12.12.2012

Doing great

As we have often said on this blog, no news is good news.  Becca is (as she says), "Tired of looking at this house," so, yeah, she fights a bit of cabin fever. My cabin fever is bit different.  But, all in all, we have a pretty good time and are needing to go to the hospital less and less... currently once every two weeks.  We are also being transferred back the Hem-Onc side of things from the transplant specialists.  That is actually pretty big and is a major indication of positive things going on in her body.  This change will also get us back to seeing her original Oncologist that we like and trust very, very much. (despite him being responsible for her getting cancer again... kind of nice to be able to joke a little now). The time spent in the dark woods does not seem so bad once at hearth.   On a different note, we are heading to Florida for a winter vacation and to get back some of the summer that we missed.  Lily and Becca are really looking forward to being able to swim.  Trisha looks more forward to general warmth and sun.  Me... well as far as I am concerned, water is mostly wasted unless being hunted over or fished in.  Check out the video below of (a snippet of) Becca's first real bath, where she could actually get wet, since April.  I also uploaded some pics I thought you might like.
EK
http://youtu.be/_NHuqHH-Fqg - you probably will need to copy and paste the link to view it

 Buckeye dipping with Kate... YUM!  Don't you love the eye makeup that Lily and Kate put on Becca? It's really not from the bruising...

 Facepainting at The Dragonfly Foundation's (TDF's) holiday party - so much fun!

 The Festival of Lights - it was 70 degrees that day!

The girls are ready for Christmas (thanks, Aunt Louisa for the suits!), and they are showing off our new kitten Peanut.



11.14.2012

Moving forward

Becca now has a port instead of a central line!  For those of you who don't know the difference (because you weren't forced to be "in the know" as we have been), Becca's central line was a catheter (small tube) that was placed in her chest back in April.  The reason for the c-line was that she was to have lots of blood taken frequently, as well as getting chemo, medications, fluids, and blood products.  The two external lumens of the central line that dangled down her chest on the outside allowed her not to get needle pokes for each of these events, and they could draw as many labs as they needed and give products while Becca was sleeping.  The bad part about the central line was that she could not take baths, and she had to have dressing changes each week (very painful and emotional - see previous posts).

Becca's new port (Port-A-Cath) is a small metal button-like thing with a silicone top.  It was placed under the skin in her chest on Monday, and Dr. Frisher (the surgeon) said the surgery went well.  She had a port the last time around in her ALL treatment, and Becca's really excited to be able to take baths and swim again like other kids.  I love getting her to giggle when I mention that she'll be able to swim naked again!  The week before she was diagnosed with AML back in April, we took a spring break trip and stayed in a house in Florida that had its own private pool.  Becca's favorite bathing suit was her birthday suit, and she was so tickled at being able to swim this way.  I can't wait to see the look on her face when she is able to take her first bath and swim in the next few days...

Some results are in from the labs drawn Monday, as well as the bone marrow aspiration and biopsy done during surgery.  Overall, Becca's counts look good.  There are a couple of numbers that seem a bit out of whack, but nothing alarming that has triggered a call from the hospital.  I looked at the other test results online, and I was a little concerned that the FISH XY test showed only 98.8% of the cells being male (donor cells), and 0.2% being female (host, or Becca's own, cells).  The past two FISH tests have shown 100% male cells, so I was curious as to why the female cells are popping up again.  Here is our care coordinator's response to my email (which makes me feel much better):
No worries from the labs or marrow, the full/final report isn’t out yet or I would have called. Just didn’t want you to think we forgot about you. However, everything that is back so far looks great! The chromosomes are still pending, but Dr. Grimley believes her to be in complete remission and the fact there is no MLL rearrangement is great! Dr. Grimley was not worried that her FISH XY came back at 99.8%. This is typical for a day 100 BM as it is still hypocellular (still recovering cells) and there are other fragments in there that could still be Becca’s. In his words “the bone marrow still doesn’t have a ton of pulp at day 100.” Also this test has  a 3% error rate so anything greater than 97% is usually considered good. So this is great!
I'm still not sure what the MLL rearrangement is, but the little research I did showed that the prognosis is much worse for kids with therapy-related AML when there is MLL rearrangement.  Once we get more results or details on what these mean, I will post an update.

Thanks so much for the continuing prayers... they are surely working!  Becca is feeling great right now, and our "new normal" is shifting a bit more in the positive direction.

Oh, don't forget... if you would like to order a Becca's Believers t-shirt, let me know what sizes you want by Friday so that I can include your shirts in our order!  Long-sleeved shirts are now available :o).
TK

11.05.2012

One more dressing change!

 Becca has been riding her bike a little more often.
We were pretty impressed with the hour of trick-or-treating in the rain.
 Fun at the Kellogg's Gymnastics Tour of Champions with the Drees girls
 Ethan started out as a clown, but transformed into LMFAO!
 Indian princess Lily and her pet cheetah
My girlies at Disney on Ice (check out the hair on Becca!)

So I woke up at 4am today (time change that my body hasn't adjusted to yet) thinking that we only have to do one more dressing change!  If you've read the blog posts in the past, you know that this is one of the most painful experiences, both physically and emotionally, for Becca and the rest of us.  We dread them every week, and though Becca has gotten much better in handling the experience, it's so difficult to not cry myself.

Anyway, next Monday, Becca will have surgery to remove her central line (the external tube that they use to draw labs and give medications) and place her port, which will be under her skin.  The benefit of the port is that her own skin acts as the dressing, rather than a large sticker and biopatch that cannot get wet.  In other words, she'll be able to bathe and swim, just like other kids.  Though this may not seem like a big deal to most of you, it is huge for us.  Becca's whole way of looking at the world and what she can do has been affected by her "tubey" and the dressing that covers it.  All summer long, she was unable to swim, she has avoided activities that might get her dressing wet (even worrying when it is raining) or might pull on her lines, and she only takes a bath once a week just before her dressing change.  Now that we will be moving to labs being drawn once every two weeks or once a month, the benefits of the port outweigh the costs.  Unfortunately, when she does need to have labs drawn, Becca will need to be "poked" with a needle inserted into her port.  In the past, we tried Emla numbing cream, but it didn't really help much.  Hopefully she will again forget the pain during the time in between lab draws...

In addition to the surgery to switch her central line over to a port, Becca will have a bone marrow aspiration done to check on her marrow.  This is the first since getting her bone marrow transplant in July, so please pray with us that all looks good in there.  Her numbers have been great, so we are not expecting anything but good news.

Becca has been feeling terrific lately, and she's been doing so much more and having some stamina.  In the past week or so, she's been to see Disney on Ice and the Kellogg's Tour of Gymnastics Champions (thanks to the Dragonfly Foundation!) at the US Bank Arena, she has eaten at a few restaurants, trick-or-treated for an entire hour in cold and rainy weather (walking the entire time on her own feet), gone to a musical, spent the night and part of a day at Nanna B's farm, ridden her bike up to Denise's house, and visited the public library a couple of times.  Becca is really missing school right now, though, and she keeps asking why it's going to be so long until she can go back.  It is pretty hard to believe that she is still more than five months away from returning to JF Burns, but she has the immunity of a newborn, and there are some nasty things going around.  She will need to get all of her immunizations over again (which really stinks), but it's understandable, seeing as how she has gotten a whole new immune system following the obliteration of her own.

Becca's hair is growing every day (well... we say it grows at night), and she is loving all of the attention when we tell her how beautiful her new hair looks.  It is quite dark, which is a good thing, as she didn't want to grow blonde hair.  About a month ago, before her hair really started growing back, Becca informed me that she wanted to keep shaving her head so that we could give her hair to "nature" and the bunnies and mice would have soft nests.  I told her that this was sweet, and the animals would love that, but that she could change her mind if she wanted to.  Just last week, she mentioned to me that she might want to keep her hair for a little while and wondered  if it was okay.  It was so sweet how she asked with a little bit of a guilty look, but I assured her that "nature" can have my hair when I get it cut, and that I would ask Aunt LeAnne to save some hair so that the animals would still have soft beds.  This seemed to allay her concerns.  Her eyelashes and eyebrows are back, too, but the darkness under her eyes is still there.  The doctors said that it might take up to six months to go away, because she did so much damage to all of the capillaries in and around her eyes in July and August with all of the coughing and vomiting.  The dark eyes still bother her, and she says she's not pretty because of them, but I showed her the picture of herself when she had purple eyes from the bruising and the whites of her eyes were blood red.  Though this seems cruel to do, it has helped her understand how great she really looks right now considering all she has been through.

Even though her eating has slowed down, Becca is drinking a little more, which is important right now.  We don't want her to get dehydrated, and end up on fluids again, especially now that she is getting a port.  Her repertoire of foods is still not vast, but she is opening up a tiny bit to things that she has eaten in the past.  Becca's tastebuds seem to be working again, which she is enjoying.

Okay, I'm out of news (and energy) right now, so I will end this post.  Thanks again for continuing to pray for high counts, no viruses or infections, and smooth surgeries on Monday!  I will try to post some pics sometime this week so that you can see how great Becca looks and what she's been up to these days.
TK
 

11.02.2012

T-shirts anyone?


Lots of people have been asking to buy the awesome Becca's Believers t-shirts that were sold last spring at LES, LPS, LECC, and J.F. Burns.  I contacted the person who made them for us, and she said she can make some more. I also inquired about long sleeve ones (since it's so cold outside), and she is able to make them for $3 more.  If you are interested, here is the flyer:
Feel free to post to FB, pass along to email contacts, or make this available to people you know might wish to order shirts.

Will update the blog and post pics from Halloween this weekend... I promise!
TK

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

9.20.2012

Smiles and Giggles



video
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

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


 

9.09.2012

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

8.29.2012

An adjustment

Unfortunately, this is the first spare moment I have found since we got home on Sunday, so I'm sorry it took me so long to update you. Don't get us wrong... we are thrilled to be home!  Everybody's been asking, "Isn't it wonderful to be home?!" with excitement in their voices, and I find myself hesitating a bit.  Let me just give you a glimpse into the last sixty hours...

We unloaded the car on Sunday afternoon, and the bags had barely dropped to the floor when home care showed up for review and training.  The nurse stayed for approximately two hours, making sure that we knew what we were doing hooking up her TPN and lipids, then Ethan took off for Clifton again to pick up a bedside commode at 9:30pm.  I ran back and forth between Lily's and Becca's rooms to read books, tuck in, and assist in getting Becca to the bathroom.

While we were in the hospital last week, Becca apparently picked up a virus, which is aggravating her kidneys and bladder, causing her let out bloody urine every 15-20 minutes.  We decided that trying to move her IV pole over the carpet into the bathroom each time she needed to go would not work.  Thus, the need for the bedside commode.  It is an ugly, unpleasant, and sometimes painful condition, but not typically dangerous (otherwise they wouldn't have let her go home).  The virus is supposed to take two weeks or more to clear up.

Unfortunately, Becca (nor the rest of us) have slept well since last Tuesday, as her urge to go occurs day and night.  She really has not received more than 45 minutes of uninterrupted sleep in over a week, and she is totally exhausted.  Ethan and I have been taking turns sleeping with her to assist her at night, and I have been working, too, so we are pretty much zombies.

Monday at 1:30, Ethan and Becca had an appointment in the clinic at Children's to get Pentamidine, but they wound up getting home at 7pm with a ticked-off Becca, as she was forced to "go" in her carseat on the ride home.  Again, as Lily and I walked in the door after Lily's meet-the-teacher night, and Becca in the bathtub, home care was knocking on the door for more signing off and training.  Before that could happen, though, we had to do a dressing change, as her dressing was falling off and then wet from the bath.  Usually she despises dressing changes, but she has progressively gotten a little more tolerant of them.  That night was surely an exception.  We had to hold a screaming, writhing Becca down as she tried to pinch the nurse and me and kick Ethan, so that he could remove the tapes and coverings, clean the central line area, and apply a clean dressing.  Lily ran outside so that she didn't have to hear or see what was going on.  Needless to say, she was totally spent by the end of that ordeal, and she fell asleep as I rocked her in the chair.  She slept for 30 minutes, and we were excited about that, but then she woke up to go again.  Becca wanted to go right back to sleep, but we still had a fight ahead of us to get nine syringes of oral medications in her.  Let's just say it ended with us saying, "Well, we'll ask Nurse Linda to give us a shot of your medicines, then..."  We decided to hold off on her TPN and lipids overnight that night so that she had more of a chance of sleeping for longer bits of time.

Tuesday was a bit better.  Ethan tethered Becca to her TPN and lipids, using the nifty and much more portable backpack instead of the IV pole.  They didn't have to head to the hospital, so it was nice to just hang at home, and they even made cookie dough together.  Ethan spent a large portion of the day organizing the abundance of medical supplies, medications, and "stuff" we will be using.  Luckily, we won't be entertaining anytime soon, because our dining room now looks like the Pyxis at the hospital.  If you know Ethan, you realize he's not the most organized person, so it was cute to see that he had so thoughtfully planned out where things belong and what is most functional. He had also cleaned the bathroom, counters, and floors in the kitchen several times during the day, which is also unlike him.  All of this on not much sleep is pretty impressive.

Becca was really uncomfortable and itchy in her lower region last evening, screaming that she didn't want to be her again.  It is so heartbreaking to hear her say that, and I feel so helpless.  I wish I could take all or at least some of the pain away.  She was in so much pain that she was even ready to try taking a pill (one that would help her have some relief from the BK virus, but that she has resisted in liquid form because it looks like blood).  Ethan tried to help her swallow the pill, but it was a complete disaster.  Becca has never taken a pill, and the debacle ended in her spitting the pill across the room while laughing.

Today we are at the hospital for a bone marrow aspiration and biopsy, and they just finished giving Becca platelets.  Ethan and Becca will come back tomorrow for IVIG.  Will post more later!
TK

8.26.2012

Headin' home

The docs gave us the "go ahead" for discharge today, though they want to boost Becca's platelets before we leave.  We're hoping to be home in the early afternoon, and boy, are we excited!  Becca and Ethan will go back to the clinic tomorrow at 1:30 for a follow-up.  Thank you for continuing the prayers for Becca's healing!  I will write more later... I have to pack!!! TK :o)

8.22.2012

Sisters reunited

After several weeks apart from each other, Lily was able to visit with Becca at the hospital tonight.  Ethan and I teared up as they gave their first hugs to one another, and there were lots of giggles in the room tonight.  Nurse Amanda even came in to (jokingly) tell us that it was much too loud... they were setting off the noise monitoring traffic light in the hallway. Becca ate several of the Chick-fil-A nuggets and drank the lemonade we brought (man... we're gonna need to buy some stock in that place - that's three days in a row!).  We ventured down to the gift shop for a quick outing, then Lily and Becca played Connect Four, and we rounded out the evening with a family game of UNO.

It was fabulous to see Becca so positive and see her spirits lifted.  I think Ethan's optimism and pushing to get out of the hospital on Sunday is really motivating Becca.  She says she's feeling good, and I kept telling her how good she looks (which only made her smile and hug me more).  I asked her if she was happy that she would get to come home soon, and she grinned.  Last week, she didn't believe that she would ever be able to go home and stay there.  Becca's getting up out of bed more, and getting out of the room a few times during the day (OT, PT, walks, and private play time in the playroom thanks to Amy). Ethan has talked her into taking some of her IV meds as oral medications, explaining to her that it will allow us to go home sooner.  Even though Becca still doesn't enjoy taking oral medicine, she's being a great sport about it and doing what needs to be done.  Ethan is wonderful about prepping her for things that will happen or that need to be done and using calming words.  I guess you inherit some of that in a family full of psychologists...

On rounds this morning, Ethan mentioned to the doctors that he knows they are counting on the middle of next week for discharge, but he's going to fight for Sunday.  At that point, one of the doctors said that they don't discharge patients on Sundays, and Ethan replied with, "Uh, yeah, you do."  One of the docs who has gotten to know us pretty well looked at that doctor and told her, "He's been around... he knows we do."  It's not like they were trying to hide the fact that they do, but the current attending's service ends on Sunday, so we think they just don't want to hang around to fill out discharge papers.  I guess you had to be there or to hear Ethan tell the story, but I was chuckling on the other end of the phone.  Ethan's pretty determined when he feels strongly about something, and it was great to hear the excitement in his voice today when he started getting the process moving by having the continuous flow lowered on Becca's pain pump, some oral medications replacing IV meds, and training from home care on what we need to do.  What a wonderful advocate he is for Becca!

 Believe it or not, Becca looks so much better here than she has in weeks!  If you've ever 
gotten a hug from her, you know that she gives the best hugs in the entire world...
The girls wanted to cuddle, since that's something they don't get to do very often these days.  
It was pretty adorable!


Please continue to pray that Becca's counts continue to go up, up, up, and that her body shows that it is ready for the transition to home... I know her mind and heart would love to be there!  TK

8.21.2012

YEAH BABY!!!!

100% engraftment!!!!!!  Well, all the hard work, nasty chemicals, and general hellishness has not been for naught.  The Docs are using the "D" word pretty freely (as in discharge).  We are starting to wean her off the narcotics and transitioning some of her IV meds to oral in preparation of going home.  At this point we are optimistic about mid next week; between you and me, I am thinking this weekend looks possible.  At home she will still be getting some IV fluids and nutrition to help keep her strong while she is getting used to resuming her diet of chicken nuggets and strawberries.  I am a bit worried about her coming home right at the start of the school year when all the little vectors of infections and disease are in one place trading germs like Pokemon.  Unfortunately Lily would not be a good candidate for home school and would miss out on all the life and social skills one learns on the bus, not to mention the basic survival skills from the lock down drills.  Becca, on the other hand, is more likely to be on the other end of a lockdown situation given the right amount of steriods.  EK

8.20.2012

Out and about

Becca's counts are still heading in the right direction!  They sent off an engraftment test today, and we should have the results by tomorrow evening or Wednesday morning.  We want to have a 98% or better to earn an "A" or "B," and below 50% is considered a failure of the transplant.  Please join us in praying for 100% (yes, I'm a perfectionist, especially when it comes to this!).

We were able to venture out of our room for a short walk today.  This is the first time Becca has left her room since July 16 (except for one trip to radiology).  I pushed her in a wheelchair, and she brought along her Becca American Girl doll with matching nightgown, slippers, mask, and bracelet.  It wasn't the smoothest journey, as I had to take her IV pole with six pumps and loads of dangling wires and tubes while steering the wheelchair and opening doors, but we did it.  Becca and I actually went down to the end of the hall on the BMT side (our first time down there), then we circled around to head over to A5S to see if we could find some of our favorite nurses.  Though she wasn't really talkative, and she was hesitant to go out at first, I think she enjoyed it.

The other good news is that it is looking like we might be talking about discharge in the next couple of weeks.  No promises, of course, but Dr. Grimley is on service next week, and we hear he is the least conservative of all of the attendings.  We still have some loose ends to tie up, though.  Her liver and kidneys are improving, but they are still not where they need to be.  They want another ultrasound later in the week.  Her ANC needs to be over 2000, and she is only at 870 today.  He would like Becca to be off TPN (the liquid nutrition she receives through her line), but he said she could still be on it at home if she had to.  Finally, she needs to be off the pain pump in order to go home.  This week and next week we will work on switching over to as many oral meds as we can.  Though she will still receive IV products once we go home, the docs would rather she take as many things orally as possible.

In terms of eating, Becca is getting really interested in food again and hungry.  The problem is that things taste differently because her tastebuds have been pretty much obliterated by the chemo.  The only things she's finding that taste good right now are cold and sweet/sour... namely lemon and cherry Italian ices and orange sherbet ice cream.  We keep trying other things, but everything just tastes bland to her.  Maybe we'll try some lemonheads or sour patch kids - yuck!  Hey... they are calories anyway.
TK

8.18.2012

Looking Up

You will be pleased to know that I have no major complaints to air in this post.  You will be more pleased to read that almost everything I write is pleasant and positive.

Becca's eyes are improving daily. You are now able to discern some patches of the white in her eyes, where only a few days ago there was only dark red.  The bruised "Uncle Fester" eyes are also much faded.  The swelling of her face and around her eyes is lessened, and she is almost able to fully open her eyes.  Her overall visage is still not so hot but is much improved from only a few days ago.   Pain is still a familiar companion for her, but it has moved out of her hips and legs and is more in her gut.  The belly pain is most likely a result of her swollen liver and is usually kept tolerable by her pain meds.

Most importantly, her blood is looking good!!!  She has been showing steady growth and improvment in her labs, and is sporting an ANC over 900 and a falling Bili.  She is doing very well on paper; in person she would tell you differently.  We have been trying to reassure her that even though it is difficult for her believe right now, that someday she will feel good again and will want to play, and that she will not always feel sad and tired.
EK     

8.15.2012

Engrafting

Well, I'm going to give the bad news first so that I can end on a positive note.  It turns out that Becca does have VOD after all.  Supposedly, it is reversible, and three days of high dose steroids (methylprednisolone) should placate her liver by functioning as an anti-inflammatory agent.  An ultrasound with doppler of her liver on Monday morning showed the portal flow reversal the docs mentioned.  While we are quite concerned about her liver, we are also worried about her state of mind while she is on steroids.  Those of you who have followed the blog for quite a while know Becca's relationship with steroids and her tendency to get "roid rage."  Needless to say, Ethan immediately asked for a consult from psychiatry when he learned of the plans to put her on high dose steroids.

The team of docs decided to kind of blow Ethan off and chose to put Becca on Zyprexa (the drug they gave her the day of the bone marrow transplant) without consulting with psych.  As many of you know, Ethan does not like to be ignored, so he used some of his contacts to get a pretty rapid response from the psych department.  Their opinion was that IV Haldol would be a good option.  It is an antipsychotic drug, and it should be helpful in combating the side effects of the steroids for Becca.  Zyprexa would have had to be given orally, and we are struggling to get any oral meds in Becca right now.  We are lucky to get one dose of anything in her each day. In addition, if the Zyprexa didn't work, the docs would not be able to switch her to Haldol later.  Ethan's timing and persistence are again (hopefully) saving the day.

I'm writing to you currently from the recliner in the bathroom, since I have been banished to this spot by Becca.  She is mad at me for some reason or another and vehemently told me to go away and close the door.  Unfortunately for me, whenever something or someone hurts her, she immediately blames it on me (not sure why)... but I'm trying to have a thicker skin.  She would not let us get her weight this afternoon, because that was something she had control over.  I tricked her into getting on the scale around 10:30pm, though, telling her that if she didn't get weighed, they would need to give her the "pee medicine" (Lasix).  Maybe that's why I'm in the bathroom...

Becca's had a lot of pain the past few days, mostly in her hips and back, so they have upped her pain meds. She is also very uncomfortable with the added weight, as well as itchy.  Another mean trick that the steroids are pulling is that she is all of the sudden hungry.  When she hasn't eaten in about two weeks because of the mucositis, and she turned down all of the foods here or anything else I offered to get her, she finally yelled at me to stop asking.  After we got her weight, she had trouble going back to sleep tonight, because she told me she couldn't get comfortable.  We tried and tried to readjust her pillows, etc., but she broke down crying, saying "I don't know what to do... I can't get comfortable!"  I had a feeling it was the steroids making her feel this way, so the nurse gave her a bolus of Dilaudid, and she drifted off to sleep watching Ariel sing.

The good news is that Becca's cells are engrafting!  We have seen her white blood cell count increasing little by little this week, and she now has an ANC that is trending slowly upward.  Once that gets to 500, they will send off an engraftment test to see what percentage of her cells are engrafting.  She's still in the double digits, though, so it might take a little time.  We are also seeing signs of improvement in the appearance of Becca's face and mouth, which is where the cells go first to heal.  She had two tiny mouth sores under her tongue, and they are now gone.  Her deep purple (black) eyes are now a lighter purple, the bruising is moving down her cheeks, and there is actually a tiny skin-colored area surrounding her eyelids again.  I'm also seeing a bit of white in her eyes again.  I don't want to speak too soon, but I think Becca's coughing fits are decreasing, too.  We'll see what tomorrow brings...
TK

8.12.2012

Monocytes in sight

Well Becca still looks like hell and feels about the same.  The best way to understand how she looks and  feels is to envision Uncle Fester (from the Addams Family), bed-ridden with a very bad flu.  It is pretty hard to look at her, but when nothing crummy is going on, she is still able to maintain her sweet disposition.
We got our tiny first glimpse of engraftment today.  Monocytes are becoming apparent in her blood work, as well as sporting an ANC of .08 and WBC of .1.  While the latter numbers are nothing too terribly exciting at this point, it is better than looking at a column of zeros like we have been for quite a while.  We are currently waiting for rounds this morning to feel out the docs' reactions/interpretations of the lab results, but we are expecting a bit of a positive spin.  Her liver numbers are slightly down but still elevated, and I am sure that a repeat ultrasound is going to be discussed to ensure that she is not developing VOD.   So keep the corks in the Moet et Chandon A Epernay, Champagne Dom Perignon Brut Millesime, Vintage 1996.  EK






8.09.2012

The valley

"Only if you have been in the deepest valley, can you ever know how magnificent it is to be on the highest mountain."
-Richard Nixon

Well, I think hope we are in the valley!  Becca is feeling miserable right now.  The mucositis combined with her cold have produced an abundance of powerful coughing and vomiting in the last few days.  I explained earlier that the blood vessels in her eyes broke, causing the whites of her eyes to be blood red.  Now, she has a really swollen face/head/neck, two dark purple eyes, and some newly broken capillaries on her cheeks.  Her eyelids are so puffy that it's difficult to tell when her eyes are open.  They are merely slits, and she's having trouble seeing as a result, which makes it challenging to watch movies (the only thing she wants to do right now). As her mom, it is extremely heart wrenching to see Becca in so much pain and looking so broken.  It's a good thing that she doesn't realize how she looks, because she wouldn't be able to handle it.

We had a pretty big scare today.  Of course we were last on rounds, which didn't happen until after 1pm, and the docs were concerned about Becca's bilirubin level.  It was elevated yesterday and was even higher today.  Dr. Mehta said that they are concerned that she might be developing VOD (Veno-Occlusive Disease) and they wanted to do an ultrasound to check her liver.  When Becca was 2 1/2 years old, she ended up with VOD as a result of one of the types of chemo she was given.  Here's the post regarding that http://beccakniskern.blogspot.com/2009/04/new-disease.html so that I don't need to repeat the information.  Needless to say, Ethan and I spent the day petrified that she has again developed VOD, and that this time it would be much more serious.

After a three-hour-long ultrasound in radiology with Becca screaming, the good news is that she doesn't have VOD!  This brings much relief to us.  Now they still need to figure out how to get more fluid off of her; the Lasix isn't working.  Since we were admitted on July 13, she has gained almost eleven pounds.  That's a TON when you're just over 3 1/2 feet tall and you've put on about 20% of your weight. Becca is extremely uncomfortable, but the way to get the fluid off of her is to force her to urinate more.  They are planning to double her dose of Lasix, and she'll get it a half hour after Diuril.  Unfortunately, this entails her getting out of bed, where she just wants to sleep off the pain, so that she can go to the bathroom constantly.

In addition, Becca has become febrile, so the doctors are adding on another antibiotic.  The fevers give her chills, make her skin extremely sensitive, and cause her to be quite mean.  It's not her fault, and I try not to take it personally, but I'm the type of person who internalizes conflict.  My stomach has been in knots all day today.

The pain medication that Becca has been receiving through her PCA pump is not really doing that much to help control her pain right now.  "The pain whisperer" (Ethan's nickname for the main "pain team" doctor) told us that oftentimes kids at this point become immune to particular pain medications, and they need to switch them to a new one.  Today they will start giving her Dilaudid instead of Fentanyl.  Let's hope this works, because she tells me that it doesn't help when she pushes the button on her pump.

Becca got platelets this morning, as they were only at 12.  Her threshold is 20, which means they try to keep them over that number.  Her afternoon labs showed that her platelets were only 5 (even after the platelets she got this morning), and her hemoglobin is low, too.  This evening, she'll be getting pre-meds of Tylenol and Benadryl, platelets, Vancomycin, red blood cells, and Lasix, in addition to all of the other meds she normally gets.  I sure hope we have a good night nurse who is adept at juggling!

I was a nervous wreck today.  Boy... this BETTER be the valley!
TK

8.05.2012

Spoke too soon

Well, almost immediately after posting to the blog the other night, Becca started vomiting up blood.  As Ethan said, it's never a good sign on the show House when this happens, and I agree.  It scared Becca immensely to see the dark red liquid in the barf bucket, which didn't help matters any.  Her platelets were low, so she received them during the night.  Unusually, Becca slept in until 10am yesterday and kept having coughing fits upon waking due to the mucositis.

Perhaps the largest shift I noticed yesterday was in Becca's spirits... she was quite down and almost looked defeated.  Though she wanted to watch a movie when she woke up, she turned on her side and just stared at the rail of her bed.  When Dr. Grimley came in to examine her and noticed how badly she was feeling and how depressed she looked, he told her that this was not going to go on forever... she would feel better and get to go home to her sister and mommy and daddy soon.  She shook her head, not believing him.

Becca asked to go to sleep again around 2pm, and she slept fitfully for a while.  My girl was back around 6:30pm, though!  She woke up, wanting to play UNO... imagine that.  We played four long games filled with giggles, splitting the wins, then played a game of Old Maid.  Cackling could be heard when we exchanged the Old Maid card a few times and finally when she won.  Becca smartly refused another game, as that might damage her winning record.      

Thanks to my wonderful friend Timmiera, we were able to watch some old Muppet Show episodes before Becca wanted to go to sleep around 10.  Unfortunately, she woke up vomiting blood again shortly after and received platelets again during the night.  The docs have decided to raise her threshold for platelets now, and they will give her more when her level is below 50 (she's been staying in the teens and 20's even after transfusions).

The good news is that Dr. Grimley says Becca's organ function looks outstanding, and that's what his main concern is after such intense chemotherapy.  He says the mucositis is a "mild annoyance" (easy for him to say!), but it will heal quickly once her cells start to engraft.  When Becca complained about her mouth hurting last evening, I did notice some redness and irritation under her tongue.  I'm hoping this isn't the beginning of mouth sores.

On another note, I need to mention what a terrifically sweet husband I have.  Though he is still feeling really sick, Ethan felt bad about me being "stuck" at the hospital for a few days straight and cooked me a steak and mushroom dinner with corn on the cob at 2am this morning.  He was planning on coming back to the hospital today to stay with Becca, and has the table set with fresh flowers and a bottle of wine, along with the yummy plate of food in the fridge.  I told him he is not allowed to come back yet (he still has a hacking cough and drainage), and Dr. Grimley nixed his plans to wear a mask and gloves to come down for an hour so that I could go eat the dinner with Lily.  Plan B is that he and Lily are headed down in a bit to drop off the meal, but they will not even enter the BMT unit.  My tummy is growling thinking about it...
TK

8.03.2012

On-track

Becca's not exactly at the top of her game right now (well, except for her UNO game), but she is doing amazingly well.  Many kids at this point in their treatment are sleeping for twenty hours a day, have sores coating the insides of their mouths, need loads of pain medications, and continuously vomit.  Becca is not there, thank goodness.  Though she is not eating or drinking, she is still managing to get her one oral medication in each day, as well as doing her mouth care, without throwing it back up.  We have told her that this is why she doesn't have mouth sores, although we're not really sure why she doesn't.

She is waking up each day around 8am and staying up until 5 or 6pm, when her body is just too tired to be awake any longer.  Becca is on a pain pump, and they have increased the doses slightly each day, due to her increasing throat pain.  She sounds like a seal when she coughs, and she is still vomiting as a result of the mucositis (but much less than earlier this week).  Platelets and red blood cells were given yesterday, and she seemed to hold onto them pretty well overnight.  Fevers chew the platelets up pretty quickly, so we're hoping that the fevers stay away.  Her liver and kidney numbers look good, but she is retaining some fluid.  The docs have given her lasix over the last two days, hoping to drain off some of the extra fluid. Becca is also now requiring some blow-by oxygen while she sleeps.  This is something that has happened with her before, because she breathes pretty shallowly when she's in a deep sleep, and her pulse-ox level dips into the upper 80s (they want to keep it in the mid- to upper-90s).  During the day, it is not a problem, and the docs aren't concerned.

As far as her disposition, you wouldn't know how sick she must be feeling by looking at her.  Becca is smiling, laughing, playing UNO (and beating everyone she plays!), and being her normal sweet self.  She gladly sits or stands up to play with OT, PT, speech or behavioral therapists, but her stamina is not what it used to be.  When she has pain, she is thankfully now beginning to press the button on the pain pump.  Before today, she was afraid it would make her fall asleep, and Becca doesn't like sleepy medicine.  The whites of her eyes are still filled with blood (which she says makes her look "evil"), but those should heal when her counts begin coming in.  Dr. Grimley told us that her pain should be peaking by the end of the weekend or the end of next week.  Once her cells begin engrafting, the mucositis will heal quickly and she will pretty suddenly feel better.  I'm hoping for the end of the weekend!

Ethan has some kind of virus, so he's banned from the hospital until there is no trace left.  We switched off days here this week, which was a nice break, and it allowed us both to spend time with both of the girls (separately).  Again, thank you to all of you out there praying for Becca and the rest of us!  I am humbled by the love, care, and generosity shown to us, and I don't know how we could do this without all of you. TK

Leg (and arm) warmers courtesy of Fancy Nancy, 
and an awesome cupcake hat knitted with love by Sandy - Becca is stylin'!

8.01.2012

wonderful parenting continues

Some humor never goes out of style, like the The Three Stooges, good ol' fashioned "low brow" slap stick.  Becca and Lily have always enjoyed the violent physical hi-jinks of Tom and Jerry and Woody Woodpecker.  So the good father that I am introduced Becca (and later Lily) to the more modern, but certainly not higher brow, incarnation of Jack-@$$.  Okay, before Child Protective Services is called, it was censored and the volume was off for the scenes that I let them watch.  Nothing brings out the deep laughs from the sweetest of little girls like watching a guy get smashed in the "no no's"  or getting covered in poop.  I knew that they would think it was funny, but nothing could ever have prepared me for the uncontrollable, doubled over, laughing and and knee slapping glee of watching this band of drug addled reprobates getting rich from willingly assaulting their genitals.   hahahaha
EK

7.31.2012

Ramping up

Becca with her new buddy "Woofy" - thanks to Great Nana's nurses at Mercy Hospital, Mt. Airy! 


So Becca's side effects of the chemo have started to come in pretty strongly, but it seems like she got away with a couple of days symptom-free following her transplant last week.  Most kids start needing a pain pump much before day +4, but Becca just started on it yesterday.  She'll be getting a steady low dose of Fentanyl, and then if she needs more, she can press a button to get an additional bump.

The docs are pretty impressed with how Becca's hanging in there and looking "robust," as they put it.  The mucositis is happening, giving Becca a croup-like cough, sore throat, abdominal pain, and lots of vomiting.  This is due to the cells dying as a reaction to chemo, and the mucosal lining of her mouth is becoming thin and sloughing off, while becoming red and inflamed.  So far she doesn't have mouth sores, which is good, but we were told to expect them.  Most kids stop eating and drinking before transplant, because of the intense pain and vomiting, but Becca just stopped eating on Sunday.  She is vomiting pretty frequently, though, and coughing a lot, but the mucositis is making the vomiting unavoidable... her belly just doesn't like all of the increased mucous, saliva, and blood, and anti-nausea meds cannot help with that.

Becca is still staying up for most of the day, and she's enjoying spending time with the PT, OT, and speech therapist in our room when they are available.  She takes it pretty personally on the weekends when none of these specialists work, though, saying with tears in her eyes, "No one came to ask me to play today."  She's spending time watching lots of movies, playing her Leapster or the Wii, doing arts and crafts, and playing card games such as UNO and war.

Ethan and I have been trying to switch off staying at the hospital this week, as Lily has really missed us (and we've missed her!), and we are attempting to remain sane.  I really enjoyed spending a whole evening and the next morning with her cuddling, watching a movie and eating popcorn, cooking dinner, and polishing her toenails and fingernails.  I know this doesn't seem like a night of "big fun" for most of you, but we are missing the simple things like this.
    
The most striking difference I noticed in Becca as I returned today (which luckily Ethan warned me about), is that she looks bad and it's difficult to look in her eyes.  Due to all of the coughing and vomiting and her low platelets (they were at only 3 this morning), she has burst blood vessels and capillaries in her eyes.  Thankfully Becca doesn't realize it, but they look like they are filled with blood.  Also, she has some petechiae on her chin and under her eyes for the same reasons.  Hopefully the platelets she got this morning will help with this.

Please, please keep the prayers coming for decreased side effects, Becca's stem cells to engraft properly, and for her counts to start coming in. TK