10.29.2012

Whew!

So Becca actually slept all night without waking me up!  I was really thankful after two nights of being woken almost every hour, but at the same time, I was a bit worried.  She came into my bathroom around 5:30 to use the bathroom, so I was relieved.  Ethan and Becca took off for the clinic around 6:45 this morning, and I waited anxiously to hear what the docs thought.

Dr. Grimley (our attending) is on service on the Bone Marrow Transplant unit this week, so he didn't want to see Becca.  Ethan, being the pushy, advocate daddy that I love, demanded to have an attending doctor see Becca.  Luckily, Dr. Stella Davies, the head of the department, stopped in to examine her.  We really like her and trust her completely.  She's kind of like a doctor version of Mary Poppins, and has the English accent to match.  When Ethan mentioned the hallucinations over the weekend, she immediately said that it was most definitely the Posaconizole.  She mentioned that it is has psychotropic properties for some kids, and the ones who experience these side effects are pretty disturbed by them.  Though the nurse practitioner and nurse looked at him like he had done something wrong by cutting off her Posaconizole dosage, Dr. Davies said that he had done the right thing.  It turns out that many kids have allergies to all of the -azole drugs (antifungal), and Becca happens to be one of them.  This makes sense, as she has had reactions to Voriconazole, Fluconazole, and now Posaconazole.  Rather than put her back on Miconazole (which is an IV drug that Becca doesn't react negatively to), Dr. Davies decided to just discontinue the antifungal medications altogether.  As long as we don't tear open any walls or expose Becca to mold spores, she thought we would be fine.

Ethan was also told that most of Becca's medications would be gone by Thanksgiving.  She'll probably continue on prophylactic antibiotics for pneumonia, but other than that, she won't have to take many oral medications.  This is great news!

Unfortunately, Becca's labs taken today showed some problems with her BUN and creatinine.  They were both pretty elevated, but Dr. Davies felt that this was most likely due to the rough weekend and Becca's dehydration as a result of vomiting, diarrhea, and little intake.  Today they gave her a bolus, and drew her labs again.  Her levels were still high, so she will need to go back tomorrow for more lab draws and fluids.  Ethan and I were relieved that she wasn't admitted, and we hope that they can get her kidneys healthy again quickly.

Overall, Becca looks and feels a ton better today!  She has eaten and had a lot to drink this evening, so I think the effects of the Posaconazole are wearing off.  Ethan and I both remarked that it was nice to have her back.  Thanks for the positive thoughts and prayers!
TK  

10.28.2012

The other shoe dropping

My last post was titled "Foreboding joy," and in it, I mentioned waiting for the other shoe to drop.  Well, it's been dropping.  The Tuesday after I last posted, we started Becca on a different anti-fungal medication, one that is oral.  We are attempting to switch all of her meds to those she takes orally so that we can get her central line removed and a port placed sometime in November.  This way, we won't have to do dressing changes every week (which are still HORRIBLE), and she can bathe and swim.  So, anyway, after a couple days of Fluconazole (a medication she had taken previously without incident), she had an allergic reaction that included vomiting, diarrhea, and a flushed face which ended up turning almost purple.  Becca even told me to call the ambulance, so we knew it was pretty serious.  We gave her Benadryl and called the clinic the next day to let them know we were not going to give her any more.  The docs okayed us putting her back on the Miconazole through her central line until they saw her on Monday (and had more time to do some research into the next drug to try).  It was a little eye-opening for Ethan and me, because Becca now has a whole new immune system, which could potentially bring new allergies along for the ride.  We started to think about peanut butter, strawberries, and certain foods that she might now have an allergy to, let alone all of the medications.  Becca asked if we were going to add that medicine to her bracelet (the already full red allergy bracelet that she wears at the hospital)...

So after the Monday appointment where her labs still looked great, Becca was started on Posaconazole as the new anti-fungal. She seemed to be doing okay with it until Friday night.  Around 12:30, she woke up to tell me that her glow-in-the-dark stars were talking to her and trying to tickle her.  I didn't think much of it, since she often used to tell me she had dreams that stars were trying to tickle her.  She was having some pain and itching down below when she used the bathroom, and couldn't sleep, so Ethan gave her a tiny dose of Dilaudid for the pain. Approximately every hour after this, Becca woke me up to help her go to the bathroom, and she was saying really weird things.  I was so out of it from sleeping myself (and having taken some Tylenol PM for body aches and pains resulting from working out) that I didn't put it together that she was hallucinating.

She mentioned blue men and bugs, and finally, when Ethan went in to help calm her down, she really freaked out.  Becca started screaming and crying, panicking that Ethan had an EpiPen and was going to stick her with it.  The really scary part was that she really believed it.  I took her downstairs to calm her by rocking her in the chair, and she kept talking about the bugs she was seeing, and she thought she saw Lily outside the window laughing at her, as well as Stella walking by her.  Her speech was very quick, yet kind of breathy and paranoid, and every time Ethan came near her, she freaked out more.  A little later in the morning, once Ethan was able to convince her that he didn't have an EpiPen, he was helping her in the bathroom, and she asked about the man in the yellow pants that just walked by.

Needless to say, we were all a little worried, and we cut the Posaconazole from her meds.  The hallucinations stopped, and she ended up taking a three-hour nap on Saturday.  Today she has just been "off," and Ethan and I spent the day worried that we were going to end up inpatient at Children's again.  She hasn't eaten all weekend, and she's not been drinking much either.  The little bit of milk that she drank this morning and her morning meds were vomited up right before we left for the Disney on Ice show.  Though Becca hasn't had a fever, she's been alternating between being really hot and shivering.  The show was great, and it was so nice to be in the Dragonfly Foundation box, as we had a bathroom in our suite, and not many people around us.  When we returned from the show, Becca was pretty wiped out.  She wanted to go up in her room and watch a movie with me.  Yesterday, this was the trigger for her nap, so I gladly went up with her to nap.  She fooled me, though, because she wanted to color, cut coupons, and make a shopping list for Ethan.  He returned from the store with the hot fudge sundae that she requested, and she downed about half of it.  She then wanted a grilled cheese, and after eating half of it, the ice cream and grilled cheese came back up.  Still no fever, though, so we did a cap change, gave evening meds, read books, and put her to bed.

I included the pics I promised below, and I will post some more soon (especially now that her hair is growing in so fast).  Becca's hair was actually long enough to stick up a bit this morning!  We are anxious to see what tomorrow's clinic visit holds.  Please pray that her labs are good and that these mysterious symptoms don't land her back on A5 North or South!
TK

 Becca LOVED Camp Elmo last weekend, and it was the perfect day for her to ride her pony, Daisy!

 Becca had her makeup done by Sephora specialists during our visit to the Cincinnati Ballet School's preview of Alice in Wonderland

 A pre-Halloween look at Becca's cheetah costume and the cat pumpkin she carved with her daddy

 Both girls, post makeup at the ballet school

Becca cheered on Lily at her 5K practice for Girls on the Run Tuesday night, and she even ran a couple of laps - was so nice to see her full of energy!

10.19.2012

Foreboding joy

I am feeling so very blessed, content, loved, and utterly happy tonight.  Here are a few reasons why (in no particular order):

  • partook in yummy luncheon full of wonderful foods at LECC today, and Ethan and Becca delivered a fabulous fall salad as my contribution - wish I would've taken a pic, but it was a spring/baby kale mix with candied walnuts, sweet potatoes, bacon, apples, pecans, carmelized onions, blue cheese, and a pear/apple cider vinaigrette presented in an actual pumpkin "bowl"
  • was able to see one of my favorite people EVER while at LECC today, one I miss dearly who is married to another of my favorites, and who has shown so much love to our family
  • had a heart-to-heart with Lily at bedtime tonight, and I realized what a great kid she really is!  Some of you already knew that (and deep down I knew it, too), but we've been butting heads a lot lately.  It could be the irreverence she gets from Ethan or the stubbornness she gets from both of us...  On the other hand, Lily is so very sensitive, compassionate, intelligent, perceptive, hilarious, and beautiful, and she's showing her maturity more each day.  I'm looking forward to having more good talks.
  • looked at Becca's labs earlier this week, and I couldn't be happier.  Not only are her hemoglobin, platelets, and ANC at awesome levels, but her liver and kidney function seem to be in the normal range again finally!  Even better news for me, the overachiever or perfectionist (whichever term you prefer), her FISH engraftment test came back at 100% this week!!!  This means that the donor's cells have completely engrafted in her body, and no female cells are left.  We were hanging in the upper 99's, but I feel much better with 100%.  It is amazing to me what Becca's strong little body is doing, too - her eyelashes are back to their pre-chemo length and thickness, as well as her eyebrows, and her hair is growing incredibly fast.  She is also eating a few more foods (without the aid of medication), and her stamina and energy are continuing to go up each day.  I just soaked up my sweet, sassy girl at bedtime tonight.
  • was reflecting on recent Loveland and Kings events and feeling extremely loved and supported by so many friends: former and current students and coworkers of mine, fabulous library volunteers (both past and present), J.F. Burns teachers and classmates, and people who don't even know our family.  I am continually astounded by the caring and generosity of our community; it makes me proud to say I'm from Loveland.  A huge THANK YOU to all who coordinated, participated, attended, or helped in making these events such a success! Becca has become quite the celebrity lately, though, so I need to make sure it doesn't go to her head...
  • enjoyed talking and laughing with Ethan tonight after the girls went to bed.  Lately, we have been doing a lot of talking at each other (communicating details about who's doing what and when, who took which medication and when, who needs to do what and when, etc.).  Not exactly quality time.  The few minutes we had together tonight reminded me why I fell in love with him (what seems like) eons ago.  I am so thankful and lucky to have such a strong husband and friend to make it through these tough times.  Honestly, I don't know how I could do this without him.  Not only is he a good-looking man who can cook and make me laugh every day, but he is also a wonderful father who parents with humor and honesty.  We complement each other well.  When I am struggling, he is a rock and manages to bring me back up with his humor or thoughtfulness, and when his patience has run out, I give him the time he needs to de-stress by "killing nature" (Becca's term for hunting) or just getting away from the house for a little while.
So, I could probably add a few more items, but those are in the forefront tonight.  As I soaked in the tub this evening, thinking about how content and happy I was, I began to feel this sort of dread start to invade the warm, fuzzy feelings.  You know what I'm talking about... when everything feels right, and you're waiting for the other shoe to drop.  I went to a conference last February and attended Brene Brown's keynote, in which she described this as "foreboding joy."  Not surprisingly, in her research she found that the antidote to foreboding joy is practicing gratitude.  As you can tell, I'm feeling pretty grateful tonight, and I wanted to share it with all of you, since you are the ones who have helped to make my gratitude possible.  Now I'm going to go to sleep to enjoy the joy...
TK    

P.S. Will try to post some pics soon!  
 

10.06.2012

A positive post :)

Like father, like daughter!

Okay, so I feel a bit guilty about all of my recent posts being sad or negative.  Unfortunately, it was reality.  Today was a really good day, so I couldn't wait to get home and tell you about it.  To most of you, it won't seem extraordinarily fabulous or exciting, but I have such a smile in my heart right now that I just needed to share it with you.

Becca's first playdate since July with a child her age was today, and she could not wait for Camden to come over!  She had so much energy this morning that it was amazing.  Usually, when she needs to go upstairs for something, she tries to con Ethan or me into going up with her, saying that she needs help.  This morning, Becca and I started cleaning the playroom (umm... we couldn't walk in it, and Camden was coming over at 11am), and she made four or five trips up and down the stairs to put things where they belonged, retrieve items, etc.  I was planning on starting small... just having her clean/organize with me for 10-15 minutes, but we got the room spit spot, and worked for more than an hour.  What a coincidence that Lily was hungry when we started the project, and she managed to "eat" for the whole time!  Anyway, Becca and I spent a large amount of time sorting the Polly Pockets in a large tub, the Squinkies in a smaller container, the Littlest Pet Shops and Zoobles in another large tub, and the Barbies, Barbie horses, carriages, accessories, and furniture in two large fabric baskets.  Notice I didn't even mention the dress up clothes, arts and craft supplies, the plastic food and dishes, the puzzles, the dolls, the musical instruments, and the fake guns.  Yes, all of these things live in our playroom.  Needless to say, we finished up a few minutes before Camden and her mommy rang the doorbell.

The girls started out coloring next to each other, with Lily helping to find just the right page and markers for Camden, and we could hear the giggles from the other room.  Becca was a chatty little thing, acting pretty goofy, but that could have been her way of covering up a little bit of nervousness.  She has been the center of attention for the past six months, and really hasn't needed to share much, so I was wondering how the playdate would go.  I must admit that I was a little worried about Becca's language, as she has been freely using certain words at home with us that might not be as acceptable to other families.  I forgot to talk with her about it before Camden got here, so I pulled Lily aside and she understood.  When Becca left Camden in the playroom to ask me something, I spoke with her quickly about not using inappropriate language, and she immediately got a worried look on her face.  She said, "I'm sorry... I already said something that might not have been appropriate."  With her eyebrows furrowed, she said, "I think I said, 'What the hell?' I'm sorry!"  I was trying to not burst out laughing, so I calmly told her that it's okay. Camden might not have heard or understood her, but to not use that expression or the word that means "butt" anymore.  She whispered to me that she wouldn't use "boobies" either, because it's not funny or appropriate.  I wish that you could have seen her expression... it was precious.

Despite the "language barrier," the girls had a good time.  Becca didn't really play with Camden all that much, claiming that she didn't want to play what Camden wanted to play.  Camden kept trying to get her to play Barbies with her, but it was more of a parallel play kind of situation.  It seems as if Becca has regressed a bit, due to being away from other children for so long, so we will need to work on some social interaction skills.  It's a good problem to have, considering we never thought we would make it this far.

Once Camden left, Becca was a little wiped out.  We had some puzzle and cuddle time, then we made  brownies with Ethan.  It took some coaxing, but I talked her into going on an adventure with me while Daddy went hunting.  Though Becca loves to go shopping, she is quite hesitant to go to new places.  She's worried she'll need to go to the bathroom, or she'll be around too many people and get sick.  Yeah, I think she's been listening to us...  It's almost as if home is a safe, comfy place for her, and she doesn't want to leave it.  At the same time, she's bored at home and has cabin fever.  How hard it would be to only be six years old and worrying about these things.

Becca and I headed over to Joann Fabrics to find some new fabric for our dining room chairs.  We picked out the perfect one, but there was only a yard left, and the line was a mile long.  I will try to locate it at another store, because both of us loved it.  Becca really does have an eye for color and patterns.  She wanted every cheetah print fabric we saw, and I wanted to buy some and sew something for her.  It was SO crowded, though, that I didn't want to wait in line when I knew the window of her feeling good might be shutting.  She told me that when she's a grown-up, she's ONLY going to wear cheetah print (LOL).

IKEA was the ultimate destination, and we had a blast riding in the car and singing on the way.  I know Kidz Bop 20 by heart, and so does Becca, so there was even a plethora of hand motions going on in our car.  I don't know if I have mentioned in the blog before how one of my favorite things to do is to ride in the car with the girls while we sing.  It used to be Lori Berkner songs when they were smaller, then the Mamma Mia soundtrack, but now we've moved on to the Black Eyed Peas and Kidz Bop.  I will often readjust my rearview mirror so that I can watch Becca while I drive.  Seeing her so happy and feeling so good tonight brought me smiles and tears of joy at the same time.

I know... it's not the wild, crazy Saturday evening many of you have (or had when you were younger), but it's been a great day!  Just had to share...
TK

P.S. Seeing Becca sing "My Hump" by the Black Eyed Peas is simultaneously hilarious and disturbing. :)

10.01.2012

Happy 2012-13 Hunting Season

Happy Hunting Season greetings, one and all!  I would like to take this opportunity to shamelessly ask if anyone has any land that they are willing to let me hunt on, especially if they have ducks and/or geese.  Big thanks!  My email is chef.kniskern@gmail.com

In Becca's mind, spending all day every week day with Daddy is not her idea of a "Good Day." She classifies these days as "good, bad days." We actually have a pretty good time, even when we are in the hospital all day.  Often we do "school"  while sitting through a 5-hour infusion; this involves writing a partial sentence in black dry erase marker and then the concluding word in a different color.  Becca smells like: poop, farts, dog, rose, butt, butter, butterfly.  She also frequently has to sit through my rants against the English language as happened recently when we talked about the words does, does (a female deer), doze, dose and reed, read, and bread?  Where, oh where, did Esperanto go?

Becca is eating much better in terms of volume these days, but from a menu as limited as ever.  She has 2-3 Yoplait light boston cream pie yogurts with pretzels for dipping spaced out between her 3-4 grilled cheese sandwiches on seedless Italian bread with Kraft american cheese just about every day.

Becca's hair, her eyebrows, and eyelashes are starting to grow back, and most of the bruising is gone on her face.  She still looks pretty dark around the eyes, but not "Uncle Fester-like" at all.  She also has three new loose teeth, so she may be wanting her two front teeth for Christmas this year.  Becca's counts look wonderful... her platelets are over 150K, ANC is over 2,500, and her hemoglobin is almost in the normal range.  She hasn't received red blood cells or platelets in a few weeks, so her body's new factory is doing its job.  It's pretty amazing how resilient her strong little body has been!

All in all, we feel pretty fortunate to be where we are right now, especially considering we have not been back in the hospital inpatient for any fevers or bugs.  If I only typed it, it does not count as saying it aloud...right?!  EK