March 5th, 2011   5 comments

peanut butter and jelly for lunch. yummy!

Not a whole lot to report today.  Charlotte had another good night of sleep.  She woke up at 7:30 ready to get going.  I left at 8 to head back home and Mommy played with her this morning.  I came back at 2:30 in time to wake her up from her nap early and she really didn’t get any more sleep after that.

We got the results back from Seattle and they were not what we expected.  It turns out they are again increasing her chemo to 25 (from 20, originally 13) for the last two doses tonight.  Dr DeSantes said it was neither good nor bad that we had to make the change.  It is normal for children to process this chemo differently, and that is why they do the tests to make sure they get the right amount.  So he is not overly concerned that it will be too much, but he did say that this new dose would make her at the top of her age/size limit for busulfan.  Let’s hope this does the trick.

Grandma W showed up after naptime to spend some time with Charlotte before taking over as Molly watcher next week.  Charlotte was very very happy to see her and wanted to start playing right away.

So far though, she has been as good as we could expect.  She has not wanted to eat a whole lot today, but we think she is still holding her own.  Tonight while she was getting the chemo, she wanted to come out in the hallway.  She ended up playing soccer for over 10 minutes.  Check out the video, I think it says enough about how she did today.  She sure wore Mommy out!  At one point after I quit shooting the video, Amy asked Charlotte if she shouldn’t be getting tired.  Charlotte stopped running, looked at her and said “Um, No”  then kept on running.

She wanted to sit in the closet and play with the glow in the dark bracelets.

she started celebrating every big soccer kick with a "gooooaaaaaallll" pose!

By 2am tonight, she should be done with the busulfan.  Not only is that “one chemo down”, but she received it 4 times a day and each time it ran for two hours with a half hour flush after that.  That is 10 hours she was connected to an IV line for her chemo in a single day.  Tomorrow is the start of 4 days of cyclophosphamide (cytoxan).  The cytoxan runs once a day for an hour.  So that should be a lot less IV tubes to worry about.  She will still be on a low dose heparin drip and fluids for almost the entire day, but it will make us feel better knowing that she is not receiving chemo for 8 hours a day.

Posted March 5, 2011 by L. Elske in Uncategorized

5 responses to “March 5th, 2011

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  1. Lon and Amy, I haven’t written in awhile but I continue to visit the blog regularly and learn about Charlotte’s progress and your wonderful, resilient family. You are all very much in my thoughts and wishes. I love the soccer video! So pleased to learn that Charlotte is keeping her spirits up. Hang in there.

    Rachel Nordberg
  2. You truly have a precious daughter who is handling this terrible disease fantastically. You all are doing so well–keep it up!! Your prayers will be answered!

    Steven & Terry Licitar
  3. What a fantastic little girl, I went back and looked at the beginning and I can’t believe how Charlotte has grown, both taller and put on weight, all in her favor I would believe. That soccer game was great and think of how much exercise you got Amy, next time be sure Daddy is there!

    Uncle Jim and Aunt Judy
  4. Wow, from the looks of that video she had a terrific day! She seems to have amazing amounts of energy! I bet Mommy was exhausted! I’m impressed she’ll eat her PB&J as an actual sandwich–Allie won’t do that! Charlotte is also looking so tall!

  5. Loved the soccer video – if Charlotte was not connected to the IV and did not have the mask on one would never guess what she is going through – I’m praying this is an indication of her strength, determination and ability overcome this. It is incredible just how strong and resilant Charlotte is, and the way you both are dealing with it is truly amazing.

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