March 3rd, 2011   2 comments

Charlotte let us sleep in until about 7:30 this morning so that felt great.  She woke up happy and ready to play.  She had a little breakfast and then Daddy left to go home and try his hand at some home improvements…that is another story in itself….but thanks to Matt for all of his help.  We couldn’t do this without him.

So Mommy said that she was pretty good today, though she is already showing signs of the steroid dex side effects.  She is very sassy and uncooperative a lot of the time, and it is usually aimed at Mommy.  She can often be just fine if Mommy happens to step out and leave her with a nurse.  She will be playing nicely with the nurse until Amy returns, then she gets her nasty attitude back.  Though it is hard to put up with, we need to remember that this helps keep the fevers and worse chemo side effects away.

We had some other news today.  Her test results came back from Seattle, and it shows that her body is metabolizing the Busulfan rather quickly so they need to up the dose quite a bit.  She was receiving 13mg per dose and they will have to increase that to 20.  Dr DeSantes was not expecting that much of an increase and he may be worried about giving her too much so he is ordering the blood tests again after tomorrow mornings increased dose.  They will send that back to Seattle and hopefully they will get the results before it is too late to make any further adjustments.  This is the one that can cause organ damage with too much so I hope they get it right.

She saw her hospital buddy today for the first time in almost two months.  CJ was a little apprehensive with her until about 5-10 minutes left in her visit then started to warm up.  Hopefully next time goes better.

She napped good, and went to bed easily tonight.  Another day…another few doses of chemo down.

Posted March 3, 2011 by L. Elske in Uncategorized

2 responses to “March 3rd, 2011

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  1. Amy, I think you need to get out for a spa day!!! I’m with my two girls all day, and I am often on the receiving end of nastiness. Then, the next moment, one of my kids out of the blue will tell me they love me. That somehow makes it all worth it. Let’s hope Charlotte will level out the effects of the steriods and the personality you know will return. We are all praying that they can get the right dose of the Busulfan!!

  2. Good days and bad will be coming. But if it works that is all we asked for. Sorry Amy I know it hurts when she takes it out on you. But she still is very strong and hope she can handle what ever it is. God Bless

    Joe & Sue Kaminski

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