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Greetings everyone!
The good news keeps continuing around here. Life is SO different from a year ago, we can hardly believe our good fortune. The latest news on Travis is that he shows no CMV activity and his eyes show no further problems, so he's FINALLY off Foscarnet. Whew -- that's been a long time in coming. We started with administering the 1 hour IV pump 3 times a day, then eventually down to once a day for the last few months. Of course, with each administration comes flushes of Travis' central line before and after -- so no Foscarnet means further quality of life improvement for us all. And most importantly, no more beating up on his kidneys with this potent, yet necessary medication. His counts are still somewhat lowered (WBC 3.8, Hgb 10.0, Platelets 143) and Creatinine is still a bit elevated at .8, but he's very stable, so that's great news.
Travis is looking and feeling so good, people assume he's some other friend of Spencer's when they see him! Then they find out it's Travis ("the one who had the bone marrow transplant") and they're truly amazed. And boy, so are we. Two weeks ago, both boys were in a week-long soccer class for 2 hours each day. Joe and I were teary-eyed watching both boys run the length of the field, back and forth the entire time, "just like all the other kids". Equipped with shin guards (me, the nervous mom over bruises), the boys had a ball -- and cancer and BMT were nowhere near on their minds. What a tremendous step forward! Today, we made a family outing to a local pond, and we sat peacefully with watercolors, markers and crayons and each of us created our rendition of the setting. (Our art leaves something to be desired! Joe wins the prize though.) Ahhh how quiet, calm and lovely.
More incredible news! My friend Stephanie (who spearheaded the phenomenal ABDR bone marrow drive for Travis in Duluth, MN last July -- which brought 1,000 new people into the National Marrow Donor Program registry!) just got "THE CALL" from the NMDP saying that SHE is a 6 out of 6 antigen match for a 7 year old boy!!!!! Can you believe it? She's a nurse and is ready to donate her marrow NOW. First though, is further DNA testing and decision-making for the recipient's doctors and family. So we'll see if Steph is able to go further with the procedure. We're waiting and praying and hoping. I've promised that I'll come to Minneapolis (where they'd do the marrow harvesting procedure) and pamper Steph during her time there. It's the least I can do. She's such a hero. (She's also the one who took me out to lunch in MKE and got me laughing for the first time in about 4 months during transplant time.) I'll keep you posted.
Now even better news -- about our donor. We've gotten the word via the NMDP and our MKE transplant coordinator, that our donor IS COMING to be with us on September 17 -- the one year anniversary of her marrow harvest and Travis' BMT. We are beside ourselves with anticipation and excitement and love for this person whom we know only through Travis' body and through our anonymous communications. We still can't know her identity until closer till that date -- we're told September 10 is when we'll find out her name, where she lives -- and then we can finally talk on the phone. In the meantime, it's a hoot how this is being coordinated -- the NMDP and our coordinator (thank you, Deb!!) are doing the plane and hotel reservations on our credit card (we're bringing our donor in as the start of our weekend of honoring this incredible woman), since we can't know who she is yet. All we know is that "it's going to take her all day to get here". Hmmm if that isn't teasing information, I don't know what is! Anyway, we're told that she is SO excited to come here and meet Travis and our family. And today, we asked Travis if he was excited to meet her, and he replied "Incredibly excited, Mom." Oh man
So, here's the deal. As I've mentioned, Sept. 17 is the one-year BMT anniversary, a Friday night, and also (this is truly "meant to be") September is National Marrow Awareness Month! As a special way to celebrate this second chance at life, our temple (Beth Tikvah Congregation in Hoffman Estates, IL) is having a special service that evening. It will surely be an evening to remember -- celebrating one year of life; expressing gratitude to our Temple family, neighbors, friends, community and strangers who have done SO much to support us; praying for all our loved ones who are fighting cancer and remembering those who have lost the fight as their lives were cut short; raising awareness of the need for marrow donation and paying tribute to a woman who has done the rare deed of offering the gift of life to "our" (as he's become like a global son and symbol of hope and inspiration to so many) 6-year old Travis -- honoring this "life donor". How amazing to think about how she will be returning to a part of her own body, which has now become such an integral part of our own, through Travis.
We hope that many (or all!) of you can be together with us at this service -- one which I'm sure will touch our lives and clearly remind us of true priorities -- support, community, family, health and LIFE. We understand that there may be several people coming in town... If any of you can be here and want to spend the night or weekend, we've arranged with a delightful new inn right nearby -- and they're extending a great room rate for those that mention Goldish / Yon. It is the Country Inn and Suites by Carlson in Schaumburg, IL -- (800) 456-4000 (local is 847-839-1010) or www.countryinns.com. Please email us ([email protected]) to let us know that you're coming (we don't want to miss you!), for directions to Beth Tikvah and for more information about the inn. For those of you who can't be here in person, do know how much we are grateful for your thoughts, prayers and acts of kindness and generosity. This will be a humbling evening for us -- a time to keep you all in our hearts remembering you with deep thanks.
Lastly, Joe and the boys fared extremely well as I made my grand return to work last week. (As they dropped me off at the airport, the boys were chanting "Let the spoil begin!" and off they went for ice cream and Nintendo game rentals!). I can't imagine a better homecoming to work -- a 3-day meeting in Malibu, CA!! (And an extra day and a half of play with my brother, cousin and friends.) I was greeted by my colleagues from work with open arms and huge, heartfelt hugs. The meeting was incredible, and the entire week was dreamlike. Thank you, Pecos River / Aon Consulting, for hanging in there with me. You are the epitome of an organization with a deep and true soul.
So, our family is now ankle deep in this new phase of the journey. And we're diggin' it so far. We're hoping the positive momentum continues for a LONG time. This Thursday, WGN - TV is coming out to film an interview with us about our journey and the wonderful support of Chai Lifeline. Will post when it will be on TV in Chicagoland. As usual, I could write on and on about more incredible stories, but I've surely gone way past your reading tolerance this time. Thanks everyone, for being there for us. The love and security is unbelievable.
Love,
Melanie, Joe, Travis and Spencer
P.S. Yesterday we met Zak Rossbach and family -- a wonderful family whom we've met via the BMT Talk listserve. Zak's BMT (in Minneapolis for Severe Aplastic Anemia) was a few weeks after Travis' in MKE. This is a lovely family -- another bright spot in this amazing journey. And Zak is doing quite well. It was so sweet to see the kids together! Here's to many more happy meetings like this one!