A little bit of normal…

15 Aug

Lenox just Getting to be Lenox: the last few days have been a real reprieve from the “slaying” in several ways. Not only was there no chemo, but the steroids are working their way out of Lenox’s system. She still has some bursts of crazy emotions and some big meals but nowhere near like before on either count. She hasn’t lost any weight, but she does seemed to have stopped gaining. Her energy levels are getting better and these few days have been almost “normal”. Liz’s mom (nana), dad (Bam Bam) and sister Terry came in Thursday and Friday which was great. Lenox really enjoyed them here and would make jokes with her Bam Bam. When we asked Lenox who would go with her to the mall she said, “I want my NaNa to go!” and by the end she confided to me that she loved her Aunt Terry (although she was not willing to tell Terry that directly – go figure). The trip was laid-back and good to have them here. Then yesterday, Saturday, as they were heading out Liz’s sister Rose, and her granddaughter Grace (as mentioned previously in posts one of Lenox’s all time favorite people) came. They are still here. Grace has really helped embolden Lenox. They have had lots of good lively play, jumping on the trampoline, playing with Squinkies, making cupcakes, screeching on the roller coaster and even went swimming today! That was Lenox’s first time to the pool since her diagnosis and had a blast. We also had a great visit from the Burns today. Lenox really loves their family and I think was just as excited to see Kate, Kane and Tessa as to see her long-time pal Josie. Lots of roller coaster rides again,cupcake eating, etc.

One of the coolest things recently too is Lenox has been “playing doctor” with Grace and Liz, Rose and I. When we left the hospital they had given me some real medical supplies for her to play with so we had all the gear from a real visit (sans the meds and needles) She either acts as the doctor (and uses her oncologists real name ) or her super nurse Karen, or the patient and she has the others of us fill the other roles. We do everything from putting on the cream, laughing about grunting at the doctor, attaching the “toobie” doing saline, pretend taking blood etc. I think it really helped her to see it acted out in a safe non-stressful setting. I think it also let us talk more indirectly about what she experiences at a visit.

We have lots of great photos but will post those in the next few days- didn’t get them up tonight.

The Leukemiasaurus: We have our big appointment tomorrow where we hear about her risk group, ensuing protocols, etc. They will do blood work first so Lenox has to be there too. So that Liz and I have some good quality time with the doc for that conversation, Grace and Rose made the trip from Houston just to come to the appointment and hang out with Lenox. What a blessing to have them here for that! Expect a post tomorrow afternoon. (I daydream that we will show up and be told that she has surprised them and won’t need any further chemo – like a really long twisted prank got played on us. I know less likely than winning lotto…)

The Moms in the Margins: So, hmmm, was Liz Possibly having a mid-life crisis moment when she mentioned wanting a skateboard to me? I thought it was just a random comment until lo and behold in our amazon cart (yes we keep an ongoing amazon cart, don’t judge) was a skateboard. I moved it to the wish list, bought my few other items and moved on. When I mentioned to Liz that I did not buy it she seemed truly surprised. But even my not so subtle non-purchase didn’t seem to indicate that I was a little unsure. She instead at our next Target trip said “I’ll be back – I want to find knee pads for the skateboard.” I haven’t caved yet but am aghast – my fear that she will hurt herself amidst all we have going on right now will hopefully weigh in on her purchasing decisions. Although perhaps I should jump on it – who know what her next Impulse may be, something more dangerous or expensive – hang gliding, spelunking, polo, snake handling?

As for me, I am playing ostrich and keeping my head in the sand to avoid the daunting task of slogging through our first big batch of medical bills, insurance statements, etc. Ugh! A glutton for details and data at work, I am totally frozen at using those skills for this project. Am realizing how little I knew about the distinctions between co- pays, co-insurance, deductibles, etc. While ever-grateful for insurance, am surprised by what adds up as not covered. So, I will deal with it “tomorrow” …

Love to all! Keep us in your thoughts ad prayers tomorrow!

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One Response to “A little bit of normal…”

  1. Trish Morrison August 15, 2011 at 8:29 PM #

    Thanks for this Brooke. We want to keep hearing what’s happening. I especially enjoy the mid-life-crisis Liz stories! We are headed out of town. Delilah’s first trip without us and our first big trip/vacation without her. She’s headed to North Carolina with Grandma to see her Aunt while we head to Puerto Vallarta. I am freaked out about being in Mexico while she’s in NC. I’d like to set up a time to come and visit but will do so offline. I too, (HG doesn’t realize or care) have a running wish list on Amazon. No judgement coming from me. Good luck today. We continue to send good thoughts to you daily.

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