May 17th, 2011. Day +67   4 comments

I am sorry for the delay between posts.  There are only so many times I can say “Charlotte is doing great!”.  Nevermind.  I should be saying that every day!!!

Charlotte is doing great!  She has been pretty active and happy.  She has been eating and drinking good too.  She has been playing with her toys and is having fun coloring a lot.

Today was clinic day.  Amy and I usually dread these days.  We are afraid of what the blood tests will show and what the doctors will think of how she looks.  But today, Dr DeSantes thought she looked great!  He thinks we should stick to our plan of reducing the steroids next week, then again the week after that, and then one more week…so we are down to about three weeks of steroids yet.  And after the steroids are done, we can start to decrease the cyclosporine doses too.  We actually had to reduce her cyclosporine levels from 0.25ml to 0.2 ml last Friday because her levels were a little high, so we are already on the right track with that.  Amy asked him if he would be worried about the GVHD coming back after the steroids and cyclosporine levels are being dropped, and he thought the odds were generally 50/50.  But he thinks that Charlotte will be just fine.  He is now more worried about infections, which is quite common after a BMT.  Her immune system is still very immature right now, and the steroids and cyclosporine she is given to prevent/control her GVHD are actually immuno-suppressants.  So these medicines are keeping her more susceptible to colds, viruses, etc…so we need to be extra careful to keep her (and us) protected.  Unfortunately, because of how the appointment was setup today, we saw Dr DeSantes first-then the nurse came and drew her blood to send it to the labs.  We were released shortly after that and never found out her CBC results tonight.  We will have to call in tomorrow to get the numbers so I will update more then.

We also got to see Dr Diamond for a few minutes this afternoon.  This is the first time we have seen her since we were discharged.  She was pleased with how CJ has been responding.  She remembered that Charlotte’s birthday was at the end of this month and it looked like there were a couple of times where she had tears in her eyes when we talked about where CJ was in her treatment 8 months ago.  We love that about her.  She isn’t afraid to feel bad or happy for her patients.

Since September, Amy and  I have been following about a dozen blogs of children all over the states with this crappy disease.  And tonight we found out another young man (11) with AML has relapsed for the second time-only three months out of his second bone marrow transplant, and will undoubtedly lose his battle.  His doctors have said there is nothing else medically that can be done, and they gave him approximately 90 days.  We know that these moments happen to families every day, but it is never easy to read when it happens to someone we know.  Actually, we don’t really know any of these families, but we know all too well what they have gone through.  We know the fears that they faced when their child was diagnosed.  We know the pain they felt when their child cried from the disease, or the more harsh treatment.  But Amy and I are scared to imagine what they are feeling now and pray that God is walking them through this ominous journey.

Posted May 17, 2011 by L. Elske in Uncategorized

4 responses to “May 17th, 2011. Day +67

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  1. Adorable pictures of the girls. Glad to read all the positives that are happening for Charlotte. I cannot begin to imagine what you have all been going through with all the hills and valleys, I can only pray that Charlotte’s road to wellness continues to be a smooth fast lane!

  2. What wonderful news on Charlotte, and such cute little sisters. You have been through a very tough time, but can look to the future for many wonderful years, (not months) with them. A good advice that was given to me by Dr. Bob, one time when I was stressed…don’t worry about the unknown future, the Lord will will take care of that and give you the courage to face what You have to do. Charlotte being so young, her body is still building good cells and the old cells are GONE!

    Uncle Jim and Aunt Judy
  3. Praying for good numbers today. It’s great to hear that both Dr.’s think Charlotte looks great and are positive about her direction. She is strong! She is a fighter! And everything has been going in the right direction for her. Keep focusing on that. I know it’s easier said than done some days. We are all here with you hoping, praying, watching Charlotte live her new cancer-free life. She is one amazing little girl with so much love surrounding her.

  4. Great news about Charlotte!! My heart goes out to the little boy while it jumps for joy that Charlotte continues to do well. You don’t know me but I have been following Charlotte since early on in the fight. My husband does the MACC (Milwaukee Athletes against Childhood Cancer) fund bike ride every June. He is doing it again this year and is doing it in honor of Charlotte! You are an inspiration to so many!!

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