June 21st, 2011. Day +102   5 comments

Today was clinic day.  And it didn’t go quite the way Amy and I had hoped.  Charlotte seemed plenty happy to be there, and her mood was very good. Dr DeSantes was very pleased with how she looked and how she has progressed so far even going so far as not wanting to see her but every few weeks.  We lowered the dose of her blood pressure medicine and also were able to cut out her anti-fungal medicine we have been giving her for months.  But her CBC numbers told a little different story.  Her WBC was down to 3.8, her platelets at 288k, but the number that surprised us and the doctors was her hemoglobin level.  It had dropped from 12.4 two weeks ago to 10.3 today.

According to Dr DeSantes, this could mean a number of things.  It may be a fluke or mistake.  It may be the result of the tapering of her steroids and cyclosporine.  It might be some sort of auto immune deficiency issue.  So Amy and I did someting we aren’t supposed to do and got a second opinion from Dr Google.com.  And found that it could mean something much more serious for CJ- it could be a sign of the cancer coming back.  We feel better knowing that Dr DeSantes must not have been too worried, because we are waiting until our clinic day next week to find out more.  So we are praying that it turns out to be nothing, but it is going to be a long week for both of us.

After the clinic visit, we stopped up to the 4th floor and got to see one of two of CJ’s primary nurses, Tracy.    Charlotte was absolutely thrilled to see her and they shared a couple heartwarming hugs in the hallway.  We still have yet to see Katy (her other primary nurse), but we will keep stopping by, hoping to get lucky.

Posted June 21, 2011 by L. Elske in Uncategorized

5 responses to “June 21st, 2011. Day +102

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  1. Sometimes the internet can be an evil thing! Think positive, you have lots of prayers surrounding you and it will work out! She has done so amazingly well, a little hiccup was to be expected.

  2. Dr. Google didn’t earn his degree for a reason! Hang in there–I can only imagine how unclear tests would be very nerve wracking. She’s a trooper and you guys are amazing parents!!!

  3. Praying!

  4. Thinking positive and going with the Drs theory of the hemoglobin level numbers being a fluke.

  5. Charlotte is in good hands! She’s being monitored so closely that any fluctuation is noticeable, good and questionable. Maybe it IS just a mistake or a result of the tapering…I know Leo told me it took awhile to get Ezra “stable” from the tapering of those drugs. Try to keep your spirits up and focus on how well Charlotte is feeling and that the Dr. isn’t too concerned. Praying for better news next week!

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