ODE TO JOY

For those of you who are worried...don't be!  MRI results are in & we were not worried of what it would show, or not show.  We were prepared to see swelling and tumor breakdown...which there is!  Right now the main tumor is breaking down and has some holes in it.  There is a lot of swelling below it-due to boosts of radiation & breakdown.  The tumors above look as if totally gone, but she moved so on most slides nothing is there, but they cannot say absolutely, because when you move during an MRI, it clouds the view.  There is absolutely no spread, growth or anything in her cervical spine or brain.

Today Calli performed with the One Voice Handbell Alumni Choir in a wedding.  They really did terrific, considering they just saw the music last week for the first time, and  rehearsed the songs only 5 times!  I will post a video of ODE TO JOY- my favorite of the day!

She is quite exhausted still :)  Each day she is fighting back throwing up.  We are really trying to get her to eat as much as possible, but nothing is appetizing when you feel sick! Blech!  I have been trying to give her supplements and vitamins, and seed oils to stimulate her adrenal glands and give her some sort of nutrients.  We learned the hard way after several tries, that she has to eat something substantial before even trying to keep the pills in her stomach! 

She is quite determined though...Friday morning, just as we were leaving to go to Bell Choir, she got sick, and lost all of her vitamins and breakfast.  She recovered and was determined to still go to bells.  We were only a little bit late :)

We were given a very nutritious and organic protein  drink from a friend & she actually likes it! It is called ORGAIN.  So far, she likes chocolate and vanilla, and the first ingredient is NOT sugar :)

So far, I have collected 34 bags for CHOP dads & moms!  Thank you to those who took time out and effort to help some others.  Aidan and I made 30 ourselves too. On Monday, I will take them all down and give them to the Child Life Workers on the Oncology Inpatient unit to give to the parents that are there now.  THANK YOU! I am hoping that some people would want to make the NO SEW fleece blankets for the kids :)

Here is part of ODE TO JOY that they played today :)  Calli is second one in :)