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Register at the ABDR level with the National Marrow Donor Program
Dear everyone,
Of all the updates over this last year and a half, this one is incredibly difficult to write. We have just experienced THE most awesome, emotional, meaningful weekend. It has left me both reeling and exhausted. These words will be woefully inadequate, but I'll try my best. It's taken me until now to even attempt to write. And it's all good news -- just so powerful
On Thursday afternoon, we received yet another gift. That is, the opportunity to meet Travis' incredible donor in person. All morning, Travis had been a bit quiet, and halfway to O'Hare airport, he suddenly perked up and said "Yippeeee, we're going to meet my donor!" And there we were, at the gate, holding our "Welcome Marge! Our Hero -- We thank you!" banner, and "Welcome John John" (her son) sign, watching streams of people file off the plane. Finally toward the end of a loooong passenger load , at long last, we saw the beaming, beautiful face of Marge and her son. To be honest, I can't even remember who made it to Marge first, whether it was Travis or me (we do have videotape that some kind stranger shot on our camera -- we just haven't watched it yet). I only remember hugging Marge so hard and sobbing my eyes out and somehow blurting out, "This is Travis and this is Spencer". And bless her, she knelt down and hugged them both. Later, Marge told us she'll never forget Travis' first words to her. They were "Thank you." (-:
The hours ran into one another as Marge and John John settled into our home for the evening. Travis and Marge sat quietly at one point as he walked her through an album of pictures which chronicled our journey over this last year and a half -- everything from the hospitals, to the RMH, to the prednisone-swollen face and belly periods, to the multitude of different hair colors and textures and volume shots, to the hospital school, to the green ribbons, to the latest pictures of Travis starting school. Nothing can truly capture the enormity of this journey -- but I feel certain that Marge had a good feel before, and then even moreso after seeing this pictorial essay. It was so moving seeing them together on the couch -- so comfortable and relaxed together. Later, when the kids were in bed, we three sat in the living room while Joe and I pulled out newspaper articles about Travis and our family since his diagnosis. I felt in such a deep, slow moving fog as we talked. It was then that the last year really hit me. I could barely understand what Marge was saying, as the images of the past months were so vivid in my mind. I was actually grateful when Marge said she couldn't look at all the articles -- it was too emotional, too difficult for her. At the brink of this critical one-year juncture, it was too huge for me, too.
As we stayed up and talked, Marge told us about the journey and experience from her perspective. It turns out that she had been in the NMDP registry for several years, prompted at the time to enter the registry to try to help a dear friend, who, tragically, died of cancer. Out of the blue all these years later, Marge returned home one day to several messages from the NMDP stating that she was a match for a little boy with leukemia and asking if she would be willing to proceed with testing to see if she might be able to donate marrow. Her immediate response was "Are you kidding? Of course! How could anyone say no to this? Absolutely, I'm willing." Marge said she truly felt a sense of lifelong purpose in being able to make this act of giving. And we all feel that this was absolutely "meant to be".
Marge told us about the actual procedure, her recovery (and preparation -- including the fact that she was sick a few weeks prior to the marrow harvesting procedure which could have postponed the whole thing, had she not become well in time enough to donate), her agonizing frustration at not having timely updates about "Special's progress and much, much more from her perspective. It was both fascinating and frightening, to listen to the one person who could have indeed, changed her mind and left our Travis without this perfect match option. It was so humbling and we are so profoundly grateful that Marge never hesitated for a moment, never doubted her decision and never thought of turning back and saying no. In fact, not only has this wonderful woman done so much for our son and our family, but she also speaks to groups about marrow donation, helping educate people about the importance of getting in the National Marrow Donor Program registry (1-800-MARROW-2 or www.marrow.org).
At some point, Joe pointed out that now Marge was indeed a "blood relative" in our family, whether she liked that or not! We all got a hoot out of that. Remember, Travis had a different blood type before the transplant and now shares the same blood type as Marge! This is so amazing (I should get up and find a Thesaurus -- these words are totally inadequate for the immensity of all this.)
The next day -- September 17, the one year anniversary of Marge's marrow harvest and Travis' transplant (they harvested Marge early that morning one year ago in Boston and flew the marrow to Milwaukee by special courier) the boys attended abbreviated school days. Marge walked to pick up Travis at school. That was so sweet. Travis was so excited and happy to have her with us -- and at his school! We felt like, "See, Marge? Because of you, he is AT school!" Then after a full morning and naps for children and adults alike (we were all SO drained -- "dumbstuck" was the word Marge used.), we picked up Marge and John John at the hotel (we had them one night at our house and then hotel, as we knew it would be quite hectic at our house on the 17th with many goings on -- possibly too stressful on all our children and ourselves. That ended up working wonderfully well all around.) and brought them to our home for a dinner to honor our relatives and support people who have been so firmly a part of our lives through all of this. It was positively joyful. The kids had a ball, entertaining the other kids with food and video games. The adults all mingled and met one another and especially Marge. She was absolutely gracious and patient, likely answering the same questions with each person over and over.
Then we proceeded to Beth Tikvah Congregation for the service of a lifetime. This was the Friday night service of Shabbat Shuva -- the Sabbath of Return. How prophetic that indeed it was a return, of Marge to a part of her own body -- to Travis. The service, led by Rabbi Doug Kohn, was unbelievably moving. We'd not wanted the evening to be "about Travis", but rather, about healing, about life, about honoring how one person can absolutely make a difference in saving another's life, about what "community" really is (in it's biggest sense -- from family to caring strangers). And we believe that the service reflected just that. To many, Travis has been the symbol of all this, but there are many who have and are continuing to fight this struggle. A few others wonderful people in our congregation who are also fighting (and we believe winning) the fight against cancer, in fact, participated in the service by leading readings. It was so very moving. Four people who were leaders in tremendous support to our family (and to many, many others) were honored with places to sit on the bima (pulpit) for the entire service. Instead of a sermon, the Rabbi invited Joe and me to come up and share a few thoughts. Joe had prepared all his words, and was just magnificent in capturing our emotion and gratitude, especially to Marge and our own children and my parents. When I spoke next, I talked straight from my heart, using a few reminder bullets I'd scribbled down beforehand. At one point, in recognizing Marge, I couldn't speak or go on. And sure enough, my dear friend Ellyn got me laughing in a heartbeat by lunging to me with a tissue just when I was totally bereft. So I made it through and said pretty close to what I'd hoped could somehow come out. What was most important to Joe and me was what I said above about the purpose of the service, and also to point out how Spencer was such a hero throughout this -- that cancer affects the whole family in completely unforseen ways, and to honor and remember those people who have lost their fight with cancer as we fight in their memory.)
Then, the Rabbi invited Marge, John John, Travis and Spencer up to the bima to join us. The entire congregation (I wish I knew how many were there -- 200? 250?) then stood to honor Marge. It was absolutely beautiful. And then she gave yet another gift. Rabbi Kohn asked Marge if she would like to share some of her thoughts -- and she willingly agreed. I only wish you all could have been there. It was unbelievable how eloquently she expressed her feelings about the process and about having finally, finally been able to meet Travis and see for herself that he is doing so well. And at what is now likely the most memorable part of the service, just when Marge was on the verge of breaking into tears as she spoke, John John spoke exhuberantly into the mike, "I'm John John!". We all broke into huge laughter -- which was his signal to continue this as long as he could still milk a laugh. It was just perfect. He lit up the room, which was just what we all needed. Travis and Spencer were howling -- which was wonderful, as it could have been such a heavy few moments for them as well. John John will forever be famous at Beth Tikvah. As will Marge.
After the service, everyone joined together for desserts and conversation in the back gathering room. We'd arranged the room with many pictures, mementos of the year and piles of related literature for people to take (RMH tab top boxes, NMDP literature, Leukemia Society Light the Night Walk forms, etc.) as well as a sign up sheet for an upcoming blood drive! We even had LifeSavers candy on the tables! It was just wonderful to be there with everyone.
I could go on and on (and have already -- forgive me) with stories from this weekend. But I'm somewhat sensitive to two things -- your attention span to these long updates and also to preserving Marge's privacy. Just a few final thoughts though we were approached by newspapers and a network TV station who all wanted to be at the airport to capture our first meeting. We discussed this with Marge on the phone and she, Joe and I all agreed that this would be too unpredictable and too private a time to risk any possible feelings of intrusion. It tore at us, because we knew that this could spread the word and possibly get more people into the NMDP registry. But we decided we'd rather err on the side of missing a story than possibly spoiling an intensely personal moment. For us, this was a very good choice. We did agree, though, to an newspaper interview and photos on Saturday after we'd gotten our feet back on the ground. Again, Marge was gracious and open with her side of the journey. We're hoping the pictures turn out great, as Marge and Travis snuggled on the couch together. It should be in the paper tomorrow (Monday).
We also videotaped the service Friday night. The video is so moving. It opens with about 25 select pictures depicting high and lowlights of this past year and a half -- and the background music is first Travis, singing the Shema (Jewish prayer) and then continuing with the music of Debbie Friedman singing "May we be blessed as we go on our way". This was the same song we'd listened to on that seemingly three million mile drive up to MKE that first time to have the "straight talk" with Dr. Casper before we'd chosen him and Chidren's Hospital of Wisconsin for our transplant center. The music shook us to our roots then and did so again on this videotape. What a tremendous, lasting memento for us to have.
Our weekend together ended in somewhat of a rush, getting Marge and John John to the airport this morning. That was probably good, as we were all fairly numb and drained after the emotional roller coaster of the last few days. Our goodbyes weren't tearful and emotional -- we didn't have time and also, I believe it was because we know we will continue to be in each other's lives -- that this wasn't goodbye.
So, here it is, the start of Yom Kippur -- how fitting that this is the time we ask God to "inscribe us in the Book of Life". This is all so huge -- and so serendipitous. It has been one amazing weekend in this ongoing journey. Thank you, everyone, for being here for us. Whether you were here in person or in spirit to celebrate with us -- we felt your presence ever so strongly.
And Marge, we thank you and we love you.
Happy New Year everyone,
Melanie, Joe, Travis and Spencer