A note from mom…

Emma has radiation monday through friday. It usually takes about 30 minutes start to finish. It is not painful in any way but it does take a certain amount of control and relaxation to have a mesh mask over your face and to hold perfectly still. She usually listens to an audio book and sometimes dozes off.
Emma is also on chemotherapy, the name of the drug is Tarciva it is as yet a trial drug. It is now in it’s second phase of trials and should be FDA approved by this time next year. She takes this in pill form twice a day. Once in the morning and once at night. It has to be taken on an empty stomach so we have to plan ahead for breakfasts and suppers. She is also taking an anti-nausea med before the morning Tarciva and in the afternoon.
She has had some hair loss although it’s been minor so far. Two of the side effects of the Tarciva that are rather unusual are ingrown toe nails (we clip them regularly) and long eye lashes. We check her lashes but so far haven’t seen any unusual growth.
She has had some stomach complaints as well as GI complaints, but nothing we couldn’t handle. And again I say – so far. We have read the long list of side effects and we know that any one or all of them may at any time occur. But for now we are thankful that we can handle what has happened so far!
The last and most frustrating thing is that bouncy, energetic Emma is tired. Pretty much ALL the time! And she is frustrated that she feels so tired. But there are good days when she is almost back to her bouncy old self and those are truly wonderful days!
Thank you all again for your continued prayers, love and support! It means so much to us to know you are there! Hugs to you all!

New Celebrity

Today I got to be a model for the Child Life Manual that show kids how different proceeders work, what goes on, and who usually does them. A professional photographer photographer came and he took so long getting one shot, Heather and I started making fun of him. On every shot he did about three different lightings and if he didn’t like the way someone’s hand was siting would reposition and howl new set of pictures. He was annoying and it took a long time but i got to hang out with Heather and I shore the pictures will turn out nice. This is Emma, over and out!