“Here it is – my chance” Traci’s story

Posted February 7th, 2014 by Be The Match and filed in Donor Stories
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Jeremy-and-Traci_203pxIn 2010, four days before exchanging Valentine’s Day hugs and kisses, life changed for Traci and her family. Doctors discovered a rare, non-cancerous brain tumor, known as a craniopharyngioma, growing on her daughter Camden’s pituitary gland.

Upon hearing the diagnosis, Traci immediately focused on helping Camden through treatment.

Today, Camden is a happy, healthy college junior who has made the dean’s list every semester. While she does require daily medication including growth hormone injections, her mother said the family feels “truly blessed” by Camden’s recovery.

Having watched her daughter beat a life-threatening disease, Traci desired to help other families dealing with serious illnesses. “With true gratitude and love in my heart, I knew that I needed to give back in some way,” she said. “I wanted to give the gift I received to someone else.”

When an elementary school in her community of Milford, Connecticut hosted a bone marrow drive for a six-year-old boy who had leukemia, Traci knew she had to attend.  “Here it is – my chance,” she said, “how perfect.” At the time, Traci said she did not know much about Be The Match® but, felt driven to join the registry. “I knew this was it,” she said. “I was meant to do this.”

After what Traci described as a “quick swab of my cheek,” she said she left the drive feeling excited about her decision to help another person in need. Little did she know she would soon get a phone call that would change her life yet again.

“I got the call,” Traci said. “I’m a potential match! I was told it was my decision to move forward with donation.” I thought – are you kidding me? It would be my honor to donate.”

Traci was told by her donor center representative that she would give marrow in the form of peripheral blood stem cells (PBSC), one of two methods of donation. When starting the donation process, “Be The Match handled everything,” she said. “They made me appointments for things like my blood work and were with me for every step of the donation.” Traci said other than a one-time fainting spell during her first blood draw, everything went smoothly. My first thought after I fainted was that if Be The Match finds out, they won’t let me donate. I certainly couldn’t let that happen.”

At the appointment for her physical, Traci said the next blood draw went perfectly. “The staff and physician were wonderful – I passed with flying colors and without fainting,” she said. “Let the donation begin!”

Although she was “a little scared” prior to receiving her five Filgrastim injections, a drug given to stimulate a donor’s stem cells prior to donation, Traci said the process was “not as bad as I expected.” She was able to continue working while receiving the injections.

After the fifth day, Traci and her husband traveled to the Rhode Island Blood Center for her donation. “And so it began,” Traci said. “I had a wonderful crew of nurses coming in and out. My husband stayed right there with me.”

While the donation process was going smoothly, inclement weather nearly caused a problem for Traci. “About half way through my donation, the power went out,” she said. “The entire staff instantly was on their feet and in action. Thankfully, they had a generator and my donation continued.”

Despite the incident, Traci’s donation was successful.

One year after her donation, Traci was given the contact information for her recipient’s family. Traci then began communicating with her recipient Jeremy’s mother, Suzanne, through social media and email.

What began as an online relationship has bloomed into a lifelong friendship and connection between the two families who met in August 2013 and have plans to do the same this summer.

For Traci, being a marrow donor completes her mission to honor her daughter’s journey. “When I think about Jeremy, I am overwhelmed with gratitude,” she said. “Gratitude for being his match, gratitude that Jeremy, just like Camden, gets to live his life. Gratitude that I will be part of it and that I was able to give him part of me. I love him.”

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.

“If I knew it was that easy, I would donate every week if I could” – Darrell’s Donation Story

Posted November 1st, 2013 by Be The Match and filed in Donor Stories
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Darrell donorFour years after joining the Be The Match Registry®, Darrell received a call from Be The Match® with the exciting news that he was a potential match for a patient.

Support from family and friends

Knowing little about the donation process, Darrell turned to his family and friends for support. They were thrilled to hear he was a potential match, but at the same time, were shocked that he and other marrow donors could be so giving to complete strangers.

After speaking with representatives from Be The Match and learning more about the two types of donation, bone marrow and peripheral blood stem cells (PBSC), Darrell’s supporters encouraged him to move forward with additional testing. Test results came back stating that Darrell was, indeed, a perfect match for his recipient, and he soon found out he would be donating to an elderly male with lymphoma.

The first donation – PBSC

Darrell’s first donation was in 2007, when he donated PBSC. Before his donation, Darrell had only seen medical procedures on TV, or had heard about them in his work as a pharmacist, so he was understandably a bit nervous. “It was intimidating to think that I was donating to someone and I had no idea who they were” said Darrell, “but I would hope that if I were ever in that situation that someone else would do that for me.”

For five days leading up to the PBSC donation, Darrell received injections of a drug called filgrastim. This is given prior to every PBSC donation in order to increase the number of blood-forming cells in the bloodstream. As a result of the filgrastim injections, he experienced moderate bone pain and headaches, but claims that it was nothing compared to what his recipient was going through.

After donation, Darrell explained that “it was less painful than I thought it would be” and his recovery went smoothly.

The second donation – Marrow

Five years after his first donation, Darrell was found to be a match again—this time, for a 16-year-old boy diagnosed with leukemia. For this donation, Darrell was asked to donate marrow, a surgical outpatient procedure where liquid marrow is extracted from the pelvic bone. Marrow donation was the first time Darrell had ever experienced anesthesia. “I was educated step-by-step what the procedure would be like and any questions or concerns I had were quickly answered” said Darrell. This allowed him to go into the donation with confidence. Once his donation was complete, Darrell experienced slight tenderness in his back for two days and was then able to return to his everyday routine.

Although Darrell has never met either of his recipients, he recently received an update that both are doing well. “It was a very surreal experience” said Darrell. “Although I could be walking down the street next to one of my recipients and not even know, I am glad I joined the registry. It was a very positive experience.”

Darrell’s Advice to Others

Looking back on both donation experiences, Darrell is overjoyed. He shares his story proudly and encourages others to learn more about joining Be The Match Registry. “The more people you can let know about this cause, the better” said Darrell. “If I knew it was going to be that easy, I would donate every week if I could!”

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.

Dwight’s Donation Story

Posted July 2nd, 2012 by Be The Match and filed in Donor Stories
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Dwight donated peripheral blood stem cells (PBSC) in 2000Dwight’s donation story begins in 1991 while working in a hospital laboratory.  After drawing blood from potential donors who wanted to join the Be The Match Registry®, he was inspired to join himself.  Not long after, a cousin with Leukemia required a bone marrow transplant to live. While Dwight was not an HLA match, their family was able to find a match with an unrelated donor on the Be The Match Registry. Dwight, a medical technologist of more than 25 years, was grateful for this stranger’s gift and became hopeful that one day he also could save a life through marrow donation.

The call and family support

It wasn’t until the summer of 2000 that Dwight was called as a potential match for a patient. After completing further confirmatory blood tests, Dwight was told that he was the best possible match for a woman, and that he would be donating peripheral blood stem cells (PBSC)—one of the two methods of donation. “When I was chosen, I wanted to both yell and cry for joy for what I could do for this patient,” said Dwight. Family, friends, church, work—everyone was very supportive of Dwight’s decision to donate.  During his confirmatory blood testing, he tried to lighten the mood by singing, “stem cell man, stem cell man, I wanna be a stem cell man!”  Prior to Dwight’s donation, his colleagues even gave him a “Stem Cell Man” t-shirt to acknowledge the importance of his gift. Dwight was able to bring his family to the donation center to share in the experience and to support him through the donation.

The PBSC donation process

PBSC donation is a nonsurgical procedure (much like donating plasma or blood) that takes place in a blood center or outpatient hospital unit. On the four days leading up to Dwight’s donation and on his donation day, Dwight was given injections of a drug called filgrastim to stimulate stem cell growth. This is a part of all PBSC donations. “On the second day of injections,” said Dwight, “I could actually feel the stem cells multiplying!”

During the PBSC donation, Dwight’s blood was removed through a needle in one arm and passed through a machine that separated out the blood-forming cells. Dwight’s remaining blood was returned through his other arm. Typically, a donor’s blood-forming cells are back to their normal levels within 4 to 6 weeks.

Dwight’s message to registry members

“Don’t lose hope that you might donate some day,” said Dwight. “It may never come, it may come tomorrow—but it’s important to keep your contact information updated so you can be contacted if you’re a match.”


Editor’s note:
The patient who received Dwight’s stem cells passed away just under a year after her transplant. Dwight still sees his donation as a positive experience today because he was able to give the patient hope and time. He would donate again in a heartbeat.

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

Craig Ruhoff’s donation opportunity came quickly

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Craig Ruhoff, who graduates this May from St. John’s University in Minnesota, joined the Be The Match Registry® last year at a local fundraising race, the Fool’s Five Road Race, in Lewiston, Minn. Only four months later, he was called as a match and donated to a 16-year-old boy. At this year’s Fool’s Five race, he encouraged others to join the registry by sharing his donation experience.

This is Craig’s story.

It started with a race
I’ve participated in the Fool’s Five as long as I can remember. My mom had cancer when I was 8 or 9, so it’s always been something big for my family to take part in. It’s a big cancer benefit and the community raises lots of money.

Last year was the first year the Be The Match Registry was at the race. My cousin and I were walking around and saw the table. We got a little more information and we both signed up.

Four months later — a match
When I was called, it was exciting, but a little nerve-racking, too, because I hadn’t really looked into the process. I was told I was a potential match for a sixteen-year-old boy, so I went in for more testing. A week later, I learned I was a perfect match.

When they asked if I was willing to go forward, there was no way I could say no. It’s a pretty awesome responsibility.

The donation process
(Note: Craig donated peripheral blood stem cells (PBSC). To learn about PBSC donation, see the PBSC donation process video.)

In between my class schedule, I would drive down to Minneapolis for the physical and the bloodwork, and then for my first shot of filgrastim. The next three days, a home nurse came to my house at school to give me the shots.

They said that I might feel achy from the shots, but it was nothing severe. I was working out, lifting weights, so I couldn’t tell if I was aching from that or from the shots.

For my donation, I was hooked up to the machine for eight hours. It got uncomfortable towards the end, but my parents were there and a nurse took care of everything I needed.

As soon as I was done, someone put my donation in a cooler and took it away to wherever it was going. It all went as smoothly as I could hope.

Volunteering
Because I was able to donate, I decided to help recruit potential donors at the Fool’s Five race this year.

A lot of people came up to me to talk about my donation experience. I was able to answer questions and reassure people who had reservations. We signed up another 101 people this year, so it was a pretty neat experience.

What I tell people

A small commitment can make such a large impact. It was two days out of my schedule and an essentially painless process. But it made a huge impact for a teenage boy, maybe saved his life. It’s nothing anyone should be afraid of.

Look into donating and get on the registry.

Update December 2010: Many Be The Match Registry members who read this story asked us why they hadn’t been called to donate after years on the registry. Unfortunately we can’t predict when – or whether – any individual will be asked to donate. On average, about one in 200 registry members goes on to donate. You could be a match for a patient tomorrow, or many years after joining, or you may never be a match.  A patient’s body will only accept marrow that closely matches the patient, and the system of markers being matched for transplant is much more complex than a blood type.