Friday, January 22, 2010

Clinic visit but no admission

We went to the Clinic today to have Pipers blood counts checked and hopefully admit for Chemo. But, her ANC is at 420 and it needs to be at 500 to start another round so we were sent home and told to go to our local hospital on Monday to check again and if they are up we will begin more chemo on Tuesday when we admit. After speaking with Dr B, who works as a team with Dr Lew, its been decided to skip this next dose of Methotrexate and go ahead with the next 5 days of chemo (etoposide, mesna and cyclophosomide) as closely on schedule as possible. I am not entirely sure how I feel about this. Selfishly I want nothing more than to keep Piper from feeling and going through what methotrexate has proven to do to her little body. But not at the risk of ultimate cure. I am concerned that it will not give her the attack that is necessary but the Dr's seem to think that the last dose obviously gave her enough. They think that the last dose of Methotrexate, especially because her body does not flush it out quickly, gave her all her body needs and can handle. I just pray that it is the right decision...unfortunately we are at the mercy of humans making decisions for my child's health and life. I just pray that God guides their choices and continues to work in Pipers treatments.

Life here at home is simply good. I am really working with Piper on solids, of course she has little interest in anything on a spoon but we are having small victories with applesauce and carrots. Biter biscuits and bananas are always a big hit...for licking...not biting. She got a bath tonight and for the first time in 4 months there were no tears. She idolizes Linley and lights up whenever she is in the room. Sleeping is becoming more difficult because just when we becomes accustomed to a hospital schedule we are sent home and a new schedule happens. Or while she is sick I am much more liable to rock her to sleep. Last night I put her to bed and she cried for about 30 minutes but tonight it was only about 10. Hopefully she will get used to getting herself to sleep again. A mom can dream, right???

Linley has regaled me with The Pledge of Allegiance in perfection...as well as sounding out simple words like ELF and YES. She can easily recognize her own name as well as the rest of our names in the family. Linley can also add single digit numbers. And just when I am so very proud of her she shows me that she is still very much a 4 year old by eating, yes chewing, large bites out of her styrofoam cup while I was talking to Dr. B. Brought me down a few notches off of my high horse that's for sure. Irregardless, I think that she is wonderful indeed.

2 comments:

  1. Glad you're having some luck with solids. My little guy has no interest in being spoon fed after all the meds we've given him.

    I hope she's approved for chemo soon! I know it can be a long wait sometimes.

    I can't remember where I found your blog, but I haven't seen many other infant Leukemia patients around. Here's our site if you're interested. www.caringbridge.org/visit/tylerburdick.

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  2. I will pray that the Lord will use the imperfect vessels called "your doctors" to do His perfect will. Knowing that He WILL for sure do it! :)

    Acts 2: 25
    'I saw the Lord always before me.
    Because he is at my right hand,
    I will not be shaken.
    26Therefore my heart is glad and my tongue rejoices;
    my body also will live in hope,
    27because you will not abandon me to the grave,
    nor will you let your Holy One see decay.
    28You have made known to me the paths of life;
    you will fill me with joy in your presence.'[e]

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