April 12th, 2011. Day +32   12 comments

Charlotte had another good night of sleep and she woke up hungry.  She had a bowl of cereal for breakfast and she was ready to watch some TV.  She happily laid on the couch watching her Disney favorites and every half hour she would look at us and say “My tummy’s growling”.  That is her way of saying she is hungry.  She had more pringles, more cereal, and lots of milk today!

Her clinic appointment was at 1:30 so Grandma E came over to watch Molly while the three of us headed back to that all too familiar place…The nurse was helpful and she got CJ’s port accessed and drew blood from it right away and then de-accessed it just as quickly.  Dr DeSantes came in and took a look at her.  He seemed quite pleased with how she is doing at home.  He was happy to hear of her appetite, and her drinking has improved every day.  He even thought her rash looked better today.  Amy and I think it did too, but like we have been saying, it comes and goes throughout the day so it is so hard to tell.  He even recommended we lower her steroid dose a little bit so that is a very good sign.  He was encouraged by how much she is wanting to drink so he was going to consider lowering the amount of IV fluids she is on as well.  He would need to see the results of the blood samples though before he makes that call.  He listened to her heart and lungs and said “She sounds great!”  We can’t hear that enough.

While he was talking to us he noticed that some of her blood counts were in.  Charlotte’s WBC is up to 5.5, and hemoglobin is up to 12.3!  She also was at 138k platelets!!  I had to double check with him (Amy and I need constant reassurance) that these were ok numbers and not too high at this point.  He said her numbers were a very good thing!  He ordered a couple more blood tests to check for CMV and the engraftment study which will tell us how much blood in her body is from the donor’s marrow.  That result will take a couple of weeks, but he expects to see that all of her blood (99% is the highest they will measure to) is currently being made by the new marrow, not Charlotte’s.

It was a pretty good visit.  Charlotte shouldn’t have to be reaccessed for another month and her numbers are on their way back to normal.  We need to make sure the CMV test comes back negative as that can be very serious in immuno-compromised patients.  When we got home we got a call from the home nursing supplies company that said they heard from the clinic this afternoon and we will be starting the new, lower dose of steroids on Thursday and we will be lowering her IV fluids to run over 10 hours instead of 14 Thursday too.  So some of her labs must have come back ok.  We are expecting a cyclosporine level test result tomorrow too so it will be important to keep that number where Dr DeSantes wants it.

We celebrated the swell results by taking a nice long walk around the neighborhood late this afternoon.  Charlotte walked almost the entire way.  I would say it was at least a mile, maybe two.  She only stopped to try out her new double stroller the very last leg of the walk.  She sure had a great time and she really impressed Amy and me.  But her awesome numbers were just as impressive.

Posted April 12, 2011 by L. Elske in Uncategorized

12 responses to “April 12th, 2011. Day +32

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  1. How awesome is this news. Keep up the good work CJ and parent, too. Take another stroll during the wonderful day tomorrow before the bad weather sets in again.

    Love & prayers, Ma Kaland

  2. Wonderful news on the blood counts and a good clinic visit today! It’s so great to see Charlotte OUTSIDE and the sisters together again. 🙂

  3. What a great blog! Charlotte is looking better every day from the pictures. Keep up the fantastic job!

  4. Happy Day is right .Could not ask for much else as this Journey continues. Prays continue for all of you as reports of CJ progress makes everyone happy. As you wander around the neighborhood maybe you will see one of mommy’s daffodils pop open Hope so as I’m waiting for mine to do that one of these days soon. Of course they will pop open this weekend when the rain should come . Blessings to all Auntie Mary

  5. Fantastic news – love reading all the positives and seeing the pictures. Glad the weather is such that you can get out for walks, I’m sure it helps everyone feel and sleep better.

  6. Yes it is a truly wonderful day, when we see Charlotte out walking and with that little smirk on her face. The numbers are starting to come which makes all of us thankful, and especially her Mom and Dad. That little Molly is sure a doll.

    Uncle Jim and Aunt Judy
  7. Your news is as glorious as the sunshine!!!

  8. Prayers of thanks to God for the miraculous healing, for such a strong little girl and for giving her two wonderful and loving parents! The good news brings tears to my eyes!

  9. This is just great news. I’m so happy for all of you that each day is better. A great big thanks to Dad & Mom and the Grandparent’s. And special love for Charolle who has been a brave little girl. And a good little Molly. Smack

    Joe & Sue Kaminski
  10. What wonderful news to hear how well Charlotte is doing, and it made me smile to see her and Molly outside and in the sunshine! That little sparkle is back in Miss Charlotte’s eyes, too!! All of you are doing just great!!! Love and hugs for everyone …

    Aunt Cyndee and Uncle Earl

  11. Sounds like a GREAT day! 🙂

  12. So grateful to see you all home and that things are going well! You all are awesome!

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