Medical help

It all started about 6 year's ago, Gracie started having major sinus issues. To date she has had a total of 6 surgeries to try to give her some what of a normal life. Two year's ago we found out she has a mild form of Cystic Fibrosis, her lung's are small, but thankful she does not have trouble with her lung's. She has been seen by the best of  doctor's and they have done everything to try to help her. Last October she had her 5th surgery, it was supposed to last until she was out of high school.  Well, this past September she had her 6th surgery, this time we found something new, she falls into a group of only 5 people in NC with this, they don't even have a name for it. It is a tumor. Dr. Clinger took it out and within 4 weeks it has already started to grow back. He has now sent us to UNC to seek the help from Dr. Senior to  look and see what he can find. We do know that she has a nasty staph infection on the right side of inside her sinus cavity. Blood work has shown  issues with her kidneys, we go to see someone about that in February. Dr. Senior has ordered a CAT scan that will be done December the 7th and she is facing more surgery. Right now a normal day for her is this....Her temperature  run's around 99 to 101 and sometimes goes to 102. She has to take pain meds for the staph pain. She is doing homeschool right now due to the fact that she can not get out of the bed most day's.  We feel somewhere there is something that has not been found, and if found she can get back to having a normal life. Everyone has asked me what can we do??? First we need prayer! I have seen the power of prayer and it works, pray like you have never prayed before! I never thought I would do this, but right now other than prayer I need help with the bill's that are coming left and right and these days I miss from work to take care of her. One of her meds is $700.00. I am a giver and this has made me humble. I prayed and prayed about this and so many have asked what can we do??? This is what you can do if you can. Thank you from the bottom of my heart!!!!!