Monday, July 10, 2017

   Happy Anniversary? So, yesterday, July 9th, was the two year anniversary of Claire's relapse. That's such an odd word to use for that date, though. Like it's something to celebrate or commemorate. I don't even know if Claire remembers the date, but I certainly remember things around it. Like a hike we took close to that date when Claire got so tired after a just a short distance that we turned around and went back to the car. Or me spending a week at a church camp but sneaking up the road in my car  every day to call Claire at home and see how she was feeling, because she had been having low grade fevers for a week or so. Or the extended family 4th of July party where Claire decided to go home early because she "wasn't feeling great." And I'm surprised by how many things we did this year that brought those memories up for me, memories that I don't voice out loud because I don't want to influence my children's feelings by bringing up my anxieties. And so it goes. On the 3rd, Claire had her regular appointment with her oncologist at Primary Children's. She only goes every three months or so now. (But she sees plenty of other doctors in the meantime; orthopedists, endocrinologists, general practitioners for those pesky childhood vaccinations.) And going to Primary is kind of like a fun reunion. But a reunion where you are always holding your breath just a little. The first stressful news was that Claire had lost weight. Almost 5 pounds, in fact. I suspect it's because she hasn't been in school where she is tasting things all day, but the whole weight thing has a lot of emotion behind it for Claire because gaining, or even maintaining weight has been a struggle for her since relapse. So she has started taking some meds that help with her nightly nausea (probably from her targeted therapy drug that she will take through this year) but make her more tired during the day. It's a trade off, I guess. And now my freezer is stocked with full fat ice cream, which doesn't help me with my weight struggles. Perspective, right? The second stressful thing was that her blood counts, especially her platelets, had dropped. Dropping platelets is a big red flag for a leukemia mom, but you have to hold it together and nod and ask how concerned you should be about it, because you don't want to go to the crazy place. It doesn't help that this info is being given by the nurse practitioner, who is usually more cautious (and, sorry, in this case occasionally less informed) than the actual doctor. Then our wonderful Dr. A came in and pointed out that there had been a pattern of dropping platelets two other  times within the past year (doctors like patterns the way that lawyers like precedent) and that she suspected it was the targeted therapy (imatinib), but that we didn't have to guess because we had science that would prove it one way or the other. Of course, that particular test that measures BCR-ABL takes about a week to come back. So, I had ALL week to try and not stress about it or ask Claire how she was feeling or casually touch her forehead to check for fevers because all of the emotions from two years ago were right there. And that's how it is for a cancer parent. Once you're in that world, you're always in that world. And you try to keep everything cool and casual and down, but there is a part of you that is always throwing a side eye over your shoulder. Are you starting to skim through the post to see what the outcome was? Because that's what I would be doing. Dr. A called Claire this morning and told her she was really happy that both BCR-ABL tests were negative (0.00000 if you want to get specific). So, yeah, happy anniversary. Sigh. And now we go back to the business of being normal until her next blood draw/appointment. And we pray for other families and children whose needs are more immediate, and those who have gone through the unimaginable but you know that their emotions are easily triggered like yours are. And maybe you just go ahead and eat some of that ice cream in the freezer.

       Waiting for the Independence Day fireworks show.


       The whole fam-damily.


      Just hanging around the firepit.


       Enjoying historical sights in Missouri.


      Indian burial mounds close to Nauvoo, Illinios.


      Enormous brunch in Chicago.


       What time is it? Showtime!


      Navy Pier, Chicago.


      I love the buildings in Chi-town.


      With our sweet friend Tiffany. Till we meet again.