May 12 09

A “Shout Out” for Bone Marrow and Stem Cell Donation!

 

heart-1-design

 

What do bone marrow/stem cell donation have to do with the above quilt photo? Absolutely nothing! Now don’t panic…this has always been a quilting blog and it will always be a quilting blog. I only rarely post about anything in my personal life. But, I had such an incredible experience last week that I just have to share it here. Fear not, though, because I promise to pepper this post with quilt pictures to make it worth your while!

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(See…I told you I’d throw in a lot of quilt pictures! Keep reading…)

Many, many years ago, Ern and I got our tissue typing done so we could be part of the national marrow registry. For a few weeks afterward, every time the phone rang, we were just sure that it was a call telling us that one of us was a match for some unfortunate soul in need of a bone marrow transplant-we were ready to save all kinds of lives! Of course, that call never did come, and truthfully, we pretty much forgot about it. Fast forward to a few months ago, and wouldn’t you know that I finally got that call, telling me I was a preliminary match for a 32 year old man with a non-Hodgkin’s Lymphoma who needed a bone marrow transplant. I went for some additional tests that showed I was a really good match for him. No date was set for anything; I was just kind of “on call,” and many weeks passed.

 

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During this time, I had a lot of time to think about this anonymous man. I kept thinking that he could just as well have been my husband, one of my brothers, my sister, my…as you can guess, this list could just go on and on with the name of every relative I have or friend that I love. Is there anyone reading this now who doesn’t have many friends/relatives that have had to fight a battle with cancer? The point is that it really struck me how any one of us can be stricken with cancer at any time, and when it happens to a loved one, you’d do just about anything to help that person out, to make it all go away. And if you couldn’t be the one to make it all “go away,” you’d sure be praying that some stranger could. The more I thought about it, the more strongly I felt that I wanted and needed to do this. Honestly, I felt incredibly lucky, even empowered, that I could help someone in such a huge and intimate way.

 

Pansy-wallhanging

 

Then one day while I was at work, I got a phone call from the marrow registry telling me they wanted to set up a date for the donation because the transplant was scheduled for the first week in May! This was really going to happen! Those of you that are long time readers of this blog know that I work at my local community hospice. That same afternoon, two of the patients I visited were dying of non-Hodgkin’s Lymphoma. One was many years younger than me, and the other was just a few years older than me; each of them was far too young to be dying. The whole time I was with each of them, I kept wondering, “what if someone had been able to help one of them with a transplant?” It sounds corny, but it all just made me feel more passionate about helping this man I did not even know, yet in a way, I felt so very close to him.

 

butterfly-flightpath2

 

Hematopoetic stem cells are what is transplanted in a bone marrow transplant. These big words describe some very special cells that live in the bone marrow, and have the potential to develop into all kinds of blood cells, like red blood cells, different kinds of white blood cells, and platelets. (These are different from the embryonic stem cells we read so much about-those are even MORE special because they can evolve into many things). These blood stem cells can be obtained by withdrawing marrow from a person’s hip; or by a procedure called peripheral blood stem cell donation where an individual is connected to a special machine that withdraws blood and filters off the stem cells and then returns blood back to the person’s arm; or they can be obtained from umbilical cord blood. The transplant doctor decides which route to use and for me, this was the peripheral blood stem cell donation. I’m pretty sure that currently, this is the most widely used method of obtaining stem cells and that’s kind of nice, because it’s much easier on the donor.

 

sprouts-of-sunshine-whole-quilt-finished

 

I received injections for 5 days before the procedure to stimulate my bone marrow to make millions and millions of stem cells, so many stem cells that my bone marrow couldn’t contain them and they were dumped out in my bloodstream. (That’s good, because they’re easy to harvest there!) I flew to Virginia last week and got hooked up to an apheresis machine and made my donation. The whole process, from the injections to making the donation, went perfectly. A transplant nurse coordinator guided me through the entire process and was available by phone 24 hours a day if I had questions or needed some kind of help. I felt great the entire time and was able to do all my normal activities. Honestly, the hardest part of the whole process was having to hold one of my arms straight for many hours!

 

tulips

 

Now, I don’t normally blog about my personal life because I figure that everyone’s reading this blog for quilting inspiration and I don’t want to interfere with that. But, this whole experience, being able to possibly help save someone’s life, is huge to me and I feel really great about it! Truthfully, the timing of all this was really terrible, (I mean, for crying out loud, this all happened the week before International Spring Quilt Market, and Ern and I have about 10 million things to do!), yet I am so grateful to have had this opportunity and would do it again in a minute! This entire program is built around the concept of perfect strangers reaching out to one another in a time of great need. Can you think of any more beautiful way for us to express our humanity?

yellow-scrap-flower-without-detail

 

So, I’m sharing this with you all in the hopes that maybe I can inspire some of you to sign up as potential donors and get yourselves into the national marrow registry. I meet a lot of quilters when I travel and teach, and quilters have big hearts! Let’s face it, we keep churning out these quilts so we can wrap people with love, so who would make better marrow donors than quilters?! Each of us, in our lifetime, is given a few special opportunities to really make a profound difference in someone’s life, and this is one opportunity you will not have unless you get yourself registered as a donor. Think of how you would feel if you just learned that your son or daughter had leukemia or a lymphoma and his/her only chance for survival was a bone marrow transplant. That’s a pretty heart-breaking thought, isn’t it? This is your opportunity to “pay it forward,” and help another mom out there who might be about to lose her child. Think about it.

During the month of June, you’ll be able to get tissue typed (this involves only swabbing the inside of your cheek with a cotton swab) in the privacy of your own home and best of all, it will be FREE! I don’t know the details yet, but I’ll post details and links later on this month when I learn them. In the meantime, please give this some thought. Remember, you just might save someone’s life!

If you’ve gotten this far in the post and you’re still reading, my thanks and gratitude go out to you and as a reward, I’m going to offer a give-away of a free DVD of your choice, (this could be a single DVD or a 2-disc set…the winner gets to decide!). Anyone who posts a comment to this post before 9am on Wed 5/20 will be eligible for that free DVD drawing! Good luck, and thanks again for reading about this!

 

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If you’re interested and want more info about bone marrow donation, please go here. Check out my blog later this month for more details on registering in the “Be The Match” program for free, and in the meantime, say a special prayer for my bone marrow buddy!

P.S. We leave for the International Spring Quilt Market tomorrow, and I’ll try to get some pics of all the quilting action! Any orders placed in our store after 10:00 am Wed 5/13 won’t ship out until Tues 5/19/09. Enjoy your week!

144 Comments

  1. Barbara Walsh Says:

    Patsy. Love your story, love your quilting. Last year for Mother’s Day I asked my husband to join the bone marrow registry with me. So easy and now we just wait for our phone call.
    Linked over from Judy L. she mentioned you quilt with a pfaff. I am a new pfaff owner and hoping to one day quilt those tops I keep making. So much to learn!!!

  2. Diana Wilson Says:

    I , like many others, have come from Judy L’s site. You are correct about how good it feels to really help someone. You probably saved a life. God Bless!

  3. Carol G. Says:

    Your generosity (and quilting!) is inspiring. I’m so glad I found your site through Judy L.’s blog. I’m enjoying spending some time with you!

  4. susan r Says:

    This is my first time reading your blog. I followed the link from Judy’s site and now have to go back and read older posts. Your quilt pictures are very impressive but your generosity in donating stem cells is even more impressive! That is a wonderful gift you are giving to a total stranger. I signed up for the donor list some years ago and have never been called. Good luck with the procedure and my prayers will be with you and the receipent.
    Susan R.

  5. Karen S Says:

    What a wonderful gift you have given!! Truely an inspiring story.

  6. Linda Says:

    Wow, what an impact! I thought bone marrow donation was a horribly painful procedure. Will you get info on your new “friend”? Probably not, but it would be nice to know how he is doing

  7. Mary Jo Says:

    I would love to win one of your DVDS. I have several and LOVE them.
    I hope many people will be inspired by it to register with the bone marrow registry.

  8. Kari Says:

    Many blessings to you and thanks for sharing both your talents and your heart!

  9. Mariel Says:

    Bone marrow is truly a gift of life. What a wonderful feeling to know you have saved a life! May God bless you for your wonderful act of kindness. I hope many others will follow your example.

  10. Kristie Says:

    Patsy – Please post the information about the free swabbing. I’d definitely do it!

  11. Deb S Says:

    Thanks for sharing ! When I was much younger, I worked in the Atlantic City casinos. I wasn’t married, didn’t have children, had no cares in the world. Then there was a bone marrow donor drive. Out of the 100’s and 100’s of people that worked, only 5 of us signed up. To thank us, Donald Trump sent us via limo complete with snacks, soda bar, the works. We got to take an entire day off work (with pay) and it really didn’t hurt one bit. I’m assuming that if there is ever a match, they’ll be able to track me down pretty easily – but I guess I should check into it since my name has changed. Donald Trump might be a pretty hard boss to work for, but he has a huge heart of gold as well.

  12. Linda D Says:

    I really learned a lot from your post I look forward to learning how I can register.

  13. Marla Southers Says:

    I came her from Judy’s Patchwork Times and was honored to be able to read what you have been doing. You are a true inspiration. I have been a nurse for …let’s just say more years than I want to count and have worked with many cancer patients. My own sister in law is currently going thru this same horrible disease and will be getting bone marrow transplants too. I am thinking who every the person is who has donated for her could be a person just like you. Thank you!

  14. Cherie Moore Says:

    They had a drive for the bone marrow registry at Washington University Medical School in St Louis where I worked. Since it was free, I signed up and like you, it’s been years and I’d almost forgotten about it until I read your blog. Maybe my chance will come soon.

  15. Cherie Moore Says:

    They had a drive for the bone marrow registry at Washington University Medical School in St Louis where I work. Since it was free, I signed up and like you, it’s been years and I’d almost forgotten about it until I read your blog. Maybe my chance will come soon.

  16. Laurie Stone Says:

    Thanks for posting this I will look for the information about the June registry.

  17. Kay Says:

    I registered years ago, but was never called. Alas, I’m too old now to donate, but have always wished that I had been called.

  18. Meredith P Says:

    I registered years ago, but have never gotten the call. Also I donate blood. Thanks for writing about this important issue. And have fun at the market. Hope your donee does well!

  19. Sharon Engel Says:

    I have a cousin that just passed away from non-Hodgkins Lymth. He was only 54 and none of us matched him. Hard to believe. Thank you for helping one person. He will be grateful.

    Sharon in Colorado

  20. Joanne Says:

    I was typed years ago like you and am still waiting for that call — but I thank you personally for doing this. My son has brain cancer and cannot be helped by marrow donations, but I’ve seen other brain cancer patients that have been helped by platelet donation — and I do the apheresis about every other month when the blood bank calls. I like to think I help someone get through a tough time and maybe ease the discomfort a little bit.

  21. Carmen Says:

    Wow, what a wonderful thing you did for a complete stranger. I had a kidney transplant 2 1/2 years ago. Luckily my sister was able to be my donor. Organ, tissue, blood donors are heroes. YOU ARE A HERO!!!!

  22. quiltmom( Anna) Says:

    Hi Patsy,
    Thanks for sharing your story- Your work in this area is very much appreciated. I am sure that your help with this important cause is making a difference.
    Regards from a Western Canadian Quilter,
    Anna

  23. Howdy Says:

    I registered in 1996 and last week I received a letter from the National Registry requesting I update my contact information since I moved last year. I would hate to think I had missed an opportunity to help because they couldn’t find me.

    Thank you for sharing your story and encouraging folks to register.

  24. Suzette Harris/swooze Says:

    How wonderful of you. My hubby is on the transplant list for a liver. The list isn’t that long for a major metropolitan area and I always wonder what if…. What if more people donated their organs. I will watch for your post and check into donating. Thanks for the inspiration.

  25. Sherry Says:

    I have always wanted to get on the National Registry but have never been able to do it because of the cost involved. Since it is free for the month of June, I would like to get registered. Will look for more information when you can post it. I have donated blood several times when I could and now try to donate every
    two months. Thank you for your generosity to a stranger and the opportunity for all of your blog readers and fellow quilters to do the same.

  26. Barbara Green Says:

    Patsy, I have a friend who’s alive because of a bone marrow (stem cell) transplant, so my hat is off to you for your donation.

    Barb in MI

  27. Terry D. Says:

    Very inspiring story. I like it when you add a little personal information to your blog.

  28. Tracey Brown Says:

    Oh gosh, what an incredible feeling that must be! My Dad has stage 4 cancer right now and when he was diagnosed last week the first thing I said was “find out if bone marrow transplant is a good option, and I will do it”, but sadly, not an option for my dad. However, DH and I have both decided to register as bone marrow donors. So I’m happy to hear that I can register in June without having to pay the fee, and I will definitely be watching your posts for the details!

  29. floribunda Says:

    thanks for this post — I’m so glad you did this and that you wrote about it!

  30. Sheila Says:

    Thanks for the reminder, Patsy. As I read your your story it occurred to me that most of us are suffering from ‘brain overload’ and must be reminded that we can do this, and it may really help someone. I am going to contact the bone marrow National Registry and ask if they schedule any bone marrow drives/testing, similar to the Red Cross Blood Drives. People will participate if they aware of the event, the location is convenient and the cost reasonable. Blood drives held at workplaces are extremely successful. Although this may not be an innovative approach I can’t think of a better way to remind each other.

  31. Lisa Says:

    I’ve been on the registry for years but haven’t been called yet. I was a pediatric oncology nurse for 8 years and took care of many children having transplants and I guarantee there is a familly very grateful to you. Good job!! Gorgeous quilt too!

  32. Deb Says:

    Thank you for doing it. and for posting the site.

    I was once called but they could not accept mine, due to my being extremely obese. I have since lost over 150 lb but I did not know how to get back on the list. Thank you

  33. Marge Says:

    Reading your story brought tears to my eyes. I have some idea of how you felt. A very close friend of my son, age 24, had lupus which had destroyed her kidneys. I offered to go for testing to see if I was compatible, but I wasn’t. Melissa went on to have a transplant, and she’s doing super! The donation people saved my information so that I could be called if they have a need. What started out as something I would do for a friend of my son now is much more involved. I am proud of being on the list.

  34. Sarah Norman Says:

    Thank you for sharing your wonderful story!

  35. Kathy Luhn Says:

    What an inspiration you are! Thank you for telling your story! And your quilts are absolutely gorgeous.

  36. Sue Ellen Romanowski Says:

    Bravo Patsy! What an inspirational story.
    You looked great at market, full of energy with the big smile we have grown to love. I got the new feathers 2 video and began watching it this morning – another great one.
    Thank You!

  37. Darlene B Says:

    Wow, what a story….my nephew actually had non-Hodgkins lymphoma a couple years ago and is doing great. I think I will check out the link about getting on the registry. Thanks so much!

  38. Sarah Vee Says:

    Judy sent me here! I don’t even care if I’ve missed the cutoff for the giveaway (a great one though). Thank you for sharing this story. Thank you for all the effort of generously giving of yourself – even if events unfold in the busiest pre-market season. I love to hear about ‘good’ news – where humanity prevails! Thanks again for sharing. I loved the quilt photos too.

  39. Dorothy Says:

    It is 12:00 noon MDT, but that is okay, as I would still post if I was a week late! I have been on the registry for about 10 years and no calls yet. Maybe someday!

  40. Mary Stori Says:

    I see lots of folks are posting…..beyond the giveaway date……this just proves what big hearts quilters have. We really do care about each other. From someone who also donated stem cells I want to encourage all of you to get tested and give the chance of life to someone!

  41. Patty Schroder Says:

    Loved your quilt photos. God bless you and Ernie. I have all your DVDs and I watch them over and over. Thanks for your encouragement, still practicing!!

  42. jo anne Says:

    God Bless You and your Stranger! If I thought your instructional dvd’s were inspirational and instilled in me to quilt my own quilts, you can imagine my surprise to see your blog and to shed tears of gratitude and humbleness at the selflessness to your stranger. Prayers to you both.

  43. Linda B. Says:

    How fortunate for you and the young man in need that you were registered! Bless you a million times over!

  44. Marrow-thon! « Says:

    […] marrow and writes about the importance of marrow donation far more eloquently than I ever could. It’s well worth a read. Possibly related posts: (automatically generated)Not Tested Yet? Community Bone Marrow Donor Drive […]