May 10th, 2011. Day +60   6 comments

Charlotte has been doing really great.  We have had no major issues or concerns over the last few days.  She has been playing nicely, moving about a bit, and watching some of her favorite shows on the boob tube.  She has been sleeping great through the nights, only waking up for the occasional wet diaper, then going right back to sleep.  She has been happy during the day, and the potty training is still going pretty good.

Today was clinic day.  This was the first time in a month her port would need to be accessed, and the first clinic appointment since her PICC line was removed.  The port accessing will now be a weekly thing so she will need to get used to them again.  She cried for the first few minutes, but then settled down quickly after it was all done.  Dr DeSantes introduced CJ to his medical students as “one of our star patients”.  We had been applying her cream once a day since Thursday as we saw what we thought was more GVHD rash on her hands and feet so we made sure we had Dr DeSantes take a look.  He said we wouldn’t have to apply it anymore as the rashy area looked really good to him so that is a relief.  It would be an understatement to say that Amy and I had been pretty anxious to see her CBC numbers today.  We didn’t like her WBC or platelet count last week and we both started to worry a little bit about the cancer already making a comeback.  And wouldn’t that just be our luck to have some bad news on our anniversary (8 years today!)?  Dr DeSantes took a look at her numbers from last week too, and while he didn’t like that her platelets dropped from 180k to 130k, he was encouraged by her count today-it was up to 140k.  He said that if it had been leukemia, it would have gone down again today.  He said that these fluctuations can be normal and didn’t seem very concerned at all.  Her WBC today was up from 5.9 to 6.7 and her hemoglobin went up from 12.0 to 12.3.  So all of her numbers were up, if even a little bit.  And we are very thankful for that!!!  He was agreeable to last weeks plan of dropping the oral steroid dose today, so we have two more weeks of a lower dose, then possibly taper them again for a week, then one more lower week dose and we could be all done with them!  So from what we can see, he is still pleased with her progress and that is about all we can hope for at this time.

Posted May 10, 2011 by L. Elske in Uncategorized

6 responses to “May 10th, 2011. Day +60

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    🙂 sharon

    sharon schulteis
  2. Happy Anniversary – 8 years! I remember coming to your dinner, having missed the ceremony. I celebrate 8 years and one week of being cancer-free today! I’m looking for Charlotte to be able to say that 8 years from today. Our love to all of you….

    Uncle Dean & Auntie Sharon
  3. Happy Anniversary you two! Both of you have gone thru an extremely tough year and I am proud to know you! You both have been EXCEPTIONAL parents. But you have come out of this even stronger! There is only one thing left to do and that is to celebrate every day! It could hardly get any worse. I wonder what CJ will be when she grows up? Someone great I expect! Keep smiling ( can’t wait to see you all again, and if I am a blubbering idiot when that happens don’t be surprised )

  4. Sounds like you had a great anniversary with good news. You’ll have many more years to celebrate anniversaries and Charlotte & Molly will be there to celebrate with you! It’s just wonderful to see you all enjoying it outside.

  5. Your good news is great! And happy 8th anniversary!!! Love the photos, too. You have been so faithful to take the precious time you have at home and keeping us all updated on CJ’s days. Thank you!

  6. Love seeing Charlotte outside, and with a ball in her hands! So very happy and proud that Dr. DeSantes introduced Charlotte as a “star patient” – we all feel that way, but it’s nice to have the transplant doctor confirm it. Lots of love your way, and Happy Anniversary again.

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