4.28.2012

Up and down


This pic was taken yesterday afternoon, when I came to stay with Becca for the weekend.  She's looking pretty good, sitting up, talking more, and giggling a lot.  She is now able to be off the monitors while she is awake, which is four less wires tethering her, and it allows for a ton more hugs and cuddling.  I really enjoyed climbing in bed with her after Ethan left so that we could watch Wall-E together while snuggling.  As Becca put her head on my shoulder, and I stroked her hair, my heart felt the happiest it has in a long time.  Those few minutes were the most blessed I've had this week.  

Becca wanted to go to bed pretty early (around 8:45), and I was exhausted, so I didn't fight her.  Unfortunately, our attempts at sleep were thwarted at every turn.  You see, Becca's body decided it needed to rid itself of extra fluid all night long, every half hour (literally), so we got up to use the bedside commode twice an hour until 6am, when we awakened for the day.  In addition, every time I helped her back in bed and got settled in my "bed," her leads would decide to lose contact and honk loudly until I jumped up and tried frantically to rearrange them and quiet the alarms.  The final element working against our sleep was the fact that our room has "the tube" running through its ceiling.  This is the transport system for medication coming up from the pharmacy, and it causes loud rattles, rumbles, and bangs at all hours.  We SO need a new room... and preferably one with an anteroom so that it's darker for Becca.

Today Becca has a little more energy, but she's looking pretty pale with dark circles under her eyes.  She is anemic, so they started her packed red blood cell transfusion a couple of hours ago.  Hopefully, this will perk her up a bit more, although the pre-meds made her awfully entertaining this afternoon.  I am savoring her giggles and loquacious ramblings, as she was so very quiet during her long stay in the ICU.

Unfortunately, the inevitable hair loss is beginning.  The last time we went through this, it didn't bother Becca at all, and I was the one who cried as I shaved off her beautiful locks.  This time, I'm worried that she is older and it will affect her self-concept a little more.  Last night, she did not seem concerned about losing her hair, and she even thought that maybe the hair fairy would bring her a lollipop.  Today, though, she confided that she didn't want to lose her hair.  Hopefully, Becca can get out of contact precautions soon so that she can see other bald children in the playroom, and she will realize that other kids here are getting chemo and losing their hair, too.  Luckily, she is not staring in the mirror at herself, so it is not a constant reminder.

On a positive note, Becca had a manicure last night, thanks to my talent and the kind donations of a crazy amount of nail polish and nail stickers.  Today, she had an arm and leg massage, courtesy of the holistic medicine department.  Becca is one of the most ticklish people I know, so I wasn't sure how it would go.  Let me just tell you that Kate was awesome, and Becca's looking forward to her coming back.  At least she's getting pampered in little ways.    



At Loveland Elementary School, they are selling really cute Becca's Believers t-shirts so that staff (and eventually students) can show support to Becca in her fight with leukemia.  If any of you friends and family would like to purchase a shirt (white shirt with pictured design), let me know the sizes, and I will place the order for you.  They are $10 each, and you can get the money to me later.

Only two weeks until the Butterfly Walk for CancerFree KIDS... an event that our family looks forward to every year!  I wasn't up to recruiting a big team or lots of donations this year, but WOW!  Our Becca's Believers team is at 62 members right now (the second largest team), and our total of donations is over $3,400 as of last night.  Thank you so much to those of you who have joined the team or donated to such a worthy cause!  A special thanks to Kelly Hundley, who is acting as team captain this year, although I will most likely be at the event.  Look for communication from one of us regarding details for the day.  There's still time left to make a difference for cancer research!  Visit http://www.active.com/donate/2012butterflywalk/TKniske1 and click on the Register for this Event link to join us, or make the appropriate selections in the Make a Contribution box, and click the Continue button.

Please cross your fingers for less frequent potty trips tonight, as well as the last dose of chemo for the month!
TK

5 comments:

Momto3awesomekids said...

Praying the potty breaks are few & far between tonight so that you both can rest! Thank you for posting the picture of Becca! She looks very perky & I am glad to see that she likes the comfort bear! Tomorrow is actually "Bear Sunday" at our church, which means that we have an opportunity to pay to name one of those little comfort bears, so we will be thinking of you all tomorrow morning. I'm glad you had some snuggle time with her. I can only imagine the sense of peace something like that brings now. Bella & I would like to get shirts. I'll message it to you via facebook & gave the money to Deb to pass along. You all continue to be in my thoughts & prayers. There is not a day that goes by that I do not think of you all & pray for you all.

Unknown said...

What a great way to cheer up a dreary day seeing you, Becca! You are as beautiful as ever! We're glad you will be getting a break from chemo for a bit.

Nancy and Bill

The OBrien Family said...

Becca, you are beautiful! The O'Briens are thinking of you and your family!

Timmiera said...

What a beauty! Love seeing that smile. Trisha, I am glad you had some cuddle time.
Prayers for fewer fluids needed as well as fewer potty breaks are coming!
Love and Light,
Timmiera

Bonnie said...

Following Becca's progress. I first heard of her through my friend, Azhand, who is friends with the owner of Shaker Run. Then I saw a post from the Lothrops (I think... or was it the Browns?) about her. Anyway, my daughter, Maya went through the very same thing last year. She also battled AML. We are home recuperating from transplant and praying for Becca and all the other kids fighting cancer right now. Your posts about lack of sleep and monitors beeping bring back a lot of yucky memories. You guys WILL get thru this! It's a long road, but soon you will be home and it will seem like just a bad dream. Hang in there guys!