Thursday, April 16, 2009

Engraftment and Home Sweet Home

LOTS of wonderful news to share with everyone today...Max is 99% engrafted with Ellee's marrow (in other words, 99% of the cells in his body are Ellee'!) and he is starting to like Hannah Montana as a result (just kidding...I love to tease him about this all the time now). In addition, because he is doing so super phenomenally well, they are planning to discharge us on MONDAY!!! That's right...we are planning to come home in just 4 days! Woo! Hoo!

We are crossing our fingers and saying our prayers that everything continues to go well so that we truly can come home on Monday and all be together again! I have been working with a great Home Care Nurse here to learn how to give Max one IV medicine (called cyclosporine) and IV fluids over night as well as how to change the dressing and caps on his central line. You all can just call me Nurse Kristi now anytime you want! It's a bit overwhelming and scary but, I have learned that all of it becomes very do-able and actually easy with time.

Maxer is generally doing great. He definitely looks different (as you can probably notice in the attached pic). He is almost bald (some peach fuzz on his noggin) and his cheeks have really blossomed out from the steroid that he is on but, he still looks wonderful considering what he has been through. He is currently not showing any signs of what is called Graft vs. Host Disease, a serious complication that can arise if the body decides to attack the new marrow and tries to produce antibodies against it so we are hopeful that he will not have issues with that, although they could still arise over time.

Max has finally been allowed to leave him room and we have enjoyed trips to the therapy gym to play basketball yesterday and to the playroom today to play with some Model Magic and Playstation 3 (you know, the Playstation 2 in our room just isn't good enough). We have also taken some walks through the halls with his little handy dandy mask on the last two nights to stretch our legs and get a little change of scenery for Maxer.

Obviously we are totally thrilled to be heading home and are really feeling the light beaming at the end of the tunnel right now...even though it's still a pretty long tunnel. We are hopefully through the toughest part of Max's Magnificent Miles and on the road to recovery!

We credit Max's amazing response so far to many different things - Ellee's healthy and perfectly matched marrow; the unbelievable doctor's and nurses down here; our incredible extended families that have helped us through this in every way through every step; the fabulous supportive community that we have; the awesome parents we have met down here and developed friendships with; and the unending thoughts and prayers for all of us. We know that we can get through the rest of this journey with all of you behind us and have one BEAUTIFUL story to share with anyone who will listen!

Thank you for everything you all have done to make this marathon as successful as possible so far...and keep running with us as we enter into the next stage on Monday! Max's Magnificent Miles are going to be something to remember and celebrate for ever!

We love you all!

Kristi (and Matt, Max, Alex and Ellee)


  1. Hello Kristi and Max,
    That little Ellee is little but mighty! How wonderful that her marrow is working miracles for Max. Boy will she have stories to hear when she grows up. We couldn't be happier for all of you. Our prayers will continue for as long as the journey takes and beyond. Our love to all of you.
    Aunt Mary & Uncle Pete

  2. Seeing Max standing there as the elevator door opened on the 5th floor last night at the "hopitoe" (Ellee's word), was absolutely thrilling. He's ready to get back to life the way it was and we're ready to walk along with him. This blog has been wonderful at explaining the process and simplifying the dizzying array of facts and comments. A large part of the credit for Max's amazing response, however, belongs to YOU and MATT. Your never-ending love, concern and support, your maturity in the face of very challenging and emotional events and your ability to organize and understand everything has enabled little Maxer to be strong, keep hoping and maintain his unique character throughout these trying months. We're all very happy . . . and proud !

  3. Fabulous news!!! You have all earned this reward, and will be stronger for it! Anything I can do to help, just call.
    Nurse Joan

  4. That is such wonderful news! We will keep our prayers and thoughts with all of you. Please keep us updated even when you go home. Love to all of you!

    Karen Toovalian

  5. YOU ARE ALL IN GRADIBLE!!!! Keep it up!!!

    All our love...

    Such great news..we are ALL here ready to HELP..God Bless all of you...
    Bob & Carolynn

  7. Oh, how exciting!!! You and Matt have been just wonderful to include us in these uplifting reports.
    I have to put a BIG ditto on your dad's comments, you two have been such a fine example of strength and faith!! Keep up the good work and keep these great updates coming!! Karen and Norb Mayrhofer


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