doctors pay close attention to two key symptoms: weight loss and malnutrition. In fact, he says, “weight loss is the main symptom used to measure how severe GVHD of the stomach and intestines is”. He recommends that people “track their weight after transplant and tell their doctor right away about any weight loss.”

Because people can have problems eating after transplant, he also suggests keeping a food diary to help you and your doctors determine the causes of any symptoms or weight changes. You can even use your phone to help. “There are a number of smartphone apps that help you track your diet and keep your nutrition goals.”

Treating chronic GVHD of the GI

To treat her GVHD, Dominique’s doctors prescribed steroids, which is common for this kind of GVHD. The steroid treatments eventually worked for her, but the medicine had some side effects that lowered her quality of life for a time.

“Just being on the steroids I couldn’t be outside, I couldn’t walk,” Dominque says. “If I did have the energy to go out, I could only do it for an hour or two before I was sleeping or too tired to do anything else.” She says, “It put a good pause on my whole life for a while.”

Seeing a dietitian is important to help patients with chronic GVHD of the stomach and intestines improve their quality of life, says Dr. Alousi. “Dietitians can recommend dietary supplements and offer advice to manage symptoms.” And because weight loss and malnutrition is related with lower strength and endurance, Dr. Alousi notes that “patients with these symptoms should also see a physical therapist.”

Dominique says that she’s now feeling better. “I’m not cooped up in my house anymore,” she says. “I’m out doing stuff. I’m doing pretty well emotionally.”

Her message to people who get chronic GVHD of the stomach and intestines is to give the treatment time to work. And most important, she says, if you feel sick, tell your doctor, tell a family member. “Get it looked at because you can never be too cautious.”

For more information on chronic GVHD of the stomach and intestines, view our new fact sheet, developed jointly by Be The Match and the Chronic GVHD Consortium.