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Spencer's Due Dear Everyone, I can't begin to tell you how moved we were, upon watching the video from the WGN-TV News interviews (2 versions aired last Friday August 13 th at 6:30 and 8:30 AM). After all we've been through this past year, probably one of the biggest and most painful eye-openers for us was watching how frightening, heartbreaking and anger-producing cancer / bone marrow transplant could be on the sibling of a patient. For us, it was the feeling of helplessness as little (then 4 years old) Spencer was pulled along -- almost like the rug was completely pulled out from under him -- again and again and again. Suddenly, all the attention was on Travis; we were known as Travis' mom and dad; gifts and cards and mail poured in for Travis; and hours on end were spent with Travis at doctor appointments, many of which Spencer attended, both here at the hospital 30 minutes away as well as in Milwaukee. Spencer was uprooted out of his preschool and moved into a new school in a new city (Milwaukee) where he knew no other children; living in temporary housing at the Ronald McDonald House, all the while watching the horrors of his brother getting poked, prodded, medicated, getting thinner, getting bloated and moody.

And although this is one of the brightest children I can ever imagine meeting, he could not understand all that was going on around him. Spencer made a good friend at the RMH, John Reser, and then had to be told one day that John died after fighting two forms of leukemia and Legionaires disease. Spencer endured the discomforts of wearing a mask in Travis' hospital room day after day, even though Joe, Travis and I didn't have to wear one. He washed hands like a surgeon EVERY time he set foot into Travis' room, touched the floor or went to the bathroom or ate a treat. He came along on 2 hour car rides and 4 hours of clinic visits sometimes twice a week once Travis was released. He endured our sharp reprimands if he came too close during Travis' sterile procedure dressing changes. And during all this, Spencer has been doing his best to cope and carve out his own identity. Yes, there have been many moments of beauty for Spencer throughout this time, but maybe for him, it has been hardest of all, to stand by so helplessly and not be able to control one damn thing having to do with his best friend, his brother. I still believe that this experience will affect him in many unknown ways for the rest of his life. A few weeks ago in our kitchen, Travis said to Spencer "You are a hero, Spencer, because you played with me every day and you never let me give up". I've said before that there are three main heroes in this journey. They are Travis, his donor and Spencer. Well, last Friday, finally Spencer received his moment in the sun "formally" recognized, for about 8 seconds on the news, as a hero. During this brief but touching news piece on Travis' journey and the tremendous support organization Chai Lifeline, while showing scenes of Spencer and then the boys together, the reporter spoke that (based on talking with Travis) "one thing that's helped Travis not feel like he's so sick is the constant companionship of his brother, Spencer. They're inseparable. Travis says he couldn't have gotten through this year without him." They then focused on Travis, who said, "He's my first place best friend". I wouldn't have traded a million dollars for the look on Spencer's face -- pure pride and innocent joy -- at being "the center of attention" for that fleeting 8 seconds or so that he saw on TV. It may seem silly to make such a big deal out of this TV glory, but truly, this child has been through so much which has been unrecognized (as have ALL the siblings of these kids and parents with cancer), that whatever genuine recognition he receives is one more boost to his own self-development. Whew -- believe it or not, this ranks as one of THE most tearful updates I've written yet. It will be a long time before I get over the pain and guilt of what HE has been through. Cancer is one hell of a dangerous thing -- trying to tear away at more than just the patient. So, Spencer, although we tell you this, here it is for you to one day read and forever keep. You ARE a true hero and we love you.

Okay, believe it or not, I have lots more to update after that tearful catharsis. Thanks for bearing with me, everyone. We got a call last week from our Transplant Coordinator that unfortunately, now, Travis' donor will not be able to come in and meet us at the one year mark, September 17. While we were extremely disappointed, we were assured that she DOES want to meet Travis and our whole family. The timing (and for that matter, that setting, with the big service and all) is the exact time at which she is moving across the country and would be extremely difficult to fully savor the time we would have together, and make the moments as special as possible. So, do know that the Friday evening service will still be an incredibly memorable and meaningful evening, but our donor hero won't be there with us physically, yet. We fully support her decision, as we want to make our meeting and time together absolutely optimal and we'll wait for when that time is meant to be, hopefully still in the near future. In the meantime, we plan to honor her, as she has given us the gift of a lifetime that no other in this world could provide. We hope many of you can be at this service of celebration of life.

Two more things

Update on Travis! After 2 weeks with no checkups (kind of a nail-biter for Joe and me), Travis' latest appointment showed that his counts are steady and even rising, his eyes checked out good again with no CMV Retinitis activity. SOOOO, we had "the conversation". Yes, about his Central Line (the tube that goes into his chest like a long rubber straw hanging out that splits into two at about his waist, which facilitates easy blood draws and IV med administration.). There is not enough statistical data to completely guide a decision on whether or not the CMV Retinitis might come back at this point, which would mean back on IV Foscarnet. And at the same time, the sooner a line comes out, the better, as there's always the risk of a dangerous infection in or around the line, no matter how meticulous Joe is with the now weekly sterile dressing changes. So after a group conversation, we decided with the medical staff to do another PCR test to detect if there's any Philadelphia Chromosome (the chromosome abnormality linked with Travis' cancer) presence and if that checks out and his eyes check out after a thorough look-see while Travis is under anesthesia to remove the line, then OUT IT COMES. We're shooting for August 23 -- (wouldn't that be a nice birthday present for Travis' godfather, my brother, Bruce) which would be lovely, as this child starts real live elementary school first grade "with all the other kids" on August 25. (Spencer starts at the same school for Kindergarten on the 27th! Prepare for parental tears these two days!) We have many feelings about this milestone. Mostly positive, because of the incredible health progress it represents for Travis as well as the end of daily line flushes and weekly dressing changes for us all. But then too, comes the nerves. "What if he might need to go back on IV meds?" we wonder. But we won't know, and it doesn't make sense to wait and wait and wait to see if something comes Also, Travis is VERY anxious about the fact that now he'll have to endure regular needle sticks at every checkup (likely bi-weekly for awhile). And he does get VERY anxious about these indeed. Yes, we use the numbing EMLA cream, but psychologically this is still a big hurdle that has been almost debilitating for him in the past year. We're going to ask his counselor to help him learn some guided imagery techniques that may help him relax when needle pokes will inevitably be needed. Overall, though, what's helping Travis a bit (though he IS nervous about all this) is the thought that soon he can go swimming again! And, he's already asked if he can keep his "Line of Courage" after it is removed. We say, absolutely.

Last big news My day began with an email that almost knocked me off my chair. It was from ANOTHER of my closest girl buddies from Duluth, MN, my hometown. Yes, believe it or not, my friend Janet has been called as a perfect match (she was ABDR tested, as were all the 1,000 registrants at the Duluth drive) for a 44 year old man with Chronic Myelogenous Leukemia! She still has the additional screening to go, as does our friend Steph, but as she wrote, she is praying with all her might that she will have the opportunity to help this man have any chance at life. There are so many steps and decisions involved in all this, that it may be that neither Janet nor Steph actually get called to donate, but regardless, they are a true inspiration to us for their instant willingness to give of themselves this unique gift. I keep having this wild image, though, of both these friends in a shared room in Minneapolis hospital, getting their marrow harvested, with me waiting on them hand and foot all the while! (-:

So there you have it, another "marrowthon" update. This journey is the most fascinating experience one could ever imagine. Thank God for the beauty, for it keeps us going every day. Thank you all for being a part of that beauty.

Love,

Melanie, Joe, Travis and SPENCER!

P.S. And for those of you who are NOT yet in the marrow donor registry, please take 10 of your closest friends AND your family over 18 and go to your nearest center to all be registered (with two small vials of blood drawn from your arm) at the ABDR level into the donor registry. Call 1-800-MARROW-2 for the location nearest you. This saves lives, y'all. Don't we know it.

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