A little more than two years ago, my boyfriend, Zac, joined the Be The Match Registry® in hopes to be a match for a family member who was in need of a marrow transplant. Unfortunately, he was not a match, but luckily that didn’t end his journey with Be The Match.
Several months later, Zac got a call from Be The Match explaining that he was a match for a patient in need of a marrow transplant. The patient had a rare blood disorder called myelodysplastic syndromes (MDS).
Without a single doubt, Zac said yes and started his amazing journey to becoming a marrow donor. However, Zac’s journey was far from normal. He decided not to tell a soul about this amazing and selfless act of agreeing to be a patient’s marrow donor. He kept it a secret for months; neither his parents, his brother, nor I (his girlfriend) knew. Months passed by, still, no one knew.
Prior to the start of his journey, Zac moved to Florida temporarily for work from North Carolina, where his family and I reside. I received a call from him one day a few months after his move and after his discovery of being a match, and he explained that he had a surprise for me. He was flying me down to Florida for five days so we could spend some time together. He told me he had so much planned for us and tons of surprises. Automatically, I thought we were heading out to the West Coast of Florida to fish (this was our favorite activity to do together).
The trip came along quickly. Upon my arrival in Florida and meeting up with Zac, we had lunch together. At lunch, he asked me if I wanted to know what my surprises were for the weekend — of course I said yes! He then proceeded to tell me that he was donating marrow the next day and that we were leaving in thirty minutes to go to the hospital to complete the necessary blood work.
“Wow,” I thought. I was in complete shock. He went on to tell me what was going to happen the next day, why I was there and our itinerary for the next 72 hours. Nerves were shaken, questions were raised and prayers were prayed for a smooth recovery.
His surgery followed and everything went as planned. Zac did great. He was an ideal patient in the doctor’s eyes, and an amazing man of mine. Soon after surgery, Zac called both of his parents to tell them what he had done and that he was doing well. The shock continued, tears fell, everlasting love was given and hope for a man with a life-threatening disease was gained.
I was so honored to be part of this special day in Zac’s life. It was not only a life-changing day for him, but a life-changing day for me. We both knew, as a couple, that this would change our lives indefinitely. His marrow donation date will forever be engraved in our hearts as the day Zac saved a man’s life that he had never met. He received notification in the following months that the patient he donated to was doing great. We hope to be able to meet his match in the following year. How amazing is that?
Since Zac’s donation, our mission has been to get involved with Be The Match and encourage others to join the registry so they can experience the satisfaction that Zac had after donating. I even got involved as a Be The Match Community Engagement Intern in the Charlotte area.
Zac and I are both extremely thankful to have had such an amazing organization like Be The Match, to organize, support and captivate us. Helping blood cancer patients find hope is beyond worthwhile. Our lives are forever changed.
When Peter was diagnosed with myelofibriosis in January 2014, he and his family instantly turned to Be The Match.
“That fateful day … doctors told me there was no cure other than a bone marrow transplant,” he said. “Be The Match almost immediately found a perfect match, which was a big relief.”
With the support of his wife, Jane, and daughters, Katie and Jen, Peter had his transplant in August 2014.
“My wife is a saint,” he said. “She drove me to every doctor’s appointment, visited me in the hospital daily and made sure our house was prepared for a transplant patient. It would have been extremely difficult to go through this without her.”
After five weeks in the hospital, Peter went home to continue his recovery. Several months after his return, the family got the exciting news that Katie was a match for patient in need.
“I signed up to join the registry after my dad was diagnosed,” she said. “I felt very lucky to be asked to give, especially so soon after my dad’s transplant.”
As Katie neared her December 2015 donation, she said the support from her fiancé, Erik, her family and friends helped her prepare.
“My parents were so excited and proud that I was able to give another family the same gift of life that our family received just a year before,” she said. “Knowing how scared I am of needles, my fiancé sat with me and held my hand for each of the filgrastim injections.”
Despite some nerves, Katie said she felt strongly about being a committed donor.
“I never had second thoughts,” she said. “I kept thinking about my dad’s donor. If they would have backed out, my dad wouldn’t be here today and there was no way I would put another family in that position.”
On the day of her donation, Katie said she had her ultimate inspiration by her side – her father.
“Be The Match sent my dad out to spend the day with me,” she said. “”Compared to everything a transplant patient goes through, the discomfort of the donation process is very minimal and it is so worth it to save a life.”
With Peter back to a reduced work schedule as he continues recovery and Katie donating to help a patient in need, the family said their lives are forever changed from experiencing both the patient and donor sides of marrow transplant.
“I appreciate modern medicine even more than ever,” Peter said. “And the people who dedicate their lives to it.”
For Katie, first being the daughter of a transplant recipient and then a donor herself has left her inspired to continue supporting Be The Match.
“Joining the registry is so easy – there is really no reason not to do it,” Katie said. “There is the chance that you will be lucky enough to be a lifesaver, and that is the best gift you could ever give anyone.”
To join the Registry as a potential marrow donor visit: join.bethematch.org
Just weeks into her freshman year of college, Becky Dame woke up with terrible stomach and back pains. A few days later, she received a life-changing diagnosis; she had leukemia. At the time, bone marrow transplants were a relatively new form of treatment, but Becky’s doctors recommended it as her best chance of survival. In 1992, she received a marrow transplant from her sister at St. Jude Hospital in Memphis, Tenn. Upon Becky’s return to campus, she changed her major from music to nursing, inspired to help others going through similar experiences.
Over the next 18 years, Becky relapsed five different times—overcoming each relapse with support from her husband, family and church. In 2010, her doctors decided it was time for a different approach and turned to Be The Match® to find an unrelated donor match. By this time, Becky was a bone marrow transplant (BMT) nurse at Moffitt Cancer Center in Tampa, Florida. She was admitted as a patient into her very own unit and received her life-saving transplant a few months later.
Now, Becky has rejoined her team as a BMT coordinator and is supporting patients through their own transplant journeys. Additionally, Becky joined us in our advocacy efforts, advocating on Capitol Hill on behalf of patients.
Each year, the Congress appropriates dollars for the C.W. Bill Young Cell Transplantation Program (Program), which Be The Match operates through a contract with the federal government, as well as for the National Cord Blood Inventory (NCBI). These dollars help increase the number of marrow donors and cord blood units on the national Be The Match Registry.
During the last five years, funding for the Program and NCBI has remained relatively flat. We are asking the Congress to modestly increase funding for 2017 to help improve the diversity of the registry. On Feb. 9, the President of the United States will release his budget, which serves as a blueprint for the Congress. The President can advise, but only the Congress has the authority to appropriate federal dollars, which the President approves by signing the appropriation bills into law.
When the President’s budget is released, we will need your help to encourage the Congress to maintain its commitment to individuals who need a life-saving bone marrow or cord blood transplant by increasing the funding levels.
Marrow and cord blood transplants can be used to successfully treat more than 70 diseases. Often transplant is a patient’s only hope for a cure. While commercial insurance covers transplant for most, if not all, diseases, the Medicare program does not. This means that if someone develops a disease or condition when 65 or older, or on long-term or permanent disability, he or she may not have access to a life-saving transplant.
Be The Match, in partnership with the American Society for Blood and Marrow Transplant (ASBMT), is working closely with the Centers for Medicare and Medicaid Services (CMS) to provide Medicare beneficiaries with access to a life-saving transplant for more diseases. Currently, Medicare only covers transplants for the following diseases:
- Leukemia, leukemia in remission or aplastic anemia when it is reasonable and necessary
- Severe combined immunodeficiency disease (SCID) and Wiskott-Aldrich syndrome
- Myelodysplastic Syndromes (MDS), if it meets criteria for Coverage with Evidence Determination (CED), which requires data collection of a Medicare-approved, prospective clinical study.
We have made important progress to expand this coverage in recent months. As a result of our efforts, CMS is considering coverage for three new diseases:
- Sickle Cell Disease
- Multiple Myeloma
Similar to MDS, coverage for these diseases may also require a Medicare-approved, prospective clinical trial. This is called CED. CED would allow individuals with sickle cell disease, myelofibrosis and multiple myeloma to receive a transplant while CMS gathers data on the outcome of transplant for these diseases. Once enough data is gathered to show transplant effectively treats these diseases, CMS may establish a National Coverage Determination (NCD). This means Medicare would now cover transplant for these three diseases without requiring enrollment in a clinical trial.
CMS is currently considering how to design a study for these three diseases. Be The Match and ASBMT are working closely with CMS to make sure the study requirements do not create unnecessary barriers for patients.
Establishing clear coverage rules is important to protect access to life-saving transplants. Medicare is silent on whether it will cover marrow or cord blood transplant for all other diseases that are not specifically listed as covered. Because Medicare will not tell hospitals upfront if it will cover transplants for most diseases, hospitals may not be able to move forward with the transplant due to the uncertainty. This creates a barrier for patients who need a marrow transplant to cure their disease.
Be The Match and ASBMT will continue efforts to expand access to transplant for the Medicare population. We will need your help as well, so please stay tuned for further developments.
Shortly after her transplant for myelodysplastic syndrome (MDS) in 2014, Cindy noticed that her lips and mouth were getting dry. Soon after that, she started noticing ridges in her mouth. Both were classic signs of chronic graft-versus-host disease (GVHD) of the mouth.
Symptoms of GVHD of the mouth
“I have bumps on both sides of my mouth and the roof of my mouth, but those don’t bother me too much. My mouth and lips are so dry that eating can be difficult at times,” says Cindy.
For example, Cindy can’t eat meat, bread or thick pasta because she has trouble swallowing it.
“I don’t have enough saliva, so I can’t break down the food enough. My lips are also very dry and get tight and chapped. That can be painful,” she adds.
“There are many symptoms of chronic GVHD of the mouth, and those that Cindy experienced are quite common,” says Nathaniel S. Treister, DMD, DMSc, Chief of the Divisions of Oral Medicine and Dentistry at Brigham and Women’s Hospital and Dana-Farber Cancer Institute in Boston, Mass.
According to Dr. Treister, other common symptoms include:
- White lacy changes and patches, redness, pain and sores inside the mouth
- Sensitivity to acidic and spicy foods and drinks, or foods and drinks you can usually tolerate
- Sensitivity to toothpaste
- Difficulty opening the mouth
Diagnosing GVHD of the mouth
Chronic GVHD of the mouth happens when the donor’s cells attack the salivary (spit) glands and soft tissues in your mouth. Saliva helps you swallow your food and helps protect your teeth from decay. If the glands are destroyed or don’t work, you may get more cavities. When your soft tissues become inflamed, it can make normal activities, like eating, drinking and brushing your teeth, painful and challenging.
If you notice changes in your lips or mouth, let your transplant team or dentist know right away.
“GVHD of the mouth is one of the most common types of chronic GVHD. And, the mouth is often one of the first body systems impacted by GVHD. Treatments usually work better and can be less intense the earlier we start them,” Dr. Treister says.
Usually, your transplant team or dentist can make a diagnosis just by looking at the inside of your mouth.
Your transplant team may be able to manage your condition, however, having a dentist as part of your team is important. This is because GVHD of the mouth increases your risk for tooth decay.
Management and treatment
There are many options available to manage and treat GVHD of the mouth. Cindy found that sucking on sugar-free hard candy and drinking plenty of fluids helps her.
“I’m constantly sucking on candy, but I try to get sugar-free candy because I don’t want to get cavities. I always carry water with me, too,” she says.
To help with her dry lips, she applies moisturizers many times each day. “I’m picking dry skin from my lips all the time, so I do whatever I can to keep them moist,” Cindy shares.
Dr. Treister says many of his patients have found that chewing sugar-free gum can help stimulate the flow of saliva. Taking smaller bites and drinking fluids while eating can help if you have trouble swallowing.
Prescription topical immunosuppressant medicines for your mouth can also help reduce inflammation (redness and swelling), and make it easier to eat and drink.
“There are solutions that you swish and spit out. There are also gels and creams that can be applied to targeted areas of the mouth or dry lips. For people who have a lot of pain despite treatment, there are steroid injections that can be given directly into soft tissues in the mouth that are hurting to help ease that pain,” he says.
Cindy sees her dental team several times a year so they can keep a close eye on her oral health. It’s a practice Dr. Treister says is important for anyone, but especially someone who has chronic GVHD of the mouth.
“GVHD of the mouth significantly increases your risk of developing tooth decay. It’s important to see your dentist at least twice a year for regular dental cleaning and screening for cavities,” Dr. Treister says.
There is no way of knowing how long someone will need to be treated for GVHD of the mouth. But Dr. Treister says, “Because there are effective treatment options available, most patients will continue to have good oral health and a good quality of life as it relates to their mouth.”
For Cindy, managing GVHD of the mouth isn’t always easy, but she tries to focus on the positive.
“I’m fortunate that my GVHD has been relatively mild. During the frustrating times, I think back to what my life was like when I was going through treatment for MDS,” she says. “I’m thankful for the life I have today.”
For more information
If you’ve been diagnosed with GVHD of the mouth or would like to learn more, download Fast Facts: Chronic GVHD of the Mouth, developed by Be The Match® and the Chronic Graft-versus-Host Disease Consortium. The fact sheet offers information on how to ease symptoms of GVHD of the mouth, how it can be treated, how to keep your mouth and gums healthy, and when to call your doctor.
The caregiver journey before, during and after transplant can be filled with challenges. What was your greatest challenge as a caregiver? Share your thoughts on our Be The Match – Patients Connect Facebook page. You can also find links to resources for caregivers on BeTheMatch.org.
Here, transplant caregivers share some of their challenges with you.
“When it’s your child, you lose your objectivity. You have to be logical and you’ve got to use your head instead of your heart. So the hardest part is disengaging from being the parent, if you can. From being the parent to being the nurse. That’s the hard part.” – Francis, caregiver for his daughter, Constance
“Balancing being my husband’s caregiver while trying to be his wife as well. It was hard to not be overprotective, while trying to let him feel in control of his life.” – Teresa
“There were many challenges, like holding down a full-time job, and taking care of our home and pets while trying to take care of my patient husband (whose doctors were 65 miles away). But you work out all of that. It’s the loneliness you feel when you lose your life and your patient shuts you out because of their personal misery. It can be a very lonely time. Good to have God, family and friends close.” – Krista
“Just so hard watching your loved one suffering. Hardest challenge by far.” – Cayce
“Everything.” – Julia
“The most challenging part of being a caregiver is taking away your emotions from the actual care giving. If you let your emotions get away from you, you will not be able to function. I think that’s the most challenging. That, and balance. How do you balance work? How do you balance your time at home? How do you balance the interference from family members? How do you balance communication to friends? It’s all about balance, especially at the beginning.” – Ramon, caregiver for his wife, Elsa
“Watching and being unable to help.” – Tami
“Fighting the fight all alone, day after day after day.” – Sue
“I was working, so I was trying to do my work from my laptop. That wasn’t easy. I was working, but in the back of my mind I know that hey, in two hours she’s got to get this medicine or that medicine. But it wasn’t that bad. It was just something we did. It’s part of being married and making that commitment years ago.” – Steve, caregiver for his wife, Patsy
“Coping with the changes along the journey.” – Irene
“Where do I start? The challenges are spiritual, physical, nutritional…hard to squeeze in moments of my own life…I am so depleted, so tired.” – Kailua
“Being a caregiver is one of the toughest things I’ve ever had to do. I’ll be honest, there were times where I would say, ‘Oh, everybody’s taking care of Bob. Who’s taking care of me?’ I will never deny the fact that it was very, very difficult. But one of the unexpected outcomes is that I gained a real sense of confidence and lack of fear. I stepped right up to the abyss and looked down in there and made it through, so that’s actually a real big gift. I never regretted that I had to be a caregiver.” – Karen, caregiver for her husband, Bob
Meet Briana. Briana is an outgoing, happy-go-lucky, energetic (almost) 20 year-old who loves her family, her dogs and has big plans to ride elephants in Thailand and dance in the rain. This self-described princess warrior loves to make people smile–especially her mom, dad and two younger sisters.
In March of 2014, Briana, the princess warrior, was diagnosed with severe aplastic anemia. Her symptoms began just months earlier with fatigue, bruising and headaches. When she first heard her diagnosis, her warrior-like attitude kicked into high gear, “I never thought for one second that I wouldn’t make it through this.” says Briana.
By September 2014, it was decided that Briana needed a bone marrow transplant for survival. No one in her family was a match, so her doctors turned to the Be The Match Registry. With a renewed sense of hope, a match was found and she received her first transplant in December 2014. Unfortunately, Briana’s cells failed to engraft and she had to undergo a second transplant in March of 2015. After battling some complications following her second transplant, Briana is happy to report that she is making huge strides in her health, “I no longer have my PICC line in, I’m not fighting any viruses and I am packing on the pounds!”
With a healthy outlook and BIG plans for the future, Briana is excited about attending the University of Texas in Austin online this spring and then attending “In person… FINALLY” in the fall of 2016.
“My biggest challenge would have to be letting go. Not trying to plan things and worry about things. Losing control was hard”. Briana is now taking control and helping spread the word about importance of joining the marrow registry and supporting transplant patients everywhere. This holiday season, Briana wants you to take action by rocking this Love Your Melon beanie to help raise awareness.
Love Your Melon has created a limited edition Be The Match knit beanie and $10 from every beanie sold will help patients find their marrow match, cope with the stress of transplant and fund more life-saving research. Support Be The Match and patients like Briana and buy your Be The Match + Love Your Melon beanie today! http://bit.ly/1STU9Gu
I never planned on becoming a marrow donor. The whole concept honestly freaked me out, which is why when Be The Match visited my campus to recruit volunteers, I avoided the booth at all costs. Little did I know that a week or two later, my life would be affected in more than one way from watching The Maze (an illusionist show starring Jim Munroe that includes Be The Match) with my friends. Ever since I was little, illusionists and magicians have always amazed me. I even had a phase where everything Criss Angel did made me in awe of his abilities. Obviously, the impression hasn’t completely faded.
The beginning of Jim Munroe’s act was phenomenal, and my mind was blown on numerous occasions. At the same time, since I knew Cru, a Christian organization at the University of Wisconsin – Stevens Point (UWSP), was organizing The Maze, I was curious to see how Jim Munroe would implement his beliefs into the performance. His story about his battle with leukemia almost brought tears to my eyes, especially when he showed the video of his first meeting with his marrow donor. It was hard to believe his donor was only 19 at the time. After the show, Be The Match coordinators gave us more information about donating and allowed us to sign up to be a donor right then and there. Like the week before, I was still hesitant to sign up. My decision changed though once I learned more about one of the methods of donating marrow. During the procedure of donating bone marrow – which involves removing the marrow directly from your hip – you’re put under anesthesia. I honestly don’t know what kind of person that makes me if I am only willing to allow a needle to be inserted into my bone when I am knocked out, but I went with my decision.
A few of my friends also signed up that night, and we were all talking about how slim the chances were that any of us would be chosen to donate sometime soon. I had no idea how wrong we were. To give you a rough timeline, Jim Munroe came to UWSP in early spring. A few months later, my mom called me, asking if I had signed up to be a marrow donor. Apparently something was sent in the mail to my house saying I was a possible match for someone. *Cue explosion sound* my mind was kind of blown. I had barely been on the registry and already received a call, as preliminary as it was. I thanked my mom for letting me know and then called Be The Match to give them the information they needed. Excitement and nerves coursed through me as I wondered if I would be contacted again. My answer came a few weeks later once I was on break from school.
I had just started a run when my phone started ringing. Since I didn’t recognize the number, I almost let it go straight to voicemail, but decided to answer instead. The man on the other end turned out to be a Be The Match coordinator named Arthur, who informed me that I was a closer match and they would like some blood samples. I think I surprised him with my response of “Seriously?! That’s awesome!”, rather than a nervous “Oh, wow, um okay, sure” he may have been expecting. He then proceeded to ask me an insane amount of thorough medical questions and we started to figure out when I could have my blood drawn. My mom is a medical technologist, so she’s trained in drawing blood. Once Arthur heard this, he said she could draw it and we could send the kit back straight from our house. A few days later, we did just that, and the waiting began again.
One day about a month later, I was getting ready to go to work from my grandparents’ house when I saw a number on my phone that I now recognized. It was Arthur, and he had surprising news. I was the match. Immediately I started jumping up and down around my grandparents’ living room and couldn’t get the smile off of my face. My grandpa and cousins were trying to figure out what I was so excited about. Arthur continued to ask me more questions and ensure I was still willing to donate. He informed me that my case was a special one, as I wouldn’t be needed for several more months. Usually secondary donors are put on hold, but this time I, as the primary donor, was as well. He then recounted a few testimonies from recent donors about the length and extent of pain during recovery, which meant a lot. I hung up feeling ecstatic and couldn’t stop smiling the rest of the night.
As of now, the only thing I know about the patient I will be donating to is that he’s around my same age. That really hit home. My parents and I are both excited and nervous for my donation. My friends and other family members have also been incredibly supportive, which has helped tremendously. I believe that everything happens for a reason. If Jim Munroe had never come to UWSP, I never would have signed up to join the registry – and the kid I am donating to could still be looking for a match. If he is willing, I hope to meet him in the year following the procedure, so I can thank him for changing my life for the better. To think it was all because I decided to see a magician on campus.
For most children, the holiday season is filled with love, gifts and excitement for the New Year. However, for children like Evelyn, simply being present and able to celebrate a holiday is a precious gift. By her first birthday, little Evelyn had endured more painful medical procedures than most people experience in a lifetime. But to look at her now, you’d never know it—thanks to the unshakeable love of her family and the life-saving gift of strangers.
The bubbly two-year-old lives in Oregon with her devoted parents and five-year-old brother, Isaac.
Evelyn’s dark, expressive eyes and happy-go-lucky grin contradict the onslaught of illness she battled from the moment of her birth in April 2013.
Before Evelyn was a few months old, she was diagnosed with Severe Combined Immunodeficiency (SCID)—commonly known as the “bubble boy” disease. SCID is a group of inherited disorders that severely compromise the immune system and leave its young victims vulnerable to recurring infections—or worse. “Evelyn had absolutely no immune system. They told us her chances were slim,” said her mom, Stephanie.
That’s when Evelyn’s doctors turned to the Be The Match Registry® and found an unrelated marrow donor willing to step up to help save her life. Unfortunately, Evelyn’s transplant was not successful. However, in spite of the first unsuccessful transplant, the tubes and pain, Evelyn never stopped smiling. “In every picture I took of her in the hospital, she’s smiling,” says Stephanie.
The family decided to proceed with a second transplant just two months after the first unsuccessful try. On the day Evelyn started her chemotherapy to prepare for her second transplant, Stephanie felt curiously hopeful. She and Isaac took a stroll outside and when Stephanie glanced down, she spotted a four-leaf clover. “I just had this feeling that everything was going to be okay,” she remembers.
Her intuition was right. Evelyn’s second transplant in late November was a success. “Today, she’s pretty much a normal two-year-old,” said Stephanie. “In fact, she has surpassed her age for speech and cognitive abilities, which is pretty incredible considering what she’s been though.”
Unlike previous years, this holiday season will be different for Evelyn and her family. With Evelyn’s immune system stronger than ever before, the family will be able to host 18 people for a beautiful Christmas celebration. For a strong, supportive family like Evelyn’s, this year will mean so much.
This holiday season, the family wishes others will get the same life-saving chance they received. “Everyone is hopeful around the holidays; there is a theme of joy and hope,” said Stephanie. “When you donate money or donate marrow you are pretty much giving the gift of hope for people. To give families like ours that hope and chance for life is so special and important, there really are no words for it.”
Join Be The Match and give the gift of hope to patients spending the holiday fighting for their lives. For children like Evelyn, your gift could make all the difference.