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Register at the ABDR level with the National Marrow Donor Program
Dear Everyone,
YES, believe it or not -- we DO have a date with our donor! Yesterday, we received the call from our Transplant Coordinator with Travis' donor's name and phone number and the ok for us to call her! We were so overwhelmed at the enormity of it all -- took a few deep breaths, re-read the letters she'd written over this past year and then Joe and I called together (Travis was in school). I can't begin to describe the absolute wave of emotion that hit me when Marge (yes, "our donor" has a name!), asked "Please tell me, how is your little boy doing?" Thankfully, both she and Joe were so talkative from the start, that I could sob on my end and collect myself before joining in. We had an incredible long, conversation (over an hour!), during which time she told us that she in fact WILL be able to come into town (several states away) to be with Travis and our family to celebrate the one year anniversary since BMT. We are positively overjoyed at the thought! Our hero (and her little son) are actually coming in just two more days, and will be with us for some private time for a day and then at the special service on Friday night at our temple! AND, they'll stay in town for a few more days so we can spend more time getting to know one another more -- although, truly, it feels like we've known each other for quite some time already!. After all these updates, I'm sure you won't believe this, but I'm almost at a loss for words. We just celebrated Rosh Hashanah -- the Jewish New Year -- and what an unbelievable way for the new year to begin.
Travis had his first clinic checkup without a central line last week. He was VERY, VERY anxious about the needle poke for the blood draws, but made it through reasonably well (and the EMLA helped minimize the actual pain). His counts were very good. First time his platelets were in the "normal" range. All else looking good, too, including his eyes. So, he soon begins his re-immunization shots, since all his new cells don't have the benefit of the old immunizations. And in two weeks, Travis will be up for a day or two of the one-year-post-BMT testing, measuring against the baseline test results from last year (see "The Orange Adventure" ).
On a creepy note, last night Travis complained that his "leg was hurting, just like when he was first diagnosed." Oh man, did I freeze, right then and there. We calmly reassured him and asked about his day's activities and then called the clinic in MKE just to see what we should do. They felt that since he'd just been up there and had such good counts, that it is likely just muscle soreness. And indeed, today, Travis was just fine. Just the same, I'm glad that he'll be checked out again thoroughly in a few weeks. So this was one of the first experiences that we've heard and read so much about from other parents of kids with cancer -- when stuff like that comes up, it all comes back in a rush -- the fear and uncertainty. I'm sure there will be many more times like this -- we'll just have to deal with them as they come, I guess.
Last week, Travis' teacher told us a story that melted our hearts (and apparently hers, too). The kids were outside, throwing a beach ball in a circle. As each child received the ball, they were to tell what they'd done this past summer. So the children responded with the usual "I went to Disneyworld", "I played baseball", "I rode my bike" until Travis. He caught the ball and said "I got my central line out". Mrs. Martin, Travis' teacher, said it was all she could do to choke back her tears as the kids continued playing the game. I was so pleased to hear that she'd later heard one child ask Travis why he wasn't in school all last year, to which he replied that he'd been really sick. The other child asked how he was doing now, and Travis said "great!" and that was the end of the whole thing. We sure know how difficult it CAN be for kids with cancer or recovering from BMT. So far, we've been so blessed at how smoothly things are going (except for the child who sits next to Travis throwing up in the classroom today!) for him at school.
Spencer has had quite the transition to deal with these last several weeks, in addition to his processing all this craziness from last year -- my going back to work (including a lot of travel), his starting Kindergarten and now all the whirlwind with the one year post-BMT date ahead. His counselor (and ours) was wonderfully sensitive and sensible in reminding us to make the appropriate choices right now to protect the boys from having too much (more) to handle. A lot is happening right now to stir all our emotions, and that we need quiet time with the boys alone to help them (and us) process through it all. Great advice, and we've made plans now on how to best ensure that we do this more -- especially in the next few days. The good news is that Spencer had a truly wonderful day today - so happy and lively. It was absolutely heartwarming, after all he's been going through lately. We'll do all we can to continue to reinforce how much we love him and how special he is in our hearts. I've said it before, and now again -- I think it's as tough on the sibling as it is on the patient. But this sweetheart, Spencer, is an incredible child. I'm so hopeful that he (and we) can work through all this in the most healthy way possible. One day at a time
So, that's the big news from here. We're so excited -- and will fill you in with more after the next few days unfold. Thank you, thank you, everyone, for the most supportive, caring and loving last year and a half since this all began.
Happy New Year!
Melanie, Joe, Travis and Spencer
One year since BMT will be 9/17/99!!!!