September 15th, 2011. Day +188   3 comments

Charlotte was in Day Treatment today for a dose of pentamidine.  She finished her oral cyclosporine (immuno-suppressant) earlier in the week so this will be her last dose of tubie medicine she should be receiving.  She is also now down to just one medicine a day at home which she will be on for at least another 6 months.

She had a complete meltdown today when the NA went to take CJ’s blood pressure shortly after we arrived.  She knew the poke was coming and she wanted no part of any of it so she let us know she was less than thrilled to be there.  We ended up skipping her weight and height measurement and went right to the poke.  Once her port was accessed, she calmed down pretty quickly.  Dr DeSantes was out of town so we saw Sharon (the NP) again today.  She was happy to see how well Charlotte was doing at her 6 month checkup and she made several comments about how much of a milestone this is.  She explained the blood tests CJ would get today and let us know that she was pleased with her progress.  Her CBC results came back like we hoped they would.  Her WBC is 3.7, hemoglobin 11.7, platelets 260k and she had 1860 neutrophils.  We didn’t get the results of the immunoglobulin (isolation) test back today, but we hope to tomorrow.  Her engraftment study test (how much blood in her body is Charlotte’s vs how much is being made by the donor’s marrow) won’t be back for a couple of weeks so they will let us know when they hear more.

We asked Sharon what was next.  She looked at the chart and told us that usually the next visit would be in three months!!!  We told her that we had been coming every two weeks up until now so we settled on one month.  Amy and I would feel a lot better if we got to see her numbers again in a month.  The port in her chest needs to be accessed and heparin flushed at least once every 30 days.  So once CJ starts needing blood draws more then 30 days apart, we will need to discuss surgery options to have it removed.  I am not sure we are ready for that quite yet either…

We left AFCH to head down the street a block for her eye appointment.  We were expecting a two hour visit and it ended up being over three.  Charlotte was incredibly happy and cooperative  for the eye doctors, and she didn’t even have a nap!  Her eyesight is good and the doctors noticed no symptoms of dry eye that could have been GVHD related or anything else to worry about.  They recommend seeing her again in a year unless Dr DeSantes thinks it needs to be sooner.

It was one helluva good day.  She made us so proud today.  She makes us proud every day.

Posted September 15, 2011 by L. Elske in Uncategorized

3 responses to “September 15th, 2011. Day +188

Subscribe to comments with RSS.

  1. Wow – Couldn’t ask for a better post! As a family you guys are proving you can overcome anything. Charlotte is allowed a meltdown whenever she wants – she’s deserves it and it’s no more than any other little girl does!

  2. I am so happy to see how well Charlotte is doing. Your family is such a story of strength and hope.

  3. I was thinking of you guys all day. I’m so glad to hear the appt. went well. Charlotte is such a trooper and you guys are amazing parents!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s