November 15th, 2011. Day +249   4 comments

Today was a great clinic appt especially since Charlotte did not have to get any pokes because labs were drawn last Wednesday before her port removal.  So today was just a chance for Sharon (NP) to physically take a look and listen at Charlotte.  And for the most part, Charlotte was great and didn’t fight the exam…until she had to let Sharon look at the patches of dry skin.  Sharon confirmed that these spots are most likely GVHD and is pleased that they are controlled with the Hydrocortizone cream.  She said that the hope is that they don’t get worse and eventually just “burn” themselves out-nothing to worry about at this time.

Sharon reassured us again that although Charlotte’s hemoglobin, magnesium, and phosphate were lower again, that this is still very normal.  She said Charlotte’s kidneys are still flushing the mag and phos out, but she does not feel we need to return to supplements at this time.  Yeah!!

But do you know the most exciting news?  If Charlotte still spikes a fever of 100.4F, we will still have to call AFCH to notify them, but because she is no longer considered immuno-suppressed and her central line has been removed, we can now contact her primary physician at Dean Clinic to determine the next course of treatment.  Charlotte hasn’t seen Dr G. since September of 2010 when her first CBC results led us to St Mary’s and then AFCH.

We made an appointment to visit again in three weeks since her latest CBC is already a week old now.  And we will see the surgeon again to have him check up on her port site, which everyone thinks is looking fantastic.

We also got to see Lisa, CJ’s 4th floor NP who was by our side every time we needed her throughout the first 4 rounds and her BMT.  She was so impressed with how good Charlotte was looking and acting.  Lisa hasn’t seen her in quite a few months so it felt good to hear her say that.

And Charlotte got to visit briefly with Katy, one of her primary nurses.  They were both so happy to see each other again-it was so sweet.

All in all, it was a darn good day!!

Posted November 15, 2011 by L. Elske in Uncategorized

4 responses to “November 15th, 2011. Day +249

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  1. YES! Great news – love to hear all the positives. Have a Blessed Thanksgiving – we’ll all be giving extra thanks for the Doctors, nurses, donor and everyone that’s helped you get through this.

  2. Yeah YEAH yeah!!! What else can be said. Charlotte ( and her parents) has amazed us all, over and over and over again! Love seeing her outside, always on the move!

  3. What a GREAT clinic day. We are so glad to hear things are going so well. It is always so wonderful to hear good news. Have a very happy and blessed Thanksgiving this year, you have so much to be thankful for. We are keeping all of you in our prayers for continued good health.

    Joan

    Joan & Bob Sennhenn
  4. Wonderful news!!!!!

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