December 1st, 2010   9 comments

Dr Diamond showed up early this morning to talk to Amy and Grandma W.  She was quite smiley and very excited about the biopsy results.  She did confirm Charlotte had less than 1% leukemia cells compared to 4% from the biopsy after round 1.  She also confirmed that Molly was not a match for Charlotte, but did say that her continued positive response to treatment means that there are still some decisions to be made about transplant versus just more rounds of chemotherapy.  There are more questions to ask the very few experts in pediatric AML, and there will be more tests to further identify any potential bone marrow donors before the next plans will be made.  So for the next few weeks, while we wait for input from around the country, we may not have an entirely clear treatment path until the doctors finally get back together and do more talking.  We met briefly with the transplant doctor who told us about some of the risks vs benefits of a bone marrow transplant and why they were considering it for Charlotte.  It is a scary thing to hear them talk about, but we know that the doctors will make sure it is Charlotte’s best option before putting her through a risky procedure like that.

When she woke up from her nap this afternoon, she would not stop moving.  And she wasn’t moving in the stroller.  She was back to walking.  During the entire night I was home, she was barely in the stroller at all.  After a brief dinner, we decided to walk to the AFCH lobby to see the big Christmas tree all lit up.  She walked down to the lobby, then over to the UW Cafeteria for a snack.  Then she walked the entire way to AFCH, back up to the fourth floor, around one lap of 4th floor, then she and I went back to the lobby and walked around their loop a half dozen times.  She loved all of the walking.  And we were glad to get some of it in before she becomes neutropenic and has to stay within the floor halls again.

Today was a good day and we saw lots of signs of our normal little girl.  She is still taking her eye drops very well, she had a poop today (the first time in several days!), and she is very mobile and playful.  This was truly another day to be thankful for.

Posted December 1, 2010 by L. Elske in Uncategorized

9 responses to “December 1st, 2010

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  1. Great pictures lately!! So glad to hear Charlotte had a nice afternoon and evening. AFCH looks awesome, can’t wait to see you guys!

  2. Oh, it sounds like a really good day overall! I’m so glad she’s starting to act like her old self! That looks like a pretty amazing tree she’s got to visit!

  3. SWEET! Charlotte rocks! So happy to see her out and about, on her own two feet with energy!!!

  4. Sounds good again. Glad she is walking whatt a brave girl

    Joe & Sue Kaminski
  5. Wonderful pictures today! I love the “snow” on the blog too! Hang in there everyone. You have 3 rounds down, a measureably healthier Charlotte and happy doctors! Be proud of how far you and your amazing little girl have come. Love to you all.

  6. Super cute the pic with Charlotte and christmas tree! My best wishes and solidarity to the whole family, it’s a difficult way but no impossible I have an 8 years-old Acute Limphoblastic Leukemia-free super sweet girl.

  7. Love the Snow effect!!!!

  8. Thank you for encouraging the Bone Marrow donation again in today’s blog. It was really easy to get signed up online. 🙂 Enjoy the snowy day tomorrow. Hugs and prayers!

  9. I am praying for your family…all of you. I know, from a personal standpoint how this disease can wreck havoc …I can see by your posts that your family is not allowing this. I see that after these rounds of chemo your baby girl is doing better, and I believe in my heart that your positivity is helping encourage this. Please know that your little fighter is getting prayers from Texas! Prayers to all of you. ( And in case this is the actual Mom and Dad of this baby girl…yall have done amazing, the fighting that this child is doing obvioulsy has not fallen far from the tree….you all are fighting this battle and doing it with so much strength–And it is amazing and heartwarming to feel the strength through these posts) Blessings from Austin~

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