March 4th, 2011   6 comments

Today Charlotte started receiving her upped doses of Busulfan.  Her morning consisted of several blood draws after breakfast to resend for the pharmacokinetic tests.  Then there was just a lot of playing and hall walking.  I saw Dr Diamond around noon and she asked how we were doing.  I told her the truth-that we were actually doing pretty good.  I mentioned that I was concerned about the busulfan being increased so much, but Dr Diamond didn’t seem too worried  She did agree with me that todays test results will probably come in too late to change any more doses, but she believes that she would rather Charlotte receive too much chemo than too little.  And considering too much might lead to some organ damage [further down the line], and too little would almost certainly result in not killing off all of her bone marrow [likely resulting in her bone marrow possibly reproducing leukemia cells], I will now have to agree with her.  Amy and I have agreed that we are willing to worry about future problems if it meant we would have a Charlotte to worry about in the future.

She didn’t eat too great for breakfast, but had a whole helping of spaghetti-o’s for lunch.  She had a pretty decent nap and was ready to play more.  She is really getting pretty good at using the iPad and is excellent at memory square type games.  She impressed Amy and I more than a few times today with her ability to finish the games she was playing!  She is still progressing just like a normal child, even with 4 heavy rounds of chemo under her belt.

We had a surprise visit by Dr Rivers today.  She was one of the first residents we worked with back in September when Charlotte was diagnosed.  She experienced a lot of our emotional highs and lows of AML.  She told us today that she still remembers the morning Dr Diamond told Amy we could go home from round 1.  She remembers being here when we were nervously admitted for a second round just two weeks later.  Charlotte hasn’t been her patient in many months.  She told us last fall that she found our site and she still takes the time from her busy schedule to keep up with Charlotte’s blog.  She will soon be on to bigger and better things and we wish her the very best.

Thank you to everyone for your prayers, positive thoughts and words of encouragement.  They have been working!  Charlotte is still doing as well as we could hope.  And Amy’s cousin Alison received some great news today that her chemo rounds have been having the desired effect.  Her tumors have decreased significantly in size and number.  She will still have several rounds to go, but the first few are always the most important.  And Alexis came out of ICU yesterday and today there was already talk about going home in her future.  Discharge may still be many days to a week away, but when we think about how serious her situation was only one week ago-she has fought even harder, and come so much further.  We are so proud of this little girl we never really met!  I hope Kim and Dana can start getting some real rest soon.

When I left the room tonight while Amy was reading to Charlotte.  I opened the door and CJ said “So much.  So much Daddy”.  Amy and I both weren’t sure what she meant so we asked her to repeat what she said.  “So much Daddy, so much.”  Again, we hadn’t heard this from her before so we didn’t know what she was trying to tell us.  She tried again,  “So much Daddy.  I love you so much.”  True story-and that’s a good day.

Posted March 4, 2011 by L. Elske in Uncategorized

6 responses to “March 4th, 2011

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  1. Out of the mouths of babes! So much…what beautiful words.

  2. Now you have someone who has never met any of you sitting here crying like a baby. That is one of the sweetest things I have ever heard. Those are the little moments that will get you through when you aren’t sure you can. God’s blessings to you all!

  3. so much love what a little trooper. She is a brave little girl and so are her parents. Hang in there.

    Joe & Sue Kaminski
  4. Charlotte is a smart, beautiful, fantastic little girl and what could you expect when she has both of her parents to follow. Especially love the so much Daddy, she has the humor now when it’s needed. Our prayers go out all day to all of you

    Uncle Jim and Aunt Judy
  5. Aw! I love the ending to this blog, but really the whole things sounds very positive!! Wonderful!

  6. OMG, I loved reading the “so much” part! That is so precious! I’m sure it just melted your hearts. Wonderful news about Alexis & Alison too! God is listening to all our prayers for these 3 amazing girls. What a great day!

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