An Ocean Away

Posted December 3rd, 2014 by Be The Match and filed in News
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The life-changing call:

On September 9th Duke’s phone rang. Expecting one of his four children or his parents, he picked up the call. Instead, he heard the voice of a man he had never met – an oncologist. “I need you to come to the hospital tonight,” the doctor told Duke. He broke the news directly, “you have leukemia.”

Duke was at the hospital earlier that day being tested to determine the cause of his declining condition. He knew that something was wrong and was actually relieved to learn of the diagnosis and begin working out a treatment plan.

Shortly after arriving at the hospital that evening, Duke underwent additional testing. Within a day, his results were back. He was then faced with an even harder fact to comprehend, a fact that would shake his entire world: without immediate treatment, Duke only had a month to a month and a half to live.

That was six years ago, when Duke was 44. Thanks to a complete stranger, an ocean away, Duke is alive to share his story of faith, good fortune and, above all – survival.

The fight to survive:

 Shortly after Duke was diagnosed, he started chemotherapy. Amazingly, after a year of extremely aggressive treatment, Duke was pronounced cancer free; but he wasn’t in the clear just yet. His doctors told him they were certain the cancer would come back, and when it did, the disease would be stronger and more aggressive.

Unfortunately less than nine months later, the doctors’ prognosis was right. Duke’s cancer was back, and this time, he needed more than chemotherapy to survive. “My diagnosis was aggressive, so they knew they were going to have to do something to try and save me. The doctors told me, you aren’t going to survive without a marrow transplant,” said Duke.

The search for a match began by testing Duke’s siblings. When they tested negative, his doctors turned to the Be The Match Registry. That’s when Duke won what he would later call his “lottery ticket,” – a matched marrow donor. After intensive chemotherapy to prepare his body, Duke received the transplant that saved his life.

The meeting of a lifetime:

Immediately after his transplant, Duke knew he wanted to meet the young man that gave him his life back. “In my mind, I must have painted my donor a million different ways. I had thousands of questions for him,” said Duke.

In America, if both parties agree and the transplant center allows, a donor and recipient can meet one another, but must wait one year after transplant. Because Duke’s donor was from Germany, the waiting requirement was longer. After two years, Duke was finally able to reach out to the man who, at 27, saved his life by donating Peripheral Blood Stem Cells (one of two methods of marrow donation). Duke offered his donor the opportunity to fly to Colorado so they could meet.

In October, Duke’s donor, Marco, did just that.  Before he arrived, Duke had so many things he wanted to tell Marco, but most of all he wanted to say thank you. “There is a cascade effect when someone is diagnosed. It cascades to family to friends, to a huge amount of people, not just one. I wanted to make sure Marco knew that what he did affected a lot of people. I wanted my entire family to have the opportunity to give him a big hug and say thank you”

Marco and Duke spent the next 10 days together, getting to know each other and developing a deep bond. “It was definitely a connection we will maintain,” said Duke.

The blessings along the way:

When Duke looks back on his experience, he believes God had a plan for him and this faith is what helped him through the entire ordeal. “If everything was perfect, and bad things only happened to bad people, life wouldn’t be as brilliant as it is,” he said. “Bad things happen to good people too, there is no way around it, this allows us to realize just how fortunate we are.”

In addition to recognizing how fortunate he was, Duke learned something else about himself – he is stronger than he ever could have imagined. “You may think you know how you would respond to a life-changing event, but I would argue that you will never really know how strong you are until you are in the foxhole, fighting for your life,” he said.

Marco did what he promised, donated marrow to save a life. “At the end of the day, that’s what you want. You want everyone to have the chance like I did,” said Duke.

 

Aruni Donated PBSC Despite Concerns of Family and Friends

Posted December 5th, 2013 by Be The Match and filed in Donor Stories
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Aruni Story 3Many people join Be The Match Registry® in hopes of becoming a match for a family member, friend, or someone in their community. When a member of her community was diagnosed with leukemia in 2009, Aruni did just that. She joined the Be The Match Registry at a registration drive held on his behalf. In the end, Aruni was not a match and the patient that motivated her to join passed away. Through it all, Aruni stuck with her commitment to Be The Match and remained on the registry, hoping she could help someone else.

Members of Be The Match Registry join knowing that they may never be identified as a match for someone, or that they could be one of a number of potential matches. In some cases, members who join may be the only person on the registry who can save a particular patient’s life.

Three years after joining the registry, Aruni received news that she was a potential match. “I couldn’t believe that I was chosen as a possible match and that I was picked out of everyone on the registry,” said Aruni, “It was a really big surprise and I was really happy!” Thinking of her friend who passed away from leukemia, Aruni had no doubts about proceeding with additional testing. “I was a little nervous because I didn’t know if I was actually going to be the true match or not,” said Aruni.

Aruni was selected as the best match for her recipient and could not have been more thrilled. She immediately told her family and friends that she had matched, but their initial reactions to this exciting news were not as she expected. Aruni’s family was worried about her decision to donate because of the misleading information they received from others. They were hesitant about possible side effects Aruni would face, the time it would take away from her work, and her overall health. After hearing their concerns and knowing that she would need their support, Aruni was able to talk to her parents and make them feel more comfortable about her decision by educating them about the steps of donation.

Aruni donated peripheral blood stem cells (PSBC) to a 34-year-old woman fighting acute leukemia. After the donation, she was given an update about her recipient with the amazing news that the donation was successful. Recently, Aruni received an update that her recipient had returned to work and is doing well! Aruni is looking forward to finding out if she can be in contact with her recipient in the future. Until then, Aruni keeps her contact information up to date in hopes that she can be matched again and stays committed to Be The Match® by sharing her story with others.

Editor’s note:

Sharing your decision to donate marrow with family and friends is very important. If your loved ones have concerns or questions about the donation process please utilize the Donor Toolkit: Sharing your decision with family and friends. This toolkit is designed to help donors answer questions their spouse or partner, parents, children, and friends may have throughout their journey and create positive conversations about moving forward with donation. Be The Match wants you and your support network to be informed and comfortable with your decision to donate marrow.

Donating not once, but twice to give a young boy life

Posted June 28th, 2013 by Be The Match and filed in Donor Stories, News
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Bhairavi’s Story

Bhairavi donorIn 2005, Bhairavi joined the Be The Match Registry® to see if she would be a match for her dear friend who had been diagnosed with leukemia. Like many others who join the registry, Bhairavi was hopeful that she would be a match for her friend. As time passed, she found out she had not matched her friend, whom she called her 11-year-old inspiration. But just three years later, Bhairavi was happy to receive a call from Be The Match®, informing her that she could be the one to help save the life of another young boy.

Getting the Call to Donate

The week Bhairavi received the call, she was finishing her Master’s thesis and preparing for finals. On the call, she was told that she was a potential match for a seven-year-old boy with acute myelogenous leukemia (AML). With mixed emotions and a fear of the unknown, Bhairavi talked with her friends and family about this life-changing opportunity. After these discussions, she decided to go forward with additional testing to see if she could be this young boy’s marrow match.

Much to Bhairavi’s surprise, the test results came back and the doctor told her that she was a “perfect” match for this patient. Hearing this information, she thought of the friend who inspired her to join the registry three years earlier, and accepted to donate in honor of him.

The Donation—Feeling the Connection

Just two weeks after her graduation, Bhairavi donated peripheral blood stem cells (PBSC), one of two methods of donation, to a stranger—a little boy in need. Although she received little information about her recipient before the donation, Bhairavi felt connected to him.

Prior to PBSC donation, donors receive injections of a drug called filgrastim. These injections increase the number of blood forming cells in the donor’s bloodstream, and are taken for five days leading up to donation. For Bhairavi, these shots were worse than the actual donation. But remembering that the pain was only temporary, Bhairavi was able to keep her head up and move forward with donation.

Meeting her Recipient

A year after the donation, Bhairavi was contacted by her recipient’s family asking if she would like to connect*. They chatted via email for more than a year, and later decided to meet in person in Chicago. Two years later, Be The Match contacted Bhairavi again, asking if she would consider donating to her recipient for a second time. Without hesitation, Bhairavi agreed.

The Second Donation

The second PBSC donation was very similar to the first. Bhairavi arrived at the hospital early to prep for the procedure. Today, she describes the second donation as, “not as extensive or as painful” as the first. “I would compare [my experience] to running a marathon,” said Bevi. “You don’t know if you can keep going, but in the end you are really proud of yourself – It’s really rewarding.”

Five Years Later – Life After Donation

Today Bhairavi is married and working as a Gerontologist (the study of the biological, psychological, and social aspects of aging). She lights up when telling others of her donation experience, and describes her journey in a very upbeat and positive manner. “The entire experience was life-changing,” said Bhairavi, “to know you have saved a life – it changes the way you look at things.”

By sharing so much with an individual she had never met before, Bhairavi said it brought her back down to earth. When asked if she would ever donate again in the future, Bhairavi responds whole-heartedly with, “absolutely!”

Note:

*A donor and patient may exchange contact information if the patient’s transplant center rules allow, it has been at least one year since transplant, and both donor and patient consent.

Ray’s Donation Story

Posted July 2nd, 2012 by Be The Match and filed in Donor Stories
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Ray donated bone marrow to his son Morgan in 2010Ten years after Ray’s brother, Dwight donated peripheral blood stem cells (PBSC), Ray was also given the extraordinary opportunity to save a life—but this time for his own son.

The diagnosis and treatment plan

Ray’s son, Morgan was diagnosed with Acute Lymphoblastic Leukemia, a fast-growing cancer of the white blood cells, in 2008 at the age of 12 years old. Immediately after he was diagnosed, Morgan was sent to Denver to begin his aggressive treatment.

The approach to Morgan’s treatment was to kill the diseased blood cells at the different stages of development. The first stage, induction chemotherapy was intended to bring Morgan into remission. The second stage, consolidation was a second phase of chemotherapy intended to reduce the number of diseased cells in the body. The third and final stage, maintenance was intended to destroy any remaining diseased cells so that the leukemia was eliminated from Morgan’s body.

In 2010, Morgan relapsed. “We were told that Morgan would need a bone marrow transplant,” said Ray. “Those were doors we never wanted to have to go through.” And so began Morgan’s search for a match.

The slim chance of a related donor

When patients first begin their search for a donor, they look for a match within their immediate family. In most cases, 70% of patients do not have a suitable match in their family.

In his family, Morgan’s best chance for a match was with his brother—a 25% chance. When the results came back that his brother was not a match, Morgan’s parents got tested. Parents, because they only provide half of a child’s DNA have a slim 5% chance of being a match. Luckily, Ray was determined to be a match, and after further confirmatory blood testing, it was decided—Ray would donate bone marrow to Morgan.

“I was excited,” said Ray. “I am a full time firefighter and I’m used to fixing things, but at that moment I knew I could help save my son’s life.”

Donation day — The day that would change their lives

“The day of the transplant was like a wedding or a college graduation—it was a big day,” said Ray. The bone marrow donation itself was fairly uneventful for Ray.  He felt a little discomfort from the intubation (insertion of a tube to help the patient breath while under general anesthesia), but it was minimal. Two days after his donation, Ray tried to climb up a flight of stairs and felt a lack of energy. However, after a week or two Ray was back to his old self. Doctors typically suggest that bone marrow donors take it easy the week following donation, because they might feel more tired as well as some slight lower back pain.

Rare connection between brothers

“It’s a unique and unusual bond that we have,” said Ray about his bond with his brother, Dwight, a peripheral blood stem cell (PBSC) donor. “A rare circumstance that we can both claim that we are marrow donors, that we were able to make such a significant difference in someone’s life.”


Editor’s Note:
Ray’s son, Morgan is currently in remission and just completed his 2 year checkup. Their family should receive his test results in about five months.

Click here to read Ray’s brother, Dwight’s donation story.