June 19th, 2011. Day +100!!   11 comments

Today was a pretty damn good day.  We celebrated Father’s day, but more importantly, we celebrated Charlotte making it to Day +100.  This is another major milestone in transplant patients.  After today, any graft vs host disease she may encounter will likely be classified as Chronic GVHD instead of the usually more severe Acute GVHD.  The first 100 days are also usually when the most infections occur as well as any serious transplant related side effects.  So simply making it to Day +100 is a pretty big deal, and we couldn’t be more proud of her and how far she has come.

This morning we decided to take CJ and Molly to the Disney Store outlet in the Dells to celebrate.  Charlotte had such a great time walking through the store, picking out some new toys for herself!  We did a little walking around and headed back home while the girls napped.

Tuesday Charlotte has another clinic day.  We hope her numbers still look good.  And we hope Dr DeSantes still feels he made the right decision having us come every two weeks.  I know it is easier for us to feel a little more normal without going in every week, but it sure will feel nice to get confirmation again on how she is doing.

Although today is day 100, CJ will still be on isolation until at least September so we have to continue to be patient and content with our new “normal.”  Since we are tapering her Cyclosplorine, every week that goes by from now on should hopefully be allowing her new baby immune system to grow and mature.  Until then, we must keep her secluded most of the time, enforce her wearing a mask when in public, wash her hands like crazy, and continue to decline visits right now.  We have to also continue to decline Charlotte her request for strawberries and blueberries (her absolute favorites).  plums are back in the stores and since those can be peeled, they are now her current love.

Thank you again for all of the love, support, and prayers!  We truly believe all of the prayers are a big reason for why we are where we are today.  And thank you all for understanding our secluded life at this time.  We miss you all so much!!

Posted June 19, 2011 by L. Elske in Uncategorized

11 responses to “June 19th, 2011. Day +100!!

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  1. Happy day 100!!!! We love you guys and are so proud of you all!!

  2. Yay for Charlotte! Yay for day 100! And Yay for there being a Disney Outlet in the Dells! Fantastic on all levels! 😉 Love to all of you!

  3. What an excellent Fathers Day present! Congratulations to Charlotte for showing she has what it takes to beat this and to you Lon for being an excellent Dad! Hopefully it won’t be too long in the future when you can bring the girls down to visit the original Disney Stores.

  4. Congratulations!!! So wonderful to hit that milestone! I will continue to pray for Charlotte knowing the vulnerability of her immune system for the first year and for no GVHD!!

  5. Glad all is going well keep checking each day for updates but know that everything is coming along fine. ot far from me from the Disney Store either. Didn’t know it was so close. God Bless.

    Joe & Sue Kaminski
  6. I’ve been out of the loop since 9 June (on vacation in Turkey!) and was eager to read the blog this morning… and very pleased to read all the good news! Hugs to all–especially Lon for being the “Best Father for 2011” and Peanut for reaching her 100 day milestone. Cheers 🙂

    Cheryl Batterman
  7. Praise God for such wonderful news! Isn’t Father’s Day absolutely fantasmagorical!!!!

  8. Yay Charlotte! We knew you could do it! And yay to mommy & daddy too for keeping you safe and healthy for these important 100 days. What a great milestone to check off. Happy Father’s Day Lon! This will definitely be one to remember!

  9. Yay! This is so wonderful. Here’s to many more healthy days ahead for Charlotte!

  10. Been wearing Charlotte’s bracelets continuously since December. Think of her every single day. So glad to hear the good news.

    Wendy Schulteis
  11. Great, great news!!!

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