More Good stuff

So once again we find ourselves in a "good position".  As most of you already know the decision has been made to bring Gracie off Cyclosporin.  This is the drug she has been on since pre-transplant, which makes her immune system compromised.  They have kept her on this drug as a response to the HLH(hemophagsytosis) that showed up again pre transplant as well as as cursor to Lymphoma.  The problem being with Gracie's prognosis is that there is no protocol, I just learned that out of the 18 cases found with her condition of children under the age of 10 (as discussed earlier) no one has ever done a high dose, radiation stem cell transplant procedure.  We are on new ground.  So when it came down to taking away the last "anti-cancer drug" it is a guessing game, but we were all in agreement that the pneumonia she just suffered was enough to make everyone scared enough to not compromise her immune system further.  So she will be "effectively" done treatment at the end of December.   "Happy New Year".
This also brings us to a stage of how do we pick up the pieces?  Gracie cannot go into a day home/daycare until Jan 2013 as she needs to start her immunisations from scratch.  I found a playgroup for immune compromised kids, however because Gracie is not vaccinated, she cannot go.   So what does someone do with a two year old, someone who has no kid experience and someone who would have a hard time filling her own days if she didn't have a two year old?  Well I now know every limerick, nursery rhyme, and bad dance move (cause yes Lori lets face it I can't dance) but it is fun to try.  It reminds me of the Friends episode of Rachele wanting to run like a supermodel and Phoebe showing her what fun running was really about.  It is frustrating that I will still have to question people like war criminals in order to see them, but I am grateful, she is here and she is dancing and singing.

I cannot end this post without saying a prayer for the Amsings and everyone else that I know who's diagnosis was not that same.  I promise you we will live life to the fullest and only waste our "no" to life on the things that don't matter.  I will say "yes" to life because of you.  Thank you for making me a better person. 

Merry Christmas Season to all....