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.
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 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 website? You 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.