The One

4 Apr

We finally found her. A 19 year-old woman from the states. My same weight and height. No pregnancies. A perfect 10 out of 10 match. I can tell already we’ll be BFFs or even BFFAEs. But to spice it up, my backup donor is a 20-something year-old international man. I’m hoping it’s Prince Harry. Since this is based on genetics, you’d think my donor theoretically should be a redhead, right?

Locking down a donor also means we have d-dates on the calendar. Barring complications (knock on wood), I’ll undergo the body of tests I spoke about in an earlier post next week. I’ll have surgery to get my hickman on April 21. The dosage for one of the icky chemo drugs I’ll be taking is touchy, so we’ll do a practice chemo on Friday, April 22. I’ll get Easter weekend at home, and then return to Mayo early Monday, April 25 to start my 8 days of grossly intensive chemo. I say “grossly intensive” because it’s different this time. Whereas the last time I had chemo – what I would guess most would call “grossly intensive” too – the goal was to kill cancer cells and at least try to keep everything else in good shape; now we’re just trying to kill it all. Bone marrow, immune system, the works. Fun.

Transplant day – Day 0 in doctor-speak – is set for May 4. My donor – who, by the way, gets to agree to this timeline – will donate that morning. They’ll fly the bone marrow to Mayo and I’ll receive it in the evening.

Hopefully my body will be tricked into thinking my donor and I are twins. According to Mayo Clinic Hematology Chair Dr. Dennis Gastineau, whom I met with last week, the exponential increase in the number of donors on the Registry is one of the biggest reasons behind the vastly improved patient outcomes for unrelated BMT patients in the last 10 years. I’m not exaggerating. Here’s the graph:

Source: Be The Match: Growth of Adult Donors

Scientists also are a lot more precise when it comes to HLA typing, the DNA criteria doctors use to pinpoint the best match. This has improved survival, reduced the incidence and severity of graft-versus-host disease, and improved engraftment. (Source: Be The Match: Advances in HLA Typing) Now doctors use 10 criteria to determine a match. Some years ago that number was eight. Maybe with more research that number will rise to 12. Be The Match has been able to keep up with these increased criteria because of its rising registrants.

But still, I need to hammer home that there was little doubt a freckle-faced girl like me would find a match. Again, it’s vital that we help Be The Match get more people of ethnic backgrounds to register, so they can have the same hope that I did in finding a soul mate. The chart below from Be The Match shows just how underrepresented some populations are in the Registry:

Source: Be The Match Media Fact Sheet

I’m so thankful to Powell Tate for making big strides in adding to these numbers last week. Not only that, but they’re really making me miss them. My mom and dad even miss them too. Check out this wonderful video they made for me at their Be The Match Registry Drive last week:


 

I can’t thank my donor enough. Being only 19 and on the Registry, she must have a reason to donate. If it’s mutually consensual, Be The Match connects you after one year. I really hope I can meet her. I’m smitten.

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32 Responses to “The One”

  1. Carly April 4, 2011 at 11:15 am #

    Wonderful news Jenna! I hope you get to meet your donor!

  2. Jenn Schaal April 4, 2011 at 11:33 am #

    So great, Jenna! She will be lucky to know you when you meet. (Fingers crossed!!)

    • Jenna Langer April 4, 2011 at 3:53 pm #

      Thanks, lady! I’ll be stopping by U of M Relay for Life for a few hours on Friday. I hope you’ll be making an appearance 🙂

  3. Clare April 4, 2011 at 12:53 pm #

    Awesome news! Go Be the Match Registry! I am marking May 4th on my calendar and will be thinking of you during all the days leading up to it. We got another 30 people signed up for the Registry Saturday at Ben’s Run, and raised $30K for Children’s National Medical Center’s Bone Marrow Transplant Fund–pretty cool! Hopefully it will help other kids just like Ben and you. Sending positive online vibes to you once again. Can you feel them?

    • Jenna Langer April 4, 2011 at 3:53 pm #

      Can totally feel them 🙂 You’re making such a difference, Clare. Thank you.

  4. Ann April 4, 2011 at 1:26 pm #

    Good post, Jenna, you make a great spokesperson! The chemo does sound gross. But we will do whatever we can to help you get through it – hopefully in time to experience some of this year’s dress season.

  5. Vicki April 4, 2011 at 2:56 pm #

    Wonderful news! In addition to this look how the registery has grown because of you. No telling how many people will be helped. Be The Match will be on our campus for 3 days later this month. Colleges Against Cancer in Huntsvile TX is telling your story and hopefully we will beat our previous record. As always sending good thoughts and BIG PRAYERS your way.

  6. Sarah Youngerman April 4, 2011 at 3:11 pm #

    Fantastic news… and nice to set it all in motion. Great to see you last week.

  7. shelley schugel April 4, 2011 at 3:13 pm #

    Hey Jenna,

    So glad you found your perfect match. Can you explain if you know when a person is the match what they go through. My daughter and I have been talking about doing this for a year but are scared. I know someone who’s sister was her donor and she had to do shots before. Could you explain how long it takes the donor and what they have to do when they find out they are the one.
    good luck , prayers are with you.

    • Jenna Langer April 4, 2011 at 3:55 pm #

      Shelly – you read my mind! I have a post in the works that addresses your questions. I’ll have it up within a week.

  8. Annette Rhein April 4, 2011 at 4:00 pm #

    We are so happy for you and wish you the best. You are in our thoughts and prayers!! I know your dad will keep us in the loop.

  9. Sarah April 4, 2011 at 5:37 pm #

    Yay! This is so exciting, Jenna! I hope you can take a break from the intensive chemo to watch the royal nuptials. Although I’m not your match, I hope I can be someone else’s match.

    Let me know if you have some spare time when you’re in Mpls this weekend. I’ll be around and would love to say hi.

    Cheers,
    Sarah

    • Jenna Langer April 5, 2011 at 6:23 pm #

      You should meet me at the Relay for Life! I’m not sure I’ll be in the Twin Cities long, but if you can’t make it Friday night maybe we can meet up. But you should come! Just call me.

  10. Sanyu Janardan April 4, 2011 at 6:00 pm #

    It makes my day to find out you have a perfect match! Thinking of you!

  11. Lori Thom April 4, 2011 at 6:59 pm #

    Jenna, GREAT news!! Everyone at Brown County will be thinking about you!! Lori Thom

  12. kat woodward April 4, 2011 at 7:07 pm #

    YAY i am super pumped for you 🙂

  13. Sharon Deutsch April 4, 2011 at 7:47 pm #

    That’s wonderful news, Jenna! I’m so happy for you. You’re doing a great job. Keep up the good work and you’ll kick MDS’ butt like none other. So proud of you!

    P.S. It sounds like you may be in the cities this weekend. Give me a call if you have some down time and would like to hang out. I’d love to see you!

    • Jenna Langer April 5, 2011 at 6:25 pm #

      You should come to Relay for Life at the U of M on Friday night! I’ll be going around 6:30 and staying a few hours. Otherwise I don’t think I’ll be in the Twin Cities long, but would love to see you! Just call me for details.

  14. Laura Schwarz April 4, 2011 at 8:55 pm #

    I’m really happy for you! Best of luck with the surgeries and chemo!

  15. nita seibel April 5, 2011 at 3:55 pm #

    Hi Jenna,
    That is terrific news about your donor match.

    • Jenna Langer April 5, 2011 at 6:25 pm #

      Thanks, Dr. Seibel! Definitely great news 🙂

  16. Sue Dommeyer April 5, 2011 at 4:19 pm #

    Great news! Thanks for all the updates. Been following you daily and think of you often. Grayson sends kisses!

    • Jenna Langer April 5, 2011 at 6:26 pm #

      I need to see you! This is ridiculous how long it has taken!

  17. Lindsey Dommeyer April 5, 2011 at 11:04 pm #

    So awesome to hear!!!!!! Love you Jenna <3. Also, just thought I'd finally tell you that your eloquent writing skills impress me in every post. Divine abilities you have ;].

  18. James Vancura April 6, 2011 at 7:02 pm #

    Nice Jen!

  19. Charlie Tucker April 7, 2011 at 7:43 pm #

    Way to be Jenna, keep it up. See you at Easter.

  20. Kirsten Lesak-Greenberg April 8, 2011 at 10:32 am #

    Woo!! Such good news! This is great to hear! 🙂

  21. Jacinta Sams April 12, 2011 at 11:39 pm #

    Hello Jenna, how are you? We don’t know each other but I came across your blog. Glad I did! My husband & best friend, Eric was diagnosed with Acute Myeloid Leukemia on May 27, 2010. We actually were on the highway in Wisconsin, heading home to Loves Park, IL, when we got the call from Mayo! They wanted us to turn around and come back. Our oldest daughter was graduating from high school, Saturday, so they said Monday morning. Eric went through aggresive chemotherapy. He was at Mayo for a month. A couple weeks later a bone marrow biopsy was done…remission!!! Being African-American, we had a long road ahead of us, in trying to find a match! UIC-Chicago found a perfect match on my birthday, November 30, 2010! Eric went into UIC on December 20th for chemo & radiation. On December 30th(his new birthday), Eric was transfused with the stem cells, a second chance at life, which we prayed for! My husband & best friend died February 23, 2011 at UIC, from stem-cell related complications. What God has put us through, has only made me stronger! We always thought positive, but we understood that complications could develop. When Eric, left this Earth for Heaven, I wasn’t bitter! I thanked his wonderful stem-cell transplant team. I also would love to still meet our, “Stem Cell Angel”! My Eric, may have passed, but I just wanna give her the biggest hug & kiss…& say Thank You!!! I would love to thank each and every donor, to give another person a 2nd chance at life….PRICELESS! At his memorial service, I didn’t want anything. I encouraged people to become bone marrow donors, donate blood, plasma & platelets at your local blood bank. I’m just so in awe of you, Jenna! Your spirit is awesome! Eventhough, my heart is broken but reading about you is such good healing for me! Jenna, you and your family will remain in my heart & prayers! I would love to meet you soon, God Bless!!!!! (Keep Smiling)

Trackbacks/Pingbacks

  1. Capable Hands « The Redhead Report - July 12, 2011

    […] patients are most likely to match someone of their own race or ethnic heritage. As I mentioned in a previous blog post, minorities have a particularly tough time finding a match. Of the 9 million people that make up […]

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