Seven-year-old Hannah’s sickle cell disease led her to a bone marrow donor—and a cherished new friend.
If you were to picture a patient who had suffered a stroke, you probably wouldn’t imagine young Hannah, whose nickname is Miss Personality. This little girl’s radiant character could compete with the hot sun in July.
For someone with such a shining personality, it’s hard to believe that at one point, Hannah was too sick to leave the hospital. At just 30 days old, Hannah was diagnosed with sickle cell disease (SCD) – a genetic disorder that affects the body’s red blood cells, often causing strokes and other serious side effects. Hannah’s first stroke occurred in 2011, when she was just three-years-old. Since then, her family has lived under the cloud of Hannah’s life-threatening disease.
Sickle cell disease is an inherited blood disease that causes red blood cells to become stiff and take on a crescent or sickle shape. Blood flow becomes blocked when the abnormally shaped cells can’t effectively deliver oxygen throughout the body. The result can be: severe pain, organ damage, and, as Hannah experienced, strokes.
SCD affects about 80,000 people in the U.S. of many different ethnic backgrounds, including about 1 in 500 African Americans.
Doctors proceeded cautiously after Hannah’s stroke, ordering the first of many blood transfusions. Hannah shuttled between the hospital and doctor’s visits during much of the following year.
But it soon became apparent that her transfused blood couldn’t compensate for her defective cells—and that she was in danger of another stroke.
Hannah’s medical team began searching for a matching bone marrow donor on the Be The Match Registry®, the world’s largest and most diverse bone marrow donor registry.
A Selfless Act
Two years earlier, Natalie, a San Antonio nursing student, heard a presentation about the Be The Match Registry. She decided to sign up immediately.
It was a small sacrifice, she thought, in exchange for a life-altering impact. She swabbed her cheek and forgot about it, never imagining that she could save a life—and enrich her own.
In the spring of 2012, Hannah’s seven-month search for a matching bone marrow donor led her doctors to Natalie. It was a call Natalie will never forget.
When she got the call, she was flooded with emotion—surprise, excitement and above all, hope. She hoped for the best for the young patient, described to her as a 4-year-old girl with sickle cell disease.
Natalie prepared for her donation with injections designed to stimulate the production of bone marrow cells. “They weren’t terribly painful, I just felt a bit achy,” she recalled.
On her donation day, she spent several hours hooked up to an IV, watching movies, napping—and gaining a new perspective on what her patient’s experience.
She took it easy that night and returned to work the next day. And then came the hardest part: waiting to hear if the little girl’s transplant was successful.
Hope for Hannah
Hannah’s transplant took under 13 minutes—but she’d had to endure chemo and radiation beforehand. And her recovery was far more challenging. She spent months in the hospital and had to be isolated for nearly a week to protect her fragile immune system.
But by the time Hannah went home, the “bubbly little girl” was well known and widely loved by everyone on her hospital floor. She knew the names of the staff better than most of the adults.
Today, two years after her transplant, Hannah continues to grow stronger: She’s a bright-eyed and eager first grader. Last spring, she had a chance to meet her bone marrow donor at the Hendrick Marrow Program 2014 fundraiser for Be The Match and Levine Children’s Hospital.
“When we met Natalie, It was surreal,” said Hannah’s mom, “putting a face to the person who saved Hannah’s life.” Natalie felt just as emotional as Hannah’s mom, “I’m not a crier—but I cried when we met.”
And Hannah? She ran into her donor’s arms, hugging and thanking Natalie. And she’s never stopped showing her gratitude.
Now Hannah calls Natalie at least once a month, sharing her progress. Natalie is every bit as grateful to Hannah as Hannah’s family is to her. “It’s been an incredible experience,” said Natalie. “You don’t realize that you could be someone’s only match. I really did so little, but it meant the world to them.”
This holiday season, help patients like Hannah find the life-saving cure they need. Give a child the greatest gift of all – the gift of life!
As the daughter of a Be The Match® employee, it’s no surprise that altruism doesn’t fall too far from the tree. Seven-year-old Sophia, a member of Team Be The MatchSM and the face of this year’s campaign, has clearly learned by example. On her birthday, instead of collecting gifts for herself, Sophia chose to give back. She asked her dad what they could do to help kids that were sick and in the hospital. He reached out to Be The Match Foundation and learned about Team Be The Match.
Team Be The Match is a new program that allows anyone, anywhere the opportunity to share their passion and fundraise their way to help deliver cures for blood cancer. Sophia requested that friends and family contribute to her fundraising page in lieu of birthday gifts.
By simply setting up a fundraising page, you too can be part of our life-saving team! You can raise funds by celebrating a wedding, birthday or transplant anniversary, while reaching athletic goals, honoring a loved one or in any number of other creative ways!
Sandy and her husband Jared try not to take anything for granted. They believe that even the most trivial things, like walking outside or going to the store, are moments to be grateful. “You value life so much more when you have watched someone fight for theirs,” said Sandy. Since their son, Dalton was eight weeks old, Sandy and Jared have watched him battle for his life and, ultimately, win.
When Dalton was only two months old, he started to experience frequent bacterial and skin infections. After months of appointments, which produced few answers, doctors finally learned that Dalton’s symptoms were a result of a much larger issue: a genetic immune system disorder called severe combined immunodeficiency (SCID). The diagnosis was very scary; Sandy and Jared were told that if untreated, babies with SCID usually die within a year.
Thankfully, Dalton was lucky. Multiple matches were identified and shortly after, Dalton’s doctors requested additional testing to determine which donor would be his best chance for survival.
Before his transplant, Dalton underwent eight days of high dose chemotherapy to prepare his body to accept the new donor cells. While Sandy and Jared knew that a marrow transplant was Dalton’s best hope, watching their child suffer was emotionally taxing. For Sandy, the 100 days post-transplant were “the scariest and most stressful of my life,” she said.
After a long recovery, Dalton was finally able to return home. “You look at him now,” said Sandy, “and you would never know what he has been through. He has gained weight and has his hair back. He is making up for lost time!”
Without a transplant, Dalton might not be alive. This September at the Be The Match Annual Gala, the family got the opportunity they had been waiting for – the chance to thank the stranger that saved their baby’s life. For the first time, Dalton, Sandy and Jared met Dalton’s marrow donor, Dennis, a fire chief from Boise, Idaho and got the chance to thank and hug Dennis for the gift he gave Dalton.
This Thanksgiving, Dalton’s family is thankful for Dennis and all Be The Match supporters. “Thank you will never be enough,” said Sandy, “but it is all we have. It comes from the bottom of my heart.”
This Thanksgiving, you can help give a child the gift of life by supporting the life-saving work of Be The Match. Your gifts help more patients get the marrow donation they need.
*If the donor center allows and both parties consent, a donor and recipient or a recipient’s guardian must still wait one year before they can exchange contact information and meet in person.
I never planned on becoming a bone marrow donor. The whole concept, honestly freaked me out, which is why when Be The Match visited 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 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, my mind was blown on numerous occasions. At the same time, since I knew cru was organizing The Maze, I was curious to see how Mr. 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 nineteen 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 heard that during the procedure, that 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 University of Wisconsin – Stevens Point (UWSP) in the middle of March. The first week of May, 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 list for two months 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 back home for the summer.
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 in the beginning of June, 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, for I wouldn’t be needed until November. 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 recipient I will be donating to is that he is a seventeen-year-old male. I’m nineteen, so discovering he is only two years younger than me hit home. We have not set a date yet for the operation, but my parents and I are both excited and nervous. 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 be a bone marrow donor. 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.
Life after transplant is different for every person. Here, seven transplant recipients share what this journey has been like for them. What is life after transplant like for you? Share your thoughts on our Be The Match – Patients Connect Facebook page.
“I wake up every day and thank God for giving me another day!” – Dorothy
“My life before the transplant was sickle cell. Life on the other side is awesome. It took some time for me to realize that everything was going to be okay because I’d spent all of my life with sickle cell. I never, ever could have imagined that I would have the life I have now, that I would be able to do things I can now. Right now I feel like I can reach for the stars. I know I have a wonderful future. I’m looking forward to it.” – Constance
“I am extremely grateful to my donor for my second chance at life. I’m well, but fighting GVHD, which can be an annoyance. But I never allow myself to wallow in it because I am so grateful to be alive!” – Janine
“Life after the transplant was rough at first, but as the process went on, I started to feel better. It just takes a while. I’m surprised at how many people I’ve met who have been through something similar or knew somebody who’d been through something similar. I’ve made a commitment to myself that I want to try to help others as much as I can. I look forward to doing as much as I can to help, live a normal life and enjoy life just like anybody else would.” – Bob
“Awesome! Grateful! Wonderful gift from a wonderful lady. We are family now!” – Terron
“My husband and I work together to make each day count. When you’ve been through something like this it makes you really stop and think that it’s just wonderful to be here. We just count our blessings each day. We take one day at a time, because nobody knows what tomorrow is going to bring. We’re enjoying life the best we can.” – Patsy
“I can’t believe how grateful I am to my donor. I am so lucky not to have GVHD so far!” – Lila
“Here we are a year later, and I work 60 hours a week, I have a house, I have a new car. I’m dealing with the little side effects that come up with graft-versus-host disease that came on about a year after my transplant. So I have been having little bouts in the hospital, and having a few more appointments than usual. But, I’m getting married in a couple of months. Life is normal.” – Tom
How one patient learned to manage chronic GVHD of the lungs
Like many transplant recipients, Susan has had ups and downs since her allogeneic transplant in 2011 for acute myelogenous leukemia (AML). About 5 months after her transplant, she started experiencing chronic graft-versus-host disease, including GVHD of the lungs (also called bronchiolitis obliterans syndrome, or BOS).
Symptoms of GVHD of the lungs
“When the GVHD of my lungs started, it seemed to happen fast but subtly,” Susan says. “I noticed that I had to stop when I was going up the stairs or walking any distance because I was out of breath. It wasn’t painful, but I wondered what was going on, so I contacted my transplant team right away.”
According to Kirsten Williams, M.D., a transplant doctor and expert in lung GVHD, the subtle symptoms Susan experienced are common in patients who have GVHD of the lungs.
“While many allogeneic transplant recipients experience some GVHD, chronic GVHD of the lungs is a rare but serious form,” says Dr. Williams. “It often has no signs or symptoms at first. Along with the symptoms Susan experienced, some patients with GVHD of the lungs may develop a chronic dry cough, a tight feeling in their chest or feeling as if they can’t take full deep breaths in and out.”
“If you notice any of these changes, it is extremely important that you contact your blood and marrow transplant (BMT) team right away,” adds Dr. Williams. “GVHD of the lungs can get worse, and treatment needs to start right away. Often the disease has already significantly affected a patient’s ability to breathe by the time symptoms appear.”
Diagnosis of GVHD of the lungs
GVHD of the lungs happens when the donor cells attack and narrow the small airways (tubes) that carry air throughout your lungs. The best way to diagnose this is with pulmonary (lung) function tests (PFTs)
“Even if patients don’t have symptoms, GVHD experts recommend getting PFTs every 3 months for at least a year after BMT. This can sometimes help us find chronic GVHD of the lungs early, and start treatment quickly,” Dr. Williams says.
Doctors may also do a CT scan of your chest to make sure there is not an infection causing breathing problems.
“Once I was diagnosed, a team approach to my care saved my life. In addition to chronic GVHD of the lungs, I also had pneumonia. My BMT team brought in a pulmonologist (lung doctor) and an infectious disease expert, who continue to be part of my care team today,” Susan says. “I would encourage anyone who has GVHD to make sure that specialists, like an infectious disease doctor, a dermatologist for GVHD of the skin or an ophthalmologist for GVHD of the eyes, are part of their care team.”
Without treatment, GVHD of the lungs leads to permanent symptoms and worsening breathing problems. Since there is no cure for GVHD of the lungs, the goal of treatment is to keep your lungs from getting worse.
“Most patients with GVHD of the lungs stay on some therapies for years or for life. Many of these therapies seem to have few long-term side effects, like inhaled steroids or montelukast which are also used to treat asthma. Researchers are studying combinations of treatments,” Dr. Williams says. “It’s a great idea to ask your doctor about clinical trials (research studies) you may be eligible for. This may offer new treatments for you, and also help us understand which treatments are best for future patients with GVHD of the lungs.”
“I encourage other transplant recipients to take part in clinical trials if you can, and be an advocate for your care,” says Susan. “By doing so, you’re not just being an advocate for you, but for generations of transplant patients who will come after us.”
“Even if you’re not able or interested in joining a clinical trial, ask your doctor about results from recent clinical trials,” says Dr. Williams. “These results may help you and your doctor learn about new treatment options for you.”
Living with GVHD of the lungs
Since she developed GVHD of the lungs, Susan has had to give up some things she used to enjoy, like vigorous exercise. But she says she tries to focus on the positive.
“For me, it’s helped to acknowledge the loss of the things I can’t do anymore, but not dwell on the loss. Instead, I focus on what I still have,” Susan says. “I work with people across the country advocating for GVHD care and care after transplant. I spend time with my family, including my 11 grandchildren. I may not be able to run the bases anymore, but I can hit a ball. And ultimately, I’m still here and that’s what’s important.”
If you’ve been diagnosed with GVHD of the lungs or would like to learn more, download Fast Facts: Chronic GVHD of the Lungs, 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 lungs, how it can be treated and when to call your doctor.
How did Love Your Melon get started?
Love Your Melon was created from the simple idea of putting a hat on every child battling cancer in America. In an entrepreneurship classroom at the University of St. Thomas, Love Your Melon was founded by two friends, Zach and Brian. When Zach and Brian experienced their first hospital visit donating hats to kids battling cancer, they knew how cool this idea was. “Seeing the smiles on the kids faces that day was incredible so we kept making the hats.” – Zach
Now that you have reached your initial goal to put a hat on every child battling cancer in America, what is next for LYM?
Love Your Melon will always donate hats to children battling cancer across America, we keep this mission very close to our heart. Our Campus Crew Members dress up as superheroes all over the country donating hats in hopes of reaching every child battling this terrible disease.
To increase our impact on childhood cancer we have partnered with two organizations, CureSearch for Children’s Cancer who fund childhood cancer research and the Pinky Swear Foundation who provide financial support for families with children battling cancer. Beginning last April, fifty percent of Love Your Melon’s net proceeds are donated equally to these organizations, with a new goal of donating one million dollars between the two.
What was the inspiration behind dressing up like super heroes during hospital visits?
Who doesn’t like Superman coming to hang out?!
Going into a hospital room can sometimes be an emotional experience. When our college ambassadors dress up as superheroes, they give the kids something to smile and get excited about! Love Your Melon Ambassadors visit care facilities to spend time with families, donate hats and distract these little fighters from the battles they experience everyday.
Superhero visits are just as much for the families as they are for the kiddos being treated. When a family sees their child’s spirits light up because some college kid took time out of their day to dress up as a superhero, that special moment stays with them.
Be The Match + Love Your Melon are joining forces in the fight against blood cancer with limited edition reversible hats and caps. Tell us a little bit about why you chose to work with Be The Match:
Love Your Melon chose to work with Be The Match because they have the largest bone marrow registry in the world and the work that they do impacts the lives of thousands individuals. We are excited to connect our Love Your Melon Crew across the country with Be The Match to have an even larger impact
Get your limited edition Be The Match+Love Your Melon beanie here: http://bit.ly/1jD5oYf
John, a college placekicker, was familiar with the pressure of being called upon at crucial points in the game. But he never expected he would be called to step up in the game of life by donating peripheral blood stem cells (PBSC) to a patient in need.
John’s donation journey began when two high school students, for their senior project, approached John’s football team at the College of William and Mary. The students presented information about the impact of marrow donation and encouraged the players to join the Be The Match Registry® — if donating to a patient was a commitment they felt was right for them. Moved by the experience, every player who was not already a potential donor, joined the registry that day.
Six months later, John got the call that he was a match for a patient in need of a life-saving marrow transplant. For John, being chosen was a privilege and an honor. “I’m not usually the person to win anything like a raffle or anything like that. It’s cool it got to be this.” John is among the 1 in 500 people who go on to donate.
John was fully committed, but donating meant that he would have to sit on the sidelines for a brief period of time as he prepared for donation and recovered post donation.
In John’s case, the patient’s physician requested a PBSC donation. This is one of two methods of collecting blood-forming cells for marrow transplants. PBSC donation is a nonsurgical procedure, called apheresis, which is similar to donating blood.
Prior to donating, PBSC donors receive injections of a drug called filgrastim to increase the number of blood-forming cells in their bloodstream. John’s doctor explained that, though donating PBSC was low risk, he would likely need to sit out of a few practices and games during a key part of the football season. Thankfully, John’s team and coach fully supported him. “The choice between a football game and saving someone’s life … It was a no brainer,” says John’s coach.
John hoped to schedule his donation during an off-week in the season, but stressed that the patient’s health condition and schedule was his first priority. However, as John approached his donation day, there were some schedule changes which can occur when the patient is not healthy enough to receive a donation, at the scheduled time. For John, that’s when the fragility of the situation really hit home.
Once identified as a match for a patient, the donation process takes 20-30 hours over a 4-6 week period. Through every step of the journey, a Be The Match donor contact representative is with the donor to support him or her. If a donor needs help coordinating their schedule with school or work, Be The Match also provides that assistance.
The donation finally took place in Fall 2014. When asked about the donation day, he says that “it was a very simple procedure” and he watched a few movies while it took place.
Since donating, John has graduated from college and was recently married. Looking back on his experience, he is honored that he was given the opportunity to save a life, but stresses that he is not a hero. “It’s not about someone who gave up two weeks of football. It’s about the people who continually fight this battle that is almost behind the scenes,” he said. John hopes that his actions will inspire others to open their eyes to the cause. “So many lives have been affected by cancer. It’s all around us. Together, we need to step up and do more.”
Ines Lukombo received a bone marrow transplant for Sickle Cell Anemia on August 26, 2009 at Children’s Hospital of Pittsburgh of UPMC at the age of 17. She was a senior at Crete-Monee high school in Chicago at the time of the transplant and was homeschooled during the process. Ines’ eight-year-old sister, Martha was a matched sibling donor who jokingly offered her bone marrow in exchange for onion rings.
The biggest impact that the bone marrow transplant has had on her life is that now she can plan for the future instead of having to plan around her illness. In addition to her Sickle Cell Anemia, the transplant helped rid her of the other Sickle Cell related complications that she sustained for the majority of her life. Complications like multiple Deep Vein Thrombosis, and Chronic Pain Syndrome are no longer a problem for her. Ines is now six years post-transplant and feels invincible.
Ines is now 23 years old and a student at the University of Pittsburgh studying Molecular Biology and English writing. She has since returned to the Children’s Hospital of Pittsburgh and worked with the Sickle Cell team as a research assistant. She has dedicated her life to Sickle Cell research and plans to make it part of her career as a Hematologist.
On September 30, in honor of National Sickle Cell Awareness Month, Ines attended a legislative briefing with national experts where she offered a patient’s perspective on the treatment of sickle cell disease. Find out how you can get involved in our legislative efforts to support patients like Ines: http://bit.ly/1VHV2Y8
For more than 25 years, Be The Match has added volunteer marrow donors to the Be The Match Registry® to facilitate life-saving marrow transplants for patients with blood cancers like leukemia and lymphoma. More recently, we’ve worked with cord blood banks to expand the registry to include umbilical cord blood units that, like marrow, can save lives through transplantation. To accomplish our mission, we need your help to make sure federal lawmakers know how important it is to continue the C.W. Bill Young Cell Transplantation Program and the National Cord Blood Inventory, life-saving public health programs Be The Match operates.
The good news is that Congress has continually recognized the significant work of Be The Match by reauthorizing the programs we operate. These programs help maintain and expand our national marrow and cord blood registry, support research to improve patient outcomes, help patients navigate the health care system and more.
The Reauthorization Process
This September, Congress will decide whether or not to continue supporting the C.W. Bill Young Cell Transplantation Program and the National Cord Blood Inventory, which helps cord blood banks collect units for the national Be The Match Registry. Because Congress created the original authority for these programs, they must review it every five years to determine if it should be continued. This process is known as “reauthorization.”
Right now, legislation that would reauthorize the continuation of these programs and allow federal funding through 2020 is in the House of Representatives. We anticipate a similar bill will be introduced in the Senate as well.
How You Can Help
Be The Match needs advocates like you to help maintain support for these critical programs and to make sure that all Americans understand its role in saving lives.
Be the voice that saves a life. Join our advocacy network and learn how you can support programs like the C.W. Bill Young Cell Transplantation Program and other advocacy efforts in the future. Visit BeTheMatch.org/Advocacy today and get involved!