March 15th, 2011. Day +4   3 comments

Per her new routine, CJ slept until about 10am today.  She woke up just in time for the OT to arrive and watch her eat a little bit of Lucky Charms for breakfast.  She soon got tired of picking out the marshmallows and wanted to get out in the hall.  We played out there for about half an hour, kicking the ball and just walking around.  She came into the room and was ready for a little break.  She watched some TV and played in the room for the rest of the morning.  We gave her a bolus of morphine to settle her down a little bit and her bath went perfectly this morning.  She was in it for almost an hour.  She never complained about any pain once or tried to fight us in the process.

She napped well-Mommy had to wake her up after three and a half hours, and she wasn’t happy to be up.  She insisted on telling Amy that she

this picture was taken at 10:34pm, happily playing...

wanted to keep sleeping!  She and Amy compromised and CJ enjoyed laying on the bed another 45 minutes and watched TV.  She was happy and playful most of the rest of the night.  Dr Desantes came in and said he was pleased with how she was doing. He figured out the whole infected stem cell thing.  Our lab finally grew the culture out to a more common surface bacteria so it was most likely the needle became infected when it hit the donor’s skin.  The donor herself is probably not sick so that is good.  He says that it is not that uncommon to happen.  He also told us that because of one of the drugs she was currently getting to prevent graft vs host disease (Methotrexate), he does not expect Charlotte to engraft quickly.  Methotrexate is often used in other cancer patients as chemotherapy, but in smaller doses it can prevent graft vs host so it can also keep her counts low.  Her last dose is the middle of next week and she likely won’t engraft until after that.  Engraftment can take place anywhere between 7-21 days after transplant and he thinks it will be more towards the 14-21 day mark.  This means she will have another week or two of very low counts and is highly susceptible to getting sick or infections.  So Amy and I will have to do our best to keep her protected and safe.  She received her weekly dose of IVIG tonight and also her bi-weekly Pentamidine.

Charlotte’s numbers continue to look good.  Her WBC was 0.1 again today, her platelets went up to 45k because of yesterdays platelet transfusion and her hemoglobin was 10.0.  She is still wild at night.  It is now midnight and I know she is giving Amy trouble while they are trying to settle down and go to sleep.  So I am anticipating another late awakening tomorrow!

Posted March 16, 2011 by L. Elske in Uncategorized

3 responses to “March 15th, 2011. Day +4

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  1. Sounds like a good day all-in-all! You guys are really becoming night owls!! I hope you got to sleep in late again!

  2. It’s always great to start the day reading a good blog. I had to smile as you complain she doesn’t want to go to bed at night but sleep in the morning…she’s just preparing you for when she becomes a teenager. You two are doing great..Charlotte see’s that you get your exercise and you keep all of us informed so wonderfully. God Bless!

    Uncle Jim and Aunt Judy
  3. So glad to hear about another good day! Charlotte is doing absolutely amazing for what she’s been through, and continues to respond so well. Love & snuggles from Nebraska

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