At a Loss For Words

I’ve been staring at a blank piece of paper on and off for two days and can’t quite come up with adequate words to thank a stranger for selflessly donating her bone marrow to my little sister.

I haven’t written about my 33-year-old sister’s diagnosis of ALL, a type of leukemia, back in late February of this year.  I alluded to it in one or two posts, but it was just too hard to write about her illness.  Maybe it was because her diagnosis came so close on the heels of our father’s 2003 diagnosis–and subsequent 5-year (successful and miraculous) battle–with Stage IV colon cancer, but I just wasn’t ready to journey down the path of hospitals, chemo, radiation, infections, and the emotional ups and downs again.

My sister and me–she’s the blondie–Christmas morning, 1979 or so.

Thankfully, we live close to one of the top five hospitals in the nation for treatment of leukemia, and her doctor actually took part in the development and trials of Gleevec, a medication that has proven successful in the treatment of certain types of leukemia.  Unfortunately, my sister’s leukemia wasn’t treatable through chemo, medication, or radiation alone; she required a bone marrow (or stem cell, as it is alternately know) transplant.

For a successful transplant, the donor marrow must match the patient’s marrow on a bevy of levels.  Biological siblings are the best bet for a successful match because they share the same parental DNA.  If there isn’t a sibling, or the sibling isn’t a match, there is a National Donor Registry where an unrelated donor may be found.

I was my sister’s only related-donor hope–it’s just the two of us–so I did a simple DNA test, swabbing the inside of my mouth for cheek cells, and sent it off to the lab.  There was an interminable two week wait for results.

For me, the lowest point of this entire ordeal was the day the transplant coordinator called to tell me I wasn’t a match for my sister–we only matched 50%.  Until then, I held on to the hope of being the match that would save my sister’s life.  After all, if I wasn’t a match, how could anyone else be?  (Typically, other blood relatives–cousins, aunts, etc–are not viable matches either.)

For many weeks, I carried intense guilt that my marrow could not save my sister.  I supported her emotionally, helped her with her son, visited her at the hospital, but the agony I felt by the genetic roll of the dice that made us mismatched was unparalleled.

And then, a few weeks later,  my sister got a phone call that literally changed her life.  Through the National Marrow Donor Program, two potential matches had been located and further tests were being conducted to determine the best donor.

On July 1, 2010, without much fanfare, an IV bag of two billion or so healthy stem cells from an unrelated and anonymous donor was pumped into my sister’s bloodstream over the course of a few hours.  My sister remained on the isolation floor of the hospital for almost the entire month of July to recover.

My sister’s bone marrow transplant…

My sister’s recovery has been long and not without challenges, but she has somehow managed to handle it with relative grace and aplomb.  As of today, her blood counts are in the normal range and her most recent bone marrow biopsy came back clean.  Her doctors won’t say she’s cured for 5 years, but she’s on the road to a healthy and long life.

And now we come to the crux of this story.  Yesterday she received a phone call from her doctor’s office informing her that her bone marrow donor wrote her a letter.  The donor/patient relationship is kept anonymous for anywhere for 1 to 5 years, but they allowed this letter because it was basically generic, with no personal information.  (The two doctors’ offices forward the correspondences from donor to patient and vice versa.)

The transplant coordinator told my sister that she could respond to the letter, and I asked if I could write to the woman, too.  I was given the green light but have been struggling with just what to say for two days.  How do you thank someone for a gift like this?  My sister isn’t just some anonymous leukemia patient, she’s a mother, daughter, sister, niece, cousin, and friend to so many.

The donor’s letter was one page, handwritten, and my sister sent me a copy.  It’s apparent that the letter was difficult for her to write as well:

I have tried countless times to write a letter to you…Today I found out that the transplant was successful.  I am unendingly happy and relieved.  Since I discovered in April that my stem cells were a match for someone–for you–not a day has gone by when I didn’t think about you and your family…The donation was absolutely no problem for me…and if you should need me once more–I am here!

I just keep rereading the letter and thinking about the needle-in-the-haystack chances of finding someone more genetically compatible with my sister than I am.  How can I relay the history my sister and I share–33 years of inside jokes, teenage angst, and the joy and pain that we have endured?

I want this woman to understand that the tests she underwent, decisions she may have wrangled with, and energy, time, and courage it took to donate her stem cells–possibly done in a way similar to donating blood*–will hopefully translate to many, many years of a healthy and happy life for my sister–years that would have been inconceivably long and punishing if my sister wasn’t here to enjoy them with me.

And that’s where I am right now, friends.  I’m sitting here at my laptop wishing, willing, this anonymous woman to somehow stumble upon this post and recognize herself as the donor.  If nothing else, writing this post has been cathartic, and I feel more confident about putting pen to paper and attempting to express my gratitude.

I’d also like to thank you, if you are a registered member of the National Marrow Donor Program, for joining with such a worthy program.  I am a registered member and would love to be the match for someone out there.  If you’re not registered, would you consider reading about what it takes by visiting National Marrow Donor Program’s websiteYou might have the marrow that could save a mother or father, a son or a daughter, a sister or a brother–not just some anonymous cancer patient.

*Several bone marrow donors have commented on this post and given perspective from their own experiences.  The way my sister’s doctors explained it to me may have inadvertently caused me to minimize some of the less pleasant aspects of donation while I wrote this post, but it was unintentional.  I’m still more than willing to undertake some discomfort or pain if it could potentially save someone’s life.

95 Comments

  • At 2010.12.09 21:37, Jenners said:

    I got so teary reading this post. I’m so so happy for you and your sister that this miracle came into your lives. What a wonderful person the donor was .. how selfless and generous. I think your post said it all … if nothing else, send her a link to this blog post. I think it says everything you could want to say.

    Talk about having a wonderful Christmas gift. And I will look into donating marrow. If I could help someone like this, it would be such a good thing.

    Hugs to you and your sister!
    Jenners´s last blog post ..Review- Red in the Flower Bed by Andrea Nepa

    • At 2010.12.10 09:23, Natalie said:

      jenners,

      i have to tell you that reading so many of the posts on your blog these last nine months really helped me out. your zany face-in-the-hole photos, your evolution of a nerd photo trail, and all your crazy comments and posts always put a smile on my face. bloggers like you and meg, ti, bermuda onion, and the countless others really helped me out!

      wishing your family a wonderful holiday season.

      xoxoxo
      nat

    • At 2010.12.09 22:19, APW said:

      I joined the registry in June and found out I was a match 6 weeks later before I even recieved my registry card. I have been working up to the donation since july and I finally donated just a few days ago. I donated through the PBSC way and I can tell you that everyone goes through the porcess differently. For me I experienced some intense back pain and muscle pain but it wasnt anything that I couldnt get thorugh. Not a day went by since july that I wasnt thinking about donating bone marrow or how I would be able to help someone else. The pain that I went through is nothing compared to the pain of loss of someones family member. I commend you on supporting your sister. I hope whe recovers well!

      • At 2010.12.10 09:25, Natalie said:

        how serendipitous that you should join and get a call so soon! thank you so much for sharing your story–i hope you are recovering and that your recipient is doing well.

        thank you so much for being so selfless; i wish you a long, healthy, and happy life!

      • At 2010.12.10 08:44, Natalie said:

        joe,
        thanks so much for sharing your story. i’ve been overwhelmed by the responses–especially from the donors–and people like you are the heroes of stories like mine.
        wishing you only good things!

        • At 2010.12.10 08:48, Natalie said:

          mike,
          i’m so happy to hear that you were a match for someone in need! it’s amazing to see all the donor feedback i’ve received on this post, and i’m sure this woman and her family are so thankful for your generous spirit and donation. i hope that you are feeling better each day and know that it’s people like you who make an immeasurable impact on families like mine. wishing you all the best!

          • At 2010.12.10 08:51, Natalie said:

            laurie,
            it’s it amazing to think that your donation will help ‘timmy’ see birthdays and milestones, live ordinary days and extraordinary ones? thank you so much for being a two-time donor–your marrow must be magic! my husband and i would love to be called to donate–it would be the ultimate act of ‘paying it forward’. wishing you only good things in your life.

            • At 2010.12.10 08:54, Natalie said:

              karen,
              i continue to marvel at the donor comments i’ve received on this post. to a donor’s friends, coworkers, or acquaintances, giving marrow might seem like a minor event when donors give marrow. if only those same people could see the impact your donation has on the recipient, his or her family, and friends. thank you so much for being such a selfless person. i sincerely wish you only good things and happiness.

              • At 2010.12.10 08:58, Natalie said:

                kristyn,

                i’m sorry to hear about your father’s passing. at any age, loss of a parent must be life changing. i hope that by joining the registry, you found a bit of solace. i can’t imagine how you must have felt hearing you were a potential match.

                as for blood and platelet donations, my family is so thankful for all those donors, too.

                thank you so much for your kind words, and i wish you only good things.

                • At 2010.12.10 09:00, Natalie said:

                  kevin,

                  thanks for your kind comment. it’s great to know that you’ve been on the registry for so long. i’m sad to think that i didn’t really know much about stem cell donation until recently, when it impacted me directly. i hope that you have a wonderful holiday season and wish you all the best.

                  • At 2010.12.10 09:02, Natalie said:

                    cassie,

                    wow, another donor with a great story. i’m sure that your recipient and her family are so thankful for your generous act. i hope that you hear good things from her in the future. 🙂 thanks for being a donor; people like you change lives like my sister’s.

                    • At 2010.12.10 09:07, Natalie said:

                      teri,

                      thank you so much for sharing your story. as difficult as this journey has been for your husband, i know what it’s like to stand by a your loved one and feel helpless, overwhelmed, exhausted, and at really dark moments, hopeless. your support is recognized!

                      how terrible it must have been to learn that no siblings were a match, but your family must be as thankful as mine that there are people out there who donate marrow for unrelated recipients.

                      i hope that your husband is feeling better and makes a full recovery. wishing you both all the best.

                      • At 2010.12.10 09:09, Natalie said:

                        nat,

                        thank you so much for your comment. it continues to amaze me that there are such selfless and generous people in this world, and i’m so thankful for them! i look forward to the day that we can meet my sister’s donor.

                        xoxo
                        nat

                        • At 2010.12.10 09:10, Natalie said:

                          tiffany,

                          i hope you are feeling stronger each day! i will share your comment and email with my sister, but i have to warn you that she’s as reticent as i am chatty! i’ll strongly encourage her to email you because it would be great for her to have a chance to speak to someone her own age who is going through a similar thing.

                          wishing you a speedy and full recovery. thanks for your comment.

                          • At 2010.12.10 09:14, Natalie said:

                            james,

                            thank you so much for sharing your personal experience with the donor program. i can’t imagine the desperation and helplessness that you were feeling when josh relapsed again and needed a transplant.

                            i’m so happy to hear that your son is in college and enjoying life. your letter to your donor was so beautiful!

                            we know all too well about GVHD but are just so thankful for the donor and her generosity. wishing your son a long and healthy life filled with good things. all the best to you and your family!

                            • At 2010.12.10 09:16, Natalie said:

                              meg,

                              as a big sister, you know exactly how i felt during these last nine months. as kids, i would go up against anyone who dared to even look cross-eyed at my sister, but this of course didn’t prevent ME from tormenting her. haha.

                              thank you for your kind words, and i’m wishing your family a happy and healthy holiday and new year.

                              xoxoxo
                              nat

                              • At 2010.12.10 09:18, Natalie said:

                                maggie,

                                your donation has undoubtedly made a huge impact on this young girl, and i hope that you hear from her soon! thank you so much for being such a special person and donating. i appreciate that you shared your story, and i wish you health and happiness always!

                                • At 2010.12.10 09:19, Natalie said:

                                  ti,

                                  thank you so much for your comment. it was hard for me to blog about books for the last nine months when my mind was focused on other things, but it was blogging friends like you, with your cheery and funny comments, who buoyed my spirits during some of the harder days. thanks for being my blogging buddy! 🙂

                                  xoxo
                                  nat

                                  • At 2010.12.10 11:22, Jon said:

                                    I donated stem cells this year to a young boy with AML. I have very limited information on the patient and have not received any letters from him. I am however allowed 2 updates from his transplant centre to hear his progress. One in June 2010 said he was well which is great news.

                                    I have gone through a similar predicament since then as you are now as to whether I should write to him and wish him well. I dont want to seem to be nosey or intrusive to the patient or his family so after a year and the second update I think that will be the end of the story for me so I can only hope his health continues.

                                    I have read unbelievable stories on bone marrow recipients and seeing your sister in this article makes me happy that I donated.

                                    I have a feeling he is from the USA and I am in the UK. I note Teris post that she has to wait a year to make direct contact. Is this the case in the USA that some transplant centres dont allow the patient to write to the donor (even on an anonymous basis) ?.

                                    All the best to you for the future.

                                    • At 2010.12.10 11:55, Natalie said:

                                      jon,

                                      thank you so much for your post and for sharing your experience. it’s wonderful that you were able donate to this young boy.

                                      i’m not sure if all hospitals and transplant centers have the same rules as far as donor/recipient contact goes, but my sister and i didn’t think we would have any contact for a year or two. it was a complete surprise when the transplant coordinator called and said she had a letter to pass along to us from my sister’s donor.

                                      my sister and i are allowed to contact the woman (through the doctor’s office) but we can’t give any specific information (names, location, etc) which is why i didn’t use my sister’s name in my post here. we won’t get her name for three or five years, i think.

                                      if i knew i could have written her on day one, i would have done so. it’s because of donors like you that my family gets to celebrate WITH my sister on her 34th birthday next week. thank you so much.

                                      wishing you only good things!

                                    • At 2010.12.10 13:01, Stephanie said:

                                      Nat – so glad to see that your sister is doing well and that she was the recipient of such a wonderful gift – the gift of life!
                                      Stephanie´s last blog post ..Murder on the Bride’s Side review and giveaway

                                      • At 2010.12.14 20:38, Natalie said:

                                        stephanie,

                                        hope this note finds you feeling well. thanks for your kind words on my post about my sister. i sent off my letter to the donor (via the doctor’s office) yesterday and hope that she will feel my sincerity and heartfelt gratitude.

                                        all the best to you!
                                        nat
                                        xoxo

                                      • At 2010.12.10 13:08, Stephanie said:

                                        I just also wanted to encourage everyone to become a donor. My mother had Myleodysplastic Syndrome, which is a pre-leukemia condition. We were looking for a stem-cell donor for her, but unfortunately her condition worsened and she passed away. I wish everyday that something could have been done to save her life. But I’m happy for your sister and the countless other people who can benifit from stem-cell donors!
                                        Stephanie´s last blog post ..Murder on the Bride’s Side review and giveaway

                                        • At 2010.12.11 23:35, Lisa said:

                                          What a lovely tribute to both your sister and the donor who saved her life!
                                          Lisa´s last blog post ..Reading for Feeding America – Help Craig Lancaster Help America

                                          • At 2010.12.14 20:51, Natalie said:

                                            lisa,

                                            thanks so much for you kind words. i am so grateful to this woman and hope that one day my sister and i can meet her.

                                            all the best to you!

                                          • At 2010.12.12 09:04, Beth F said:

                                            I too am at a loss for words. I am so thankful you were able to find a match and that someone out there was able to give you and your sister the ultimate gift.
                                            Beth F´s last blog post ..Imprint Friday- The Doctor and the Diva by Adrienne McDonnell

                                            • At 2010.12.14 20:50, Natalie said:

                                              it’s amazing to me we found a match for my sister and i’ll be eternally grateful to this woman. thanks for your kind words. bloggers like you have helped me through these last months. i’ve enjoyed reading about and participating in your weekend cooking challenge and hope that you’ll continue it into the new year!

                                            • At 2010.12.12 16:28, Christy said:

                                              What a wonderful post – thanks for sharing. The comments have been so moving as well. I wish your sister and the rest of your family well!
                                              Christy´s last blog post ..Mini-review time!

                                              • At 2010.12.14 20:49, Natalie said:

                                                thanks so much for your support. i was overwhelmed by the response to this post about my sister and the comments from donors and recipients really moved me. i guess when your family is going through something like this is hard to recognized that other people are also having difficult times. i know that there were so many other people in the hospital on the isolation floor with my sister, but we were so consumed with getting my sister well that we couldn’t even focus on them. sad, but true.

                                                i’m hoping to one day be able to match someone out there and give to a person in need.

                                                wishing you health and happiness this holiday season!

                                              • At 2010.12.12 16:33, Aths said:

                                                I cried reading your story. My brother was hospitalized last month (he’s fine now and recovering outside hospital), and I went through hell as my best friend for 21 years struggled with a brain disease. I know how hard it must have been for you, it almost feels like life has stopped for you. I’m glad your sister is on her way to recovery and how very wonderful of that donor to send you a letter like that. Here’s to many more wonderful years of cheer and no health issues!
                                                Aths´s last blog post ..The Sunday Salon Anticipations – December 12- 2010

                                                • At 2010.12.14 20:41, Natalie said:

                                                  aths,

                                                  thank you so much for your kind words. i’m happy that your brother is doing better and know all too well the stress that sick family members and friends can bring on. the whole life-has-stopped thing has been a bit too real–i used to visit my mom’s house once a week. since february, i’ve only been to my mom’s twice. my mom and i spend most of our time at my sister’s. in the beginning, mom was doing sunday night to thursday night and i did thursday night to sunday afternoon. now things are much better but it was tough going for a bit.

                                                  wishing you a wonderful holiday season and happy and healthy 2011.

                                                • At 2010.12.12 21:25, bermudaonion (Kathy) said:

                                                  Your post is beautiful and brought me to tears. What a wonderful, selfless act that donor made and what a difference her donation has made to so many lives.

                                                  • At 2010.12.14 20:43, Natalie said:

                                                    kathy,

                                                    it has been a difficult 9 months or so, but bloggers like you have made it so much better for me. i can always count on you to comment on my posts and that really means a lot. i know you really work hard at blogging, and for me it made a real difference. in your own way, you helped make these months easier for me with your kind words and support.

                                                    wishing you and your family health and happiness this holiday season!

                                                  • At 2010.12.13 16:20, Kathleen said:

                                                    I am the youngest of 9 and have 8 older sisters. I can’t imagine any of them going through this. This post made me cry but also inspired me. That act of kindness from a stranger has saved your sister’s life. You have so much to celebrate this year. Thanks for the link to the website for more information and best wishes to you and your family this holiday season.
                                                    Kathleen´s last blog post ..I Did Come Home

                                                    • At 2010.12.14 20:45, Natalie said:

                                                      kathleen,

                                                      wow, 9 sisters is quite a legacy! life at your house must have been fun when you were small.

                                                      my family is so grateful for this anonymous woman and we have much to celebrate. my sister turns 34 tomorrow, 12/15 and we had a nice dinner party for her over the weekend. thanks so much for your kind words. wishing you a happy and healthy holiday season!

                                                    • At 2010.12.13 18:28, Sheila (Bookjourney) said:

                                                      What a beautiful post. I am all teared up as I read this and isnt it wonderful that theere are Angels here on earth.

                                                      Thank you for sharing this.
                                                      Sheila (Bookjourney)´s last blog post ..It’s Monday! What Are You Reading

                                                      • At 2010.12.14 20:46, Natalie said:

                                                        sheila,

                                                        is so amazing to me that there are people so willing to donate of themselves so selflessly and i’m beyond grateful. i don’t know what motivated this woman to join the bone marrow registry, but i’m so thankful that she did.

                                                        have a wonderful holiday season!

                                                      • At 2010.12.13 23:43, Jess - A Book Hoarder said:

                                                        Wow Nat this is incredible! I’m so glad to hear your sister (who is adorable by the way) is doing so well. I can’t imagine going through this experience, much less reading that letter from the donor. It has given me a whole new perspective on donors.

                                                        Thank you so much for sharing.
                                                        Jess – A Book Hoarder´s last blog post ..Mailbox Monday

                                                        • At 2010.12.14 20:53, Natalie said:

                                                          jess,

                                                          it’s so sad but i really didn’t know anything about this program until i needed it. i suppose that’s how it happens sometimes. it becomes so much more personal when it makes a direct impact on your life.

                                                          i appreciate your sweet comment and wish you a wonderful holiday season! thanks so much for all your blogging support in the last several months. your comments and chatter have kept life a bit more ‘normal’ for me!

                                                        • At 2010.12.14 14:18, toothybooks said:

                                                          thank you for sharing your touching story! it brought tears to my eyes and honestly i’m at a loss for words right now. i’m happy to hear that your sister is well on her way towards recovery though and i hope this holiday season finds your family in high spirits and great health!
                                                          toothybooks´s last blog post ..RIP Texans’ 2010 Season

                                                          • At 2010.12.14 20:55, Natalie said:

                                                            appreciate your sweet words and assure you that we are in super high spirits this holiday season. my sister’s house is DECKED out–it looks like the north pole or nyc store window decorated for the holidays! lights and cheer everywhere.

                                                            sending you hugs for all your blogging comments during the last few months–you helped to keep me sane even though you didn’t know it!! your little tooth icon/avatar always makes me smile.

                                                          • At 2010.12.15 19:42, Stephanie said:

                                                            Your sister is amazing and so are you! I bet the words will come soon.
                                                            I often wonder whose blood I got because it’s really such a gift to give (and receive) life. Funny thing is that when I was 8-months in, I pushed Steve to donate blood because “you never know who’ll need it.”
                                                            Once I get the all-clear, I’ll be ready to donate again; you never know who you’re giving life back to!

                                                            • At 2010.12.17 12:52, Wendy said:

                                                              I am sitting her weeping…first, let me say that I can empathize with what you and your sister (and family) have been going through as my sister is currently battle stage IV colon cancer. It is a heartwrenching, incredibly difficult journey. Secondly, thank you for the reminder to all of us that our blood and marrow could save a life. I don’t think a lot of people realize how relatively easy it is to register. Lastly, how wonderful that the donor wrote a letter of hope and thankfulness to your sister – and let her know that she would be willing to donate again if need be…it renews my faith in humankind. My thoughts and prayers are with you…
                                                              Wendy´s last blog post ..The Warden – Book Review for Classics Circuit

                                                              • At 2010.12.17 22:24, Colleen (Books in the City) said:

                                                                Thank you for reminding me to update my contact info in the NBMDR – I registered while in college during a bone marrow testing drive for a student whose brother needed a match – and I have updated my information will all my moves . . .until the last one – I forgot until I read your post. I want to be sure to be available in the event that I match someone.

                                                                I am so happy for your sister and for your you – here’s to her continued recovery and good health!

                                                                • At 2010.12.18 02:46, trish said:

                                                                  Wow. What an amazing story! I’ve been a registered organ donor since I was 18, but I never thought of being a bone marrow donor. It’s certainly something that I’ll be looking into now.

                                                                  Stories like this is what life is all about.
                                                                  trish´s last blog post ..Quickening

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