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.”

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.

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.

Honored and humbled for a second chance at life

Posted June 13th, 2017 by Be The Match and filed in Patient Stories
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Khalia was just 3 months old when she was diagnosed with sickle cell disease. After 18 long years of dealing with pain, she finally received her cure: a bone marrow transplant from an unrelated donor on the Be The Match Registry®.

Khalia, transplant recipient (right), with her mom

Kimyacta, Khalia’s mom, remembers how ready she and her daughter were once the donor was identified. “We had many meetings to prepare us for this journey and the journey itself was literally life changing!”

Khalia is now pain free and enrolled in college where she’s pursuing her degree to become a Child Life Specialist. She and her mom continue to let others know how important it is to become a donor. “I hope I’m able to save a life just as someone did for my child,” says Kimyacta.

A bone marrow transplant is the only known cure for sickle cell disease. Join the registry and be someone’s cure!

Choosing transplant to cure her sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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On August 1, 2012, Aya got her second chance at life while a patient at Hackensack University Medical Center – she received a bone marrow transplant that cured her of sickle cell disease (SCD).

Aya, transplant recipient

For Aya, her transplant was a welcome relief from a lifetime of dealing with her illness.

“I was born with sickle cell anemia,” she said. “One of the main stresses of the sickle cell disease is pain crisis. I began experiencing this painful ordeal from the age of three.”

After her first pain crisis, managing her symptoms became a familiar part of Aya’s routine.

“The ordeal would start with pain that would escalate,” she said. “When it got to its worst, my mom would have to take me to the hospital.”

Once in the hospital, Aya said her medical team did everything they could to help her manage sickle cell disease.

“Once they admitted me, the process would begin,” she said. “Generally, they would always hydrate me and give pain medication. I would always require oxygen – because of the pain, I could not take deep breaths.”

While Aya’s childhood revolved around managing her sickle cell, as she grew, her family knew she would need a bone marrow transplant.

“The older I got, my stays in the hospital increased and my pain levels would escalate,” she said. “I underwent a bone marrow transplant from an anonymous donor. The procedure was a success and I am now sickle cell free!”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Being a voice for patients with sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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Ines received a bone marrow transplant for sickle cell anemia in 2009 during her senior year of high school.

Ines, transplant recipient

Since her transplant, Ines has been focused on becoming a voice for other patients.

She studied molecular biology and English at the University of Pittsburgh.

Ines has also worked with the Children’s Hospital of Pittsburgh Sickle Cell Team as a research assistant. She has dedicated her life to sickle cell research and awareness – including sharing her story at legislative briefings where she offered her perspective on the treatment of sickle cell disease.

As her future continues to expand post-transplant, Ines said she is forever grateful that her match was found.

“My marrow transplant has made it possible for me to plan for the future instead of having to plan around my illness,” she said.

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Pulling together to overcome sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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In January 2016, Desiree became the first adult at the Kansas City Cancer Center to be treated with a bone marrow transplant as a cure for sickle cell disease.

Desiree, transplant recipient

While Desiree was anxious, the timing of her transplant was critical – if her treatment was delayed, she was facing severe and irreversible lung damage that would have made her transplant even riskier.

Despite her nerves, Desiree said her support system got her through the time in the hospital.

“I don’t like being away from home, so it was hard spending all that time away,” she said. “Thankfully, my mother, sister and grandparents were with me the whole time. They put my needs before their own and made sure I had things from home to comfort me.”

Although her family was with her throughout her transplant journey, Desiree’s recovery was difficult due to a complication from sickle cell.

An earlier sickle cell pain crisis had left her with avascular necrosis in her right hip and barely able to walk. This condition occurs when bone tissue dies from lack of blood supply. Her doctors had her get out of bed and walk each day to regain her strength.

Now that she is healthy, Desiree said she is focused on helping raise awareness for sickle cell disease.

“We could cure others of the disease and find more perfect matches if more minorities were bone marrow donors,” she said. “Now I can go more places and do more things without having to worry about pain or being admitted to the hospital. I’ve missed out on doing and enjoying a lot but, my health is a lot better and continues to improve. I’m very optimistic about my future.”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!