9.16.2012

MONOcracy

I drafted Ethan to take Lily and a few of her close friends to his parents' farm for a belated birthday camp-out, so I figure I should be the one to update the blog this weekend.

This week has had its ups and downs.  Becca started out the week still constantly using the bathroom, with pain and blood in her urine.  A 7:30am clinic visit caused angry screams of "I'm NOT going to the hospital!" and "I'm going back to sleep NOW!" followed by bawling and pitiful questioning of why we had to always go to the hospital and were we going to stay there "FOREVER" on Monday morning.  Amazingly enough, Lily didn't wake up through all of it.  I put Becca in the car with Ethan around 6:45, and she pleaded, "Why can't YOU come with me, Mommy?  How come you never get to take me?" as I wanted to cry with her.

The doctors told Ethan that hopefully the BK virus she has would go away by the end of the month.  Yeah... that's what I said!  Ethan and I were pretty shocked and dismayed by this, because it's been a long few weeks since she started having issues related to the virus, and to think that we would have three more was crushing.  The good news on Monday was that Mrs. Finn, Becca's Kindergarten teacher last year (and this year!), began coming to our home to provide homeschooling for Becca.  She was so excited and couldn't wait for Mrs. Finn to come.  It was fun to watch the two of them interact, and to see Becca in the role of student.  Mrs. Finn was impressed with her stamina, and Becca reminded Mrs. Finn how to play UNO during a break after the first half of their hour together.  The following afternoon, Becca sat down with a clipboard and her pencil to complete all of her "homework" in one sitting, which included a new type of handwriting... YEAH!  Finally, Kings has moved away from D'Nealian, which was so difficult for many kids.  I'm curious to see how Becca's handwriting will turn out with one type taught last year and a new type introduced this year... perhaps a hybrid of the two?

Tuesday evening, we had to do a late dressing change, and it did not go well at all.  We ended up being seconds away from pinning her down kicking, biting, screaming, and pinching, but Ethan managed to talk her down before we got started.  Let me tell you, trying to get nighttime meds in after that was fun!  Poor Lily hid out in the front yard so that she didn't hear the screaming.  Becca actually told me before the "procedure" that I wanted to pin her down so that I could punch her in the face!  It shocks and depresses me that she feels we WANT to cause her pain...

So following that disastrous night, Becca became "Becca and Hyde," with mood swings reminiscent of steroidal Becca.  It wasn't good, and I actually dreaded going home.  Though she wants me with her constantly and chooses me to help her with everything when I'm home (poor Ethan feels liked chopped liver), she doesn't hesitate to scream at me and make me feel like an abused wife.  It is really exhausting, and I know I'm not supposed to take it personally, but I'm not one who likes conflict.  She didn't discriminate on Wednesday, though, and even when Mrs. Finn and Lily played a game with her, they got a glimpse of her mercurial moods.  At the end of the evening, once she was asleep, Ethan and I looked at each other and said simultaneously, "WHAT was THAT?!"  We decided that she was probably tired, as she had gotten up early a few days this week, then slept in until 9:30 one morning, and that's why she was acting the way she was.

Unfortunately the abuse continued the rest of the week, but the good news on Thursday was that the blood in her urine went away.  We had to wake her up for an early trip to day hospital for IVIG, and we made sure to prep her more the night before as to avoid what happened on Monday morning.  Dr. Grimley was impressed with her platelets - her new marrow has kicked in and she is up to 85K!  Though her hemoglobin is low, it is hanging in there, and they want to see what her body will do.

Friday we got a call saying that Becca tested positive for EBV, and that they would need to put her in day hospital on Monday to run a six-hour medication.  Apparently, she had this EBV (one of the most common viruses post-transplant) at the beginning of September, but the docs were watching it closely.  Her EBV quant has skyrocketed, and they said that it is a mono virus (as in mononucleosis).  Yes, it concerns us, but it also explains the naps and sleeping in late that occurred a few times this week.  Becca's sleep usually depends on the sun, so this was not typical.  

More ups and downs Friday evening and all day Saturday, and thus the title of this post, "MONOcracy."  She has mono, but also, a monocracy is "government or rule by a single person."  Can you guess who has been setting the tempo for the past few days?  I'm so glad that Ethan and Lily were able to have some time away this weekend... they surely deserve some fun on the farm enjoying this beautiful weather.

Please don't misunderstand me and think that every minute was horrible this week; as I said, there were ups and downs.  I didn't mention the sweet moments that are there every day... the best hugs in the world that Becca gives, the giggles, the competitive UNO games in which Becca doesn't hold back, the cuddling following a fit, the "I love you most, most, most, most, most... MOST!" that goes on forever after I say "I love you more," the reading books together at night, the "Yes, please, Mommy" and "Thank you, Daddy," the brave way she takes her medications counting "1, 2, 3" then shuddering and saying "yuck," and the sweet little voice that told me, "I love you, love you, love you, too, Mommy" tonight as I left her room.

I will leave you with something Becca said this morning that made me laugh.  Yes, she makes me laugh every day, because she is a sweet, feisty, and funny girl. PBS was on the television, and a song that said something like, "What kind of eater are you?" was playing.  They were flashing the words "herbivore" and "carnivore" and showing examples from their shows, so I asked Becca what kind of eater she is.  She yelled out, "PICKY!"  Oh, how true...  TK


 

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