Hope became reality with the help of a German teenager. Through Be The Match®, Tobias Hoffman, 19, was identified as a bone marrow match for Betsy. That’s because Be The Match® partners with other international registries to give patients access to approximately 19 million donors and nearly 600,000 umbilical cord blood units worldwide.
Betsy received her transplant at the University of Minnesota in 2005, and has been cancer-free ever since.
Today, Betsy is healthy and leading an active life with her husband and their young daughters. Still, she hasn’t forgotten about the people who helped her. She had the opportunity to thank Hoffman in person and has reached out to Be The Match to help provide this life-saving gift to others. Betsy has logged hundreds of volunteer hours raising awareness about the importance of bone marrow donation, educating patients and recruiting donors to join the registry.
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.
After taking a personal interest in organ donation, Facebook CEO Mark Zuckerberg announced that organ donors can now add their organ donation status as a Facebook Life Event. Did you know that you can easily add your Be The Match Registry commitment on Facebook too? Here’s how:
Save the image below to your computer.
From your personal Facebook timeline page:
- Click Life Event in the status update window at the top of your timeline
- Select Health & Wellness
- Select Other Life Event
- Title the event Joined Be The Match Registry as a potential Marrow Donor
- Upload the Be The Match image from above (right click to save
- Insert the date you joined the registry – if you are unsure, please call us at 1-800-MARROW2
- Add the location and a line or two about your story (optional)
- For donor/patient confidentiality reasons, please don’t post your donation date if you have donated marrow or PBSC.
Note: As with some personal information on Facebook, this Life Event status can be kept private or shared publicly or only with friends. In order to share this Life Event, you need to upgrade to Facebook timeline. To get started go to the Introducing Timeline page and click Get It Now. Learn more about upgrading.
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.
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.
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.
Patrick Abdul was a leader in Wagner College football team’s “Get in the Game. Save a Life” marrow donor recruitment campaign in 2008. Their efforts added more than 200 students to the Be The Match Registry.
Two of those students have already been called as a possible
match. One of them was Patrick.
A two-year-old patient
Patrick went on to donate to a two-year-old boy with anemia. “The future for that two-year-old little boy hopefully is long and healthy,” says Patrick.
He hopes that his recipient “gets to do everything that I was able to do as a kid, with no health problems.… And grows up to play football, to be a strong guy like me,” he adds with a smile.
The chance to save a life
The chance to save a life meant a lot to Patrick. He was happy to be part of his team’s community service event adding people to the registry, but he didn’t give it much thought. When he learned he was a match, it really hit home for him that this was something real, something that mattered. He could actually be the one to save another person’s life. It was a great feeling.
The donation process
He donated peripheral blood stem cells (PBSC), which required getting shots of a drug called filgrastim for five days. The filgrastim moves more blood-forming cells into the bloodstream where they can be collected for transplant.
- To learn more about donating PBSC, watch the PBSC donation video >
“I’m not going to lie,” says Patrick. The side effects of the shots felt like getting the flu.
“So that wasn’t too pleasant. But it was only for five days, and you’re giving someone a lifetime. It was 100% worth it to me.”
Patrick is featured near the end of the new “Get in the Game” video made to inspire coaches and players to get involved in adding donors to Be The Match Registry.
Just click the Share button and select the site you want or copy the embed code. Add the
widget to your Facebook page, your Twitter account, your blog or wherever you are active
online and spread the word about the critical need for more bone marrow donors.
Visit http://bit.ly/du4aw6 for more on the Do Something Big campaign.
Guy took his commitment to the registry just as seriously as he took his friendship. In 2004, he donated marrow to save the life of a young man he didn’t know. “I gave out of the original intent I joined for—that was for a friend of mine,” Guy said.
Five years later, he met Mark Schuh, the young man whose life he’d saved.
My Life-Saving Pledge
As a Member of the Be The Match Registry
I understand that:
- By joining the registry, I am saying I am willing to donate to any patient in need.
- The cheek swab or blood sample I gave when I joined was only used to add me to the registry. It was not a donation for a patient.
- I will be listed on the registry until I am 61, unless I inform Be The Match that I’m unwilling or unable to donate.
If I match a patient:
- I will respond quickly.
- I will be asked to give a blood sample for further testing.
- I will be asked to make a time commitment of up to 30 to 40 hours over a 4- to 6-week period to attend appointments and donate.
- If I donate peripheral blood stem cells (PBSC), I will receive injections of a drug to increase the number of blood-forming cells in my bloodstream.
- If I donate marrow, anesthesia will be used.
I promise to:
- Keep my Be The Match contact information up to date.
-> Update your contact information
- Share my decision to join the registry with family and friends so I have their support if called as a match.
-> Share your pledge on Facebook, Twitter and Pinterest using the buttons at the upper right.
-> Post the “I Joined” badge to your web page.