Jade is a recent transplant recipient. This is her story.

Posted October 8th, 2014 by admin and filed in News

fight-transplantday2Super Wonder Jade

“Never. Ever. Givvvve up! Never. Ever. Givvvve up!” This is the cheer of smiling, bubbling, 4-year-old Jade. What is she cheering for? Courage to beat her cancer.

A fighter from day one, Jade’s journey began with unexplained episodes of limping, joint pain and fever. An otherwise healthy toddler who could run circles around her older brother, Jade’s parents, Jaytoe and Taneika, were puzzled. Multiple visits to the emergency room and they still didn’t know what was wrong.

On January 5, 2012, a few days after celebrating the New Year, Jade was admitted to the hospital for a persistent eye infection. Trusting their gut, they asked for additional tests. “We figured while we were there, why not get to the bottom of it once and for all,” says Taneika.

Eager to help, Jade’s doctors listened to the list of symptoms and explored many options. Ultimately, the news was devastating. Little Jade had cancer—acute myeloid leukemia (AML). “We were floored. It was hard to swallow because she wasn’t even two years old yet. We were still getting to know her and watch her grow, but hearing this diagnosis almost felt like a death sentence,” says Taneika.

wonderkids2Eight months and five rounds of chemo later, Jade was in remission. Like any parent, Taneika was overjoyed, but she was worried that it was too good to be true. They filled their days with fun activities like visiting museums, baking cookies, painting and dancing to Jade’s favorite tunes. “Our family had a renewed sense of living life to the fullest, but I always felt like I was looking over my shoulder.”

When Halloween arrived, Jade was old enough to help pick her costume. “She absolutely loves dressing up and equally loves ‘saving the day,’” says Taneika. “Familiar with traditional princess costumes she was soooo excited to see the warrior princess Wonder Woman costume.” Completely thrilled, Jade declared herself “Super Wonder Jade” with powers to fight the “bad guy cells.” The nickname stuck and Jade continues to call herself this today.

Relapse

On March 19, 2014, just a few weeks shy of celebrating Jade’s fourth birthday, her leukemia resurfaced. “It was harder to hear the news the second time. We thought we had it beat, but we didn’t,” says Taneika.

Immediately, Jade’s doctor’s explained that a marrow transplant was her best shot for a cure. “They told us that relapsed AML was more difficult to treat. They also told us the likelihood of finding an unrelated donor was very low because of how uniquely made Jade is, because of our ethnic backgrounds.” The frightened family knew it would be a tough battle, but brave Jade took the news with grace.

“Jade returned to the oncology floor like she owned the place,” says Taneika. “Wandering the halls, serenading the staff at the nurses’ station, and quickly finding her place in the art room.” But, despite the familiarity, things were different. Jade was a big girl now. “The halls were the same, the staff was the same, but Jade had the ability to ask questions like: Why are we here? When are we going home? Why can’t my friends come over?”

Thankfully, Jade’s cheerful nature quickly won over and she settled into her routine filled with activities such as singing “Let It Go” as she said good bye to her hair, swishing “magic mouthwash” to lessen the pain of mouth sores and earning more than 500 beads of courage—one for every procedure.

In her journal, Taneika wrote, “Jade was so playful, so brave and so strong throughout her treatment, even after a rough chemo session. And she would just say, ‘I’m smiling for me.’ We absolutely believe that her spirit and attitude helped her heal… helped strengthen our faith and our resolve that she would be cured.”

day1transplantadmission2Re-birthday

Finally, on July 3, after months of searching, transplant day arrived. Unable to find an adult donor, doctors located a 5 out of 6 cord blood match.

Pronounced Jade’s “re-birthday,” the special day was filled with celebration banners, cupcakes and Jade’s favorite thing in world—music. “She proceeded to dance for an hour straight, grabbing our hands and pulling us to the dance floor one by one,” says Taneika.

Exhausted, Jade finally fell asleep as nurses hooked up an IV pole for her new, life-giving cells to drip slowly into her body. “When you hear the word ‘transplant’ you think surgery…sedation…but it was not like that at all,” says Taneika. “The whole process took less than two hours.”

The Jade Parade

Twenty-four days after transplant, Jade was allowed to make her first trip home. Having seen parade-like, end-of-treatment celebrations before, Taneika was overcome with emotion as Jade exchanged her Beads of Courage for her requisite sunglasses, high filtration mask and tiara. “She went out in style, leading the staff decisively toward the elevator cheering, ‘I’m brave, I’m strong, I’m ready for whatever comes along,’” says Taneika.

By day 29, Jade was 100% donor cells. She did experience some early setbacks with graft versus host disease (GVHD) and liver damage, but Jade is currently healthy, happy and cancer free.

snowday2Forever Thankful

Taneika is at a loss for words when thinking about the gift their family received. “Thank you seems inadequate… We wish there were words beautiful or accurate enough to fully express our gratitude for this incredible gift — for saving our daughter’s life and keeping our family whole,” she says.

“With each milestone that Jade reaches, every smile that she cracks, each hug that she shares with us, we are eternally grateful to the mother who made this possible when she donated her newborn baby’s cord blood, to Be The Match for facilitating her gift, and to Jade’s medical team for their incredible support. We thank God for them all. We will certainly be reflecting on that this holiday season and hoping not only for Jade’s continued remission, health and overall rock-stardom, but also for a match and a cure for all of the parents, grandparents and children who need it.”

The family is also grateful people like you who support Be The Match by making a financial gift. “Thank you for helping to give meaning to Jade’s journey. We often ask and wonder, ‘Why Jade? Why did this happen to our sweet girl?’ There will never be a satisfactory answer to those questions, but we are so heartened that her story, her spirit inspired you to make a gift that will help heal another family like ours that has been turned upside down by cancer.”

Help kids like Jade. Give a child the gift of life.

Finding Tamino’s Cure – Two Dads Unite to Help

Posted October 8th, 2014 by admin and filed in News

Two young fathers, Joe (far left) and Justin (far right), used their first-time marrow donor-recipient meeting on Good Morning America to draw attention to another young father's search for a marrow donor. They're helping spread the word about Tamino (center) whom they met at the inaugural NYC Be The Match Walk+Run.

Two young fathers, Joe (far left) and Justin (far right), used their first-time marrow donor-recipient meeting on Good Morning America to draw attention to another young father’s search for a marrow donor. They’re helping spread the word about Tamino (center) whom they met at the inaugural NYC Be The Match Walk+Run.

In September, ABC’s Good Morning America broadcast a special first-time meeting of a Staten Island, NY man who beat lymphoma and the Dallas marrow donor who helped him do it. Unbeknownst to them, they led parallel lives: both 35, married and each a father with young children.

The title: “Dad” means everything to both of these men. So, it was no surprise that as excited as they were to meet, they turned their good news into an effort to help another young father searching for a marrow donor.

The dads are spreading the word about Tamino, a father from NYC suffering from Severe Aplastic Anemia. They’re asking others to join the Be The Match Registry® online in hopes of finding Tamino a life-saving marrow donor so he can watch his one-year-old son, Matteo, grow up. Currently there is no match for Tamino on the Be The Match Registry. He is of Brazilian, French, Italian, Bolivian and Colombian ancestry.

“No child should grow up without a father, not if we can help it,” said Justin Jenkins the Dallas dad who donated marrow so Staten Island father Joe Yannantuono could watch his 4-year-old grow up.

“Let’s find Tamino a marrow donor. Help teach his young son, Matteo that the world may be big, but it’s full of people willing to stop what they’re doing for a moment to help a little boy in Queens who needs his daddy.” Join the registry online at join.bethematch.org/tamino.

Share this message and help spread the word. If you’re not a match for Tamino, you may match one of the thousands of other patients battling blood diseases and searching for their cure.

Blood Cancer Awareness Month

Posted September 25th, 2014 by admin and filed in News

Dr. Jeff ChellSeptember is Blood Cancer Awareness month, so I wanted to talk about the cure for blood cancers and why I am passionate about our work at Be The Match.

Every four minutes someone is diagnosed with a blood cancer like leukemia or lymphoma. Seventy percent of patients do not have a donor in their family. They depend on Be The Match to find their life-saving match.

So, thanks to you—our community of registry members, donors, expectant parents who donate their babies’ umbilical cord blood, volunteers, health care professionals, researchers and financial supporters—more patients every year are receiving the life-saving marrow or cord blood transplant they need.

I hear the stories of blood cancer patients every day, and I can see the impact of our work. Together, we are saving lives. So I am grateful for my role as part of this trusted, global organization as we lead scientific advances to create better outcomes for all patients. We continue to improve patient access to transplant by leading efforts that remove barriers to treatment, and to champion initiatives that strengthen the abilities of our network of hospitals and international registries to meet the growing need.

Each and every one of us may hold the cure for a blood cancer patient. I urge to you register, volunteer, spread the word and do what you can to help those in need.

All the best,

Jeffrey W. Chell, M.D., CEO, Be The Match

 

A Letter From Kim: Wife, Mother, Survivor

Posted September 22nd, 2014 by admin and filed in News

KimMcGrath_daughtersKim McGrath is an extraordinary woman who fought a battle against two types of cancer and came out a champion. She is the wife of Jeremy McGrath, 7-time Motocross/Supercross champion, and a mother of two young girls, Rhowan and Bergen. On September 12, at the Be The Match Gala, she met the young man who saved her the man who saved her life—her marrow donor, Daniel.

The following is a reflection written by Kim:

“After my two year battle with breast cancer, and now a new devastating diagnosis of leukemia, the challenges of fighting yet again seemed insurmountable. Still exhausted from all that I had been through I was done being brave, done being strong I just wanted to be. It was scary finding out that a bone marrow transplant was my only hope for a cure. After a long and tedious search for a donor we finally found what we were looking for, a young man from Germany was a perfect match for me.

So, on July 27, 2012, my life was changed forever. Through the miracle of a bone marrow transplant I was given life in a bag from a perfect stranger. This young man gave me a second chance to live without knowing me, he gave my girls a mom without thinking twice, he gave us hope when there was very little to speak of, and all without a face. A perfect stranger.

The transplant proceeded, but not without bringing me to my lowest point of darkness. Weak and vulnerable, I couldn’t stand up, I could barely speak or even stay awake. My recovery seemed but a distant dream. Confined to the house for months after spending 88 days in the hospital took a cruel toll on me as I struggled to even look in the mirror, wondering if I’d ever be the same again or have the energy to do the things I love. My life was seemingly on pause while the whole world was going on without me. Yet, as grueling recovery gave way to the slightest signs of renewal, I felt strangely empowered knowing I was beating this thing. And I couldn’t help but think about all the blessings in my life, each one worth fighting for.

Though each day seemed endless, I was warmed by the joyful sound of two little girls happy to have their mommy home and the unwavering love of an amazing, caring husband. That’s why I’m here today, that’s why I’m alive. It wasn’t medicine, or doctors, or treatments.

It was LOVE that got me here. Love from my family, love from my friends, love from a perfect stranger.

Who could possibly be the same after an experience like this? The dark times so incredibly bleak, the emotions relentless. Yet, with all of this comes an extraordinary sense of clarity. Deeply humbled by this journey and proud of what I’ve overcome, I am content with whom I’ve become and am forever grateful for the unconditional love that surrounds me.

I used to pray that I would one day forget this awful journey, never again looking back on these bitter years of illness. But I don’t pray that anymore. Through it all I’ve gained a new appreciation for life that is unexplainable and for that I will be forever thankful.”

Coach Talley is Matching Gifts In September

Posted September 17th, 2014 by admin and filed in News

10511381_10152684119744637_3253854182066648548_oIn 1993, when Villanova Football Coach Andy Talley learned of our life-saving work, he knew he had to help. Recognizing that his young, healthy and diverse football players had the potential to become marrow donors, Talley set out to educate his players and the community about the opportunity to save a life. He’s motivated more than 52,000 young people—many of whom are athletes—to join the registry, with 194 going on to donate marrow to patients in need of a life-saving transplant.

Talley has also been an ardent financial supporter of Be The Match. During the month of September, The Andy Talley Bone Marrow Foundation will match gifts to Be The Match dollar-for-dollar, up to $100,000. Thanks to his generous support, your dollars will have DOUBLE the life-saving impact.

Donate today!

 

Help patients while you work

Posted September 12th, 2014 by admin and filed in News

Help PatientsYou can join thousands of people who choose to give to Be The Match through their workplace giving campaign. Here are a few ways you can make an impact:

Community Health Charities. Be The Match is a member of Community Health Charities the largest workplace giving collaborative with a focus on health issues. If Community Health Charities is a part of your workplace giving program, you can direct donations to Be The Match. Our designated Combined Federal Campaign code is #10579.

United Way. If our information is not listed through your local United Way campaigns, you may write in Be The Match on your pledge card, along with this address: 3001 Broadway Street NE., Minneapolis, MN 55413

Matching Gifts. Many employers will match your personal donation. Check with your company for more information on matching gift programs. Employer matching gifts may also be available to you if you are the spouse of an employee or a retired employee.

If you have any questions about workplace giving, please contact Angie Dahl at adahl@nmdp.org.

Are you Tamino’s cure?

Posted September 11th, 2014 by admin and filed in News

Tamino-Castro_triple-blog-image_resized

 

 

 

 

 

STORY UPDATE – September 17, 2014:

Tamino’s search for a marrow donor has caught the attention of two other young fathers who understand exactly what he is going through. On Friday, Sept. 19, ABC’s Good Morning America will broadcast a special first-time meeting of a Staten Island man who beat lymphoma and the Dallas marrow donor who helped him do it. These two young dads heard about Tamino’s search and are asking others to join the marrow registry in Tamino’s honor.

“No child should grow up without a father, not if we can help it,” said Justin Jenkins the Dallas dad who donated marrow so a Staten Island father could watch his 4-year-old grow up.

“Let’s find Tamino a marrow donor. Help teach his young son, Matteo that the world may be big, but it’s full of people willing to stop what they’re doing for a moment to help a little boy in Queens who needs his daddy.” Join the registry online at join.bethematch.org/tamino

ORIGINAL STORY – September 12, 2014:

In June 2013, Queens, NY residents Tamino Castro and his wife, Krishna welcomed their first child into the world – a baby boy they named Matteo.

Their joy was short-lived. Less than a week after Matteo’s birth, an unexpected medical diagnosis turned their world upside down.

Tamino experienced an unusual and severe reaction to a vaccination, prompting his doctor to recommend additional testing. After several nerve-wracking days of blood work and bone marrow biopsies, the new parents received a life-changing diagnosis: the young father was suffering from severe aplastic anemia.

Aplastic anemia is a disease in which the bone marrow does not make enough blood cells, limiting the body’s ability to carry oxygen, fight infection and control bleeding. Tamino’s best chance for a cure is a marrow transplant, so his doctors were quick to consider a transplant from one of his two siblings living in Brazil.

Sadly, Tamino’s siblings were only a match for each other – not for him. Like 70 percent of marrow transplant patients, Tamino turned to the Be The Match Registry®, the world’s largest and most diverse listing of potential marrow donors, in hopes of finding an unrelated donor.

While they continue to search for a perfect match, Tamino and Krishna are encouraging New York residents to participate in the upcoming Be The Match® Walk+Run. The event takes place on Saturday, September 20, starting at South Street Seaport Fulton and Front Street.

The 5K, 1K and Tot Trot raises funds to support marrow transplant research, help patients with uninsured treatment costs, and add more potential marrow donors to the Be The Match Registry. The better the turnout, the more hope for a cure for patients like Tamino.

You can join the Be The Match marrow registry online in honor of Tamino and other blood disease patients in need of a marrow donor, visit join.bethematch.org/tamino.

You’ll get a cheek swab kit mailed to your home. Follow the simple instructions, swab your cheek and mail the swabs back to Be The Match. It’s that easy to join and see if you’re someone’s cure.

Be The Match On Campus is rallying in the fight against blood cancer

Posted September 9th, 2014 by admin and filed in News

Be The Match On Campus students from the University of Minnesota chapter hold a registry drive.

Be The Match On Campus students from the University of Minnesota chapter hold a registry drive.

With student-led chapters at over 70 colleges and universities nationwide, Be The Match On Campus has the people, passion and power to make huge strides in the fight to cure patients with life-threatening diseases in need of bone marrow transplants.

Be The Match On Campus goals include increasing awareness of the need for bone marrow donors, building the registry, and fundraising for Be The Match. The 2013-2014 academic year saw success in all these areas. Together, the chapters raised nearly $60,000 and added 11,178 new members to the Be The Match Registry.

With another academic year upon us, Be The Match On Campus is geared up and ready to go. In July, committed and passionate students from each chapter attended the 2nd Annual leadership summit in Bloomington, Minnesota, where they put the wheels in motion for their biggest year yet. Goals for the 2014-2015 academic year include raising $150,000 between all of Be The Match On Campus’s chapters, and adding 15,000 new members to the registry.

To learn more about Be The Match On Campus and to track our progress toward these goals, click here.

Paul Murray’s Donor Story

Posted September 8th, 2014 by admin and filed in News

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Paul, marrow donor explains the donation process

After watching a Be The Match® video about marrow donation, Paul wondered: Could he do it?

Paul is of mixed race ethnicity, and he discovered there was an urgent need for donors like him. He visited BeTheMatch.org to learn more and was convinced he could help, so he requested a cheek swab kit.

When the kit arrived in the mail, Paul swabbed his check and sent it back, indicating his willingness to join the Be The Match Registry® and donate if needed. He and his wife talked about the registry and speculated on his chances of being a match. “I remember hoping I would be called. If I could help change a life or even save a life, then what’s a needle?” says Paul.

And then, less than a year later, Paul’s wish came true: he was identified as a possible match for an unidentified patient.

Excited about the prospect of helping someone, Paul went in for blood work – and the match was confirmed. His next step was a full physical to ensure that he was healthy enough to be a donor. Throughout the process, Be The Match provided Paul and his wife with ongoing support and resources, including a dedicated donor coordinator.

“It was really wonderful,” says Paul. “The nurse I worked with became my personal contact and I could call her any time of day or night. We sat around the table and talked about what donation would mean for me and for my wife.” The nurse answered their questions and alleviated their concerns.

“One of the things that I really like about Be The Match is that they are so concerned about you as a donor,” says Paul. “They make sure you’re safe at every step and give you every opportunity to change your mind.”

But Paul didn’t change his mind. On the day of the actual donation, when he learned that he would be donating to a 17-year-old boy with leukemia, Paul broke down and cried.

“It touched me so dramatically,” he says. “I thought about how this young man was just beginning his life, and that I was about to do something that could give him time he didn’t have now.”

After the donation, Paul had a stream of visitors coming to express their admiration and congratulations. He told everyone it was an honor and that he’d do it again in a heartbeat. But the best thing he heard was that his recipient’s transplant went well.

Paul is now an ardent supporter of Be The Match. “All it costs you is a little time and a little soreness,” he says. “And you save a life.” After reading about other donors who have given two or three times he says, “It makes me want to donate again. It is the easiest way that we can give life and give hope to someone else.”

A Lifetime Worth of Thanks

Posted September 3rd, 2014 by admin and filed in News

 Tiffany and Husband PhotoTiffany Sullivan always thought she’d be the last person to get cancer… until she did.

As a working mother of two, Tiffany found time to eat right and take care of herself. So when a routine blood test showed a startlingly high platelet count, Tiffany and her family were shocked.

A devastating diagnosis

Visits to specialists and additional testing lead to an official diagnosis in November 2010—myelofibrosis, a cancer that affects the body’s blood-forming tissue.

While the news was devastating, Tiffany decided early on that giving up was not an option. A natural optimist, she recognized that part of her battle with cancer involved mental strength. By staying positive and relying on her faith and family for support, Tiffany was determined to beat the odds. “From the moment I was diagnosed with cancer, in my heart, I always believed I would get better… God doesn’t give you anything you can’t handle,” said Tiffany.  

The road to recovery

Soon after her diagnosis, Tiffany’s doctors determined a marrow transplant was her best option for recovery. All four of her biological siblings were tested, but, unfortunately, none of them were a match. After turning to the Be The Match Registry, Tiffany’s doctors quickly located an unrelated marrow donor committed to helping her survive.

Though Tiffany was encouraged, she was worried about the chemotherapy. The nausea she could handle, the weakness she could take, but there was one part of the process she was truly dreading: losing her hair. Tiffany says losing her hair was the most painful part of her entire ordeal. “My hair is a big part of who I am. When I eventually shaved my head,” she said, “I just broke down and cried.”

In the end, it was all worth it. In June of 2011, a year after her diagnosis, Tiffany received her life-saving transplant. She is certain she wouldn’t be alive today if not for the support from her family and friends and the generosity of a selfless stranger—her marrow donor.

Speaking to the man that saved her life

Tiffany knew right away that contacting her donor was something she wanted to do. If the donor center allows and both parties consent, a donor and recipient must still wait one year before they can exchange contact information. After a year of anticipation, Tiffany and her donor finally connected by phone.

While they are hundreds of miles apart, Tiffany and her donor feel deeply united. Her donor explains that Tiffany is now a part of him and his family. The two communicate often during which Tiffany tells her donor, “You are the reason I get up in the morning.”

An extraordinary meeting

“I can’t wait to know the person that saved my life,” Tiffany said. Soon, her wait will be over. On September 27th Tiffany and her family will meet this extraordinary stranger live on stage at our Be The Match Soiree, in Atlanta.  They are incredibly excited to say thank you for greatest gift of all—the gift of life.

Learn more about the Atlanta Soirée, September 27 or Minneapolis Gala, September 12.