Travis Update 2/02/02
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
| | HOME || TRAVIS UPDATES || UPCOMING DRIVES || HOW TO HELP || LINKS | |||||||||||||||||||||||
|
|||||||||||||||||||||||
| "Just Praying and Waiting" Travis Update 2/02/02 |
|||||||||||||||||||||||
| Dear Friends and Family, | |||||||||||||||||||||||
| Thank you for the tremendous outpouring of support and prayers in response to my last update.� Honestly, it lifted me up so much - I felt quite buoyed by all the optimism and caring.� And I even received two emails from "cancer families" that had experienced false positives with this test.� So that's given me clear focus - praying for a false positive. | |||||||||||||||||||||||
| Travis and I blasted through the 10 inches of new snow that dumped on Wednesday night and made it up to Milwaukee with no problem on Thursday.� I did explain to him again that his medical team had seen something that they wanted to double check - something that had concerned them a bit, so we'd be re-doing some lab work.�� I think it was enough to explain, without scaring him unnecessarily. | |||||||||||||||||||||||
| A few things about this trip were noteworthy... | |||||||||||||||||||||||
| When we greeted one of our wonderful nurses, who commented on Travis' cool shirt, he proudly explained that this was the shirt he'd received from the walkathon the day before he was diagnosed with leukemia in 1998. Oooh, gut punch.� I'd not paid attention to what he was wearing when we left - that creeped me out big time.� I don't know... kids are smarter than we think. Wonder what was up with that. | |||||||||||||||||||||||
| Also, we experienced a reminder that parents MUST be the constant advocate for their child.� As the lab technician prepared to draw the blood tests, I casually mentioned that I understood it was to be just the two tests, FSH and BCR ABL.� She replied that it was just one - the FSH - and that was all she had the tubes and labels for.� I was pretty firm that she should double check, and sure enough, she came back in with the labels, that had gotten separated from the first test batch in the other room.� I was pretty flabbergasted - that we could have come all that way and then agonized over 3 weeks to have found out that they hadn't drawn the chromosome test after all!� Again, right intent and loving care from the lab team, but still a parent's job to double check.� It could have happened anywhere.� I'm so glad I happened to mention out loud about the two tests. | |||||||||||||||||||||||
| Other than the blood draws (which were fairly routine - Travis says he thinks they?re pretty cool, as long as we use the numbing cream, EMLA), Travis was checked over in the clinic as well.� The good news is that his rough cold/cough (completely unrelated to the rest of this) is not strep throat.� Other than that, though I tried to ask questions every way I could, it was like squeezing water out of a dry sponge.�� Everyone wants answers, including our medical team - and there just aren't any right now. We just won't know any more until the next series of tests come back.� Jill, our star nurse, was loving and professional, as always.� (Thank you, wonder Jill!) She gave me the printout of all Travis' Philadelphia Chromosome tests since the beginning... which showed Ph+ until shortly after transplant and then Ph- since then, until now. That shook me up a bit, seeing things in black and white like this - Ph+ Round 2.� So now we just pray and wait, with likely results and more testing and waiting to keep a close check on whatever is found. | |||||||||||||||||||||||
| Travis' eye doctor (retina specialist) couldn't find the reason why Travis' eyesight isn't nearly what they'd expected it to be after the cataract surgery, so we went ahead with another test to check into things further.� Injected some sort of dye into Travis (another "poke") and then flashed many, many pictures of his eye insides while they monitored the dye going though the vessels.� Poor Travis was so worried about this test when he listened to us discussing it. He was exhausted (no sleep the night before from coughing) and then scared.� I felt so guilty for being so invasive - but knew we need to find out what's going on and try to correct the problem if possible. Thank goodness we didn't have to wait long for the test.� | |||||||||||||||||||||||
| He did get nauseous, but after a quick "yarp", he was fine to continue the test, as they'd predicted.� Travis and I discussed afterwards how we need to remember this experience to help him in the future - that usually the anticipation is worse than the actual event (Hmmm... duh.� I've known this forever, yet it was another important life lesson reminder in there for me - as we wait).�� We'll have results of the eye tests within a week or so. | |||||||||||||||||||||||
| We got to spend a few moments with Kathy Hanson Morris, mom of Teddy and Nate (many of you know Kathy from our list serve), who now works at the hospital, heading up a research project.� Her sweet Teddy had received his 2nd BMT in the room next to Travis in 1998 - and tragically, passed away about a year and a half later.� It was wonderful, as usual, to be with Kathy. There's a tremendous amount of mutual understanding between us.� We then bumped into Barbara Friedman, who is a 6-time Leukemia Society Illinois TNT marathoner (fastest walker I know). She was at the hospital with her husband and son, Kevin, who was there for his 8 year post-BMT annual checkup. Thank God, Kevin seems to be doing just great.� Pretty impactful, the three of us moms standing in the hall, each on our own journey paths with our children.� It moved me deeply. | |||||||||||||||||||||||
| As my wise cousin Ben emailed me, many old "tapes" were playing in my head during the drive up and during the visit to MKE.� Major emotional dust-storming, let me assure you. Travis shared with me as we were leaving that he felt as I did - both secure and heart warmed, as well as totally creeped out, being back in the hospital where so much occurred in the past.� We do feel safe and comforted there - but we know it's the place for serious, serious stuff.� | |||||||||||||||||||||||
| I'm so grateful for books on tape. Brought Travis and me through this trip faster than we could have even guessed.� So that's it - testing done.� Now we wait...� Approximately 21 days for the Phil Chromosome results.� I'm trying so hard to focus and keep working and moving through normal life, though I do notice that the wind is definitely out of my sails after the MKE trip. Took a lot out of me.� Joe is doing the same - just working and focusing on the here and now. And the boys are just trying to kick their colds (how normal is THAT?:-) and loving the winter snow that finally arrived.� You wouldn't even know to look at them that such deep questions and concerns are swirling about - they"re just best friends and brothers, playing each day. | |||||||||||||||||||||||
| I'll write as soon as we know anything. Thanks so much for your prayers.� Think "false positive".� | |||||||||||||||||||||||
| With love and much gratitude for sending so much optimism and strength our way, | |||||||||||||||||||||||
| Melanie | |||||||||||||||||||||||
| | HOME || TRAVIS UPDATES || UPCOMING DRIVES || HOW TO HELP || LINKS | |||||||||||||||||||||||