Monday, March 19, 2012

Home at last.

Well we were able to come home today. The good news is that Tristan is feeling and acting much better. Bad news is that his ANC count was too low to do the Chemo as scheduled tomorrow, this also means no visitors. : (
After having a very long couple of weeks mostly in the hospital, I think we will consider this a break.
So, I am figuring out that Tristan truly is a one of a kind Rare boy. First of all Ewings Cancer is very Rare. It is diagnosed in only about 300 PEOPLE per year in the United States. Secondly the location of the tumor is very odd for this Cancer, his is in his heel, most often Ewings occurs in long bones such as the arm or leg.
Next RSV & Pneumonia after his first Chemo treatment "nearly never happens"?? Then last of my observations Low Sodium SIADH also a very uncommon not typical occurrence! I keep hearing the words "this does not normally happen", or "this is not typical".
This boy has had them all. I have now come to fear the odds and statistics that the Doctors give to me. When they say this only happens in about 10% of cases ~I am afraid!
We are going to defy all the odds anyway so bring it on! Right?

We are so happy to all be home as a family and we just hope it will stay that way until Thursday.

Wednesday they will draw blood again to see if he is well enough to start Chemo on Thursday for the 5  day treatment.
Tristan is walking around on his foot almost like normal, he has gone upstairs and downstairs with no problems. He is amazing and really loves being home especially being with his brother. He is very emotional and cried when he saw his Grandparents (it had been way too long).
Goodnight, I am off to enjoy having us all together again! : )


  1. You guys are all so courageous. Even at the very worst of times you are pulling together as a family, always putting what is best for Tristan first. I love all of the shaved heads plus one Angel Mommy.

  2. So happy you are all home :) Praying it stays that way.