Smiles and Giggles

Becca really enjoyed playing on 'Nise's playset on Sunday... you can tell by the giggles!

 Lily's camping party at Nanna B's and Poppa's farm... what a blast!
 Scrunchy face Becca - she's been sporting this expression (on and off) since she was a tiny girl.
Loving the swings!

It's been a pretty good week!  Becca's platelets are up over 100K, her hemoglobin is holding, and she has some energy.  The docs pulled her fluids, so now she's not hooked up during the day, and she is only requiring two IV meds each day for a total of 2-3 hours.  Her oral meds have been cut a little, too, which makes for much less griping.  Ethan and Becca left for the hospital at 6:30 this morning so that she can get her weekly IVIG infusion in the day hospital, and we're hoping they will pull her Cipro (IV antibiotic) starting today, too.  Will write more when I have more time.

Oh, wanted to share one of Becca's quotes from yesterday.  Ethan was cleaning the basement, while Becca colored at the kitchen table.  After a little while of hearing Ethan move things around, Becca stood at the top of the steps and called to Ethan, "Daddy, what the hell are you doing?"  Guess Ethan's good parenting is rubbing off on her a little... :o)  Tried to upload a giggly video of Becca, but it's not working this morning, so I will try later tonight.

Thanks for continuing the prayers, positive thoughts, etc... we are fueled by them! TK



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



Trying to get in a routine

So, we've been attempting to get into a routine at home, as I'm sure most of you are with your own kids going back to school.  We are having much more success with Lily's routine than Becca's.  When we have a day that we don't have to go to Children's, it's much easier.  Ethan and I have decided to run Becca's 12-hour IV fluids during the day, rather than at night, so that she is able to sleep.  This has worked so much better, although it limits what she can do during the day.  She tried to ride her bike this morning to no avail...

On a perfectly routine weekday, here's the plan for Becca's day:

  • Trisha wakes up and removes Becca's IV fluids from the refrigerator so they have a few hours to warm up to room temperature before hooking her up
  • Ethan or Trisha begin getting Becca's five morning oral meds ready between 7:30 and 8:00 (they require crushing a pill to mix with chocolate syrup, emptying capsules into a small amount of Danimals, and drawing up these and the rest in a variety of sizes of syringes)
  • Ethan attempts to get Becca's oral meds in her mouth and down her throat by threatening, bribing, or whatever works while simultaneously trying to get her to eat (so that she doesn't take her meds on an empty stomach and vomit) and putting together and priming tubing, IV fluids, and pumps  
  • Becca is hooked to her Cipro in one lumen of her central line and her IV fluids in the other one after Ethan flushes both lines
  • Ethan continues to fight Becca's stalling of taking her oral meds, sometimes threatening to take her to the hospital if she can't take them orally
  • He moves her bedside commode down to the family room so that she doesn't have to walk all the way to the bathroom every 10-15 minutes with her two pumps and IV fluids when she needs to go
  • After an hour, the Cipro pump alarm goes off, and Ethan unhooks that line and flushes and caps it
  • Ethan and Becca spend some time together playing games, doing puzzles, reading, snacking, etc.
  • Six hours after Becca takes the oral meds, Ethan starts over trying to get her to take more, and she usually stalls again, telling Ethan that she'll take them when I come home.  The problem with this is that it throws off the nighttime meds that are supposed to be taken six hours later.  It usually ends up with us having to wake her up to take them, which is NEVER good.
  • We have some time with all four of us at home, eating dinner, playing, doing homework, etc.
  •  Around 8 or 8:30, Becca needs to be hooked up to Cipro again (for an hour), so prepping the tubing and pump starts at about 7:45.  Every other evening, she needs Micafungin, which also runs through one of her lumens, so she needs to be hooked up an hour earlier to get them both in before bedtime.  Otherwise, she's awakened when we unhook and flush her lines or from having to go to the bathroom so often.
  • We all head upstairs, Ethan bringing the bedside commode (and cleaning it out), while I get the girls ready for bed.  Ethan usually begins reading with Lily, and I read with Becca.  I typically fall asleep with Becca first, then Ethan wakes me up so that I can lie down with Lily (and fall asleep with her).
  • Nighttime oral meds are prepared by Ethan (or me, if I miraculously don't fall asleep), and we attempt to get them in Becca while unhooking her fluids and Cipro/Micafungin and flushing her lines.  At this point, it is usually after 10pm.  
Granted, Becca is going to the hospital in Clifton two or three times a week, so imagine how that throws off this routine.  Also, think about trying to drive the thirty minutes to and from the hospital with Becca hooked up to fluids and needing to "go" every 10-15 minutes.  She will not even discuss trying to wear a pull-up, as she insists, "I'm NOT a baby."  Becca splits her "seat" time in the man-van between her booster seat and the portable pink toddler potty, and though it may not be legal, when you've gotta go, you've gotta go.  

Dressing changes and home care visits throw this schedule out the window, as well as Becca sleeping late or refusing to take her oral medications.  Finally, Becca screaming in pain and vomiting up all of her nighttime meds (as happened just a little while ago) kind of gets us off track.  At least she's not waking up every 20 minutes to use the bathroom at night now... that was simply dreadful!  We are all sleeping much better lately, and she is so much happier at home.  It's amazing what being in your own home with your family can do for healing your mind and body!  Her BK virus is clearing up a little, too, so some medications have been pulled, including most of her pain meds.  The whites of Becca's eyes are white again, and most of the dark bruising on her face has gone away.  She kind of has a gray tinge to her, though.  Her weight is also slowly going down, since the VOD has virtually disappeared.  The doctors are happy with her numbers, including some indicators that her body is starting to make its own red blood cells (the slowest counts to come in on their own after a bone marrow transplant).  Her hemoglobin was really low on Thursday, and we thought they were going to give her some packed red blood cells before the weekend, but Dr. Grimley wanted to wait to see what her body does over the weekend.  She's going to the clinic at 7:30 tomorrow morning, so we'll see what they say.  We're crossing our fingers that her hemoglobin went up on its own.

Becca's just starting to miss playing with other kids a LOT this week.  I think it's because Lily is continuing to play with others, whether at school or at their houses, and Becca feels left out.  Ethan plans to check with the doctor tomorrow morning to see if she is allowed to have a very healthy friend over to play sometime.  We walked over to our neighbors' last night, as they invited Lily over to roast marshmallows in their backyard firepit.  Becca felt quarantined (and rightly so!), so the brief time away from the house seeing other kids and people was good for her spirits.  She received a makeup kit on Friday and was looking in the lipstick compact when she sadly noted that she doesn't have any eyelashes or eyebrows.  I forgot that she hadn't really seen herself up close for a long time.  I explained to her that the chemo took them when it took her hair.  Becca was pretty miffed that I hadn't told her, but I reminded her that they will grow back, just like her hair.  She replied, crying, "But not quickly!"        

Thank goodness Lily doesn't want to participate in any sports or extracurricular activities right now!  I don't know how we would do it.  We're having enough trouble just getting her to want to do her homework.  She surely takes after her daddy in that respect, although Lily absolutely loves school and her teacher (just like me).  

We really appreciate all of the continued thoughts and prayers... PLEASE keep them coming!  They are what is helping us get through this.  TK