Friday, May 15, 2009

Day +44: Progress & Healing

I didn't want to wait to share some great news that we got today while down at the Day Hospital...not only does Max remain 99.2% engrafted with Ellee's marrow (which means it is now THE marrow in his body and is producing his blood cells for him) but, he is making HUGE progress with his recovery. Dr. Davies decided today that his CMV level was low enough that we could go down to once a day dosing with the gancyclovir (one of the IV meds that I have been giving Max here at home twice a day since we were discharged) for the next month and then likely be done with it! In addition, she recommended switching Max from IV cyclosporine over to oral which means that we now only have to hook him up to an IV pump to give him medicine for about a hour once a day! Sure beats the 4 hours that he had to be hooked up before and really starts to give us our lives back! Max is pumped about the idea of being able to play basketball for as long as he wants in the evening with whatever willing opponent might be around (Daddy, Gaga (Matt's Mom), Papi (my Dad), Aunt Sarah, Uncle Ryan, Alex, even Ellee). Mommy could actually "get out" a bit in the evening if I wanted to and not have to worry about rushing back home to be "Nurse Kristi" and administer IV meds! WOO - HOO!

I can't tell you how good these small steps feel to all of us. These come sooner than we expected and it just makes us feel like we are getting closer and closer to the end of all this craziness...although we still have a long way to go. But, it means so much just to have this progress and to know that Max IS getting better every day!


I just wanted to bring a smile to everyone's faces again this weekend and to thank you all, again, for your continued and unending support and love. We still feel your caring arms around us and know that your prayers are being heard and answered in the best possible way. Thank you all for sharing in this journey with us and for cheering Max on! As the doctors have told him many times, he is a total "champ"!


Love,

Kristi (and Matt, Max, Alex and Ellee)


6 comments:

  1. We are so HAPPY..YEAH YEAH YEAH.....

    Such good news..
    Love
    Carolynn & Bob

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  2. Thanks and Praise for Answered Prayer!!!

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  3. Isn't it amazing how you "find" those four hours where there is something uber important.

    Probably just another small part of the self-education side of this journey.

    PS: If you're going to spend some time out on your own, I'd suggest decaffeinated - made that mistake once. Once.

    Gracias for your continued updates.

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  4. Great news!
    By the way, I love the pics of Ellee with her binky. She looks like a little doll baby!
    Go Cavs!!

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