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"We are what we repeatedly do. Excellence, then, is not an act, but a habit." ~Aristotle

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Thursday, February 25, 2016

Even Less Sugar: Plugging Along

It's been over a month since my last update here. Oops.

As of Ian's last MRI, the tumor seems to be stable. There COULD be a small decrease in size, but these things are minute and fluid, so we're not hanging any hats on that notion yet.



This was really, REALLY difficult, and took
us about 30 minutes. The directions had to be
explained a few times (after "reading" them
himself he started writing whatever that says
in red), and it didn't make sense to
connect the words to objects.
Sometimes we laugh, and sometimes ...
He is no longer taking antibiotics and has had his PICC line removed. Pills only! Yay! We said adieu to the hospital bed and he now sleeps upstairs. Our only remaining "help" is the shower chair, which we'll keep around for everyone's piece of mind.

We haven't quite settled into a routine yet, because last week was CHEMO WEEK! Yippeee!! and that meant a lot of sleeping.

Going forward, we will continue on an oral chemotherapy regimen of once a month, for five days, recheck via MRI, and ... it's back to the wait-and-see game.

He has finished all of his formal in-home therapies. I work with him to practice tasks dealing with memory, cognition, etc. This is some of the hardest work I've ever had to do; patiently going line by line in a child's activity book with my master's-degree-holding husband, as slowly as one teaches a child to read.



As far as daily life: 



When she's told to draw a picture,
she even DRAWS writing.
Ezra finally learned to tie his shoes. Bye-bye, Velcro! ;) He's into Crazy Russian Hacker videos on YouTube, facts about the Titanic, and Lego.

Audrey has been able to ride the bus some mornings. Praise God! She asked me in hushed tones if it was okay that she didn't go to the Daddy-Daughter dance this year; I asked if it was because she was embarrassed about her dad, and she said, "no, it's kinda... like I'm jealous?" I nodded. Yep. I get it. Heartbreaking. Self-aware. She writes and writes and writes -- thankfully she's able to escape and process in that way. I'm thrilled we have that in common.






Rachel reads, writes, cleans, naps, scrolls Facebook, and binge-watches Netflix with Ian or the family or alone (currently The Vanilla Ice Project and White Collar). Sometimes I get out and adult. I'm wading through a six-inch-deep inbox (and an email inbox of the same caliber).

Look! I made a crapt!

I was able to "people" on a women's retreat last weekend. The kids went with my mom, Ian with his, and I got a little breathing room. Many were surprised to see me there ... I guess I've been hermitting pretty hard.  (yes, I made up that word. I like it.)


Ian has a new wedding ring, thanks to the encouragement and generosity of many friends. He has been ingesting books on CD from the library and is always open to suggestions in that area. He's not as down/sad as he was as of my last entry. He maintains a sense of humor and both a "what's next?" and "this is how things are" mentality. Still, he is discouraged at what he can't do both mentally and physically ("I'm pretty much worthless."). If you've see him interact with people, however, you know that's just not true: His ministry lies in connections and care, and that hasn't been taken from him.

3 comments:

  1. Hi Rachel......this road is a long one, I can see that, but I also so many positives and I truly hope you all are able to focus mainly on those. HARD. Hard to do that and just plain the word of the day >> HARD. Don't know if you've received the books I sent. I can see you will need to go through them to pick out the simple things. I'm hoping something in there helps you both. Still praying as always and won't quit. Your strength and courage are magnificent....and gifts from God for this purpose. Thank Him humbly and soldier on. He certainly is with you. Wishing you all well.....love, Becky.

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    Replies
    1. Thanks, Becky, as always ... and that page was indeed from one of the books you sent :)

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  2. Rachel, I am so proud of you; this is a long tough road but I know that you and Ian are both strong in Lord. I still say He 'knows the plans he has for you' and those are mighty plans of ministry and a great future. God Bless each of you!

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