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Register at the ABDR level with the National Marrow Donor Program
Dear friends and family,
I wrote the beginning of this a week ago and then got interrupted and promptly "lost" the document. Found it today and decided to send anyway, as the chronicles continue...
5/15/00
Dear Everyone,
Definitely a new, and unwelcome experience for us today. Fortunately, a good ending to today's ride. Last night (Mother's Day), Travis was crying about acute pains in his legs -- in the back, behind the knee. (And many of you "cancer parents" reading this know exactly in the pit of your stomach where the mind automatically goes with this complaint.) Joe and I kept our voices calm as we asked Travis all kinds of questions about the pain and location and possible causes. Regardless, we were totally shaken up, as this was the exact symptom that presented itself when Travis was first diagnosed with cancer (it was the symptom that alerted us to have him checked out) two years ago.
In response to our 9:00 pm phone call on Sunday evening, our Hematology/ Oncology/ Transplant doctor in Milwaukee said to bring Travis up in the morning. We raced up there first thing, and much to our DEEP relief, Travis' counts came out pretty normal. They did conduct additional blood tests to check if Travis still has 100% donor marrow cells (and not his own cells reproducing) as well as another PCR test to detect the Philadelphia Chromosome (cancer).
5/21/00 -- So now I'm back with the end of this update. And it's more good news with still some open questions. Travis' additional tests came back as 100% donor marrow (thank you, thank you, Marge!) --which is critical to ensure that he has only healthy marrow growing new cells, not his old diseased marrow. And also, the PCR test (which they must have rushed through) showed NO sign of the Philadelphia Chromosome. Thank God. Even though the blood tests showed "fine", we still had unspoken nagging doubts until these tests came back late this week.
The questions we still have are: Why is Travis experiencing joint pain behind his knees? Growing pains? Too much soccer? Side-effect from Strep Throat (which we've heard is a possibility)? And what's with the frequent headaches and dizziness he's had this past week? We just can't figure this out -- and aren't sure what we should DO to figure it out. Right now, we're reading Nancy Keene's new book (Childhood Cancer Survivors) to look for ideas on what this might be.
Hopefully, all this is just normal child growing stuff, but even as I type that, the phrase just doesn't fit a post-transplant child. Probably the most remarkable part of this last week was the realization that it only takes an instant for us to be transported back into "cancer hell" -- that seemingly innocuous events can trigger us (primarily Joe and me, but surely Travis and Spencer, as well) instantly back into a mode of "nothing else matters -- we'll do whatever it takes to beat this" and feeling true fear for the life of our child. Fortunately, Travis took all this in his stride. If he was nervous, he didn't express it -- even given ample opportunity to do so with us and his "feelings doctor". I truly believe it's because he has such tremendous confidence in his medical teams, both here and in MKE, as well as in us as parents and his faith in God, that he just figures all will work out okay. Spencer reacted more directly, by asking quietly, "Are you taking Travis to MKE to see if the cancer is back?". Leave it to him to "put it out there" -- and rightly so. We were somewhat direct with both boys, explaining that since Travis had a checkup in the next few weeks anyway, we decided to move it up -- and yes, to make sure that there wasn't any cancer, along with the regular tests. Spencer's reaction was "Well, I definitely don't want Travis' cancer to come back because I don't want him to have all the pokes and medicines again, but I do like the Ronald McDonald House, so that would be a small good part that would come out of it." Out of the mouth of a 6-year old, huh? The resilience is amazing.
Whatever lesson this was supposed to teach us, I suppose, is what we hear so many people say: Don't take life for granted. Try to live fully each moment and treasure what we have in our lives.
OK, we're thankful for the wake-up call. Now, we're hoping it's back to our new life with this learning -- and no cancer.
Thanks for being there.
Love,
Melanie (2 weeks to the Stockholm marathon/$15,000 raised to fight cancer), Joe (starting training with Leukemia Society's Team in Training for the Chicago Marathon in Oct.), and Travis and Spencer (both excited beyond belief for "spoilsville -- a week with my parents while we're out of town!)