September 28th, 2010   8 comments

Charlotte had a great night of sleep and surprised Amy by sleeping until 8am.  She immediately wanted to eat and proceeded to have a great breakfast.  She continues to become more and more comfortable here and is very rarely scared of a new face anymore.  She now converses easily to anyone who enters her room and wants to know everyone’s name.

In general, today was another “slow news” day for Charlotte.  Dr. Diamond (Charlotte’s official MD) came to visit today even though she is not on the attending schedule this week.  She admits to being a “control freak” and can’t keep herself away.  Personally we love that about her.  Amy was very happy to see her as both of us have come to really trust and like her.  She is truthful with us and has over 19 years experience working at Children’s Hospital.  But what we love most is her ability to show us honest compassion and a sincere concern and desire in making Charlotte better.  She feels personally devoted to the cause as she was the Dr that told us that they were 95% sure this was ALL, the easier to treat leukemia.  She had to see our faces when she broke the news to us that she had been wrong, and that we were in for the long haul with AML.  We save most of our difficult questions for her and always anxiously await her visits.  Dr. Diamond was again all smiles with how well Charlotte is currently doing.  Although she knows that our hopes have been crushed several times in the past few weeks, she believes that right now we have every right to be optimistic that Charlotte’s leukemia will have gone into remission after this first cycle of chemo.  She states that the proof is that Charlotte’s numbers continue to be just where she wants them, Charlotte’s fevers have stopped, her pain is gone, and she is eating and being so active.  Of course we won’t know for sure until the bone marrow biopsy is completed, but we do feel cautiously optimistic again with this news.  But Dr. Diamond did explain to Amy that Charlotte’s case will be discussed tomorrow at a multidisciplinary meeting as Charlotte’s particular cancer is so rare.  She wants the feedback of other doctors to confirm we are on the right treatment course and to have ideas of what to do in case Charlotte doesn’t go into remission right away.

Before we can officially go home or do the biopsy, Charlotte’s neutrophil numbers must rise to an acceptable level.  For the past week, they have been at 0 or 10 (which is what the doctors wanted).  For a reference point, her neutrophil count on day one here was 4260.  But since the chemo has done it’s job and Charlotte is rebuilding her blood cell levels, we now we need them to rise.  Yesterday they were 60, but today dropped to 20.  Dr. Diamond had cautioned us that this often happens and is nothing to worry about.  It just extends our time here in the hospital.  Her guess is that Charlotte will continue to do this for about another week and then we can actually talk about going home for a few days !!!

Other than that, our day was spent with lots of play and walking the halls.  G & G Elske and Uncle Lyle visited that brought Charlotte to smiles.  We also started doing a treasure hunt in a hallway (we hide animal puzzle pieces for her to find).  She absolutely loves this game and it makes our walks a little more exciting again.

Here’s to another good sleep tonight, a good day tomorrow and high neutrophil numbers 🙂

Thank you for taking the time to check on Charlotte.  And thank you all for your prayers and support.

Posted September 29, 2010 by L. Elske in Uncategorized

8 responses to “September 28th, 2010

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  1. Such encouraging news for a beautiful little girl. Sleep well Elskes, and we will continue the prayers – this time for high neutrophil counts and good round table discussion for the doctors. Love you all

  2. Awesome news again today! Yea Charlotte! You are a shining star! Great job mommy & daddy for keeping things fun and normal for Charlotte(love the hide and seek game!). That is such a powerful tool in her recovery and it shows just how much strength and determination you all have. Big hugs from all of us to you.

  3. Thanks for doing such a great job on keeping everyone posted on Charlotte’s progress. She is such a little cutie! Our prayers are with all of you, we know it is NOT easy, but you are doing a fantastic job!

    Brenda & Mike Woollen
  4. Treasure hunts are the best! It’s a testament to your resilience that you all have been able to create fun moments in the midst of a tough time. It sounds like Dr. Diamond’s a keeper. How fortunate that Charlotte has a doctor who is honest and truly compassionate. Sending warm wishes that your optimism and love will continue to sustain you…

  5. Dear Charlotte –
    Thank you for letting your mom and dad share your progress. 🙂 Big news to share with you…I went on the potty yesterday for the first time ever!!! It took me a bit to figure out what the heck I was supposed to do, but I got the job done. Keep up the good work on your end. Have a fantastic day!
    Hugs,
    Avery

  6. Amy – it was so nice being able to see and talk to you today. Charlotte looked like such a little doll sleeping with her nuk and her Mickey. We hope that she will have fun with the Radio-Controlled school bus (from Dave Lau) – going up and down the halls. You and Lon are the absolute best parents that Charlotte could have. God bless the three of you. Much love from us. Sharon

  7. Cool idea with the treasurer hunt! That’s really thinking outside the box!

  8. The hairs are standing on my arm. I’m so happy to hear such encouraging news. We will continue to pray every night for your beautiful Charlotte and another good day tomorrow.

    Kelly and Jason Kelderman

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