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!

Justin’s journey with sickle cell and transplant

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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Justin had his first sickle cell crisis when he was six months old – for his mother, Kari, this was a day she will never forget.

Justin, transplant recipient

“He wouldn’t stop crying and nothing I did could help him,” she said. “This was the beginning of a lot of heartache, pain and tears, not just from him, but from me too.”

After tests showed Justin’s younger brother was not a match, Kari said the family was at a crossroads.

“My husband and I considered having another baby in hopes that this baby would save Justin’s life,” she said. “I prayed and there was a perfect match.”

Justin had his life-saving transplant in July 2014 – with Kari by his side for every step of the journey.

“I stayed with him every day,” she said. “When he hurt, I hurt. When he could not eat, I could not eat.”

While Justin has had some post-transplant complications including migraines and kidney issues, Kari said he is a healthy and thriving teenager.

“Life is great,” she said. “Justin gets to go to school and socialize. For so long, everything was about Justin and he was the only thing that mattered in our family. Now, life does not revolve around Justin and his sickle cell.”

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

Taking a leap of faith for her cure

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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In 2008, twelve-year-old Amber’s fight against sickle cell disease had gotten to the point where she had suffered a stroke and had many surgeries.

Amber, transplant recipient

For the next two years, she and her family found themselves anxious as they were educated about a bone marrow transplant as a potential treatment option.

“My mom was scared,” Amber said. “It was a leap of faith.”

When doctors told the family that a 10/10 match was found, Amber put her nerves aside and prepared for transplant.

“I was afraid of losing my hair, chemotherapy and losing my friends,” she said. “I didn’t really know who else was going to be my match – if this unrelated donor would not have done it.”

After her transplant, Amber spent a month in the hospital before she went home to recover.

“It was difficult but, well worth it,” she said.

Now, as a healthy college student at George Mason University, Amber offers this advice to sickle cell patients contemplating a bone marrow transplant.

“Don’t give up hope,” she said. “You feel like you are going to be in pain forever but, just stay hopeful. You are already going to be in pain forever so, just hang in there for the transplant.”

While Amber has not met her donor, she said her entire family is looking forward to thanking the person who saved her life.

“I wouldn’t even be able to say anything – I would just cry,” Amber said. “I would tell them how thankful and how blessed myself and my family is because of this. This is not just about the patient who has sickle cell, this is about the family as well. I am so blessed and so thankful.”

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

Is complementary or alternative medicine right for you?

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You may have heard about complementary or alternative medicine (CAM) and wondered if it’s right for you. The answer? It depends.

These treatments can take a lot of different forms, and while some are generally safe, others can be dangerous. The risks can be higher when you have a weakened immune system, graft-versus-host disease (GVHD) or are taking prescription medicines. Before you try anything new, talk to your doctor. They can help you decide if it’s safe or not.

What is CAM?

While complementary and alternative medicines are usually used together, they’re not exactly the same. Complementary medicine is used along with standard care, while alternative medicine is used instead of standard care. Standard care is the therapy and medicines that your transplant team gives you.

When used along with your doctor’s recommended care and advice, some people say their complementary care helps them manage their symptoms, lower stress and improve their sense of well-being. Other people have reported no benefit.

Is CAM safe for me?

Penny, transplant recipient, practicing yoga

Generally safe CAM therapies include those that help with relaxation, well-being and movement such as:

  • Meditation and prayer
  • Guided imagery
  • Massage
  • Art and music therapy
  • Yoga

Potentially dangerous CAM include those that go against your health care team’s advice, such as:

  • Quitting or substituting a doctor-recommended medicine or treatment
  • Taking certain vitamins, supplements or herbs, that may interfere with your prescription medicines

Other CAM therapies may not be against your doctor’s advice, but you should still be careful. Talk with your doctor first if you’re considering:

  • Special diets. Certain foods could be harmful. For example, even something that seems harmless, like grapefruit or grapefruit juice, can actually cause problems with some medicines.
  • Acupuncture. When not performed in the right way, acupuncture could hurt you and cause infections and bleeding.

Questions to ask your doctor
Here are some questions to ask your doctor if you’re thinking about using CAM:

  • What benefit could I expect?
  • What are the risks?
  • Do the known benefits outweigh the risks?
  • Are there any potential side effects?
  • How might it affect my current treatment?

Helpful resources