We actually have a little sharps container. It was sent with her meds one time. My DH laughed because I was like awwww look, a little baby Sharps. It is perfect for travel. I think I will have one of her Dr's call
dcl after I get all the info. That is a great idea. There is a whole list of meds she can't have, they make her condition worse. Also, she can't have blood transfusions etc. So, that is a great idea. I think I will feel better traveling with her then. This is the first trip she has taken that isn't to a new hospital or Dr. I want her to experience life, but it is so hard. We are risking her getting sick from this trip, all the people etc. I am so scared they are going to start her on chemo again before we go. We would have to cancel or postpone then. I am trying to hold it off until after the first of the year. Next month my DD5 starts kindergarden, than it is both of their B-days, than our trip, then Christmas. Busy busy! Obviously, we will do what they think is best for her but, we are holding out for the best scenario. We spent yesterday in the hospital getting her infusion. She has a CT on thurs. to check for the tumor. Speech therapy, physical therapy & Developmental therapy weekly. Shots every other day (Acth, similar to a steroid) She has severe hypertension so she takes 2 meds for that & the poor thing can't sleep more than an hour or two by herself so she is on meds to help her sleep. I think we are booked full! No more meds!!! Everybody pray for us. No chemo before Christmas, & please don't let her get sick from this trip! ( I would feel terrible)
Oh, does anyone know for future reference, does it have to be the childs first trip to disney to go through the make a wish foundation? I hope to be able to take her back when she is older but proboly won't be able to afford it. I know to go through the oncology clinic it has to be their first trip. They also have to be older so it didn't so us any good.
Thanks everyone!