Archive for March 2013

March 31st, 2013. Day +751.   3 comments

I’m sorry for the tardy post.  It has been a busy few weeks.  After Charlotte’s appointment earlier this month, Amy and I took the girls to an indoor waterpark in Wisconsin Dells to celebrate and get away for a DSC05072little while.  The girls both had a great time.  It was so nice to see them both running around and splashing like all of the other guests.  We took Charlotte and Molly to the Build-A-Bear Workshop and The Disney Store Outlet and let them pick a few of their favorite things out, not like they needed any more stuffed animals or toys!  It was a nice couple of days of relaxing and being normal.

I wanted to write quickly and ask you all for a few prayers.

Austin just got back home from his transplant and is at day +31.  He is doing great and we continue to pray for the best.

Jeremy Kong, the boy I mentioned in October with another rare form of AML, has relapsed only 100 short days after his transplant.  They are trying another round of chemotherapy and perhaps another transplant if that is successful.  But for now, it is more heartache and uncertainty for his parents.

And my Uncle Dean-my father’s only brother and my Godfather, has come home from the UW hospital with hospice care.  He has fought hard against MDS and AML and he has been an inspiration to us all!  He and Sharon and Kim and Bill have done so much for Charlotte and our family since we started this journey.  We ask that you pray for him and his wonderful family in this very trying time.

Posted March 31, 2013 by L. Elske in Uncategorized

March 7th, 2013. Day +727. “Perfect, perfect.”   8 comments

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Molly is now the same age Charlotte was when she was diagnosed. Talk about PTSD!!!

Today was Charlotte’s clinic appointment (24 months post transplant).  It is common around clinic time for Amy and me to be extremely on edge and very nervous.  I doubt we are ever going to not feel this way, but hopefully it will get easier with time.  Charlotte was much better today for her blood draw.  She kept telling us how she was going to be a brave girl, and she really was.  She still cried and was genuinely not happy, but she didn’t scream or kick or fight this time like she had done the previous couple of visits.  As a result, she settled down much more quickly and she was back to playing again in no time.  Amy and I were both moved to tears at how much she has matured.

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Charlotte ready for bed.

Dr Diamond was very pleased with how she looked and her CBC numbers were “Perfect, perfect.”  Her WBC was 7.5, Hemoglobin was 12.2, platelets were 285k and she had 3370 neutrophils.  If they’re good enough for Dr Diamond, they are good enough for us.  Dr DeSantes even popped his head in our room and talked to us a little bit and he was also very happy to see how well she has been doing.  We couldn’t have asked for a better team of doctors to treat our little girl.  Dr Diamond said that Charlotte is now at a point in her recovery where we should be less concerned with relapse and more concerned with the long term effects she may encounter from her harsh treatment/conditioning.  It was very welcome news, but Amy and I aren’t the type of people who will forget about the magnitude of relapse.

 

Charlotte during round 1 of chemo.

Charlotte during round 1 of chemo.

 

 

Monday marks the official two year anniversary of Charlotte’s bone marrow transplant.  We have been so blessed and can never thank everyone who has played a part in Charlotte’s journey-from her talented and loving doctors to her selfless donor, Erin.  And I am certain we wouldn’t be where we are at now without everyone’s help and prayers.

Thank you all so much for being such a crucial part of our story.

Posted March 7, 2013 by L. Elske in Uncategorized