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"BLINK! It's been 5 Years!"
Travis Update 9/17/03
Dear Wonderful Family and Friends, Five years ago today (and actually, at this very moment), Travis was in bed at Children's Hospital of Wisconsin, getting a bone marrow transplant and fighting for his life. FAST FORWARD... Today, Travis woke up like every other morning now, got his homework packed in his backpack for school, ate breakfast and got to go to 5th grade! Now THIS is a miracle. Honestly, I think somehow I blinked... and now suddenly we're celebrating Travis' 5-year BMT anniversary! Actually, it's an anniversary for his hero donor, Marge, as well. It was on this day, five years ago, that we felt such a desperate hope... praying so hard for Marge's health and safety, the safe arrival of the marrow to the hospital, and the survival of our sweet son, Travis, then 5 years old. And here we are, all those daily hugs later! I'm so remiss on updates -- and though there have been incredible stories and experiences on this continuing journey this past year, I'll write only a few highlights. First, and most importantly, Travis is 10 1/2 years old and remains CANCER FREE. Yahooo! He's finally down to only annual long term care, post-BMT checkups and annual endocrinologist checkups -- and of course, is on NO meds. Yup, only multivitamins for this healthy boy! He's doing the pre-tween thing now, orthodontia - expanders and then braces soon. Thank you, Marge, thank you Marge! We love you. Travis continues to be a beacon of hope for so many families that contact me from around the world, who have either been diagnosed with ALL PH+ or are about to go to transplant with their children. While we celebrate here, it's a horrific time for many others we know... some whose children have relapsed, some who are going forward to marrow/stem cell transplant. And some, tragically, have lost their children during these last months. It continues to punch me right in the gut every time I learn of one of these friends. I don't take our miracle for granted for one moment. My heart goes out to each of these friends - these moms and dads. We have a connection that I wish came for a different reason - not cancer. Spencer (now 9 and "going on MIT" -- Massachusetts Institute of Technology -- he already wants to attend school there!) and Travis are STILL best friends (hmmm... another miracle?). I hope that one day, they'll truly appreciate how lucky they are to wake up to one another each day -- instant, all-day playmates, alive and healthy. I'll never forget the day Spencer said to me, "Mom, when Travis was in the hospital, it was like I was ripped in half." I guess these are the twins I never had. They truly have a rhythm and closeness with each other that I hope lasts forever. And speaking of Spencer, I've alluded to this ever so briefly in a past update... Spencer was the catalyst for the work I'm now doing. (Drum roll here...) After becoming aware of this tremendous unmet need of support for brothers and sisters of children with cancer (not only our own experience, but after having done research as well), I founded (and now lead) SuperSibs!, a nonprofit organization specifically to bring comfort and joy to these "forgotten" children - siblings of children with cancer. Families whose kids have cancer "get it" in an instant. In fact, they do the "V-8 forehead knock" and say "OF COURSE! Why didn't anyone create an organization to do this before now?" So there you go... I knew it was one of those things... it wasn't a choice... it's what I'm supposed to be doing. Yup, took the wild (though determined and calculated) leap from the corporate, for-profit-world cliff to ensure that NOW, these siblings of children with cancer have the support they need to "survive" this journey as well, with the help of SuperSibs! SO... as we go nationwide with our services (we serve Chicago/Milwaukee areas only this first year), do check out (and bookmark) our website at www.supersibs.org, and please refer siblings (ages 4 through 18) of kids with cancer so we can reach those who will benefit from our support. It's TREMENDOUSLY gratifying to know we're helping to complete the total family healing puzzle. The feedback from kids, parents and the oncology community has been extremely positive. Five years ago, I'd asked you all to say a special prayer for Marge, as she was about to have her marrow harvested. Marge, who is now our blood relative (don't ya love it?), could use some healing prayers of her own these days. She's had some of her own health challenges, but continues to persevere -- and she always expresses her love and caring for us all. We talk about once a month -- catching up on one another's lives and talking with each other's children. We just spoke tonight, and it was unbelievable to think about what she'd done for us 5 years ago today. We both said that there are no words to adequately express how each of us feels about this positive life-changing experience. It boils down to this. THANK YOU from the bottom of our hearts. Marge, you are our hero! Oh yes, there will be new pictures on the www.keeptrying.com website soon. What just blows my mind is that you'll see images of Travis and Spencer, who look just like everyone else. At school, the mall, on the street -- one would never know that Travis has endured so much. He's still sweet, kind, Scrabble-loving, giving Travis -- growing "normally" in height and weight (so far) and even getting excellent grades in advanced classes in school. Other than his continued disappointment at not having fully correctable eyesight (correctable to only 20/50 in one eye, with glasses), he's doing better than we could ever have dreamed. Considering the multitude of problems he could be facing, this is very, very, very lucky. One thing that so warmed my heart this last month was being able to participate at the grand opening of the new Long Term Care Wing at the Ronald McDonald House in Milwaukee (our home for 4 months, 5 years ago). I'd felt so strongly about the need to better accommodate immune-compromised kids and their families, as well as those who need to live there for extended stays. And sure enough, the RMH Board of Directors and community took the bull by the horns and MADE IT HAPPEN! The new wing has 8 beautiful new "family units" that meet every single need one might have -- and more! As I told the RMH team, "I never want to live here again. But I'm overwhelmed at how even more wonderful their home is for families going though this kind of long term stay." There's a lesson here: we "cancer families" can truly find ways to help those that follow on this not-chosen path. I'm so glad my Dad and the boys were able to be up at the RMH on this gorgeous and meaningful day. To our RMH MKE family, we love you and couldn't be more proud and happy at what you've made come true. To honor this huge 5 year milestone, (as Dr.Casper says: "3 years is better than 2; 5 is better than 4; 9 is better than 8 and so on...") the boys and I celebrated with ice cream sundaes in front of the TV! Not what I would have planned, but hey, it's all about marking this milestone in a way that THEY'LL enjoy, right? We had some good giggles and cuddles - and then shot hoops together! How normal is THAT? I hugged both boys as much as they would let me today (though with each passing year, it's far less "cool" for me to do so, apparently!) Travis also had a sweet conversation with Marge. She was so deeply touched. It means the world to her to hear his voice and catch up on his life. This past year I've heard from several more friends and strangers that they'd registered on the National Marrow Donor Program (NMDP) registry 5 years ago to try to help Travis and were subsequently called to donate marrow or stem cells! Amazing! More people who now have had the chance to live. Perhaps most amazing of all is my cousin who'd held a marrow drive in San Francisco 5 years ago and encouraged her husband to register -- and just this year, he was called as a match and he donated stem cells! Jason -- you, too, are our hero! And Sara, YOU are, for bringing him and so many others into the registry! So, for those of you who are not yet on the NMDP registry, PLEASE call 1-800-MARROW2 or see www.marrow.org to do so (and encourage your friends as well). And if you've been on the registry for all these years, please make sure your address is current with the NMDP, so they can find you if they need you... to help save a life. Marge was on for over 6 years before she got "the call". You may very well have this honor - to help save a life. It's been a year of growth and daily miracles. I marvel that I get to hug both my boys each day. Thank YOU, Marge. And thank YOU, everyone, for continuing to send your love, support and prayers. Here's to many, many more 5 year anniversaries -- for Travis, Spencer, Marge, and for all the children still fighting cancer, their special siblings and families and these amazing hero donors. With love, hope, hugs, prayers and gratitude, Melanie P.S. Yes, a blatant reminder... www.supersibs.org Check us out! From the storm comes a rainbow...
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