March 23rd, 2011. Day +12, Engraftment? And Graft vs Host Disease…   7 comments

Charlotte woke up bright and early today at 8:45 and said “All done sleeping.  Watch TV.”  She was pretty happy to watch TV in bed for a little while this morning, then sat in my lap in the recliner until Grandma and Grandpa E showed up!  She quickly cheered up and wanted to play puzzles on the couch.  That was at 11am.  At 3:30, I had to pull her off the couch to get her to take a nap!  Over 4 hours of playing on the couch.  That is a good sign!  Amy took this opportunity to run to Columbus to spend some time with Molly and Grandma W.

Her rash on her body stayed the same through the night.  Her diaper area blisters have improved even more than yesterday.  I think that by tomorrow morning, she might have no evidence of any trauma down there except for healthy fresh skin.  We are also hoping to get her into the tub tomorrow for the first time since Saturday.  We need that to go well.  Her weight today actually went down .3kg from last night, so the medicine is working to get some of the fluids through her.

Charlotte’s CBC numbers showed a WBC of 0.3, up from 0.1 yesterday.  This is one of the positive signs that the doctors would watch for in relation to engraftment.  After the infectious disease team, the dermatologist resident, and Dr Diamond and the attending Dr Puccetti all took another look at her, we were told at 4 this afternoon that they wanted to start her on steroids to fight the body rash.  The Fellow that told me this didn’t do a very good job of explaining why.  We were still waiting on the blister swab results to tell us if this was viral herpes or not in her diaper area and they said those results wouldn’t be back today.  They said yesterday that if steroids were given while there was a viral infection, it could make the infection worse.  So I was pretty unhappy why we just couldn’t wait the extra day since they were giving me no more information than they had at this time yesterday.  The Fellow left saying she would have the attending physician talk to me and then I asked our trusty nurse to tell me what I was missing.  She had the unfortunate job of telling me that the doctors and nurses believe the rash to be evidence of Graft versus Host Disease, common in bone marrow transplants where the donated stem cells see patient’s body as foreign and attack it.  If GVHD shows up within the first three months post transplant, it is called acute GVHD, and can end up being very serious-even fatal in many cases.  So it is important to start early treatment and get it under control immediately.  And of course, not all BMT patients get GVHD.  In fact, Dr DeSantes said that about 60% don’t have any GVHD reaction so once again, Charlotte falls into the minority we would have rather avoided.  And acute GVHD is also more common in adults than children-Yea!  An hour later Amy called me from Columbus and said Dr Diamond had phoned to explain the situation to her as well.  So now we know.

Without a lot more information, I am left to guess that the good news is that this is about as early as they can catch GVHD, because we really didn’t even know she had engrafted until today.  We still aren’t sure-because Amy and I assumed it would be some sort of a momentous occasion, and this was not it!  And right now her GVHD seems to be attacking her skin only, which is the way most GVHD starts out.  So the doctors started her on steroids tonight.  They are hoping to see results as early as 24 hours.  Hopefully that will give Charlotte some relief as she is starting to scratch her rash more and more today.  They also believe the diaper area to be not viral herpes related now because it has cleared up so fast….so we aren’t really sure what they are thinking about that.  I know they are pleased that it is improving, but an explanation may never come.

At 9:30pm she was visited by the pediatric optician.  This guy was really great at his job.  CJ was grumpy a little bit and didn’t want to cooperate with him all the time, but he was super nice and gave us some much needed good news.  The blood spot in her eye is completely harmless, and very common in children with low platelet counts and high bleeding times which she has because of the heparin drip needed to avoid the chemo side effect VOD.  She also showed no evidence of viral herpes in her eyes so he gives her a clean bill of optical health.  He thinks that her eye irritation could very well go away with the steroids once they start doing their job so he is not recommending any further eye drops.

Her fevers have been really good today, even non existent.  Her temperature was starting to climb near bedtime (late tonight) up to 99.8, but then back to 97.7 while she fell asleep.  We are still awaiting results on the nasal viral swab from Sunday that should get us out of the isolation restrictions.

Charlotte had a good day today.  She played with Grandma and Grandpa for over four hours-never once complaining of any pain, having any fevers, or otherwise being unhappy.  Our nurse said that Charlotte is still doing better than 99% of the BMT patients she has seen before.  Amy and I were both hoping for a little graft vs host disease, because the donor’s cells could often find any remaining leukemia cells in CJ’s body and attack them, called graft vs leukemia effect.  And without knowingly having GVHD, one doesn’t know if they have the extra GVL protection.  But we also knew that acute GVHD is usually much more serious and can be a major obstacle to overcome if it gets worse.  So we are hoping and praying for the best.

Posted March 23, 2011 by L. Elske in Uncategorized

7 responses to “March 23rd, 2011. Day +12, Engraftment? And Graft vs Host Disease…

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  1. I’m happy to hear Charlotte was in such a good mood today and able to play so much! I’m hoping and praying for a less serious grade of GVHD. You are all doing marvelous, and thank you so much for keeping us all updated with everything so well.

  2. I’m so glad to hear Charlotte was feeling better today! I hope the GVHD isn’t serious and will get better quickly.
    I’ll keep praying!

  3. As usual, Charlotte exceeds expectations and is healing faster than expected! Sending up prayers for another good day, and more positive healing for the rash and fluids.

  4. Wow – talk about up & down and around! What a roller coaster of information and emotions you guys are going through. Good to hear that Charlotte is generally feeling better and playing. (And sometimes grumpy is even a good sign in little ones!!) Praying for that little bit of GVHD to get at any remaining leukemia cells but no more than necessary. With God all things are possible…

  5. Your guys are all troopers! In your blog you said that it would go from good to bad the last few days and hopefully she is creeping back to being good. You post pictures everyday so we can see her progress and glowing smile which makes my heart flutter. My favorite picture still is the one when she came home for the 1st time in the hospital and walking outside. Priceless! Can’t wait for another picture that that soon.

    Amy Birschbach Schmitz
  6. Definitely – hoping and praying for the best!

  7. Continued prayers for Charlotte!

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