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Feeling Sleepy, Day 19, DI

July 20, 2009

The variables in cancer treatment are astounding. We, as a family, have ONE protocol to learn. We have a handful of drugs to remember. Yet, even for each individual child therein lie variables.

For Isa, because she is my daughter, I can see how drugs typically affect her. As an extremely observant parent, I notice more than necessary.  When she takes Vincristine she feels warm to the touch, but runs no fever.  The dex leaves her craving salty things. It may be the doxo, or methotrexate that is causing her to feel sad. Brudder noticed it this evening. He asked why she was acting so depressed.

I said, “Dude. She’s getting like tons of chemo.”

Yes, in our house we say dude, a lot! Whatever. We’re Generation X parents! Hell, sometimes we convey more in that one word than other people do in lengthy sentences. And No, I’ve not been nursing a crush on the Nicolas Cage fromValley Girl for 20 years.

Her nap could have started around 11:30 today, but she held on until after lunch. Currently I am her favorite, so she wants to be held by Mama. That changes quickly and Papa can also become her favorite snuggly, especially at naptime.

The mood she exhibits could best be describe by the word melancholy. It is hard to see a tiny little person seem so sad. Because my favorite saying,

A kid with cancer is still a kid.

doesn’t really apply to this situation. A sad kid plays a lot less, lays around more, and wants to be held. Each day, she feels warm. Her head, her palms and feet. But not continuously and not so much that she as registered a fever.

Each night she takes her medicine diligently and puts up no fighting or fits whatsoever.

Tonight, during our night-night chat, she said something about how she couldn’t get out of her crib, because she hurt too bad. The day before she was diagnosed she could only crawl because her legs hurt so bad.  Even though she remembers this now, I wonder and sort of hope that she won’t remember it when she is older.  Luckily, I just didn’t give her some kids painkiller and say, ah, it is just growing pains.  Even still I wish that we’d taken her in sooner.

There was no way of knowing what was going on.  Once she started showing symptoms she progressed rapidly, like two weeks. Before New Year’s she’d only mentioned a tummy ache… <author kicks self>

From what I understand all the parents wish this, but then I’ve also heard about kids whose blood work wasn’t bad enough and they sat in limbo for weeks without a diagnosis.

(Thanks again to Dr. Stack for her quick diagnosis. Someone should let the x-ray people know what was up. One was a friend from high school and the ct-scan nurses gave Isa treatment bear.)

When I am sad, I like to sit alone, stare off into space and listen to music while doing nothing else.  My husband may find this weird considering he has never seen me just sit and listen to music.  Usually a little bit loud so that I can hear nothing else.

What do you do when  you feel sad? Does it make you creative?

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2 Comments leave one →
  1. July 22, 2009 4:10 pm

    Yes, you can never blame yourself for when the actual diagnosis happened. When Ezra was diagnosed they re-ran his tests a few times, because it was so early there wasn’t a lot of WBC, or blasts, or any of the typical things. They had to be very sure before they told us. Seems like DI is going pretty well for Isa so far, relatively speaking.

    • July 22, 2009 4:59 pm

      Exactly! I’ve thought about that scenario too. What if I had taken her in “too early” and had to wait for a diagnosis. She was doing well, until today. I guess it comes down to no time is a good time to get a cancer diagnosis.

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