Real Life Heroines: A Be the Match Donation Registry Experience

A couple of years ago, I had the pleasure of meeting American resident Tracy Hansen during a cruise of the Galapagos. We quickly hit it off and have remained friends. Recently, Tracy did something she probably doesn’t consider heroic at all, because what true-life hero considers themselves heroic? No, they’re just doing something that in their minds needs to be done. Tracy donated her marrow to a fellow human being suffering from leukemia. I don’t know about you, but I consider that pretty darn heroic! One of my aunts has a rare blood disorder that mimics leukemia in some ways, but is not cancer (I don’t even know the name of the disease, just that she has it and has survived all the members of her original support group, including the doctor who started the support group). This aunt, now in her early seventies, has required several blood transfusions over a span of decades, and she definitely relies on heroes and heroines like Tracy willing to donate their blood, or marrow, or whatever necessary.

Tracy posted her story on Facebook and gave me permission to reprint her experience on my blog. If you are inspired by Tracy’s story, please consider registering for the U.S. National Donor Program’s Be the Match Registry. Canada has a similar registry called OneMatch Stem Cell and Marrow Network

Tracy’s Story:

TracyHansenDonationA little over a month ago, I donated marrow to an adult female with leukemia. I thought that I would share my experience in hopes of someone else signing up to be a donor and, hopefully someday, having the opportunity to potentially save a life of someone in need of a transplant.

My journey started almost 19 years ago when I signed up for the National Donor Program’s ‘Be the Match Registry’. It was so long ago that I can’t remember for sure, but I think that they just took some extra blood during one of my regular blood donations to send off to the Registry. Now, all they do is take a cheek swab.

Fast forward to early 2014… I received an e-mail from the Be the Match Registry notifying me that I was a potential match for a specific patient. It had been so long that I had forgotten that I even signed up. I called the Registry and told them that I was still willing to donate. I went through a fairly comprehensive set of questions over the phone that day, where they tried to determine if there were any obvious reasons that I would not be eligible to donate – the same set of questions I would have to answer several more times throughout the process. There were possibly other potential donors going through the same process for the same patient.

A few weeks later, I got another call from the Registry asking permission to do further testing on my sample that they had from 19 years ago, which I (of course) agreed to. This step was to get a better idea if I was a close match. Two months later I received another call that my 19 year old sample showed that I was a close match. The next step involved additional blood testing. I went to a lab close to my home where they took around 15 vials of blood. That may sound like a lot but it was one poke in the arm and I was in and out in less than 10 minutes. These vials were sent off to test my current blood for all sorts of things, including determining if I was the best match for the patient. Then, more waiting…

A month later, I got THE call. I was the best match for this woman. I needed to go through final testing (more blood testing, an EKG, chest x-rays and a physical) but, barring any issues found during that final test, they asked me if I was willing to donate about a month later. I would be donating peripheral blood stem cells (PBSC), which is a much easier process than a bone marrow donation. Most donations today are PBSC rather than bone marrow.

I received an injection of a special drug each day for the 4 days leading up to my donation day. This drug helps release stem cells from my bone marrow into my blood stream so that that they can collect them through apheresis. On the first injection day, they drew a couple of vials of blood to get my starting counts. The injections themselves were basically painless but starting day 3, my bones got a little achy. Nothing horrible, I just had to stand up or sit down slowly. That achiness went away as soon as I stopped getting the injections.

On donation day, they took 2 more vials of blood to get my ending counts so that they could make sure that I had enough stem cells floating around in my blood for a successful donation. They normally do a final injection on donation day but I had so many stem cells in my blood that I didn’t need the last injection. For the donation itself, they inserted a needle in the crook of my left arm where they would draw the blood out. They inserted another needle in my right wrist where they would return my blood after it went through the apheresis machine and removed my PBSCs. I had to sit/lie in a hospital bed for about 6 hours. I couldn’t move my left arm but I was free to move might right arm. It was a little hard to lay there for 6 hours but I had a book and I could watch movies if I had wanted. All in all, it was a relatively painless process.

So here is what I had to ‘give’ during my donation process:

– My initial sample, which is done as a cheek swab now
– About 2 hours of my time for various phone calls with the Registry throughout the entire process over 4 months
– Lots of waiting
– About 30 vials of blood (in total) for 2 sets of testing and 2 rounds of blood counts for the donation process.
– About 7 hours of my time for other testing to make sure that I was healthy enough to donate
– About 90 minutes of my time for injections over the course of 4 days leading up to donation day
– About 8 hours of my time on donation day
– And, most importantly, one bag of peripheral blood stem cells

I don’t know anything about the person that I donated to other than she needed a donation and did not have a match within her family. I do not (yet) know how well the patient is doing after receiving my donation. I should receive an update at 6 months and one year after donation. I may potentially find out who she is after one year, if she and I are both willing and if the country that she lives in allows that information to be shared. Either way, I hope she is well on her way to recovery.

I hope that by sharing my experience, at least one of you will consider signing up with Be the Match Registry (www.BeTheMatch.org) in hopes of making a donation in the future to potentially save someone’s life.

Be the Match (U.S.)

OneMatch (Canada)

Go forth and register! (This last from Cindy, whose writer’s mind is bubbling with possible story scenarios, but that’s another post).

BORROWING ALEX at Brenda Novak Diabetes Auction

New York Times Bestselling author Brenda Novak’s Annual Online Auction for Diabetes Research is now open for bidding and running until May 31st. As Brenda says,

All the proceeds of this fundraiser will go to benefit the Diabetes Research Institute, which is doing some phenomenal work. So many people’s lives are affected by this terrible disease–it’s one of our deadliest. So let’s join together and see it become a thing of the past–for my son and millions of others.

So far, we’ve raised over $2 million. Here’s hoping we can add another $500,000 to that total in 2014.

I’ve donated an eBook edition of BORROWING ALEX for inclusion in two multi-author auction items. The first is the Contemporary Romance Prize from Marcia James, which includes 12 dog-themed paperbacks and ebooks plus over 16 other pet-themed goodies. I’m joined in this package with authors Edie Ramer, Marcia James, Gemma Brocato, Dale Mayer, Barbara Raffin and Tori Scott. Every romance features a dog. In my case, there are two dogs in BORROWING ALEX.

BORROWING ALEX is also featured in the Curl Up With Romance package put together by Tonya Kappes. In this case, all the romances (two ebooks and two paperbacks) include cats, and my donation features a toothless Siamese cat named Rusty (long story). Other authors include Phoebe Conn, Lynn Hubbard and Grace Greene.

Go ahead, make a bid. It’s for a good cause! And there are tons of other auction items from which to choose.

Find Me at Table 802!

As I’m heading off to Anaheim for the RWA National Conference, I realized I might not get a chance to blog during the conference. But a quick heads-up that I’m signing copies of WHERE SHE BELONGS at the Annual Literacy Autographing. The tables aren’t in alphabetical order this year, so just remember (if you’re in the area and want to stop by to say hello) that I can be found at Table 802 along with Jane Porter (the other P in the bunch) as well as a few other authors with last names that don’t start with P. So if you see a long line forming in front of Jane’s station and no one standing in front of mine, pop over and say hello. I don’t bite!

Here’s the WWWW direct from RWA:

2012 “Readers for Life” Literacy Autographing

Wednesday, July 25, 5:00 – 8:00 p.m.

Anaheim Convention Center, Ballroom (third floor)

http://www.rwa.org/cs/literacy_autographing

Proceeds from book sales go to ProLiteracy Worldwide, Read Orange County, and Literacy Volunteers—Huntington Valley.

No outside books are allowed in the event.

Proofing and Literacy Autographing

The proofs for the audio book version of WHERE SHE BELONGS arrived in my in-box yesterday from AudioLark. I proofed four chapters right away, so am about 25% through. I’m really enjoying the audio book! The narrator, R.E. Chambliss, also narrated BORROWING ALEX. She did such a great job capturing the romantic comedy tone of BORROWING ALEX that I wondered how her narration of an emotional romance novel would compare. My verdict? R.E. is every bit as good at narrating serious, emotional stories as she is at narrating romcom. Jess, Adam, Nora (Jess’s mother), and the secondary characters are all coming alive for me. I think that’s what I love most about my novels being made into audio books–how they feel to “come alive.” It’s a different experience listening to a book you’ve published, and I am so pleased with the audio rendition thus far. I hope my readers (listeners?) will be, too.

As for the Five Star Expressions library-hardcover edition of WHERE SHE BELONGS, I’ve registered for the RWA National Conference in Anaheim this July. I signed up for the Librarians’ Luncheon on Wednesday, July 25th, and I just found out today that Five Star is donating a box of my books to the Literacy Autographing that will occur in the convention center next to the Conference hotel. So I’ll be signing copies of the book for the public.

I am excited about this. I have only signed as Cindy once before, and that was a long time ago, when HEAD OVER HEELS was first published. I donated ten of my own copies to the Autographing, however, because there wasn’t a box of books by my station, my name placard and place were removed. Then I arrived with my books in my arms, and the volunteers setting up the stations realized they’d made a mistake. There was no room for me in the Ps, so I sat at the end of a table in the Ms. I managed to sell all ten copies of HEAD OVER HEELS that I had brought along, but it was a little weird to be sitting among the Ms.

I have signed as Penny once, and the publisher in question always donates books to the Literacy Autographing. Apparently, they had donated a box of Penny’s books plus had stuffed two more copies into a box of another author’s books. Good thing they did, because the full box of books was nowhere to be found and all I had to sign were those two measly copies. I quickly “sold out,” heh heh, but stuck around to speak to readers regardless.

So…my third Literacy Autographing is approaching, and this time cross your fingers it goes off without a hitch!

Beagle Freedom Project

Thank you to an old family friend who alerted me to the Beagle Freedom Project. The video says it all. Beagles are loving, social animals. My girl, Allie McBeagle, craves human contact. I simply can not imagine her living her life in a crate. Beagles love “Snoopy dancing.” You know, the Peanuts Snoopy? Except real beagles don’t do it on their hind legs. They rub their backs all over the grass, they wiggle and squiggle, just like they’re dancing, but on their backs.

The beagles in the video were recently rescued from an animal-testing laboratory. Many have already been adopted, but some still need homes. Contact info is at the end of the video or can be found at the Beagle Freedom Project website.